DEVIANT THOUGHTS

Savant skills may be widespread in people with autism

2011-12-10T23:58:00.001-08:00

Savant-like skills, such as astounding memory, perfect pitch or the ability to multiply very high numbers together, may be much more common among people with autism than previously thought.A new study of about 100 adults with autism shows that one third have skills that stand out, both in comparison with their other abilities and with the skills of the general population. Previous studies put the prevalence of savantism in autistic people as around 1 in 10."People often focus on the things people with autism can't do," says Patricia Howlin of the Institute of Psychiatry at King's College in London, who led the study. "One of the things our study illustrates is that these are people who do have special skills but they are not being used."The notion of the savant – someone who has a skill that is exceptional both compared to the general population and to that person's other skills – has long captured the imagination of cognitive scientists and the general public alike. But despite this fascination, the connection between autism and savantism remains mysterious.Some studies indicate that there are more savants within the autistic population than among the general population and among the populations of people with other mental difficulties. Putting an exact figure on the prevalence of such special skills among people with autism, however, has proved difficult.Outstanding skillsIn an attempt to quantify this, Howlin's team looked at two different measures of exceptional ability in a group of people with autism – all now adults – who the team have been studying periodically since they were first diagnosed between 1950 and 1985. They found that 39 met criteria for either what they call a "savant skill" or an "exceptional cognitive skill".To identify savant skills, the researchers sent the parents of the autistic adults a questionnaire asking them to identify and describe, using specific examples, any outstanding skills and talents that were present "at a level that would be unusual even for normal people".Of almost 100 parents who replied, about half (45) claimed that their child had a special skill. But only 24 met the researchers' tough criteria for what constitutes a savant skill: both exceptional in terms of population norms and above the individual's overall level of ability.Relying on parents' anecdotal reports of skills could be risky. However, Francesca Happe, also at the Institute of Psychiatry but not involved in the study, says that the team's criteria were "pretty strict": "They didn't count anything that could conceivably be considered a normal skill. I don't think the parental reports are inflated."Searching for savantsAmong those skills considered at the savant level were: being able to name the elevation of both the sun and the moon at any time of day, on any specified date; being able to name the day of the week for any date in the distant past or future (a fairly common savant ability known as calendrical calculation); perfect pitch; and the ability to say, from a single chord, which piece of music it came from.To identify exceptional cognitive ability, Howlin's team also examined the volunteers' scores on standard intelligence tests consisting of a range of subtests aimed at different aspects of IQ, such as arithmetic, spatial and motor skills and memory span. They found that 23 had an ability on at least one of these subtests that was well above the general population's average score on that subtest.Eight of these 23 had also been identified as a mathematical or calendrical savant according to the first criteria, and the team concludes that overall 28.5% – or almost one third – of their volunteers had either a savant skill or an exceptional cognitive ability."I think it is a surprisingly high number, but believable," says Happe. She says that the study opens a window into the mind of a child with autism and recommends using these isolated, exceptional abilities as a way to motivate people with autism to learn other skills – such as social or communication ones – that might not come as easily.One in ten?Darold Treffert, a psychiatrist based in Fond du Lac, Wisconsin who studies savants, says that he sticks by an earlier estimate of the prevalence of savantism as being one in ten among people with autism. This is based on previous studies and backed up by his own observations.He says this is partly because he is mistrustful of parental reports, and partly because he does not think that the peak ability in the intelligence subtests qualifies someone as a savant. "Some autistic savants do well on IQ subtests, but not all autistic persons who do well on IQ subtests are savant."But he says the study is interesting, because it underscores the failings of IQ tests to measure overall intelligence."We are all made up of a series of intelligences, especially the savant, and IQ measures one component," he says. "Savants starkly challenge our definition of 'intelligence' and require us to look for ways to measure other 'intelligences'.""We need a more reliable definition of savant syndrome, and a more reliable definition of intelligence," he adds.

Skating mom helps son with autism soar

2011-07-17T02:47:00.000-07:00

“Fiend Club,” Lyra Stephens’ roller derby persona, is a dark, fierce competitor, circling the rink fighting for the Deadutantes in bouts all over the South. She’s the captain of the team, which is part of the only derby league in Montgomery, Ala., the River Region Rollergirls.

Derby is her passion and her stress-buster. It’s fun. It’s serious, physical business. She’s willing to get hurt.

But when she’s simply Lyra, she’s also the mom of 5-year-old Sewell, who at age 2 was diagnosed with autism. Autism is a developmental disorder that appears in the first three years of life, and affects the brain’s normal development of social and communication skills. It’s now estimated that one in 110 children will develop autism.

After she enrolled Sewell in a therapeutic skateboarding clinic hosted by the A.Skate Foundation, a Birmingham, Ala.-based organization for kids with autism, Stephens realized her derby team — as committed to giving back to the public as it is to winning bouts — could help.

She organized a benefit scrimmage for A.Skate that will bring three other derby teams from the region to Montgomery to help the cause.

A.Skate, co-founded by Crys Worley, also the mom of an autistic son, gives kids with autism the chance to play a solo sport. For autistic kids, the social dynamics of team sports are difficult at best, impossible for most.

According to its website, the program, which travels throughout the U.S., holds clinics for children with autism at no cost to the families, gives grants to children with autism for skateboard gear, as well as promote awareness and educate families about the skateboard industry.

The Autistic Surfer

2010-05-27T14:14:00.000-07:00

Posted on: September 8, 2009 2:16 PM, by Jonah Lehrer

In the latest issue of Outside Magazine, I profile Clay Marzo, a rising star on the pro surfing circuit. In December 2007, Clay was diagnosed with Asperger's Syndrome, a mild form of autism. What's so intriguing about Clay's story is that his Asperger's isn't a hindrance or handicap. Instead, it's a crucial part of his success, allowing Clay to focus, for hours at a time, on nothing but the physics of waves and the mechanics of surfing:

Clay Marzo has been waiting all morning for waves. He's standing with his surfboard next to a NO TRESPASSING sign on the edge of a pineapple field, looking down at a remote beach on the northwest shore of Maui. There are no tourists here, because there is no sand, just a field of jagged lava rocks and a private dirt road. The tide is still too far out, so the waves are trashy. Clay hasn't said a word for more than an hour; he hasn't even moved. He's just stood in the hot tropical sun and stared silently at the sea.

The waiting ends a few hours later, shortly after 1 P.M., when the trade winds begin to blow. Clay furiously rubs his hands together, like a man trying to start a fire, and lets out a few guttural whoops. He then grabs his board and quickly descends the steep slope in his bare feet, motioning for me to follow him.

There are a few surfers in the breaks to the right, away from the rocks. Clay heads to the left, where the waves are bigger. He paddles out and starts scanning the horizon, counting the seconds between the heaving swells. After a few minutes, he abruptly turns around and points his board toward the shore. His body goes taut and he starts to push backwards. The wave is still invisible--I can't even feel the undertow--but Clay is already searching for the perfect position. And then it appears: a six-foot wall of shimmering blue. The water rises until it starts to collapse, which is when Clay pops up onto his board. He accelerates ahead of the break--his sudden speed makes the wave seem slow--and then he snaps upward, launches his board into the air, and somehow whips it around, so that he lands backwards on the disintegrating lip. For a dramatic moment, Clay looks off balance, but then he reverses the board and calmly rides the whitewash until it can no longer carry him. The wave is over. He's already looking for the next one.

Clay Marzo doesn't love surfing. Love is a complicated thing--sometimes people fall out of love--but there is nothing complicated about Clay's relationship to the ocean. For Clay, surfing is an elemental need, a form of sustenance, a way of being that he couldn't be without. He just turned 20, but he can't remember a time when he wasn't obsessed with barrels, shortboards, and the daily swell report. When there are no waves, Clay sinks into a stupor. His face takes on a sad, frustrated expression, and strangers think that he's constantly about to cry, although that's just because his light-blue eyes get irritated by the sun. When I ask Clay what he would do if he couldn't surf, he looks confused for a second, as if he's unable to imagine such a terrifying possibility. "I don't know," he says. "I guess then I would just want to surf."

In December 2007, Clay was diagnosed with Asperger's syndrome, a form of "high-functioning" autism. In recent years, as parents and doctors have begun to worry about a possible autism epidemic--a reported 1 in 150 children are now diagnosed with the syndrome--there has been an increased focus on understanding and treating its symptoms, which include impaired social interactions, difficulty with communication, and the tendency to fixate on repetitive behaviors. While Clay has many of these deficits--he's easily overwhelmed by other people and often struggles to express himself--he also demonstrates one of the distinguishing features of Asperger's: an "encompassing preoccupation" with a narrow subject. Some children with the syndrome become obsessed with 19th-century trains or coffee makers or The Price Is Right. Others will memorize camera serial numbers, even if they show little interest in photography. Hans Asperger, the Viennese pediatrician who first identified the disorder in 1944, argued that such obsessiveness can be a prerequisite for important achievement, even if it comes at a steep social cost: "It seems that for success in science or art, a dash of autism is essential," Asperger wrote. "The necessary ingredient may be an ability to turn away from the everyday world ... with all abilities canalized into the one specialty."

What makes Clay unique is that his obsession is a sport, not an abstract intellectual category. While many children with Asperger's are marked by their lack of coordination--"motor clumsiness" is a very common trait--Clay moves in the water with an uncommon grace. (His movements are much more awkward on dry land; I watched him hit his head on a car door and knock over two water glasses in the span of 15 minutes.) "Clay's kind of a surfing freak," nine-time Association of Surfing Professionals world champion Kelly Slater has said. "He's like a cat. He's got this ability to always land on his feet. Clay definitely knows things that I don't know." Clay's nickname is "the Rubber-Band Man," since he'll consistently stick maneuvers, such as his signature aerial reversal, that aren't supposed to be possible. He'll be bent over backwards, his blond hair in the water, and he'll find a way to stand up.

At the moment, Clay is one of the most celebrated surfers in the world. He already has a national surfing title and numerous Hawaiian titles; he's been featured on the cover of Surfer magazine and is a mainstay on YouTube, where one of his clips has been watched more than 100,000 times. Although Clay has yet to qualify for the ASP World Tour--a series of competitions featuring the 46 top-ranked surfers--his low ranking hasn't hindered his reputation for being world-class. Kai Barger, a fellow Maui surfer and the current ASP world junior champion, recently called Clay "the best out of all of us, and it's all natural. He never had to work at it."

But Kai is wrong. Although Clay's body appears to be perfectly designed for the sport--he has a long torso and short legs, which gives him a low center of gravity and the ability to crouch in tight barrels--his real secret is that he's always in the water. If Clay isn't surfing (and the only time he's not surfing is when there are no waves or it's a moonless night), then he's probably watching slow-motion videos of himself surfing, which he's been known to study for ten hours straight. His mom, Jill Marzo, used to be his main videographer. From the time he was seven years old, she would sit on the beach in the shade and record Clay until the camcorder battery ran out. "If I ever missed a good ride, he'd get so upset," Jill says. "He remembers every single wave. They all kind of look the same to me, but not to Clay. Those waves are what he lives for."

Jill is used to speaking for her son, since he often struggles to speak for himself. Here on Maui, I've watched him flail for words during several interviews with an ESPN news crew, avoiding eye contact and staring instead at the cameras and sound equipment. Even the simplest questions lead to awkward silences and stammers, as if Clay is terrified of saying the wrong thing. And yet, if you're able to talk to Clay when he's comfortable--and he's always most at ease in the warm Hawaiian water--he's likely to surprise you with his eloquence as he reels off one vivid metaphor after another. He describes the feeling of surfing inside a barrel as "like being inside a throat when someone coughs and spits you out." When I ask Clay what he loves about waves, he goes silent and looks away. I assume he's going to ignore my question. But then he utters a line that could easily be his slogan: "Waves are like toys from God."

New Pfizer unit to take on autism

2010-01-23T04:32:00.000-08:00

GROTON, Conn.—Diane Stephenson of Groton has three tangible reasons for wanting to know as much as possible about autism.

Stephenson, associate research fellow at Pfizer Inc.'s Groton laboratories who helped start an autism research unit there earlier this year, has two nephews and a niece with the neurological disorder, which is often accompanied by language difficulties, behavioral problems, sleep interruptions, poor eye contact and low social skills.

Her sister's son Thomas, 23, has never spoken a word. And two of her brother's children, Clarise, 5, and Craig, 2, also have been diagnosed with autism.

Autism is believed to be caused by a combination of environmental and genetic factors, but there is little doubt the disorder tends to run in families. Stephenson said couples who have one autistic child are 30 times more likely than others to have a second with the same disorder.

"Everyone wants a cure," said Stephenson, who has worked at the Groton labs for six years. "I felt there was something I could do."

So Stephenson, along with Pfizer colleague Howie Mayer, who has two children with autism, worked behind the scenes for a year with the idea of forming a separate research unit focusing on autism. They later added another colleague, Larry Fitzgerald, as the group put the finishing touches on its proposal, contacting key experts outside Pfizer who had a grasp on the latest breakthroughs in autism research.

Stephenson said science in the past year has started making significant headway in genetic research geared toward autism. While two years ago might have been too soon to start an autism unit, she and her colleagues believed they had enough science on their side to make the case late last year, she said.

Still, "Most everyone told us we were crazy," Stephenson recalled, especially since Pfizer has been in a downsizing mode lately.

But senior management quickly embraced the idea and launched the autism unit in January with 15 scientists. Fitzgerald became the first head of the unit but departed a few weeks ago while Mayer also has moved on, now working for one of Pfizer's new business units. This left Stephenson as the lone remaining founder of the group still working on-site.

"I think it's a great advance that the pharmaceutical industry is ... looking at how to address the issues related to autism," said Lee Grossman, president and chief executive of the Autism Society of America, in a phone interview. "We believe other companies will start following Pfizer's lead."

Grossman said Pfizer is the only company he's aware of that has taken the initiative to start a research unit devoted strictly to autism, a disorder that now affects 1 in 100 children, according to a new statistical analysis released just last week. Autism was previously thought to affect 1 in 150 children; a dozen years ago, the incidence was put at 1 in 500.

Currently, only one medication—Johnson & Johnson's antipsychotic drug Risperidone—has been cleared by the Food and Drug Administration for use in autistic children. But autism advocacy groups are looking eagerly at Pfizer's new model in the hopes that it can develop novel medicines to help alleviate autism symptoms—or, perhaps more important, delve into a number of its already established drugs that target neural pathways affecting autistic patients.

"Presumably, some drugs already developed could be helpful," said Dr. Michael Tranfaglia, medical director and chief scientific officer of the FRAXA Research Foundation, a Newburyport, Mass.-based organization that funds research and does advocacy work for people with a form of autism known as Fragile X.

Tranfaglia said major pharmaceutical firms like New York-based Pfizer used to spend most of their time chasing the biggest blockbusters but are now gradually coming to realize they may have a treasure trove of older drugs that could target smaller populations, such as those with Fragile X. Fragile X is a rare form of autism in which one key gene shuts down, failing to produce an important protein, leading to learning problems and anxiety, among other symptoms.

Anabella Villalobos of East Lyme, the head of the neuroscience research unit at the Groton labs, said Fragile X gives scientists at Pfizer a relatively easy early target to investigate, since only one gene is involved. Most of the autism disorders—called a spectrum because they are so wide-ranging—involve multiple genes.

"This is all a work in progress," said Villalobos, who is overseeing the autism unit on an interim basis.

Addressing symptoms

Villalobos said the long-range goal will be to prevent autism, but Pfizer plans to address short-term solutions at first. Researchers will begin by targeting symptoms that appear to cross the spectrum of autism disorders, including anxiety, agitation, sleep disorders, social deficits, language disabilities and repetitive behaviors. The idea will be to identify medications that seem to address symptoms among all or most people with autism.

A longer-range goal, she said, will be to understand the neurobiology behind the disorder so that the core symptoms can be treated. This requires the use of animal models to test medications before they are tried on humans in clinical trials.

"What is not clear is if we find medicines for the treatment of Fragile X, will it apply to the broader spectrum?" Villalobos said. "It's not one disease; it's multiple diseases."

One difficulty in developing treatments against autism is that testing on children is so problematic because of dosage and safety concerns, according to scientists. Because of this, Pfizer researchers say, initial testing most likely will be on adults with autistic disorders.

Helping Pfizer in the research process, scientists say, is the fact that several markers of autism recently have been identified. One of these telltale signs of autism is eye-tracking. While normal children tend to focus on the eyes of a face, autistic children usually look away toward the mouth. By having a baseline for how autistic children's eye tracking works, scientists can check to see if certain drugs have an effect on this behavior.

In the neuroscience research unit labs, senior scientist Edward Guilmette already is starting to target certain genes that could have an effect on autism. The effect of turning on or off various genes then is studied in mice models by senior associate scientist Sharon O'Neill, who charts changes in behaviors.

Autistic mice, for instance, might spend more time staring at an inanimate object than interacting with another mouse, O'Neill said.

"That's probably as close as we're going to get (to mimicking autism) in an animal model," she added.

Although 15 researchers may seem like a big commitment, Pfizer scientists said their numbers are small compared to the vastness of research yet to be done on autism. So Pfizer has reached out to a variety of collaborators - at the Massachusetts Institute of Technology, the Yale Child Study Center and New York University, for instance - to develop and expand on their groundbreaking work.

Right now, most of the work being done involves biology and animal studies. But as scientists develop specific small-molecule drug targets, more chemists will be enlisted to help, said Villalobos.

Examining the portfolio

For now, though, it looks as if the first Pfizer medicines targeting autism likely will come from its established drug portfolio. One possibility mentioned by the autism unit's lone remaining founder, Stephenson, is the pain medication Lyrica, though she emphasized that drug trials have yet to establish any clinical support for the hypothesis and that the company was not suggesting any off-label uses.

Dr. Tranfaglia, who has a 20-year-old son with Fragile X, is hopeful that pharmaceutical companies will now be trying to match up established drugs such as Lyrica with potential treatments for specific forms of autism.

He said finding uses for established drugs will be much less costly than the $1 billion price tag of bringing a new drug to market. Drugs currently on the market already have gone through clinical trials showing their safety, he added.

Another factor reducing the cost of developing autism drugs, he said, is that several of the spectrum disorders, including Fragile X, currently have no approved treatment, meaning companies won't have to prove to the FDA that their drugs are more effective than others on the market.

The long-term hope, said Tranfaglia and Stephenson, is to actually reverse the course of autism - an idea that would have seemed magical a few years ago but already has been shown to be possible in animal studies.

"The sooner you intervene, the better," said Stephenson.

"You can actually normalize development," Tranfaglia said. "It's entirely reasonable to think you could completely alter the course of the disease."

Obama and Autism

2009-11-14T22:55:00.000-08:00

At the presidential debates last week, Senator McCain claimed that his running mate, Sarah Palin, knows "more about autism then anyone I know." Janet Grillo in her most poignant HP piece My Autistic Son is Not a Political Pawn, invited the senator to get out there more. Janet, wrote eloquently what so many of us parents of children with autism feel. In my travels promoting autism awareness and the film, Autism:The Musical, I have met hundreds of people whom I believe know more about autism than Sarah Pallin... including my son, Neal.

Neal is my resident expert on autism. Now 14 years old, Neal was adopted from a Russian Orphanage at 23 months, and diagnosed with severe autism at age 3 . Neal is non verbal (or as we prefer to refer to him "a man of few words") so when he speaks his truth through typing - WE LISTEN.

When he was about 9 years old, he was still being placed by the school district in preschool classes. One day after being asked for the umpteenth time to put the blue round peg in the blue round hole, Neal threw the peg boards at the teacher. The school called him aggressive and severely mentally impaired, sentencing him to a restricted special education classroom. I knew otherwise. I believed he threw the pegs out of boredom, frustrated for not having his intellect recognized. I felt that he was capable of much more.

Fortunately we found Darlene Hansen, a communications and speech expert who specializes in working with children like Neal. The first day she met him, she drew a four-square grid on a piece of paper with the words: Washington D.C., Vote, Bush, Clinton.

When asked "Who is the President of the United States?" Neal pointed to Bush. "Who was President before?" He pointed to Clinton. "Where do they live?" He pointed to Washington D.C., " How did they get there?" "Vote."

Immediately, we pulled Neal out of the preschool intensive special ed class and placed him with an aide in a regular third grade classroom. Neal was then mainstreamed in most of his classes doing age-appropriate work and is acknowledged to be highly intelligent.

Neal now types his thoughts and feelings on an Alpha Smart typing machine with support. Last January at one of his sessions with Darlene she asked, ""So, Neal, what have you been thinking about lately?"

"The Elections," he typed on his Alpha Smart keyboard.

"What about the elections?" asked Darlene.

"I'm for Obama, he typed."

"Obama? Why?"

"Obama is for Autism, " he finished.

That evening my husband and I Googled Obama and Autism. And there it was, pages and pages from people with autism. Supporting Obama. We found that Obama speaks for all people who cannot speak. Who do not have a voice, literally and figuratively. How did Neal know this? I hadn't said anything to him, I didn't know myself. Somehow, some way, my son with severe autism had picked up this truth. This was several months ago when I was undecided between Hillary and Barack. Needless to say, Neal influenced my vote.

Cut to a few weeks ago. Neal refused to go to bed. This is not unlike many other teens so I did what any Mom of a stubborn 14 year old would do, I started to bribe him, chide him into going to bed. My husband, Jeff, however had a bit more insight. "Neal", he said, "It looks like you have a lot on your mind: "Would you like to type with us?"

"Yes" Neal nodded.

I immediately grabbed the Alpha Smart and placed it in front of him. "What's on your mind?" Jeff inquired.

"The President." he typed.

" What about it?" we asked.

"Obama," he responded.

"What about Obama?"

"Enough," Neal typed.

"Enough what?" I asked.

"Enough Republican ideology." Neal typed. He continued, "Pallin lies." Thank you Neal. He went to bed immediately and slept soundly through the night.

We did not. Worrying about our country's future, our son's future, the future of all kids with autism, reflecting on the past. Wanting more Obama.

We now watch the campaign and commentary together as a family every night. Neal takes it all in intensely. Last night, Neal was again troubled. We asked, about what?

"Prejudice," he typed.

"How does it make you feel?"

"Sad and mad... Obama is hope."

Thanks Neal. Thanks for clearly stating what so many of us are feeling, sad and mad. And what so many of us need. Hope.

Autistic boy to get apology from Halifax public transit

2009-09-07T04:32:00.000-07:00

David Croft demanded a public apology from Metro Transit with how they dealt with an incident involving their eight-year-old autistic son Izaak.

By The Canadian Press

HALIFAX, N.S. — The public transit authority in Halifax will issue a formal apology to an autistic boy after his family complained about a city bus driver who refused to continue driving unless the eight-year-old stopped screaming, his mother says.

But it was unclear Friday night if an apology will actually occur.

Charlene Croft said Metro Transit agreed this week to draft a written apology for her son Izaak after she and her husband David met with two transit officials.

“All parties agreed that the situation was handled poorly,” Charlene Croft said in a blog entry posted Thursday. “It will be an apology for the mere fact that this happened in the first place and that it spiralled out of control in the way that it did.”

The blog says Metro Transit has also agreed to apologize to Izaak’s day camp director and to produce tip sheets for bus drivers and passengers on how to deal with autistic behaviour.

Lori Patterson, a Metro Transit spokesperson, said Friday that transit officials did meet with the family but she didn’t refer to what the company will do as an apology.

“The meeting gave a chance for both parties to give an airing of the incident from their perspective and it went very well,” she said. “Both sides appeared to be satisfied at the conclusion of the meeting.”

Patterson acknowledged that the family asked for an apology but Metro Transit agreed to send the child a letter “acknowledging that any incident like this is unfortunate.”

She said Metro Transit still stands behind the driver’s account of what happened “but we agreed to the meeting because the parents obviously weren’t there” when it occurred.

David Croft has said his son, who he described as classically autistic with no ability to speak, was on a field trip with about two dozen autistic children and their counsellors last week when the group boarded a bus in downtown Halifax.

He said Izaak is sometimes over-stimulated by loud noises, certain smells and large groups of people.

“He doesn’t have language, so when he’s expressing frustration, it tends to come out as screams,” David Croft said in an earlier interview.

During the first five minutes of the bus ride, counsellors did their best to calm Izaak as he screamed, but David Croft said the driver complained that the piercing noise was making it difficult for him to drive.

Izaak left the bus with his counsellor and the camp’s director. The other children and counsellors stepped off a few stops later.

Metro Transit has said images and audio recorded by a surveillance camera show the driver did not ask the boy to leave the bus. Transit service officials have insisted the driver was simply doing his best to ensure passenger safety.

Charlene Croft said Metro Transit has declined to show the couple the surveillance tape.

She said the meeting Thursday was “productive and positive,” but there was disagreement over Metro Transit’s claim that passenger safety was compromised by Izaak’s disruptive behaviour.

“Developmentally, Izaak’s behaviour, social cognition and impulse control is closer to that of a toddler, rather than an almost nine-year-old child,” she said.

“Therefore … it was like asking someone with an inconsolable baby/toddler to leave the bus.”

In his own blog, David Croft challenged Metro Transit’s assertion that its driver did not specifically ask Izaak to leave the bus.

“Personally … I thought this was a semantic point because the driver had created a situation where there was little choice — due to authoritative and social pressure — but to remove Izaak from the bus,” he wrote.

“So the driver hadn’t explicitly used the words, ‘off the bus.’ (But) there are a thousand and one ways to say a thing without actually having to say it.”

Still, David Croft said the meeting left him convinced the transit authority was willing to make constructive changes to better serve those with neurological disorders.

“Although it was a sometimes emotional meeting — Charlene cried once or twice and my voice raised as I had a renewed, but brief, fury at the notion that Izaak had been on the bus for just 3.5 to five minutes total before the driver could take no more — it was also a highly productive meeting,” he wrote.

The transit service has also committed to reach out to the region’s autism community to let parents know about the Access-A-Bus program, a service that uses specially equipped buses to provide rides to the disabled.

Charlene Croft said she had been told earlier that Izaak was not eligible for the service.

However, she stressed that access to the service would not have prevented last week’s incident because Izaak was with a day camp group that regularly uses city buses to get around town.

“Parents of autistic children and autistic adults do require more resources than most, and that always puts the status quo on edge,” she said in her blog.

“But one resource that parents of autistic children need the most of all doesn’t even require tangible capital a Community acceptance and tolerance can go a very long way.”

Autism, which is also known as autism spectrum disorder, is a neurological disorder that results in unusual patterns of behaviour, difficulties with communication and social interaction.

The Autism Society of Canada says the complex disorder affects at least one in every 200 Canadian children and the number of reported cases has risen by 150 per cent in the past six years.

Autistic North Hardin student found “safe and sound” early this morning

2009-09-07T04:29:00.000-07:00

A citywide search for an autistic North Hardin High School student yielded results early Saturday morning.

Sharon Kiely, 15, was found around 12:25 a.m. behind Meadow View Elementary School, Radcliff Police Department spokesman Bryce Shumate said.

“She was safe and sound, no injuries,” Shumate said, adding she was just “tired and hungry.”

Kiely went missing early Friday afternoon from the grounds of the school after last being seen in a restroom. Shumate said police believe she wandered away from the school and do not suspect foul play. The girl has a history of hiding inside the school, Shumate said Friday, and does not verbally communicate with others.

Kiely’s disappearance led to a massive search that spanned more than 10 hours, with both police and fire departments responding from all over the county. Bloodhounds also were employed.

In addition, Louisville Metro Police sent a helicopter for additional assistance, canine units from Jefferson County were dispatched and Kentucky Search and Rescue provided aid.

At one point, Shumate continued, there were about 80 responders searching for Kiely, working from a grid map of the city. The group was divided into teams and assigned to specific areas.

“There were teams literally all over Radcliff,” Shumate said.

Shumate said a search of this magnitude could not have been possible by Radcliff responders alone.

“I’ve never seen that kind of a community effort before,” Shumate said.

Four of mother’s five children have special educational needs

2009-09-07T04:22:00.000-07:00

DEALING with one child who has autism or learning difficulties can be difficult enough.

So the challenges faced by Yvette Thibault on a daily basis are almost too tough to imagine.

The single mum, aged 37, has five children — and four of them have special educational needs.

Antoinette, aged 11, and Corbin, aged five, have autism.

Paige Autumn, aged nine, has learning difficulties and four-year-old Luca has language and hearing problems. Saerun, aged three, is being monitored but is doing well so far.

Miss Thibault, aged 37, is a full-time carer for her children and wants to raise awareness of the problems autism causes.

She said: “It’s very hard work. Nobody has a clue what I have to go through every single day.

“I’m on my own and it means I’m housebound. It’s a nightmare trying to take them all out, so we pretty much stay at home.

“It’s very stressful. Antoinette and Corbin try everything. They have no awareness of danger and I can’t leave them for two minutes.

“Luca has a fascination with windows and I’m terrified he’ll fall out of one. Antoinette is lazy and gets angry and aggressive — and I’ve got three younger ones too.”

The family, who live in Avenue Street, Heaton, get support from Bolton Council, with social services and nurses visiting them, but Miss Thibault says life is still difficult.

Autism is a lifelong developmental disability which affects the way a person communicates and relates to others around them.

Sufferers have difficulties with everyday social interaction.

The cause of autistic spectrum disorders is not clear. However, it has been established that genetics play an important role.

It is likely autism occurs when a small number of genes interact in a specific way, possibly linked to some external event or factor.

The condition is being heavily researched.

Although caring for her children is hard work, Miss Thibault says it is rewarding and she wants other parents to see it is possible to cope with children who have autism.

She said: “They drive me bonkers but I love them so much. I’m just frightened for their safety.

“I’m not giving up, I’m just looking for more help. My advice to others is to keep smiling, just keep going.”

Special ed aide inspires student hikers

2009-08-04T21:12:00.000-07:00

Hikers with autism, Down syndrome mark trail with memorable moments.

Hiking 800 feet above the azure sea off South Laguna, Louis Wallace turns around at the sound of his name and stops.

"Hey Louis, wait up," leader Anthony Palmeri shouts.

"You're a strong hiker," I yell ahead while standing next to Palmeri, a 25-year-old Mission Viejo resident and graduate of the University of California, Irvine.

Wallace grins.

"Yes I am," he hollers back, raising clenched fists in the air and striking a pose that would make a body builder proud.

It's an honest and beautiful moment in a hike filled with honest, beautiful moments. It's Saturday morning, and Palmeri has invited me along one of his weekly hikes with three young men he has come to know through his job as a special education aide at Tesoro High School in South Orange County.

Today, we're on one of Palmeri's favorite outdoor gems, a wide path called Laguna Ridge Trail that starts at Badlands Park and offers a continuous feed of magnificent views of the coast from Monarch Point.

As we head south, we pass a series of large homes on the left that hug the ridgeline high above Pacific Island Drive. On our right, there is a drop-off that could make lesser men turn to jelly. But the hikers we're with have nerves of steel. They also happen to have what some call special needs. Wallace has Down syndrome.

Andrew Dennison is next to me. His eyes sparkle like the ocean below us, and an easy smile lights up his face. A sturdy 20-year-old, his hands flutter from his stomach to his mouth and to his nose. Then they make the journey again.

Dennison, who lives with his parents in Coto de Caza and is in adult transition at Saddleback College, doesn't seem to say much. But I hardly notice. His happy countenance communicates everything.

As Wallace, 18, saunters back toward the group, Palmeri pauses to share a story of a recent trip to Las Vegas with Dennison's family. As a surprise present for Dennison's mom, Palmeri, one of Dennison's siblings and Dennison had "Happy" – "Birthday" – "Mom" hennaed across their three stomachs to look like tattoos.

Dennison punctuates the story by lifting his shirt to show off the "Mom" on his belly. He points to the nearly faded letters and beams.

Blake Bernardin, 16, is just behind. Like Dennison, Bernardin has autism and says little, but he's careful to stay with the group. I clap the Tesoro High School student on the back for being a solid outdoorsman. A tiny smile betrays his secret pride.

We start down a steep rocky trail that forks off from the groomed path.

"Which way should we choose?" I ask Wallace, a Rancho Santa Margarita resident. He studies the terrain. There is a stream of rocks in the middle. On the right, it's relatively clear save for scattered pebbles. On the left, sharp rocks poke through the ground.

"Over there," Wallace says, pointing left.

I'm impressed. Many people would have taken the path to the right – where the pebbles might as well be marbles. Buried rocks offer solid footing.

For the first few minutes of our hike, I wasn't sure how to talk around the young men. Then I remembered my days teaching Down kids to swim. Be yourself.

We make our way down the trail, holding one another's hands so we don't slip. The young men handle the sketchy section with calm and grace.

As we head back, the breeze dies down and the temperature picks up. We've been hiking more than an hour and everyone is a little sweaty, something which Bernardin mentions with some frequency.

"Try my drink, half water, half Gatorade," I offer.

Bernardin downs half the bottle It's a good reminder we all get a little cranky when we're dehydrated.

After the hike, I talk to the guys' parents. Raising any child is hard work, and these men and women, along with aides like Palmeri, are heroes in my book.

Roseann Bernardin of Trabuco Canyon shares that her son, Blake, loves swimming and riding his beach cruiser bicycle. Still, he struggles with fine motor skills and is only able to write his name.

I inquire about a scar that runs the length of her son's back and discover this teenager who navigated the tricky trail had a 45-degree curvature of the spine until an operation for scoliosis just a few years ago. Doctors inserted 23 screws and two rods. I wonder how I would have done hiking with that much metal.

Dennison's mother, Joni, reports Andrew, like most sons, loves playing video games, eating and riding four-wheel all-terrain "quads."

I mention Andrew didn't talk much during the hike, though clearly he had a great time. I'm a little stunned at what she says next.

"At 28 months, he went into his own world and stopped talking. He doesn't talk."

Reflecting back on the hike, I realize Dennison never said a word and I hadn't noticed.

His heart said it all.

David Whiting's column on people and places appears Tuesdays. He can be reached at 714-796-6869 or dwhiting@ocregister.com

Harbingers of Autism

2009-03-09T14:00:00.000-07:00

Sharon Begley

The tragedy of autism is compounded by one fact that makes desperate parents wish they could turn back the hands of time: symptoms of the neurodevelopmental disorder typically show up when a child is 2 or 3 or even older, but by then it may be too late to prevent or reverse whatever glitches in brain development (still pretty much a mystery) underlie the disease. It is even on the late side for getting a child the behavioral interventions and special education that might mitigate some of the worst symptoms.

If scientists at the M.I.N.D. Institute of the University of California, Davis, are right, however, there may be a reliable warning sign of autism much earlier: how a child plays with his or her toys at the tender age of 12 months. In particular, scientists led by Sally Ozonoff will report in the journal Autism (it’s the October issue, but not out yet; keep checking the web site), children who were later diagnosed with autism were more likely to spin, repetitively rotate, stare at and look out of the corners of their eyes at toys such as a rattle.
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There is a big research effort aimed at picking up the earliest harbingers of autism. One of the most promising discoveries came in 2003, when researchers led by neuroscientist Eric Courchesne of the University of California, San Diego, concluded that an odd pattern of skull growth might be a tip to autism, as they described in a paper in the Journal of the American Medical Association. Children with autism, the scientists found, had a smaller head circumference at birth than healthy babies, and by 6 to 14 months their head circumference was in the 84th percentile, a huge increase and greater than the rate of increase in healthy children. “The clinical onset of autism appears to be preceded by 2 phases of brain growth abnormality: a reduced head size at birth and a sudden and excessive increase in head size between 1 to 2 months and 6 to 14 months,” the scientists wrote. “Abnormally accelerated rate of growth may serve as an early warning signal of risk for autism.” Still, the correlation wasn’t perfect: 6% of healthy infants in the study also showed abnormal head growth from birth to 6 to 14 months, and 41% of babies later diagnosed as autistic did not show that pattern.

The American Academy of Pediatrics recommends that all infants be screened for autism twice before they are 2. Pediatricians look for language delays and lack of interest in people, such as not responding to their name and failing to make eye contact. But these can be present even when autism is not. The latest findings are not perfect either, but they are something parents can watch for every day rather than relying on—and waiting for—a short visit to the doctor. “There is an urgent need to develop measures that can pick up early signs of autism, signs present before 24 months,” Ozonoff says. “The finding that the unusual use of toys is also present early in life means that this behavior could easily be added to a parent check-list.”

For the study, Ozonoff recruited 66 1-year-olds; 9 were later diagnosed with autism. The children were given a metal lid, a round plastic ring, a rattle and a baby bottle, one at a time for 30 seconds each while being videotaped. Seven of the 9 later diagnosed with autism were more likely to repeatedly spin and rotate the objects. They were also more likely to look at them in unusual ways, like glancing sideways at them or staring intently at them for a long time—behaviors that were rare in babies not later diagnosed with autism. “About a third of parents notice signs [of autism] before a child’s first birthday,” Ozonoff said. “We felt that our field could do a better job at early diagnosis. Our results suggest that these particular behaviors might be useful to include in screening tests. The earlier you treat a child for autism, the more of an impact you can have on that child’s future.”

The Vaccine Dilemma: Many families, some fearing autism risk, choose to avoid children's immunizations

2009-03-02T00:09:00.000-08:00

After Jayden Naughton lost his speech when he was 2 and was diagnosed with autism, his mother, Megan, made a crucial decision.

When the Avalon woman gave birth to her second son, Duncan, two years ago, she decided he would not be vaccinated, because she believed vaccinations might have had something to do with Jayden's regression.

Duncan is now 2, has never had a vaccination, and also has been diagnosed with autism.

Some might say that this suggests his autism has a genetic cause, but Mrs. Naughton doesn't buy it. In fact, she fears that starting to vaccinate him now could make his symptoms worse. And she's not particularly worried about him getting sick from the diseases the vaccines protect against.

"My grandparents had a lot of these diseases and they're fine," she said last week. "I think these childhood diseases are there for a reason. They're there to build up the immune system."

Whether you agree with her or not, Mrs. Naughton is part of a small but growing subset of parents who either won't vaccinate their children or want to space out their shots. Most of them believe there may be a connection between the vaccines and autism, despite a growing list of scientific studies that contend otherwise.

Even if they aren't worried about autism, some parents are bothered by what they see as an increasing assault on babies' immune systems.

"We do vaccinate, but they do scare me," one mother wrote on the Pittsburghmom.com Web site, which is owned by the Pittsburgh Post-Gazette. "[It's] not necessarily because of autism but just because they get so many of them now and I just wonder if they truly know that they are safe."

While many pediatricians and infectious disease experts feel that doctors should stand their ground in the face of such fears, there is an increasing number of doctors who are willing to accommodate these parents.

Tony Kovatch is one of them. Dr. Kovatch, of the Pediatric Alliance's Arcadia office in McCandless, doesn't agree with avoiding vaccinations altogether, and doesn't know any other pediatricians who do. But he is willing to delay certain vaccinations.

Under the standard schedule promulgated by the federal Centers for Disease Control and Prevention, children can get up to 27 doses of 14 different vaccines before they are 2. They often get up to six shots per visit.

Melinda Wharton, acting director of the immunization safety office at the CDC, said she sees no medical or scientific rationale for spacing out those inoculations.

But Dr. Kovatch responded that "I also don't see any biomedical justification for having to give so many all in one day." He said he believes the schedule was set up "to work into the template of the pediatric well-child visits at 2 months and 4 months and 6 months. But I think the anxiety and concerns of the well-informed public have trumped the convenience on the timing."

One physician who disagrees is Andrew Nowalk, an infectious disease specialist at Children's Hospital of Pittsburgh.

"One of the reasons we are so hot on the vaccination schedule as it is, is that otherwise, you can put your child at risk for some of these diseases, many of which are quite serious. My response to parents who say 'what's the harm in spacing them out' is that many of these diseases are quite devastating."

While they don't see eye to eye on the vaccination schedule, Dr. Kovatch and Dr. Nowalk do agree that some of the diseases the vaccines protect against are more of a threat than others.

Before age 1 children should get the diphtheria-pertussis-tetanus shot and those for haemophilus influenzae B (also known as Hib) and pneumococcal infections, Dr. Kovatch said.

The Hib and pneumococcal vaccines are designed to guard against bacterial meningitis, which used to infect 18,000 children in the United States each year and kill 1,000 of them in the era before the vaccines were available, Dr. Nowalk said.

The pertussis vaccine protects against whooping cough, which has not been eradicated in the United States. Before scientists developed a pertussis vaccine for older children in 2005, there were about 10 to 20 deaths from whooping cough in the country annually, and most were in young children, the CDC's Dr. Wharton said.

For those vaccines, Dr. Kovatch said, he will sometimes suggest to parents who are concerned about the frequency of immunizations that they come into the office more often, and get one vaccine each month rather than three at a time.

He's willing to delay past age 1 the hepatitis B vaccine and the polio vaccine, especially if the family isn't planning overseas travel.

Some doctors follow the schedule advocated by Dr. Bob Sears, a California pediatrician and author of "The Vaccine Book -- Making the Right Decision for your Child."

In his "selective schedule," Dr. Sears never gives more than two vaccinations per visit and delays vaccinations for measles, mumps, rubella, chickenpox and hepatitis A until age 10, and then only if a child's blood tests show a lack of immunity to these diseases.

Spacing out vaccines, he wrote in an e-mail, "allows parents who would otherwise refuse all vaccines to get their babies protected, and helps protect our nation as a whole by raising vaccination rates among worried parents."

Dr. Wharton said she is not a fan of spacing out immunizations, but isn't unalterably opposed.

The problem, she said, is that if too many parents avoid or delay vaccinations, it can allow clusters of childhood diseases to erupt. Outbreaks of measles in the Southwest last year and of haemophilus infections in Minnesota this year were both traced in part to families with unvaccinated children.

Underlying the vaccine delay is the idea that the current schedule puts too much stress on children's immune systems.

But Dr. Wharton offered two arguments against that.

First, she said, children's immune systems are exposed to far more challenges from daily living than they are from all the vaccinations combined.

Second, even though children get far more vaccinations today than they did 40 years ago, they are exposed to far fewer substances in those vaccines that trigger an immune reaction.

The particles in vaccines that build up immunity are called antigens. A 2002 study in the Journal Pediatrics said that the 11 vaccines children were getting in 2000 contained 123 to 126 antigens, while the five that children got in 1960 -- smallpox, diphtheria, tetanus, pertussis and polio -- contained 3,217 antigens.

The major reason for the huge decrease was eliminating the smallpox vaccine from the schedule after that disease was eradicated (it contained 200 antigens), and devising a new pertussis vaccine that dropped the antigen count from 3,000 to about five.

Tricia Baum, of Canonsburg, the mother of a 5-year-old son with autism, said she had not heard that information before -- but it still doesn't change her suspicion that vaccines may have triggered her son's condition.

When she took Nicholas for his 16-month doctor's visit, she said, he was sick and fussy, "and I asked whether he should get his shots, but the doctor checked his ears, and then he said, 'I'm his physician and we're going to go ahead with his vaccinations today and we're going to give him his flu shot as well.' "

She said Nicholas had been developing normally until then, except for a delay in his vocabulary, but not long after that visit, he began to lose what words he had and retreat into himself.

Ms. Baum recently switched to a pediatrician who agreed to measure Nicholas' blood antibody levels before deciding whether to give him a measle-mumps-rubella booster.

Nicholas hasn't had any booster shots yet, she said, and won't as long as his antibody measurements stay high enough.

Elliot Frank, who has a teenage son diagnosed with Asperger's syndrome, is the chairman of local support group ABOARD -- Advisory Board on Autism and Related Disorders.

Although he doesn't believe vaccines cause autism, he knows many families in his organization who do, and he understands the emotions that are driving that idea. "We talk to our parents about how you can't blame yourself for what has happened, but I think it's human nature that you've got to blame something, because you had this image of what your child would grow up to be and at a very young age it's taken away from you, and you've got to blame somebody for life being that unfair."

Dr. Nowalk, who has a child with Down syndrome, understands that as well, but said, he can't abandon his principles as a doctor over the vaccine issue.

"I know they work because I've seen them in my lifetime as a physician protect children against diseases. And they are safe."

What a Hit: Port Resident Has Kids With Autism Coming Up Winners

2009-02-27T12:27:00.000-08:00

Port Washingtonian, John Crawley, left his architectural job last year to help his son Patrick who was diagnosed with autism. It was a daunting task, but if anyone knows how to take a project and run with it, it's Crawley. An avid sportsman and former quarterback, Crawley needed to find ways to get Patrick to connect with the outside world better and learn to work with others. Crawley used his own background and instead of designing buildings he designed a sports program for autistic kids.

"It's the most rewarding project I've ever embraced. I can't tell you what it's like to finally see your child connect with others and realize they are part of a team outside of themselves," said Crawley.

Through his effort and determination, the Children's Athletic Enrichment CAE was born. Its mission: allow each child to become what he or she is capable of. The key with this program is that it has been developed and run by educational professionals and certified ABA (applied behavioral analysis) therapists who work with kids with autism on a daily basis. Each child has different needs and therefore, Crawley says the professionals evaluate every child and work with them individually to learn a sport. Each child's progress is documented with charts and graphs and is integrated into the child's existing academic and behavioral program in school.

As with anything in Crawley's hands, this program has taken off and has already won awards for innovation. At least seven major universities in the United States have validated the program. It is on track to become a model for sports programs for kids with autism. Clinical psychologist, Molly Algermissen, PH.D. Columbia University, has worked with Crawley and has recommended the CAE program. "It provides a unique combination of occupational therapy, ABA training and social skills development in a natural environment for maximum therapeutic benefit," said Algermissen.

"The main difference with what we do with kids with autism is that we put them in a team setting outdoors so they are forced to socialize and have partners. Other outdoor programs generally provide individualized athletics such as horseback riding or surfing," said Crawley. "Kids with autism love to be by themselves. This program forces them to be in a group setting, which will make mainstreaming in school easier," said Crawley.

The program is only in its second year and it has met with rounds of success from children, parents and educational professionals. The children have been offered baseball/softball, soccer, swimming and the newest sport, gymnastics just started this year.

Sheila Bluni of Port Washington signed up her 6-year-old son as soon as she heard about the CAE program. Gavin has attended every sport that has been offered.

"I'm so glad this program is right here in our town. Our son, Gavin loves the CAE programs!" said Sheila Bluni of Port Washington. "He has participated in every program the CAE has offered and we are constantly amazed at the professionalism and educational value of the program, not to mention the fun! Gavin is a visual learner. The coaches give him detailed pictures of the sport so he can see exactly what he's supposed to do, how to hold the bat, where to run, etc. I also feel they really understand Gavin and encourage him to meet his full potential. Now Gavin likes to play baseball at home and loves to hit home runs with his siblings!" said Bluni.

Bluni says she will continue to sign up Gavin for more CAE sports-including baseball, swimming and soccer.

The program is offered for boys and girls ages 4 to 8. Crawley is a volunteer, but the educators are all paid and certified and include master's level: adaptive phys ed. teachers, occupational and physical therapists and ABA therapists. Sports uses gross motor skills and so the CAE program is recognized for complementing the therapeutic benefits of the academic programs for these children. Each child takes home an individualized book, which include PECS - picture exchange communication system, a visual explanation of the sport. The book also shows real pictures of the child playing the sport and interacting as a team member. They have color-coded uniforms so they can identify team members.

It is so exciting to me that we have so many kids who want to be in the program said Crawley. Only 18 kids are accepted per program and they have to fall within the autistic spectrum. The cost is $300 per kid per 6-week session. CAE raises money to supplement the fees that go above that. If a child can't afford it, Crawley works with the parents. In fact, Crawley says half of the kids receive some sort of scholarship funding. As a grassroots, not-for-profit organization, CAE has caught the eye of many service organizations, like the Lions Club, who want to help. In 2008, the International Lions Club organization awarded Crawley with the Most Innovative Program Award. Local businesses have also taken an interest in the program. Senator Craig Johnson, Port SEPTA, The Rexford Group, PW Water Pollution Control District, Port Washington Tennis Academy. LaCorte's Family Auto, recently held a fundraiser and donated all the funds directly to the program.

The next program, baseball, starts in April. Sheila Bluni and her son Gavin will be first in line to sign up!

Couple Lives With Autism, Comfort of Each Other

2009-02-25T21:40:00.000-08:00

Love Bloomed After Socializing Was Learned
By THEA TRACHTENBERG and LINDSAY GOLDWERT
Feb. 25, 2009

David Hamrick, 29, and Lindsey Nebeker, 27, look like a typical couple in love, but what's not apparent is how hard they've worked to be together.
A couple finds a connection despite both having autism.

Hamrick and Nebeker live together in a Jackson, Miss., apartment, yet they have separate bedrooms, eat meals apart and spend most of their time focused on their own interests.

This unusual setup is how Hamrick and Nebeker, who are both autistic, make their relationship work.

About 1.5 million people in the United States have autism, with varying degrees of severity. Many people with autism struggle with the most basic social interactions, so finding love may seem like an impossibility.

Hamrick and Nebeker are high-functioning but, since childhood, both have found it difficult to make friends and even harder to keep them.

"All of her socialization had to be learned, usually by hard experience," said Nebeker's father, Gordon Nebeker.

Coping With An Autistic Brother: A Teenager's Take

2009-01-15T03:14:00.001-08:00

Each year, approximately one child in every 150 is diagnosed with autism. Eleven-year-old Andrew Skillings is one of those children. He has Asperger's syndrome, a mild form of autism.

For Andrew's older sister Marissa, her brother's diagnosis has affected every aspect of her life from the time he was born. She was almost 5 and shared a room with Andrew. Marissa says she remembers those first few weeks he was home.

"I decided he needed to go back where he came from, because as a baby he never, ever stopped screaming," she says.

Then the Skillings found out Andrew had a mental disability.

Recently, Marissa described what it's like to live with a little brother who has frequent meltdowns — and who she tries to protect.

"I'd kill for him. But I could kill him, too. He talks. Nonstop. Talking and talking," Marissa says. "He'll tell anybody information about an animal, whether they want to hear it or not. People can tell Andrew has a disability because of his hand gestures and the way he moves when he gets nervous.

"He moves his hands back and forth; and he'll walk with his hands down by his sides just shaking his hands; and he likes to crack his knuckles when he's nervous, and he'll keep doing the movement even if they don't crack."

As Marissa says, their sibling relationship is different from "two normal siblings" because of his autism.

"Because socially he needs help, so I have to protect him and be there for him more than a normal big sister would," she says. "He freaks out, like if I won't get out of the bathroom and I tell him to shut up, he'll grab a kitchen knife and come over to the door and open the door and chase me around the house with a knife. I know he'd never touch me with it, but when he's running with a knife pointed towards me and I'm running, if he tripped, then something bad could happen."

Marissa says she stays out with her friends until her curfew so she can avoid dealing with her brother's disability.

"I started staying away from home around 5 or 6," she says. "I'd stay outside or at a friend's as late as I could until my mom called me home. I can sit down and talk with my parents, but a lot of times, it's like Andrew's always trying to explain something about a cheetah or a jaguar or something in the jungle that has no importance on anyone's life. But if I interrupt him, he gets mad and then it turns into a tantrum and my mom gets mad, and I'm just like, 'I don't even want to talk to you guys anymore.' "

Marissa says she has seen kids tease Andrew, and it's not unusual at his age. One day, she says, a boy was throwing rocks at Andrew. Andrew tried to shield himself with cardboard, but a rock flew over the cardboard and hit him in the head. Andrew ran into the house crying, and when Marissa found out what happened, she chased the boy down the street and cornered him.

"I smacked him across the face and he was cornered, and my face I'm sure was beet-red, and I was like, 'Just do it again and I'll punch you right in your mouth,' " Marissa says. "I was mad because no one can beat up my brother except me."

"Sometimes, if I get really frustrated, I just wish I could change everything: Sell him to the zoo and buy new parents," Marissa says. "But then the times when I'm actually appreciating things and I'm not in the moment when I'm steaming mad, I do appreciate what I have."

"I don't think I'd change anything, 'cause this is my life and this is what I'm used to. Andrew wouldn't be like the Andrew I know and love if he was different, because autism is his whole personality."

An Autistic Student's Journey To College

2009-01-15T01:12:00.000-08:00

Sending your child off to college can be an anxious time for many parents. But for parents of children with a mental illness or learning disability, the transition is especially challenging. One worry is that parents of adult children have no legal standing in their medical care. In Nashville, Tenn., the Diehl family has worked hard to prepare their son for the move from home to college.

Roger's Story

Roger Diehl turned 18 in May. He is a freshman at the University of Wisconsin-Madison. Throughout high school, Roger was an A-student, despite having serious mental health challenges throughout his childhood. He has suffered from clinical depression. He has attention-deficit hyperactivity disorder (ADHD) and Asperger's, a form of autism.

"I'm autistic, so it's a bit tough for me to interact socially," he says.

"Looking people in the eye is not natural to me. I had to learn it. And I also, especially earlier in my childhood, had some pretty bad depressive episodes."

Roger's mother, Sita Diehl, says she first began seeing signs of her son's depression when he was 3.

"I was worried about him, because he was beginning to say that he wanted to kill himself," she says. "He would get very, very angry and frustrated and he would say 'I don't want to be here anymore.'"

Roger says he wasn't actually thinking about ways to commit suicide; he was just thinking it would be a good thing to do. Then, when he turned 6 or 7, his mother remembers him asking specifically about methods of suicide: How long it would take to suffocate if he put a plastic bag over his head; Or, if he jumped out of the car into traffic, would he be killed for sure?

It was at that point that the Diehls got psychiatric help for their son. As a 7-year-old, Roger was put on the anti-depressant Prozac, and he's been on the medication ever since.

"I'm currently on 10mg of Prozac a day and 40 of Ritalin in high-stress situations, because I also have ADHD," Roger says.

Off To College

Roger did not try to hide his mental health problems when he applied for college. He wrote about his illness in his Merit Scholarship application.

"One of the greatest challenges I've overcome has been my autism," he wrote.

His teachers also mentioned his autism in their letters of recommendation. His applications were successful. He was a finalist for a National Merit Scholarship, and he was accepted at several colleges.

When he chose the University of Wisconsin, his family knew that he would need support to attend a college away from home. Sita Diehl is the executive director of Tennessee's National Alliance for Mental Illness, in Nashville. Her work with families there prepared her for Roger's move.

"For many years, I've heard families talk about how their child was at the top of his class, and he was just wonderful, and then he went off to college, and everything fell apart," she says. "And so I was determined that we were going to learn from experience."

"Whether or not it was something that Roger needed, we were going to build a bridge for a gradual launch, rather than just pushing him out of the nest."

One of the reasons the Diehls chose the University of Wisconsin over other colleges was because of their social support network in Madison.

"That's where our extended family lives," Sita Diehl says.

"For the first year, Roger's going to be living with his grandmother, just to make that transition gently. And his favorite cousin lives there, and so he'll have a ready-made social system."

How Parents Can Help

All families face a legal transition when their child turns 18. Roger is now a legal adult. As a result, his parents no longer have the legal right to be involved in his medical care, even though they know he is at risk for depression and suicide.

The family has prepared for this, too.

Sita Diehl has already found a psychiatrist in Madison for Roger; Roger and his family have also consulted a lawyer. The lawyer recommended that Roger needed to give someone financial power of attorney over his affairs. Roger chose to give the power of attorney to his grandmother.

The lawyer also recommended that Roger appoint a power of attorney for both his mental health care and his health care, draft a living will and sign a HIPAA release.

A HIPAA release refers to the "Health Insurance Portability and Accountability Act," a federal law that protects the privacy of an adult's medical information.

By signing a HIPAA release, Roger agreed to let his parents remain involved in his medical care, as they had been when he was a dependent. For parents of adult children with mental illnesses, a HIPAA release is critical.

"I've heard so many parents say that at the age of 18, the wall comes down and it's a real shock. Suddenly, people we've been talking to for years can't talk to us anymore," Sita Diehl says.

"They're very, very reluctant to give information. And you do have to wave this paper in front of them and say, 'This was signed by the patient when he was making good decisions.'"

In addition, Roger is working on an Advanced Directive with his grandmother, documenting what kinds of medical interventions he wants if he becomes incapacitated. And for Roger, who suffers with chronic, severe depression, becoming incapable of making good medical decisions is a real concern.

"He'll work out what he wants, and where he wants to go, and how he wants to be treated, and what medications, and that kind of thing, if he becomes incapacitated. I really don't think Roger will get into that state, but if he did, it would at least be there as a safety net," Sita Diehl says.

Roger feels good about these legal decisions.

"It feels a lot better than not having my family know about what sorts of treatment I'm getting if I'm determined to not have capacity," Roger says.

"I'd rather have them know and be able to make decisions, than the doctors making decisions by themselves."

And Roger says he doesn't feel that his independence is being curtailed by his parents.

"I actually feel that it's adding to my independence, because I feel they'll be more responsive to my wishes than someone I don't know."

Using College Resources

Sita Diehl also recommends one more important step, and that's to check in with the university's Office of Disability.

"Go into the office and say. 'I'm here. This is my disability. I don't need you right now. But at least you know I'm here.'"

"I think the important thing is not to just hope it'll all work out," she says. "But to look at the potential challenges and take steps as far as you can, and do that planning together. And set them up for success as much as possible," Sita Diehl says. Her son agreed.

Roger plans to major in biochemistry. He says he's very excited about the rigorous academic load ahead of him and the sheer wonder of learning new things. He is a remarkable young man, with a family supporting him, and preparing him to go off to college and thrive, while living with the challenges of mental disabilities.

School Helps Autistic Kids Navigate 'Foreign Land'

2009-01-15T01:09:00.000-08:00

When Gibson Brown learned how to put on his socks, his mother was ecstatic. Watching her autistic son develop, she says, is a lot like "watching grass grow." Such a step was almost like an entire tree had shot from the earth.

Until, that is, she went over to her sister's house and watched, stunned, as her niece — younger than her own son — put on her socks, shoes and jacket in a snap.

"I think, 'Oh my gosh,'" Katrina Brown says, recalling her shattered enthusiasm.

For the parents of an autistic child, such comparisons can be dangerous. No one knows this better than the teachers at the Croyden Avenue School in Kalamazoo, Mich. Each day is filled with tiny steps and tons of repetition. Progress comes on many scales.

Croyden is also a rather unusual place in that it's a public school that offers one-on-one intensive counseling for autistic children. Done privately, such therapy could cost families up to $100,000 a year.

On a recent morning, Katrina Brown is filled with many hopes and fears as she drops her son off at Croyden.

"He will do smart things," she says. "He figures things out on his own. It's not that I expect an Einstein or whatever. It just makes me really worried when I see how far he still has to go."

The school is prepared for children facing a unique set of hurdles. The classroom is filled with nearly soundproof cubicles to minimize visual and verbal distractions. Children are encouraged to play before starting on work to get to know their environment.

Many of the children aren't talking when they arrive at school. The earlier they learn to speak — rather than use behaviors to convey what they want — the better, says Angela Telfer, the principal of the school.

"If you can imagine going though life not understanding what people are saying to you and not being able to communicate how you are feeling, it can be a really scary place," she says. "It almost seems like you are dropped in a foreign land."

Teachers focus on small steps and try to develop lesson plans that take into consideration each child's strengths, weaknesses, likes and dislikes.

Gibson, for example, is drawn to the toy train, so his teacher frequently uses this as a tool.

Katrina Brown is learning to accept that progress is relative.

"I am learning to just appreciate him for who he is and the miracle he is ... he's really had to work so hard. So when you think about it that way, he is doing pretty good."

Autism Reveals Social Roots of Language

2009-01-15T01:04:00.000-08:00

People with autism often struggle to learn language, and they also struggle with personal relationships.

Scientists say that's probably not a coincidence.

There's growing evidence that language depends as much on the brain circuits that help us navigate a cocktail party as those that conjugate verbs.

One of the people who believes that evidence is Temple Grandin. She teaches animal science at Colorado State University and has written several best-selling books. She's also autistic.

Grandin says it has taken her most of her life to reach the point where she can speak with other people in a way that sounds natural. She says that's because she's had to learn language without the social abilities most people have.

Grandin didn't begin speaking until she was 3 ½ years old. Her first words referred to things, not people, she says.

"I'd point at something that I wanted, you know like a piece of candy or whatever, and say, 'there,'" Grandin says.

She wasn't using language to reach out to her parents or to other children, the way most kids do, so she didn't have the same motivation to talk.

A Tool for Information, or Attention?

When Grandin finally did become interested in words, it was because they provided a way to get information, not attention.

"When I was in third grade, I had trouble with reading, so mother taught me how to read," she says. It opened up a world full of "so many interesting things," she recalls: "I used to like to get the World Book Encyclopedia and read it."

But the encyclopedia taught her little about using language to make friends. Even when she got to high school, chit-chat and gossip meant nothing to her.

She says that made her teenage years the worst part of her life. "Kids teased me, called me tape recorder because when I talked it was kind of like just using the same phrases."

She also kept talking, without letting other people respond.

Grandin and many others with autism have no problem with the mechanics of language, says Dr. V.S. Ramachandran, a neuroscientist at University of California, San Diego. But they don't understand what's really going on in many conversations.

"That's one of the hallmarks of autism," he says, "difficulty with social interaction, manifest both in spoken language and in just lack of empathy. The ability to understand other minds would be one way of describing it."

The Role of Mind Reading

Ramachandran says it's hard to use language if you don't have any idea what someone else is thinking and feeling.

That may seem obvious. But in the past, researchers have treated language as if it were primarily a system of rules. They assumed that people spoke because every human brain came pre-wired with a "universal grammar."

Now, a growing number of researchers, including Ramachandran, argue that the social and emotional aspects of language are at least as important as the rules for stringing words together.

Emotional Neurons

Ramachandran says one reason for the new thinking is a new understanding of the human brain. He says it's become clear that babies' brains are programmed to imitate.

"You stick your tongue out at a newborn baby, very often the newborn baby will stick its tongue out," he says.

Similarly, babies return smiles and often make sounds when someone speaks to them.

A few years ago, scientists found a biological explanation for this phenomenon: specialized brain cells called mirror neurons.

These neurons fire when you do things such as sticking your tongue out. They also fire when you watch someone else stick their tongue out.

And mirror neurons can reflect emotions as well as physical actions. Experiments show that some of the same cells that fire when we feel pain also fire when we see another person in pain.

But people with autism appear to have faulty mirror neurons. That may be why they have trouble putting themselves in someone else's shoes. And Ramachandran says without that ability, a lot of what you can accomplish with language disappears.

"You have to be aware of the effects that your words are having on the other person's mind," he says. Otherwise, how could we use words to manipulate other people?

Picking Up Non-Verbal Cues

Temple Grandin has learned to compensate for her difficulty.

Early in her career, she spoke to people on the phone instead of face to face. That way she didn't miss messages conveyed through eye contact or body language.

But even on the phone, people may not say what they mean. The phrase "I'm fine" sometimes means just the opposite.

So Grandin taught herself to listen very closely to a person's tone of voice.

"When I had a client that I thought might be angry with me, I'd call him up just so I could listen to his voice," she says. "If it had a certain little whine sound in it I'd go, 'Oh he's still angry with me.'"

Over time, Grandin has developed a catalogue of signals she uses to figure out what people are thinking. She checks to see if they are fidgeting during a lecture, or making eye contact during a conversation, or folding their arms during an argument -- emotional cues most of us register automatically.

"I always keep learning," Grandin says. "People ask for the single magic breakthrough. There isn't one. I keep learning every day how I think and feel is different. It's all through logic, trial and error, intellect."

Intellect can only take her so far, though. Grandin says she still has trouble with certain types of conversations.

"Just a couple of years ago I went out to dinner with some salesmen, and these people were absolutely totally social," she says. "They talked for three hours about sports-themed nothing. There was no informational content in what they were talking about. It was a lot of silly jokes about the color of medication and the color of different team mascots. It was boring for me."

Social Motivation for Language

The salesmen were using language as a way of bonding with one another -- not a way to share information. Scientists say this sort of behavior may explain how humans developed language in the first place.

Bonding is something most animals do. For example, apes bond by grooming each other. And one theory has it that early humans began to augment their grooming with affectionate gestures and sounds that eventually led to primitive language.

Ramachandran says there are some gaps in that hypothesis. Like how people got from grunts to grammar.

"The difficult part is to try to disentangle the notion that emotional empathy merely gives you motivation, a reason to talk to somebody, versus an absolutely critical role in the emergence of language," he says.

Ramachandran suspects it's the latter because empathy is what allows people to understand the intention behind an action or a phrase.

For example, he says, when we see someone reach for a peanut, empathy helps us decide if they intend to eat it, or throw it at us. And when we hear someone use a string of words, empathy tells us whether to take the words literally or figuratively.

Ramachandran says people who lack empathy also lack the ability to read another person's intentions -- whether physical or linguistic.

"Not only do they have problems understanding an action like reaching for a peanut," he says, "but also a metaphor like reaching for the stars."

Grandin doesn't use metaphors very often, even though she has mastered the mechanics of language. Grandin says she will never fully understand the social aspects of language, including other people's intentions. And that means language will never offer her more than a rough translation of what other people are trying to say.

Teen helps ‘parent' younger, autistic siblings

2009-01-14T03:32:00.000-08:00

MINNEAPOLIS -- As a freshman in high school seeking volunteer hours, Abbey Davison applied to work one night a week with Lucy and Jacob Schneider, two Brooklyn Park, Minn., siblings with autism. She was prepared for tough questions, and tough questions she got: What did she know about autism? "Not much, but let's give it a try!" she said. What activities might she do with Lucy and Jacob, then 2 and 3? "Play outside when we could," she answered. "Color, work on social skills." Most important, why did Davison want to work with Lucy and Jacob? "I love kids!" she said.

She got the job. What she wasn't prepared for was the griller himself: Lucy and Jacob's older brother, Luke, then age 9.

"Luke had a questionnaire for me," Davison recalled with admiration. "He watches out for them, supports them, plays with them. They depend on him." Now 21 and studying occupational therapy at the College of St. Catherine, Davison remains close to the Schneider family, still going to the house weekly to help out. Her respect for Luke, who will be 15 in two weeks, has only grown. "It's different for a 14-year-old to be like that."

It's a new year so here's a new idea: a household without sibling rivalry. Luke Schneider simply doesn't have time for it.

Luke was 8 years old in 2002 when 2-year-old Jacob had tubes placed in his ears because he wasn't responding to the world around him. His parents, Mary and Steve, feared he was deaf. Instead, he was diagnosed with severe autism which was later changed to moderate. Mary recalls "so many people" encircling the family in their living room to explain the diagnosis. All she wanted to know was, "Will he ever say, 'I love you'? Will he graduate from high school?" Seven months later, 1-year-old Lucy also was diagnosed with autism. Luke remembers his parents telling him that "life was going to be different from now on," he said. "Their brains are a little different and they can't always understand what you're saying."

That helped Luke understand why his little brother didn't interact "normally" with him, running away, avoiding eye contact, not knowing that when someone says "Hi" to you, you say "Hi" back. But even early on there were victories. "I was so happy when he learned to play hide-and-seek with me," Luke said of Jacob. He learned how to help Lucy, too, finding her blanket, pouring her orange juice and making her peanut butter sandwiches. "They're like a couple of old people," Luke said. "You have to repeat yourself a lot."

ONLINE SCHOOL OFFERS FLEXIBILITY

Luke is a bit of an old soul himself. He is smart, polite, soft-spoken, a self-professed computer geek. He didn't care much for the "distractions" of a typical high school, which led him to enroll full time this year at Insight School of Minnesota, a fully accredited online high school administered by the Brooklyn Center School District. Luke attends school at the computer in his bedroom from about 9 a.m. to 4 p.m., pulling A's and B's in classes such as English Literature, Algebra One and World History.

His teachers describe him as responsible, disciplined and curious, a perfect candidate for online high school. Science teacher Angela Tingey advises the NASA club and said that Luke "knew the names of all the Mars rovers. He knew which one Phoenix was and that Phoenix had 'died,' or at least that they had lost contact. He knew everything about it. I said that he should be teaching the class."

The online option also allows him to help his parents when life doesn't go as planned, which happens more than occasionally.

Troy, Mo., mom reaches out to help kids understand autism

2008-11-16T03:47:00.000-08:00

Troy, Mo., mom reaches out to help kids understand autism
By Jessica Bock
ST. LOUIS POST-DISPATCH
11/16/2008

TROY, MO. — JoEllen Kessler had been in front of her son's class for only a few minutes when one of the second-graders asked, "How did Ryan get autism?"

"We don't know. No one knows, really," Kessler said.

Parents like Kessler still have lots of their own questions about autism. But what brought the stay-at-home mom, 41, into her son's classroom recently was the answers she has about Ryan.

Pushing aside her nerves, she spoke to the class fueled by hope that a little education about autism will go a long way with her son's classmates.

"You guys probably notice Ryan does odd things," Kessler told the class. "I'm here because I want to help all of you understand Ryan."

Chances are, kids these days are going to meet someone in their life with autism or a related disorder. Schools now know of more children with autism than ever before. In Missouri, the number of students with autism has increased from 934 about 10 years ago to more than 5,000 today.

Those increasing numbers of students with autism mean schools are challenged to develop plans for their education and train teachers and staff. Teaching the other students about autism can sometimes be an afterthought.

Like other children with autism, Ryan, 7, has trouble talking and other issues that can make it difficult to make friends.

That's why, after hearing about "The Autism Acceptance Book" for children by Ellen Sabin, Kessler decided to speak to her son's class at Boone Elementary. The book explains autism, and Kessler brought a copy with her to class.

School officials encouraged Kessler, who has since spoken to other classes at the school and has more presentations planned. Students see Ryan and other kids with autism each day in class,

at lunch and on the playground and know they are different, but they didn't really understand how.

"I think teachers in general are overwhelmed with responsibilities, and we don't always feel like we're the experts in everything," said Lisa Hamlett, a counselor at Boone. "Hearing it straight from Ryan's mom was really beneficial for everyone."

Kessler said it isn't easy. "But you're the mom. You're the advocate," she said.

Autism experts say what Kessler is doing is important and somewhat uncommon. Most parents don't feel comfortable enough to give a school presentation, said Staci Bowlen, a director with the Judevine Center for Autism, which offers support to children and adults with autism and their families throughout Missouri.

"There is such a need for this," she said. Children with autism often don't have the same social skills as others, and kids sometimes focus on those differences. They're curious, and hearing from a parent gives them the opportunity to ask questions, Bowlen said.

During her time with Ryan's class, Kessler brought one student to the front and asked the other students to make soft buzzing noises while she tickled the back of his neck. Then she asked him to try and answer a math question. The boy blinked a few times and stared back at the class, unable to respond.

"It was hard to concentrate, right? That's what Ryan feels every day in the classroom," Kessler said. "These things don't bother most people very much. But some people with autism feel their senses very, very strongly."

Those conditions are probably why Ryan will sometimes walk on tiptoe, stick out his tongue or tap too hard during a game of tag on the playground, Kessler explained to the kids.

Having Ryan in a class with children who understand that they can help is a great asset for Ryan's development, Kessler wrote in a note sent home to parents the day of her presentation. "The best tool for any child with autism is a strong support group."

Before she left, Kessler told them Ryan likes camping and four-wheeling, and she encouraged them to ask him to play.

Nodding her head, one girl said, "I'll ask him every day."

10 Myths About Autism

2008-10-24T02:28:00.001-07:00

10 Myths About Autism
Experts Examine Misconceptions About Autism
By LARA SALAHI
ABC News Medical Unit
Oct. 23, 2008

As the number of Americans diagnosed with autism spectrum disorders climbs, so, too, does the number of questions surrounding this disorder. Namely, what is autism, and what is causing a rise in autism diagnoses among adults and children nationwide?

Amid these questions, television shows and magazines feature a barrage of stories and imagery -- families rallying for and against vaccines, debates between medical experts pointing to both genetic and environmental causes, and images of individuals diagnosed with autism who struggle to speak and function independently, while others can interact with others and are able to hold jobs. For many, these competing messages may make this already complex condition even more confusing.

Fortunately, doctors and researchers are learning more about the causes and characteristics of autism.

The following are answers to 10 common myths, that may help us better recognize the range of symptoms we call autism spectrum disorders.

Myth: Autism is an emotional or mental health disorder.

While physical or social behaviors of individuals with autism may suggest that they have a psychological disorder, autism is actually a biological illness that affects the brain's growth and development.

"In the case of autism, the parts of the brain that are most affected seem to impact three areas of functioning," said Michael Alessandri, executive director of the University of Miami's Center for Autism and Related Disabilities. "Social behavior, communication and restricted and repetitive rituals and routines are ways that the child or the adult with autism interact with the environment."

Although autism is now understood to be a neurodevelopmental disorder, Alessandri, an expert for ABCNews.com's OnCall+ Autism section, said autism can still be considered a complex disorder because its range of symptoms is so diverse.

"Scientists and clinicians now understand that autism is not a singular entity, but rather, a variety of syndromes that ... create the autism spectrum disorders," said Alessandri.

Myth: There is an autism epidemic.

The word "epidemic" often implies a sudden burst in the number of individuals within a fixed time who have, in this case, autism.

Although the CDC reports that one out of 150 children born have an autism spectrum disorder, some experts are quick to question whether a surge in autism cases is actually occurring. Some are more likely to link the upshot of numbers to the combination of a broader definition of autism, a wider spectrum, and an earlier diagnosis.

"The condition has not become more widespread, but there is more diagnosis of autism," said Dr. Bob Marion, director of Children's Evaluation and Rehabilitation Center at Albert Einstein College of Medicine in New York.

Sheila Wagner, assistant director of the Autism Center at Emory University in Atlanta, added that more awareness of symptoms has allowed more people to identify individuals who have autism.

"There's a lot of media exposure to autism, in television and movies," said Wagner. "This has made [autism] more recognizable in the lay population."

Myth: Autism can be cured.

Some parents may allude to a certain diet, medicine, or set of behavioral treatments that have cured their autistic children, where other parents may try the same mode of treatment and see no results. While there are treatments created to improve an autistic child's ability, there is no known cure for autism.

"We do know that with early intervention with younger children and Applied Behavioral Analysis, we can improve a child's functioning," said Marion.

Applied Behavior Analysis, or ABA, is one form of therapy for newly diagnosed children. It includes repeating behavioral activities to improve a child's social and physical functions.

According to Marion, there is no blanket treatment for autism, and it is up to the individual's doctor to assess what treatment will offer the best benefit for each autistic child.

In some cases, Marion said, behaviors, including eye contact, interaction with others and development of language skills, will significantly improve -- but the underlying biological disorder will not change.

"And that is definitely not a cure," he said.

Myth: Autism is the result of cold and unemotional parents.

In the 1940s, Austrian doctor Bruno Bettelheim theorized that autism was a result of parents, especially mothers, who did not love their children. Children in such situations would withdraw and become autistic, Bettelheim believed.

However, researchers have thawed the "refrigerator mother" theory. According to medical experts, a child's autism diagnosis has nothing to do with how the child is raised.

"We don't know if there are any things that a parent can do or not do, conclusively, will determine whether their child gets autism or not," said Dr. Daniel Geshwind, director of UCLA's neurogenetics program and center for autism research. "Most of the evidence right now points to there being a very strong genetic predisposition in most cases of autism, but not all."

Myth: Individuals with autism always have hidden or exceptional talents.

Stephen Wiltshire, 34, is best known as the human camera. He can replicate architectural designs and landscapes down to each blade of grass -- even if he is only given one opportunity to observe the area he is drawing. Wiltshire has reproduced panoramic scenes of Tokyo, Rome and London by memory after one short helicopter ride over each of the cities.

Wiltshire is an autistic savant. That is, he has extraordinary cognitive skills that allow him to recall details of designs, numbers and measurements that are normally considered too difficult to remember.

The concept of an autistic individual as a savant may have been popularized by Dustin Hoffman's character in the movie "Rain Man."

But while Marion acknowledges that there is a minority group of individuals with autism who have unusual islets of skills, savants are an unrealistic portrayal of the majority of individuals on the spectrum. He said most do not have talents or skills that distinguish themselves by extraordinary talents.

"There are strengths and weaknesses in every child," said Marion. "It's important for every child with autism to have a multidisciplinary evaluation by health professionals who have experience in assessing a child's skills and deficits, to come up with an educational plan that will benefit the child the most."

Myth: Repetitive or ritualistic behaviors should be stopped.

One of the classic indicators of autism is repetitive and ritualistic behaviors, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM IV), a physician's tool to diagnose autism.

While these behaviors -- which can include hand flapping, banging on walls or rocking back and forth -- may seem odd, they do have a purpose: they can be calming; they can feel good; and they may help the individual communicate with others, said Wagner.

Repetitive behaviors may only pose a problem if they begin interfering in family life or if they prevent those with autism from functioning independently, Wagner added.

However, according to Dr. Pauline Filipek, associate professor of pediatrics and neurology at the University of California, Irvine, a child may learn to outgrow repetitive behaviors.

"Often, as an individual gets older, they learn that such behaviors make them stand out in society, and they learn to miniaturize those behaviors," said Filipek.

Myth: Individuals with autism are unable to build social relationships.

"This is a generalization and needs to be individualized because the spectrum is so wide," said Marion.

In short, social relationships are possible for some individuals on the autism spectrum, but not for others on the most severe end of the spectrum, Marion said.

The DSM IV, which includes diagnosing guidelines for autism, lists "impairment in social interaction" as one indication that an individual can have an autism spectrum disorder. But not every child on the autism spectrum will have the same degree of difficulty connecting with others.

"At the most severe end of the spectrum, yes, that's true," said Marion. "But there is a multitude of children who have friends, and even some who do have close relationships."

Myth: Autistic individuals are a danger to society.

"It is a disservice to think that all people with autism are dangerous," said Wagner.

The idea rises from numerous news stories of individuals diagnosed with Asperger's syndrome, a high form of autism, who have been accused of burglary and, at times, murder.

However, if you look at the entire population of people on the autism spectrum, the number of people involved in crime is small, said Wagner. If someone with autism were to act out, it may be due to frustration or perhaps physical or emotional overstimulation, not necessarily malice, she said.

Child with autism wanders away from school

2008-08-26T05:36:00.000-07:00

LANTANA, FL -- A ten-year-old with autism wandered away from his elementary school on the first day of class without anyone noticing.

Tatrisha Williams says she notified her son's school, Starlight Cove Elementary in Lantana, that she would pick him after class last Monday.

She claims the school even called her during the day to reconfirm. But, when Williams arrived at parent pick-up looking for her son, Joseph, he was nowhere to be found.

She claims she cried and panicked, and rushed back to her home.

There, on the doorstep, she found Joseph, soaking wet. Williams says he walked home, alone, in the rain.

Although their house is only about a block from school, Williams worries something terrible could have happened.

She tells WPTV NewsChannel 5, "He could walk a block; someone still could snatch him or he could get hit by a car. Anything, anything can happen to him."

She also worried Joseph could have had a seizure on the way home.

Williams explains, Joseph has a seizure disorder, and was brought to the school clinic after showing symptoms earlier in the day.

Joseph speaks very little, but told his mom, "I walked by myself...I wanted to see if you were at home."

Knowing his story, Williams now wants the school's explanation.

She wants to know, "How can a special needs child get away from so many adults that are supposed to be looking out for the kids safety."

Willimas goes on to say, "I would just like them to be alert, especially for the special needs kids because they can't look out for themseleves and anything can happen to them."

A Palm Beach County school District spokesperson didn't give an explanation, but tells WPTV NewsChannel 5, "We made a mistake and we have corrected it."

She goes on to say, "It won't happen again."

The impact of autism and a mom's hope

2008-07-31T04:48:00.000-07:00

New Island school adds to services for growing population
Sunday, July 27, 2008
By AMISHA PADNANI
STATEN ISLAND ADVANCE

STATEN ISLAND, N.Y. -- Like most parents, Marilyn Sarin didn't take it lightly when she found out her daughter had autism.

"I cried," she said. "I cried and cried. When she was first diagnosed, I think it was one of the scariest things I've ever been through."

The Pleasant Planes resident wondered if 2-year-old Gia Nicole would ever lead a normal life, whether she would ever learn to speak and socialize with others her age. She also wondered if she was the only one with those fears.

"It's really hard because other people don't understand what you're going through," Mrs. Sarin said.

Her outlook changed once Thursday's Child moved to Staten Island. An early-intervention school for kids with autism, Thursday's Child opened in Dongan Hills in March, bringing with it a support system for parents like Mrs. Sarin and innovative learning techniques for children like Gia.

Autism spectrum disorders are developmental disabilities that can be diagnosed to children who are about two years old and have shown impairment in social interaction and problems with communication. It is also marked by restricted or repetitive behaviors.

Dr. Helen Murphy, one of the school's founders, said Thursday's Child is new to the Island, but not new. She has been running a branch in Brooklyn for about 10 years and recognized a need for a school here when she noticed a lot of Island families traveling to the branch in Brooklyn.

Thursday's Child is a public school and tuition is funded by the city and state. It is among a handful of schools on the Island for children with autism though its focus on early intervention is rare. Dr. Murphy has welcomed about 20 Island families to the new school since it opened in March.

In the classroom, students receive one-on-one attention from a teaching assistant and practice the three R's: Repetition, reinforcement, and reward. Jeanne Ward, the school's educational director, said children with autism are so easily distracted that they need to practice even the simplest of behavioral actions over and over again to learn them.

She said parents typically come to the school with goals that are broken down into "small, achievable tasks." For example, if parents want their children to learn to talk, the school would teach children to sit and be attentive and make eye contact -- basic skills that can be challenging for kids with autism.

Children typically spend about 10 hours a week at the school and another 10 hours with a therapist at home, Ms. Ward said.

Throughout the day, teachers scribble furiously on clipboards, marking down every step of a child's progress. An identical set of files are sent home so parents and therapists can pick up where the school left off, Ward said.

On a recent tour of the school, Rob Mignone, a teaching assistant, plopped down on the carpeted floor next to 2-year-old Aiden Miguel Lozado from Meiers Corners, a sea of Lego blocks spread out before them.

Mignone asked Aiden Miguel to pick out a blue block and place it on top of another blue one. Instead, Aiden Miguel got on his knees, turned around and began to crawl away.

"Where are you going?" Mignone said, gently lifting him and sitting him back down. He gestured once more toward the blocks and Aiden Miguel began to put them together, one by one.

"Great job," Mignone said. "Now let's keep going."

It's that sort of patience, persistence and encouragement that parents say has paid off.

Kari Basile, a Great Kills resident, said that her 3-year-old son, Paul, has been at the school for a few months and that she's amazed how quickly he's improved.

"He went from grunting and pointing to speaking in complete sentences," she said. "He can participate in an actual conversation, which he never used to do."

Her favorite part of the school day is when Paul mingles with other children -- some autistic, some not -- at an on-site day-care center that is open to anyone in the community. As Paul paints pictures of animals and reads Barney books with some of the other children, he learns how to be around other people without feeling awkward or afraid, Ms. Basile said.

Anyone interested in learning about Thursday's Child can walk in to the school on Seaview Avenue or call 311 and ask about the Early Intervention Program. TAG:Newhouse News Service material was used in this report.

Amisha Padnani covers education for the Advance. She may be reached at padnani@siadvance.com.

Against Code, Boy's Play Area In Jeopardy

2008-07-31T04:45:00.000-07:00

(WCCO) The family of a boy who has autism is fighting to keep something that seems pretty basic: a place to play.

"The deck was put up here to provide my son, who has autism, a safe play area," said Matt Foote of Paynesville, Minn.

According to Stearns County officials, the deck may have to come down because it was built without a permit, but the Foote family isn't removing the deck without a fight.

"You hear him out here like with his little squirrels, and he'll go inside and get his stuffed animals and he'll bring a blanket out and with his play grill -- he'll cook 'em food," said Matt Foote about his son Alex who has autism.

Five-year-old Alex doesn't know that he and his backyard friends might have to find another place to play. His parents say it wouldn't be safe for him to wander in the yard that backs up to Rice Lake.

"So if he were to have an open play area in the grass, the fear would be the lake," said Matt Foote.

Stearns County officials didn't want to comment on the case but they did say that the Foote family did not get a permit, and that the deck violates the state setback rule of 100 feet.

"When you step up, if it's less than 12 inches from the ground, you don't need a permit to build. There is not a permit to build until it becomes a deck," said Matt Foote.

"Well, unbenounced to us when the plans were drawn up, they we were always referred to it as a deck. Stearns County was referring to it as a patio. This patio became a deck when we put the railings up," he said.

The county did offer a compromise -- move the deck to the other side of the house. But there are no windows for the parents to watch Alex. The family was also told they could build a small, enclosed gazebo.

"That's tantamount to putting him in a dog kennel. Would you want to put your kid in a dog kennel? I mean 'here son, you can go play but you're stuck in here," said Matt Foote.

The family is appealing the county's decision and will be in court on August 21.

College Scholarship Awarded To Boy With Autism

2008-07-31T04:37:00.000-07:00

Amie Bell says the LearningRx program changed her son's life. Nine-year-old Tripp Bell had been in Special Ed since kindergarten. Now, he's been awarded a college scholarship.

LearningRx's learning exercises are like games to help Tripp Bell focus and improve his memory. For years, Bell found it hard to concentrate.

"I got a lot of bad grades," says Bell.

His parents tried changing the nine-year-old's medication and diet and added allergy injections. It didn't work.

"He would go home and call himself stupid," says Amie Bell.

"I always disappoint my mom," says Tripp Bell.

Bell has autism, ADD, a learning disability, and severe short-term memory loss, but normal intelligence.

"I got bad grades. I never wanted to get bad grades."

That was before he enrolled in LearningRx's six- month program.

"We're not working academically. We're working at the root level to improve those skills we're born with," says Neal Best, LearningRx of Little Rock Center Director.

After two months of training exercises, his mother says the time she spent with him on homework was cut in half. He also won the program's National Student of the Year award along with a $1,000 college scholarship and a trip to Colorado.

The center director says bell has gained an average of six years in his mental abilities. No longer does he utter the word "stupid."

"I feel smart," says Bell.

He is no longer enrolled in Special Ed. The biggest reward his parents say this program boosted his learning ability and his self-esteem.

Taoiseach supports bid to have autistic boy enrolled for new term

2008-07-29T05:19:00.000-07:00

By Niall Murray, Education Correspondent

A MOTHER who has spent four months trying to find a school in which to enrol her autistic son is hopeful that the support of Taoiseach Brian Cowen will help her case in time for him to begin classes in September.

Casey Naughton was expelled from his local school in Daingean, Co Offaly, because staff were not equipped to deal with his behaviour that sometimes disrupted classes. The nine-year-old has Asperger’s syndrome, a form of autism which sometimes cause outbursts and tempers.

But despite his mother Lisa’s attempts to enrol him in more than 20 schools to date, none has accepted Casey for next year. She brought her frustration to Tullamore on Friday, where Mr Cowen was opening a new social welfare office, along with Social and Family Affairs Minister Mary Hanafin, who was Education Minister until two months ago.

"They brought me in for a private meeting of about 40 minutes and the Taoiseach was very understanding of my situation as a family man," she said.

"They couldn’t make a specific commitment that I would find a school to take Casey but they said they would try to do something for me in the five weeks left before schools open," said Ms Naughton.

She has written to Education Minister Batt O’Keeffe a number of times about the situation since he took office in early May but said that she has not had any response. "I am a bit more hopeful now that I know the head of the Government might be able to push some buttons, but it shouldn’t take bringing a placard to an official function to be making progress. If schools were properly resourced to deal with kids like Casey, there would be no problem," she said.

Ms Naughton has been supported by the National Educational Welfare Board in bringing appeals against a number of schools which have refused to enrol her son. The latest appeal is due to be heard by the Department of Education next week, with a number of other refusals due to be the subject of appeal hearings in the coming weeks.

"It was upsetting for Casey being with me last week when I bought a new uniform for his brother because he’s wondering if he’s ever going back to school himself. And then he worries if he’ll make friends at any new school he does finally get into," she said.

Ms Naughton said children like Casey who are relatively high-functioning are not suited to dedicated autism units attached to some primary schools, but mainstream schools are not given enough resources to help teach them. Casey had been receiving home tuition between being expelled in February and the end of June but his mother had to borrow the €4,500 cost, as reported by the Irish Examiner last week, with the reimbursement from the Department of Education only being completed last Friday.

Couple provides Temecula schools foundation on which to build efforts for autistic children

2008-07-27T04:50:00.000-07:00

By CLAUDIA BUSTAMANTE
The Press-Enterprise

Three years ago, Mark and Kathy Anselmo held an auction to raise money for their autistic son's preschool class.

The event was a modest success for the parents, who were not expecting to rake in millions of dollars. Their newly formed nonprofit, Our Nicholas Foundation, came away with $20,000.

"Our initial goal was simple, a little wish list," said Mark Anselmo.

They donated funds to Ysabel Barnett Elementary School in Temecula, which had experienced cutbacks, helping to make sure the progress being made by their son, Nicholas, then 4, could continue.

Today, the foundation has given thousands of dollars to numerous Temecula schools and geared up for a first-ever Autism Summit, which will provide information on research, education and therapies to parents of autistic children.

"The summit is a whole new level of interaction for us. We're just playing quarterback," Mark Anselmo said.

On Tuesday, more than 50 vendors from the Inland area and Los Angeles, Orange and San Diego counties will be present. The event at Rancho Community Church is free, and child care will be provided.

Many parents in southwestern Riverside County travel far for their child's therapy. The summit is an opportunity to have all the professionals under the same roof.

When their son was diagnosed, Kathy Anselmo said, "we didn't know the next step. You're diagnosed and then what?"

Autism is the fastest-growing disability in the United States, affecting one child in 150, The spectrum disorder shows itself in abnormal social interactions, communication and behavior. No two children manifest the same symptoms, and therefore, no two children will respond the same way to solutions.

As a parent, you want to try everything for your child, she said.

Finding Their Path

"We're just two parents of an autistic child trying to find our own path," Mark Anselmo said.

Nicholas Anselmo was diagnosed at 2. By the time he was 4, he was making great strides at a special-needs preschool class at Barnett Elementary. Many students lost the one-on-one attention when budget cuts forced the district to reduce the staff, Anselmo said.

"That's the reason we started this foundation. Teachers were taking money out of their own paychecks to buy things," Kathy Anselmo said.

Nicholas, 7, will start second grade at Tony Tobin Elementary in the fall.

The Temecula Valley Unified School District said in a statement it was "extremely fortunate to have such a wonderful partnership with the Our Nicholas Foundation."

The foundation has provided more than 1,500 items to Temecula teachers.

It transformed an empty classroom at Barnett into additional space for special-needs students. At Vintage Hills Elementary, it built a sensory-integration room valued at $4,000.

It supported the expansion of Peer Buddies, a popular Erle Stanley Gardner Middle School program that assigns a handful of students to help those with special needs. It is now at a few elementary schools, and thanks to funds from the foundation, students proudly sport T-shirts and sweatshirts.

"It creates wonderful children who turn into wonderful adults," Mark Anselmo said.

The foundation has raised more than $60,000 since 2006, when it held its first auction at the Pechanga Resort & Casino.

The Anselmos have been able to satisfy every wish list received. That may change.

"Usually, we get an onslaught over the summer," Mark Anselmo said, though he predicts this year's budget cuts will make the needs greater. "I don't think it's going to be pretty."

Plus, the foundation, which has usually focused on Temecula schools, began sending fliers to Murrieta.

"Our eyes aren't aglow with huge numbers. That's why we're trying to bark up the grant tree," he said. They have received grants from Temecula and the Roripaugh Foundation.

Still Growing

Still, the Anselmos' foundation continues to grow.

It has created a board made up of local professionals and the parents of autistic children.

It began a library to lend out often-expensive research books.

It hoped to open a resource center for therapy sessions.

The Anselmos initially dreamed of opening a center to house various therapies, subsidized by the foundation and offered to parents at minimal cost. That dream quickly faded, however, because the cost to the foundation would exceed $2 million a year.

They lowered their sights to a scaled-down version. For about $250,000 a year, the foundation could provide computers and space for therapy sessions.

"We're helping schools now, but people are asking what's going to happen 10 years from now," Mark Anselmo said.

There has been an explosion of new autism cases among young children, but others are growing into adulthood now.

Though the foundation has surpassed its initial goal of donating tools to Nicholas' preschool class, the Anselmos still stick to their roots.

"This is a business we've evolved into without losing why we started," Mark Anselmo said.

Dealing With Autism As Children Become Teenagers

2008-07-26T23:24:00.000-07:00

(WCCO) Life for most teenagers is one big thrill ride. This is also true for 15-year-old Jake Brasch, who is among the growing number of teens in Minnesota living with autism. He literally enjoys the ride when he's at places like Valleyfair, but when it's time for school, life tends to lose its thrill.

Dawn Brasch, Jake's mother, said he would like to go sit with typical kids, but doesn't have the skill to do that.

"He anticipates being rejected or being laughed at or being turned down so he won't attempt to go break into a group," she said. It's difficult for her to tell him it's OK to try because he's so afraid to approach peers.

Dawn found out Jake had autism when he was 18 months old. She said she could tell there was something different because he has a twin brother. Jake and Michael both spoke just after a year, but Jake lost his ability to speak just a few months later. He didn't speak again until he was 5 or 6.

"Michael took on a lot of responsibility for his twin brother when he was very little, saying, 'I must be a bad brother because my brother can't talk,'" Dawn said.

She said things have gotten better as they have gotten older. Now teenagers, Michael and his brother actually have things in common, such as working out.

"He's always trying to get stronger. He always wants to look good for the ladies," Michael said.

Jake said he wants to have a girlfriend, but his mom isn't sure if he could or how she would deal with it. Dating can be an issue for parents of young adults on this spectrum, but that doesn't stop teens with autism from wanting to take girls out.

Cindy Merriam's 13-year-old son John, who is considered high-functioning, is taking an interest in girls as well.

"I had a hard time getting his hair cut because the girls liked his hair curly," she admitted.

John told his mother there is one special girl he wants to date.

"I say, 'I just want to take you out on a date.' That's what most of my friends do, and I'm going to do the same thing," he said.

His father tried to explain to him the girl would have to go willingly, but John was more concerned with getting her out of the house.

"You're going to help me get her outside whether she likes it or not!" John told him.

John's father said the most difficult part of having a child with autism is adjusting expectations and realizing it is, at least currently, a life-long diagnosis. But he said John still enjoys doing typical teenage things, such as playing soccer and running track.

"He's never going to be the star of the team, but you're just happy he can do it," he said.

Another issue many teenagers with autism share in common with other adolescents is sensitivity towards peers' perception of them. John said he occasionally gets a hard time at school.

"There are some people who are not nice and think I'm crazy and stupid and a loser and a stupid retard," said John.

"You have to accept it in your heart, and it's not easy," Cindy admitted.

Because of the mood swings and rage that kids with autism go through, the Merriam family had to put John on medication.

"We actually went a long time and would not allow the medication," Cindy said, until pediatricians told her withholding medication was doing him no favors.

Dawn Brasch put Jake on medication as well.

"I would prefer not to, but I also can't have him -- at this age and this height and this weight-- beating me up because he's so frustrated he doesn't know what else to do," she said.

The rollercoaster emotions teens often encounter can be much more difficult for those with autism to understand and deal with. Jake said his classmates can be mean sometimes, which makes it hard for him and his siblings.

His sister Kelsey Brasch said she wishes he was a normal kid some days, "but then some of the stuff he does, you just don't see other kids do that much. So it's fun to see that."

As hard as being a teenager has been, Jake's special education teacher Angie Gamades said his future looks bright

"I see him in the future being able to do something that he can really excel at with kids," she said. "Jake is very special."

According to Gamades, Jake has shown interest in nursing, a profession she said she could see him in. He told WCCO's Amelia Santaniello he also aspired to becoming a movie actor.

John's parents are hopeful for his future as well, though professionals have told them he probably will end up in a group home. But they aren't ready to give up on him.

"I think there's something in there; we just haven't discovered it yet," Cindy said.

Family is all that's left

2008-07-26T03:00:00.000-07:00

Attaining, and retaining, the American dream never came easy for Rick and Yoko Cummings.

The couple - he an insurance agent, she a nurse at Little Company of Mary Hospital - lived in a modest Torrance home with their two children. Daughter Laurie, 13, has Down syndrome and autism, while their 10-year-old son, Joshua, is also autistic.

At times, Rick Cummings, a 61-year-old Vietnam War veteran, has worked two jobs to support the family, said next-door neighbor Patrick Carnahan, who has known the couple since they moved into their 1950s-era home in 1983.

As the economy worsened last fall, Cummings was forced to move his 84-year-old aunt, who has dementia, out of a skilled nursing facility and into his home because he could no longer afford the cost of her care.

"They're rich in life," Carnahan said. "They just don't have a lot of money."

Then at 8:30 a.m. last Saturday a fire swept through their Walteria home, gutting the inside and destroying virtually everything the family owned, including their now half-melted 1989 Toyota Cressida.

The family escaped just in time; Yoko Cummings, who had tried to rescue Patricia McKibbin, her husband's aunt, was almost overcome by dense smoke. She was pulled through a window by Carnahan and a friend just in time.

It was left to Gemini, the family's Australian shepherd mix, to help McKibbin.

"Gemini is the hero," said Yoko Cummings, 52. "The smoke was so thick I

knew I couldn't save Patricia by myself."

Gemini stayed with the disoriented elderly woman until firefighters arrived. Despite choking smoke and flames, the dog didn't run from the house.

"They heard (the dog) whimpering," Rick Cummings said. "They said without her whimpering they wouldn't have been able to find Patricia."

Gemini was unconscious for 20 minutes after firefighters pulled McKibbin and the dog from the house.

McKibbin has recovered.

Gemini needed two days at the vet to recover from the ordeal, including six hours of oxygen treatment. The bill came to $2,500, although the vet knocked $500 off.

But that is the least of the Cummings' problems.

They are homeless and without transportation, with two kids and an octogenarian relative requiring constant attention and specialized care. (The couple also have two grown children who did not live in the house.)

And virtually everything they owned was consumed by flames, including family photographs and even Rick Cummings' beloved old surfboard - although Carnahan hopes it can be restored.

Fire investigators suspect the blaze started when a lamp was somehow knocked over onto a couch in an enclosed patio.

Insurance would likely take care of rebuilding their home, although that could take up to a year; it's the short-term that poses a challenge for the family.

"These guys just need to get up and running," Carnahan said. "It's having a profound effect on them."

The neighborhood has rallied to their aid.

A neighbor took the family members in temporarily while they look for an apartment; McKibbin is back in a skilled nursing facility.

The local Neighborhood Watch captain issued an e-mail plea for donations.

The home of Carnahan and his wife, Valerie, became an unofficial dropping-off point for donated clothing and other items.

A retired university professor contributed a laptop computer for the 10-year-old boy to replace the one he lost in the fire. Cyberspace provided solace for Joshua even before the blaze; he has not done well emotionally since, his parents said.

Staff at Launch Preschool, which operates a program for autistic children that Laurie and Joshua attend, are holding a carwash and barbecue today to raise money for the family. On Tuesday, a neighboring family will host a bake sale and lemonade stand to raise money.

"They're an absolutely amazing family," said Sarah Perdue, a preschool staff member who has baby-sat Laurie and Joshua for seven years.

"They work so hard, so I feel horrible for them," Perdue added. "I've never seen them lose their patience with the kids and those kids are very trying."

The family has been stunned by the response so far.

"A house is a house; our life is being put on hold," said Yoko Cummings, her voice breaking. "But it's just been overwhelming how people have helped."

On Thursday afternoon, Carnahan sat outside his house and got a little emotional himself as he watched a work crew remove debris and charred belongings.

"I'm watching these people seeing mementoes from their life being brought out and dumping them in the Dumpster," he said. "The devastation they've experienced and what it's doing to their family and what it's done to their way of life."

Carnahan's voice trailed off.

"These guys are the real deal," he added. "I love these people to death."

With a neighborhood's help, the Cummingses hope to put the nightmare behind them - and get their American dream back.

HOW TO HELP

Two fundraisers are scheduled to help the Cummings family with expenses:

The Launch Preschool carwash and barbecue is from 11 a.m. to 3 p.m. today at 4100 W. 227th St.

Ben Walls and his family, who live in the same Walteria neighborhood as the Cummingses, will host a bake sale and lemonade stand from 11:30 a.m. to 1:30 p.m. Tuesday at the corner of Newton Street and Weston Road.

Show challenges autistic stereotypes

2008-07-26T01:45:00.000-07:00

Posted By LYNDA FRAPPIER, FOR THE SUDBURY STAR

Take one mother.

Add one daughter with autistic spectrum disorder.

Add a dash of music, a pinch of melody and generous heapings of passion and inspiration.

Mix well and you've got "KiSara."

Pronounced "kee'-SA'-ra," the mother/daughter singing duo of Kim Souch and Sara Sobey graced Our Friendship Centre in Lively on Wednesday afternoon.

The audience of more than 100, including clients and caregivers from hosts Community Living Greater Sudbury, as well as other local agencies, gave KiSara a warm and receptive welcome.

Dancing, stamping their feet and swaying throughout the concert, some audience members clapped and cheered as Souch and 19-year-old Sobey sang an Elvis tune from the Disney film "Lilo and Stitch" -- one of Sobey's favourite movies.

KiSara also performed some of Souch's own songs, including "Possibilities" and "Like Mother, Like Daughter."

Souch spoke to The Star about the message she hopes the music transcends to all parents and families of children with autistic spectrum disorder, and the importance of celebrating abilities and talents.

"There's too much focus on "disabilities," Souch said.

"You have so much help assessing what's wrong. Our song, 'Possibilities,' focuses on talents you can build on.

"I've been a musician for many years," Souch said. "Sara's very musical. She literally sang before she spoke."

When Sobey was three years old, her mother began to notice something different about her.

"She seemed disconnected," she recalls. "It was hard to peg down as to what it was and you go through the whole cycle."

Souch said her daughter was diagnosed with autistic spectrum disorder, more commonly known as autism, three years later.

At age 8, Sobey took to the stage, performing in school concerts. Since she was 12, she has been accompanying her mother in performances for audiences whose appreciative members offer nothing but compliments and praise.

Souch, who helped form the Huron Perth Chapter of Autism Ontario located near her Seaforth, Ont., home, said she learned everything she could about autism and how and why it occurs.

She says autism creates an atmosphere of hyper-sensitivity within the child, and that everything surrounding him or her is felt at maximum volume. She said the condition not only affects sound, but can also result in a visual "overload."

For example, a child might claim to see "particles of air."

She said society and the medical profession have come a long way from the days autism was referred to as "The cold-parent syndrome."

Because of these deep-rooted and unfounded diagnoses, Souch emphasized how important it is for parents and families to turn their experience with autism into a recipe for hope and celebration.

Sudbury's visit was part of the final leg of their "Kaleidoscope Ride" tour, which took KiSara -- accompanied by Talia Williamson on bass, Brian Mole on drums and Roger Williamson on lead guitar -- to cities such as New Westminster, B. C., Calgary and Thunder Bay.

Sara, whose rendition of "Over the Rainbow" garnered a standing ovation, was happy to talk about the music she listens to when she's not performing.

"Just about anything," she said, smiling as she clutched her treasured Disney DVDs in her hand.

She shook her head and added, "Except rap and death metal."

Autism: Making new plans and goals for your children

2008-06-15T04:02:00.000-07:00

JENNIFER JONES
Contributing Writer

Teresa and Kelley Nakoff look autism in the eyes as they go through their day-to-day lives as the parents of their 12-year-old son, Chase.

A student at Rodger O. Borror Middle School, Chase was diagnosed with severe autism in 1998, around the time of his second birthday.

Adjusting to the news of having a son diagnosed with autism took time, Mrs. Nakoff said.

“Even before your kids are born, you make such plans for them,” she said, wiping a tear from her eye. “But when you find out something like this, you just have to make new plans and goals for them.”

Mrs. Nakoff said living as the parent of a handicapped child brings with it a unique set of challenges.

“You really have to learn how to take life day-to-day,” she said. “It does get better, it does get easier — but it’s always a challenge.”

“An early intervention specialist mentioned autism to me when Chase was about a year-and-a-half, because she saw a lot of characteristics in Chase. She recommended we take him to see a specialist,” Mrs. Nakoff said. “I refused to believe it. In my quest to prove her wrong, I started reading everything about autism that I could get my hands on. What I discovered, is that a lot of the things being described are a lot like Chase.”

When Chase was 2 years old, his parents began the process of Applied Behavioral Analysis (ABA) therapy in their home. Chase went to preschool both in the Wilmington City Schools, and at the Town & Country School at the Nike Center. Chase attended school in a regional classroom specially designed for autistic children, which was housed in Lynchburg.

When the Wilmington City Schools opened its special classroom for autistic children, Chase began attending Holmes Elementary. This year, he has transitioned to Rodger O. Borror Middle School, where he is taught by teacher Debra Flint, and aided by Sharon Carr and Cindy Miller.

“He has done superb this year,” his mother said, unable to mask the pride she has for her son. “He is just going so far this year — and I think it has a lot to do with the set-up at the middle school.”

The set-up Mrs. Nakoff is talking about is one with space that allows for the accommodation of Chase’s sensory needs. Like many children with autism, Chase can become overwhelmed by the sounds, sights and expectations of a classroom. Without the ability to use words to express his frustrations, Chase has been known to show his frustrations by jumping, yelling and striking out. But — not at Rodger O. Borror Middle School.

The walking track around the gymnasium has become Chase’s refuge. When staff members see his mounting frustration, they can take him to walk a couple of laps around the gym. This allows Chase to center himself for a successful return to the classroom.

The Nakoff’s have another son, Dylan, who is a fifth-grader at Holmes. Mrs. Nakoff said Dylan, who is a part of the gifted programming offered by the Wilmington City Schools, is good with his brother.

“We’ve always told him, ‘He might be different, but he’s your brother.’ He loves his brother very much,” she said.

Mrs. Nakoff and Susan Frazier have joined up to form a support group for parents of children with autism. The group, which they call SPEAK (Supporting Parents and Educators of Autistic Kids), meets monthly.

Messages of autism awareness can be seen on many television commercials and billboard ads. Mrs. Nakoff said she wishes she could make the world understand that kids diagnosed with autism “aren’t bad kids.”

“When we’re out and people see our kids meltdown, it’s not just bad behavior. They’re not spoiled brats,” she said. “These kids have social and behavior problems that aren’t their fault. I can’t just spank an autistic kid and make it all go away — but some people still think that.”

Mrs. Nakoff is often one of the first people who reach out to families in the area who receive a diagnosis of autism for their children. “We have to be there for each other,” she said.

Her advice to them: “I share with them the best thing that was ever said to me. When Chase was really little, someone told me that he might not be what I expected, but he is still a treasure to me.”

The tears Mrs. Nakoff wiped away after she said this only go to prove that Chase, indeed, is a treasure to her family.

Gold Medal Moms Prepare To Storm Beijing

2008-06-06T07:07:00.000-07:00

Jennie Finch thought she was busy back in 2004 when she led the U.S. softball team to Olympic gold in Athens. Already arguably the most famous softball player of all time, the media requests and business opportunities only intensified after the Games, and Finch struggled to balance work and softball with her relationship with then-fiancé, now-husband Casey Daigle.

Then an 8-pound, 10-ounce bundle of joy named Ace entered their lives on May 4, 2006, and Finch learned the true meaning of the word "hectic."

"It's like having the world in your hand and throwing it up in the air and letting it fall wherever," Finch, 27, said. "You just collect the pieces and do whatever you can."

Finch didn't wait long to tackle life as a working mom. She was at the national tryouts just five weeks after giving birth, and she and Ace hit the road with the team soon afterward, with the diapers, bottles and toys packed up with the batting helmets, gloves and cleats. Today, two years later, Finch estimates her son has spent a total of just four months in his actual house, and Ace won't be adding to that number any time soon. After he and Mom meet Dad, a pitcher for the Minnesota Twins, at home on Sunday to celebrate his second birthday (and, of course, Mother's Day), Ace rejoins the softball team as they prepare for the Olympics. That means they'll spend all but eight days on the road in June and July before heading off to Beijing.

But time away from home doesn't mean Ace loses out on playmates his own age. Catcher Stacey Nuveman's 11-month-old son Chase and pitcher Lisa Fernandez's 2-year-old son Antonio are also often with the team, and at the Beijing Olympics their strollers won't be the only ones pulled up to the sidelines. With more and more women finding that having children and pursing an Olympic dream not only go hand in hand, but can actually provide a competitive edge, this might just be the summer of the gold medal mom.

Viewing competition through mommy glasses
"I find being a mother is a huge advantage," said Melanie Roach, mother of three and Beijing hopeful in weightlifting. "Of course, I'm probably a little more tired than I might be if I didn't have children, but I think they provide me the balance that I need to keep my mind off of lifting. When I'm in the gym, I'm in the gym, and that is my focus. But when I'm not in the gym, I'm enjoying being a mom and taking care of those responsibilities ... They really do provide me with the balance that I need to be a more complete athlete."

Roach tried for years - and in two different sports - to reach the Olympics. It was not until she'd had her three children, including a son, Drew, who was diagnosed with autism at the age of 2 Â½, that she gained the perspective she believes will propel her to Beijing.

"I think I was a pretty selfish athlete," she said. Roach, 33, started as a gymnast, and made the unlikely transition to weightlifting 10 years ago. She found success quickly in her second sport, but injuries thwarted her attempt to make the Olympic team.

And then Drew was diagnosed with autism.

"That really brought into perspective all the things that I thought were so devastating in my early career, in my 20s," Roach said. "All of a sudden, not making the Olympic team seemed so minute compared to having a child diagnosed with autism ... [It] made weightlifting just a bonus part of my life. It's not a stress at all. It's really something very special, and just an exciting opportunity that I have to go back and finish what I started eight years ago."

Finishing that journey takes an entire team, Roach readily admits. Her husband, Washington state legislator Dan Roach, pitches in every way that he can, and her mother, Bonnie Kosoff, recently moved in to help with the children.

"I'd like my children to learn that anything is possible if you put your mind to it, and that when you make a decision to do something like pursuing the Olympics, like I have, it needs to be a family affair," Roach said. "It needs to be a group effort, and you hope it's something that would bring your family closer together."

The team behind the team
On a recent softball tour through the Southern states, Finch's aunt and uncle joined the team caravan, allowing the moms and kids to follow the bus in their motor home for a few days. There's always a grandma or aunt or dad in the mix of softball coaches, players and trainers, thanks to a donation by a UCLA alum that pays the travel expenses for a relative of each of the softball moms. USA Softball helps out by providing the moms with their own hotel rooms, rather than doubling up like the other players do.

"I'm just so grateful that [Ace] can be on the road with me," Finch said. "I can't get enough of him."

Three-time gold medalist and professional basketball star Lisa Leslie, 35, relies on her own mother to watch 10-month-old Lauren when they travel.

"I feel really comfortable when she's left with grandma," Leslie said. "I can focus and not worry about her too much."

Like many children of professional athletes, Lauren is already a world traveler, having been overseas and to more than 10 states. While the ability to take Lauren on the road allows Leslie to maintain some semblance of her previous life, more things have changed than stayed the same since she entered motherhood.

While her teammates jam to the latest hits in the locker room, Leslie can't get "The Wheels on the Bus" out of her head; when the team goes out after a victory, mom heads straight home to tuck Lauren in. And those are only the most superficial differences.

"Being a mom changes everything," said Kate Markgraf, USA soccer star and mother to 22-month-old Keegan.

Markgraf, a defender who holds the distinguished record for most games played for the U.S. without a goal scoring, has already won two Olympic medals. But coming from a team with a long tradition of soccer moms, she knows better than to let her new role stop her from pursuing a third.

"I think being a parent puts you at an advantage," Markgraf, 31, said. "I don't sleep nearly as much as my teammates. But my best game since becoming a parent was after I stayed up the entire night because my son was teething. And I ended up having the best game of the year. So I think it's definitely an advantage because it just puts everything in the right perspective."

Leslie agrees.

"It's just an awesome feeling to see her little face and her excitement in the morning. It really drives me."

Mother Of 2 Autistic Children Wishes For Understanding

2008-06-06T07:02:00.000-07:00

A mother of two small children said she's horrified by the way others sometimes treat her family and she'd like you to help make it stop.

Christine Ferguson has two children, both with autism.

She said she knows that, right now, there is no medical miracle to "fix" autism.

Therapy helps but her children are unpredictable and often very difficult in public.

She said the lack of tolerance from others just makes it worse.

Playtime at the Ferguson's looks very typical, not what you expect from children with autism.

But that's the problem, according to Ferguson, the mother of 2-year-old Paige and 3-year-old Tyler.

Tyler and Paige are highly sensitive to their environment and their behavior can change at any time.

When things fall apart in public, as it often does, Ferguson said some people are less than sympathetic.

"They don't understand that their comments, their looks, you know, their whole act toward us is very hurtful because it is not accepting," Ferguson said. "There is nothing physically wrong with them. They perceive it as this is just an undisciplined child and they feel that it's OK to say something."

She said it gets really bad when people say unpleasant things directly to the children.

Heading home isn't always an option.

"If I left the store every time my son did something or my daughter did something I wouldn't have clothes or groceries," Ferguson said.

She said by extending a higher level of tolerance to those with differences, her life and the lives of her children would improve. Like it did during a trip to the hair salon.

"Normally, Paige screams and she kicks and she does not want to be there. And it's a very dangerous struggle for her because she could hurt herself around the scissors or could do something that could cause harm to herself," Ferguson said.

But that didn't happen during a recent haircut because instead of becoming angry and frustrated Ferguson said the stylists at Best Cuts did everything to help.

Three stylists went to work at no extra charge and Paige was transformed.

Not only did she get a cut, she now loves the salon.

Ferguson said the women have no idea how much it meant to her.

"Everybody in the world wants to be accepted and everyone wants to know that it's OK to be who they are," she said.

"Just to know that it made the difference for someone, it definitely helps motivate you to keep doing it," salon manager Christy Bishop said. "We just have to try and be patient with people with anybody not just kids with special needs with anybody."

Ferguson said some parents with autistic children handout business cards that say, "Please be understanding, my child has autism."

She often wears a T-shirt in public that says something similar.

Ferguson said of course, some people are very understanding and helpful.

She said all she really needs is a smile or a quick glance of understanding.

My brother, John by Jacquie

2008-06-06T04:24:00.000-07:00

I am writing as the sister of John, who was born in the North East of England in 1958. John is my younger brother by five years. I was so excited to have a baby brother and can remember his homecoming. My dad, being the archetypal macho Northerner that he was, typical of this era, went out and bought John a pair of boxing gloves and a train set, obviously expecting his son to be a chip off the old block.

John was a beautiful, blonde baby with huge blue eyes. He was seemingly 'normal'. He walked and talked at the expected milestones and, in hindsight, the only clue that we had of any differences in his development was that he was exceptionally clingy to Mum; he was scared to venture across the doorstep (he would scream) and would not engage with anyone else. John loved his building cups which stacked one on top of the other and I had fun building them up and knocking them down. John, however, was disinterested in this, preferring to place each coloured cup around the room. If they were moved, or one was lost, he was inconsolable for the whole day.

My mum was concerned at his clinginess to her but our GP dismissed her worries as those of an over-anxious mother. At the age of three, John had normal verbal skills and his memory seemed phenomenal. He could recite all the road signs in the highway code without error. However, he was extremely wary of other people, always avoiding eye contact and getting increasingly difficut for my mum to manage. He had tantrums which became worse as he struggled to make sense of his world.

When he was five years old I remember him walking the street with a large, toy red bus set at an awkward angle to his temple. The bus was pointing skywards and he was looking into the bus. We could make no sense of this at all. He did this frequently and he also had a fixation about spires, steeples and television aerials. The building cups, for him, now represented local churches and we knew that there would be trouble if we moved 'St Barnabas' or 'St Paul's'.

One day I took his bus, put it at the funny angle on my head just as he did, and tried to see what he was looking at. I discovered that he was using the reflection of the bus windows at a strategic angle to look at roof aerials. As he walked along the street he got a moving personal picture show of every rooftop aerial and telegraph pole. It also meant he did not have to strain his neck by looking up for significant periods of time. John's world was mapped by these projections and they are still fundamentally important to him. He was disinterested in people and when later he realised that other families lived in the other houses on our street, he would need to know what colour the mattresses were on their beds. His first comment when introduced to someone used to be, 'What colour is your mattress?'

At home, I learned that if John was calm and happy then so were the rest of my family, and my dad was less likely to get angry. Dad's anger could be quite terrifying.

Perhaps to help cope with the underlying tension at home, John developed an alter ego called Jonnie Comics. If John had done anything wrong, then Jonnie Comics was to blame. Jonnie Comics was around for a couple of years. Mum knew there was something wrong but no-one listened. All her fault, they said: she is too sensitive and is an over-protective mum. The other kids sensed he was different, too. He was starting to become a victim but I was always on red alert, being the older sibling. I got into numerous scraps because no-one hits my brother; it's not allowed! Besides, Dad had shown me how to use those boxing gloves he'd bought for John.

When John started school, he seemed to be unteachable. He would not settle, and at last people took my mum's concerns seriously. Psychiatric assessments followed and questions were asked about our family dynamics: was I jealous of my brother (nothing was further from the truth)? Was he like my dad, a volatile character? My mum queried the times she had seen my dad clip John across the head, which parents often did then - it was accepted and I had had more clips than anyone. They never really hurt and Dad was usually sorry afterwards.

My dad retreated to the pub, full of guilt that maybe his son's handicap was a direct result of his own actions or that John had inherited his own so-called madness (my dad was rarely able to control his anger and was nicknamed Mad Ted). It was, sadly, a time of sheer ignorance. Words like autism, psychotic and schizophrenic were bandied about with no true understanding of their meaning. Certainly they held no real meaning for us.

John attended a children's assessment unit for six months as a weekly boarder and as a result was offered a place at a special needs boarding school in Gloucester, under the Rudolf Steiner foundation. John seemed to take easily to living away from home. It was Mum who struggled to let him go. We accepted that he was mentally handicapped; someone had mentioned the word 'autistic', which accurately described a great deal of John's behaviour.

My mum went on to have two more children and John would come home for the holidays. However, she struggled with his constant, repetitive behaviour and questions. On the plus side, John was getting better developmental skills and could play the glockenspiel and piano if he was in the mood. He did it instinctively, playing any tune with one hand. On the minus side there was always an undercurrent of despair at home that was not openly expressed. There was still blame and tension, and John was increasingly aware that he was different. He would ask why he had to go away to school, unlike his brothers and sisters. He asked if he was handicapped. What did handicapped mean? Would he ever get married? We skirted round these issues, never fully dealing with them because we did not know the answers ourselves, really.

John was manic, always anxious, often difficult. Thank heavens for the Beatles, 60s music and the pop charts. John loved, and still does love, all 60s music. He can tell you instantly what was number one in July 1967. He would listen to music for hours and this became our saviour. He was also becoming a very handsome young man who was starting to attract female attention but he was totally disinterested. As far as I know sexuality has never been a part of his world, then or since.

As he grew up, John was fortunate to be given a place at another special needs institution for teenagers in Bristol. All this travelling to and fro gave him another fixation - railways. He loved the trains, lines, stations and anything else to do with railways. He seemed to be doing well, but then our mum died at the age of 47 after two horrendous years with a very uncommon cancer. John did not attend the funeral. He very matter-of-factly said that I had taken Mum's place now. No emotion. Dad now had an 11 and 13-year-old to look after and I was newly married with my first child, who was just one year old. Dad struggled, so I did, indeed, take on the role of mum to all.

I managed to get John into a village community for people with learning difficulties for a few years, which was closer to our home. Although it was great for him initially, he became increasingly withdrawn. After all, where were the rooftop aerials in this picturesque village? Why should he care about the cows? (Once, he let them all out of their field and still thinks the police will come and get him for that, no matter what we say.) As we all do as teenagers, John was struggling to make sense of who he was, and was starting to suffer from depression.

His depression worsened and he was placed in a mental institution. Just being there with some severely damaged patients had a distressing affect on John. I was aware that it would and tried to get help, but was not taken seriously. John then jumped out of a window and sustained a serious head injury. His psychiatrist was quick to ring and stutter about it not being his fault and I was not prepared to go down the blame route. I had had enough experience of the damage and negativity that this brings. Instead, I changed his psychiatrist and gave my word that John would never go to that institution or medic again. I kept my word. John was, thankfully, then properly looked after by a great team of professionals who still review and assess all aspects of his life, in particular his medication, which controls his mood.

John is now 49 years old and lives in a hostel for vulnerable adults, where he is happy. The hostel is run by a woman who is very capable and enlightened and who understands her residents' individuality as well as managing their safety. John can come and go when he pleases and can frequently be seen in the coffee shop or the local pub, where he has an orange juice whilst listening to the jukebox. The hostel is in a village at the edge of town where people have known him for 15 years and he considers it home. He has come to terms with his handicap. He understands that he needs some assistance with daily life and routines. He understands that it may be difficult for him to marry as he would struggle with the practicalities of having a wife, but we never take away his hope. His hope is that one day he will have a place of his own. I will never take away that hope but I do tell him it is unlikely.

When he comes to stay with me for the weekend he now holds my hand for a fleeting second, tells me that he loves me, and says that he misses Mum but that I have taken her place. He loves the bedroom on the third floor of our house where he can look out at aerials while listening to 60s music.

A few years ago, he had a special 40th birthday where he gave a speech of thanks to everyone and sang with a friend accompanying him on guitar. He was amazing. Dad, who never really accepted him or understood, cried.

I have just given you a snapshot of our journey with John. When I would meet people who did not know about his condition, I would always introduce him as my special brother, so that they could be alerted early to save any potential embarrassment. John said to me, "Why do you say that? We are all special, aren't we?" So I now introduce him simply as my brother, John.

The important message that I would like to convey is that John has developed so much emotionally and continues to develop and learn - we don't know what his limits are. Once I fully accepted John for the wonderful person that he really is and stopped worrying about other people's issues with him, we started to enjoy life more. Society now is much more accepting. For example, buying clothes for John used to be a nightmare - he hates it. But in the last few years staff in shops have been fantastic and so helpful, particularly the younger ones - things just keep getting better. As a family we have faced considerable adversity but we have also been lucky, with excellent support from some professionals and good people along the way. I am privileged to have John as my brother and I love him very deeply.

By Jacquie

Super Mom: Mother and Teacher

2008-06-06T03:58:00.000-07:00

Her son's autism led Yarisa Echevarría to open a specialized school.
By JENNY MERO and produced by ASTRID RODRIGUES

Yarisa Echevarría, 31, sometimes feels like someone has kidnapped her son, Joseph. Without warning, he went from a high-spirited and intellectually curious 18-month-old to a child she couldn't recognize. Hints of Joseph's once affectionate demeanor, infectious laughter, and even his growing vocabulary were gone. Worse yet, he stopped responding to his name. After months of pushing the pediatrician for testing, the culprit had a name: Autism. Joseph was diagnosed with mild to severe autism. "The hardest moment is when they tell you that something is wrong with your child, and this is it," says Echevarría.

Unlike a cold, a fever, or even depression, there is no medication for autism. In fact, little is known about the causes of the developmental disorder. Parents will talk about the anguish of trying to get through to their autistic children, who often stop interacting, communicating, and learning. In some instances the signs can be even more dramatic: children rock or flap their hands for hours. And, autism isn't something children outgrow. In severe cases, the disorder keeps them from ever becoming fully functioning adults.

Determined to give Joseph a fighting chance at a normal life—which is possible—Echevarría sought help from specialists. At times, she'd intervene and supplement his lessons when she saw he wasn't making progress. Anxious to help him understand concepts, Echevarría would sometimes find herself galloping on the floor so he could make the connection to the horse on the index card.

Then two years ago, she took that determination a step further, leaving her job in finance to get formally trained to work with Joseph's autism. Echevarría hoped this would help Joseph. And when she hit a wall when she was looking for adequate summer programs and other professional resources, Echevarría simply decided to start her own with the help of one of Joseph's teachers.

After seven months of working tirelessly to establish the non-profit, securing an affordable space, hiring teachers, Echevarría opened Learning Links (now a full-fledged school that goes up to second grade) last June. Though most of the 15 students are Hispanic, a reflection of their Miami surroundings, not all have developmental disorders. Because the goal of the school is to eventually trickle the students back into a regular, age-appropriate classroom, the curriculum is set up in a way that makes the program beneficial for any learner. For example, if a student has mastered the art of cutting paper with scissors and another hasn't, one can teach the other. Rosie Perez, a parent of a daughter with no known developmental issues and a son with Fragile X Syndrome, was simply delighted that she could send both to the same summer camp. Amazed at the progress both children made—and that her son, who often cried when left, was now waving her goodbye—convinced her to switch him to the school. "Yarisa is doing this for her son, but she's helping out so many parents in the process," says Perez. "It's that kind of emotional tie that's missing from many of the programs."

Grandfather builds Web browser for autistic boy

2008-06-06T03:47:00.000-07:00

John LeSieur is in the software business, so he took particular interest when computers seemed mostly useless to his 6-year-old grandson, Zackary. The boy has autism, and the whirlwind of options presented by PCs so confounded him that he threw the mouse in frustration.

LeSieur tried to find online tools that could guide autistic children around the Web, but he couldn't find anything satisfactory. So he had one built, named it the Zac Browser For Autistic Children in honor of his grandson, and is making it available to anyone for free.

LeSieur's quest is a reminder that while the Web has created important communication and educational opportunities for some people with cognitive impairments, computers can also introduce new headaches for families trying to navigate the contours of disability.

The Zac Browser greatly simplifies the experience of using a computer. It seals off most Web sites from view, to block violent, sexual or otherwise adult-themed material. Instead it presents a hand-picked slate of choices from free, public Web sites, with an emphasis on educational games, music, videos and visually entertaining images, like a virtual aquarium.

Other programs for children already offer that "walled garden" approach to the Web. But LeSieur's browser aims to go further: It essentially takes over the computer and reduces the controls available for children like Zackary, who finds too many choices overwhelming.

For example, the Zac Browser disables extraneous keyboard buttons like "Print Screen" and turns off the right button on the mouse. That eliminates commands most children don't need anyway, and it reduces the chance an autistic child will lose confidence after making a counterproductive click.

Children using the Zac Browser select activities by clicking on bigger-than-normal icons, like a soccer ball for games and a stack of books for "stories." The Zac Browser also configures the view so no advertisements or other flashing distractions appear.

"We're trying to avoid aggressive or very dark or complicated Web sites, because it's all about self-esteem," LeSieur said from Las Vegas, where he lives. "If they're not under control, they will get easily frustrated."

Autism generally affects a person's ability to communicate, and Zackary doesn't speak much. But his mother, Emmanuelle Villeneuve, reports that the boy can start the Zac Browser himself. He enjoys listening to music through the program and trying puzzles - things he always liked before but hadn't been able to explore online, she said from her family's home in suburban Montreal.

Perhaps most tellingly, while he still acts out aggressively against the TV, she said, he doesn't try to harm the computer.

LeSieur didn't create the browser by consulting with people who are considered experts in disorders on the autism spectrum. The small software company he runs, People CD Inc., essentially designed the Zac Browser to meet Zackary's needs, and figured that the approach would likely help other autistic children. Early reviews have been positive, though LeSieur plans to tweak the program so parents can suggest new content to add.

Several autism experts were pleased to hear of LeSieur's work, and not surprised that he had not previously found anything suitable for Zackary.

After all, the autism spectrum is so wide that a particular pattern of abilities or impairments experienced by one autistic person might be reversed in another. In other words, creating software that would work for huge swaths of autistic children is a tall order.

Indeed, the Zac Browser might do nothing for another autistic child.

That said, however, LeSieur's approach of limiting distractions and using the software as a confidence-boosting tool "is a very good idea," said Dianne Zager, director of the Center for Teaching and Research in Autism at Pace University. She said many autistic students tend to do best with educational materials that make unnecessary stimuli fade from view.

"Some parts of the Web have so much extraneous material that it can be distracting, and for the nonverbal child, there might not be an ability to negotiate that information," added Stephen Sheinkopf, an autism researcher at Brown University.

This is not to say the Web is necessarily barren for autistic children. James Ball, an autism-education consultant in New Jersey, said many children he works with enjoy Webkinz, where kids care for virtual pets. Others find chat rooms and instant-messaging a lower-anxiety way of socializing than talking to someone in person, he said.

But the Zac Browser might turn out to be the rare tool that can be configured to strike a chord with a wide range of autistic students, said Chris Vacek, chief innovation officer at Heartspring, a special-education center in Wichita, Kan. Vacek is considering using the Zac Browser at Heartspring.

One huge advantage is that the browser is free, while many assistive technologies cost upward of $5,000 and work only on specialized devices. But Vacek, himself a parent of an autistic child, said the Zac Browser's best credential is that it appears to pass what he calls Heartspring's "acid test": It has a high chance of increasing a child's ability to do things independently.

"Let's hear it for grassroots innovation," Vacek said.

An Adult with Autism The Story of Jamie Part 4

2008-05-27T23:44:00.000-07:00

A few days later, Alice was at home preparing for the flight she and Rob would take to China. The phone rang. It was someone from Easter Seals.

Rob was dead.

Alice heard the words, but couldn't believe them. Her heart felt like it might pound out of her chest.

Doctors suspect Rob's death was related to his epilepsy, though they are still not sure of an exact cause. He was 36 years old.

Numb and grieving, Alice left the next day for Shanghai alone, convinced news of the coach's death had to be kept from her son. She feared it would be too much for him to handle. She wouldn't let it destroy everything Rob had helped Jamie achieve.

Jamie found himself in the heart of a neon-draped city of 18 million. Aging high-rise apartments spread across the landscape like tobacco-stained teeth, laundry covering every window in patchwork colors. Rivers of cars, taxis and rickety trucks droned incessantly and filled the tropically humid summer air with an almost sooty exhaust.

This was a city born to overwhelm the senses.

Jamie had spent several days living with a Chinese host family. They made dumplings together around the kitchen table. The mother and father tried to teach Jamie origami, but he grew frustrated and slumped down alone on the family's sofa, asking if he could just watch TV.

At opening ceremonies, he marched through Shanghai Stadium to the cheers of more than 70,000 spectators and watched sparks from a brilliant array of thunderous fireworks fall from the sky.

Through it all, Jamie seemed remarkably unfazed, as if defying autism. Maybe the weeks of mental preparation worked. Maybe a survival instinct, triggered by a world of rampant changes, kept his emotions in check. Or perhaps it was just another unexpected quirk of his mysterious disorder.

On Oct. 3, five days before his competition, he sat on a weight bench, working out in a narrow, steamy gym. A few spots down was a group of Syrian powerlifters, and past them a cluster of athletes from the Philippines.

He calmly followed his coach's commands. After one lift he looked up at Mitch.

"I did real good, right?" Jamie asked, nodding his head yes, not waiting for an answer. "I got it real good that time."

He flexed his muscles and pounded his chest.

"I'm monstered up!"

When he got off the team bus at the hotel, Alice stood waiting. After a hug she stepped back and eyeballed her son top to bottom.

"Baby you've lost weight," she exclaimed with motherly concern. "Have you been eating enough?"

"Yeah, Mom. I'm eating good," Jamie said.

She lifted his Team USA shirt and examined his belly.

"I don't think he's getting enough food," she said, shaking her head.

They chatted in the hotel lobby. Alice wanted to know every detail of the trip. But after about 10 minutes, Jamie grew distracted.

"I better go up to my room now, Mom," he said, heading off to the elevator without even a kiss goodbye.

Alice smiled.

"He's treating me like he does at home," she said, shrugging her shoulders. "So at least I know he's comfortable."

Amid all the distractions, Jamie never asked why Rob wasn't there.

In fact, he didn't notice Rob's absence until about five minutes before he was supposed to compete.

Jamie was with his mother near the front of Zaibei Gymnasium. Hundreds of Chinese schoolchildren, all dressed in white, sat in the stands rattling toy clappers that filled the room with the sound of plastic thunder. A stage rose up from the gym floor, backed by a curtain that carried a broad banner announcing the theme of the 2007 Special Olympics: "I know I can."

Racks of circular weights sat center stage, bathed in light. The recorded boom of an up-tempo symphony pulsed through the room.

Jamie looked at Alice, confused.

"So Rob's not going to be here, then?" Jamie asked.

"No, dear. Rob got sick and he wasn't able to make the flight."

"OK. So Rob's not going to be here then, right, Mama?"

"That's right, baby. But listen."

Alice pulled Jamie close. She put her hand on his chin and made sure his eyes were looking into hers.

"Rob's right here, Jamie," she said, pounding the flat of her hand on his chest. "He's in your heart."

Jamie nodded.

"You can do this," Alice said. "You can do this. You can do it."

"I know," Jamie said, unconvincingly. "I can do it. I believe it."

He tried to shake his mom's hand. She pushed it away and grabbed him, squeezing him tight.

The Team USA powerlifters were a boisterous group, nearly two dozen men and women of such disparate heights, body shapes, abilities and disabilities that no two seemed remotely alike. But they were unified, and loud:

"C'mon Jamie! Let's go!"

Jamie walked onto the stage, sank his hands into a bowl of talcum powder then clapped them together. He seemed to like the dramatic effect of the thick puff of white dust.

He was competing against five other men in his weight class.

His first attempt was light, 140 pounds, but it was critical.

Just days before the competition, Mitch had unwittingly put more weight on the bar than Jamie could handle. When he wasn't able to lift it, Jamie became flustered.

He talked about it for a day or so, asking Mitch, "You're not going to put too much on the bar, right? I'm going to be able to lift it next time, right?"

During his first lift at the Illinois State Games in June, Jamie had lost his composure when the judges' lights turned out to be white instead of the familiar green. It ruined the rest of his performance. If he failed this first lift, a similar meltdown could follow.

Jamie approached the rack, fixed his shoulders under the bar and assumed the starting position. On command, he bent his knees and began to squat, head up, eyes focused forward. He flexed his legs at the next command, driving himself to an upright position, then dropped the bar back onto the rack with a clang.

The three judges illuminated two white lights and one red. Two out of three meant a good lift.

Jamie's hands shot up in the air. This time he had been coached to understand that there would be no green lights, that white meant good.

He knew he had done it.

His second squat was flawless, so was the third.

Each time Jamie came to the stage, his confidence seemed higher. He steamrolled through three sets of bench press, pumping his fist harder after each good lift.

The crowd loved him. After each round he turned to them, put his hands flat together in front of his chest and bowed like a warrior.

The final competition was the dead lift. The bar rested on the ground—260 pounds awaited.

Standing upright, Jamie spread his feet wide. He squatted down, back at a 45-degree angle to the floor, butt thrust out, long fingers wrapped tight around the shiny silver bar.

His eyes moved past the crowd in front of him and on to a green Special Olympics logo on the wall at the front of the gym.

A judge said, "Lift!"

Jamie's mouth opened in a near-perfect circle as he slowly pulled the bar up. He scowled like one of the pro wrestlers he idolized.

As his hips straightened and the bar moved past his knees, he released a guttural RAHHHHHHH!

The form was perfect. No mistakes. All white lights.

Mitch let out a whoop. Jamie had just become one of the best in the world.

He medaled in each lift—bronze in the squat, bronze in the dead lift, silver in the bench press—and won silver for the overall competition.

Alice, in the stands, smiled tearfully. Mitch, on the floor, could barely believe it.

"He was more focused than I've ever seen him," the coach said, breathlessly. "All these people and all these distractions. I just told him, 'Focus. It's just you and the weight.' I'm so damn proud of him."

It was just after 4 a.m. in Chicago. The teachers and therapists who had taught Jamie to get up every day and navigate an often frightening world didn't yet know of his success. Neither did Rob's family, who had buried the coach in his hometown of Chicago Heights days earlier. The news would reach them soon enough.

On the stage in Zaibei Gymnasium, Jamie stood tall and soaked in the attention. He bent his knees and bowed his head, as another prize was gently lowered around his neck.

In all his years of competition, bronze and silver had never been good enough for Jamie. He had always shipped those medals to his grandmother in Texas.

But not this time. These he would keep for himself.

Jamie returned from China on a Friday night and wanted to go to work at Pete's Produce first thing Saturday morning. Alice said no, he needed to rest.

She also knew she had to tell him the truth about Rob.

They sat on Jamie's narrow bed, flanked by clusters of gold medals hanging on the wall—23 to the right, 22 to the left, another batch of 24 stuffed in the closet. Rob had played a role in Jamie getting most of those awards. They paved his way to victory in Shanghai.

Alice took Jamie's hand and slowly explained what happened to his coach.

Rob's dead, Mama? he asked, over and over again.

Yes, baby, she said. He's gone. But I just know he's so proud of you.

After about 10 minutes Jamie said he needed to watch TV. Alice knew that was her cue to leave.

The next morning they drove to a drugstore and Jamie brought up Rob again. This time he cried. It was the first time she had ever seen him cry for anybody other than himself.

All weekend Jamie said over and over that he couldn't believe Rob was dead, as if repeating it would force the idea into the tight structure of his life.

On Monday, Oct. 15, Jamie returned to work at Easter Seals. He strutted, shoulders thrust back, his four World Games' medals fanned across his chest. He soaked up the pats on the back, the handshakes from those who stopped to admire his bronze and silver awards.

"You the man, Jamie," said one teacher, passing by.

"Yep," Jamie said, nodding his head, "I'm the man too."

At 9:55 a.m., the young autistic adults in the vocational program began to file into the basement room and take their seats at folding tables, signaling the beginning of the work day. Jamie watched his friends for a moment then turned on his heels and walked to his black backpack hanging on the wall.

He bent his head down, lifted off the four medals and stuffed them into the backpack.

He went to his table and looked down at the array of red bins, at the screws and washers and small plastic parts. A moment passed. Then he spoke, to no one in particular.

"I better get back to work."

An Adult with Autism The Story of Jamie Part 3

2008-05-27T23:30:00.000-07:00

One Friday in August, Jamie took a rare day off from Pete's Produce—he went to a friend's birthday party. The following Monday, Alice took him, as always, to the produce store to pick up his paycheck.

The check amount was smaller than normal because of the day off.

Mama, my paycheck's wrong, Jamie said.

No, baby, you took Friday off. Remember?

No, Mama. This isn't right. Why is my paycheck wrong?

As they drove north toward Easter Seals, Jamie's frustration built. Alice tensed up. She knew what was coming.

Jamie hurled a roll of mints against the windshield, sending them pinging off the windows. He lifted one of his legs up and brought his foot down with a violent thump on the dashboard, his screeching drowning out the soft soul music on the radio. He smacked himself violently in the face and chest.

Though she had been through it many times before, Alice was terrified. She didn't want to pull over. She wanted to get him to the school as fast as possible, and she called ahead to tell counselors there what was happening.

When she pulled into the parking lot, two of the teachers, who had known Jamie since he was a kid, were waiting. He was still bellowing as they led him into the school.

For half an hour he paced the second-floor halls, not speaking to anyone. Finally, Melanie Gomez sat him down, talked gently about what had happened, then firmly told him his behavior was unacceptable.

If he behaved like that, he couldn't work. If he behaved like that, he wouldn't go to China.

For weeks, Melanie and other teachers and counselors at the school tried to prepare Jamie psychologically for his trip.

Melanie, who was Jamie's boss in the adult vocational center, made up a calendar outlining precise details of the journey—where he would be each day, what time his flights would take off and land, how many hours he would need to set his watch ahead. She knew a schedule and an understanding of what was to come was the best going-away gift she could give him.

Though Rob wasn't chosen as a World Games coach, he was going as a spectator. He had his bags packed days before leaving. He wondered aloud what the experience would be like, and played out different scenarios in his head, all involving Jamie winning the gold.

"He deserves this," Rob said. "He's worked hard, and this is going to be his moment. I just know it."

On Sept. 25, Jamie said goodbye to Alice and Rob, joining the team at a hotel near O'Hare International Airport. The next morning, he boarded a commercial flight clad in a navy blue Team USA T-shirt and sweat pants. He and 10 other Illinois athletes were bound for Los Angeles, where they would meet up with athletes from across the country, then board a chartered flight to Shanghai.

The Special Olympics staff and coaches understood what a test this was for Jamie. They kept a close eye on him on the flight to California, answering his rapid-fire questions and doing their best to keep him distracted. On the second leg of the journey to China he was either in his seat, transfixed by an in-flight movie, or doing fast-paced laps around the cabin.

In a sure sign he was nervous, Jamie asked every person he saw: So everything's OK with you, then?

He asked some of the athletes the same question half a dozen times. They began complaining to Mitch, but he told them to let it go. That was just Jamie being Jamie. Besides, the movie player on the plane had broken, and all Jamie had left to do was walk around. There would be plenty more questions to come.

As the flight touched down at Pudong International Airport in Shanghai, Mitch exhaled, relieved. Jamie had made it this far, more than 14 hours in the air. Mitch figured that was half the battle.

An Adult with Autism The Story of Jamie Part 2

2008-05-27T23:09:00.000-07:00

But he won Alice over with one unquestionable quality: He loved Jamie.

The coach often had seen Jamie's life transform from calm to chaos in a matter of moments. That's why, at Soldier Field, Rob knew exactly what was coming.

"Get my mom," Jamie said, his voice quivering. "I'm upset. I'm getting very upset!"

Jamie's brain, like those of most people with autism, is slow to adjust to change. It takes time and repetition for him to understand that it's OK when something isn't the way he thinks it should be or the way it has always been.

"Jamie, it's just that microphone, it's making everything sound funny," Rob said. "You're doing fine. Just get up there and do it like you did in my office the other day."

"All right, Rob," Jamie said, looking anything but confident. "I'm gonna get up there and do it real good this time."

Back and forth, the conversation repeated itself—Rob trying to comfort and cajole, Jamie answering that he would "do it real good this time."

Rob didn't doubt him. He couldn't. Jamie needed him to believe.

Twenty minutes later, hundreds gathered in the stands. Jamie stood at the podium and launched into his speech. This time he didn't stop.

"I . . . am . . . a . . . powerlifter . . ."

He wasn't comfortable. He wasn't smooth. But Rob had told him what to expect.

As he finished, the crowd's wild applause thrilled him. He beamed, flashing two thumbs-up signs.

Jamie doesn't have the build of a typical powerlifter. It's a sport for the stocky—the shorter the arms and legs, the less distance to heave bar-bending weight. But Jamie has managed to get the most from his tall, muscular frame, grunting and roaring his way to dominance in local and state Special Olympics competitions.

With an encyclopedic knowledge of professional wrestlers—and a bedroom plastered with posters of muscle-bound pros like Stone Cold Steve Austin and The Game—the pursuit of bulging biceps seemed a natural fit. It's also a solitary sport, one with strict rules and little variance. On the padded bench, there was only Jamie, the weights and a clearly defined, rhythmic task: lift up, lift down, rack.

In his first competition in 2003, Jamie benched 100 pounds. Legs spread wide, hips bent, he hoisted 170 pounds up to a standing position in the dead lift. He won two gold medals.

Within three years he moved up to more than 200 pounds on the bench press and more than 300 pounds on the dead lift.

"He has to do well in everything," Rob said. "He's such a perfectionist. He doesn't accept second place. It's hard to get him to accept that sometimes there are people out there that are better than you."

Jamie kept only the gold medals. All silvers and bronzes went to his grandmother in Texas.

In June, he, Rob and a group of other Easter Seals athletes rode a bus down to Normal for the Illinois Special Olympics State Games. The event had no bearing on the World Games, but it was Jamie's last formal competition before heading overseas in October.

The powerlifters gathered on a creaky stage in an Illinois State University lecture hall. Jamie was in a boisterous mood, pacing about and grinning, laughing about a movie he had watched in the dorm the previous night.

" 'Rocky III' with Mr. T.," he shouted. "Hah-hah! I watched that last night. That Mr. T, he got 'em real good."

When his turn came, Jamie walked confidently to the bench and waited for the judges command to lift.

"Start!"

Jamie lowered the bar to his chest.

"Press!"

He forcefully exhaled and pushed the bar up.

"Rack!"

The three judges ruled Jamie's form perfect and signaled so by illuminating three white lights. Jamie got off the bench and looked at the lights. Panic washed over his face.

Normally, those lights would be green. Green is for good, red is for bad. That was what Jamie had always known.

"Rob," he said, "where are the green lights? What did I do wrong?"

"The white lights are good, Jamie," Rob said, walking him to the rear of the stage. "You want three of them. That's good."

"But where are the green lights, Rob? The green lights are good. What did I do wrong?"

Rob looked worried. For 10 minutes he tried to explain. Maybe they ran out of green lights, he said. It's OK. The white lights are good. You want the white lights.

But Jamie still looked panicked, confused.

On his next lift, he forgot to wait for the command to start. Three red lights.

He lifted a foot up during his third try, a form violation. Three red lights.

"This is the autism," Rob said, shaking his head. "He's flustered. He's out of sync."

As Jamie walked off the stage, he looked at his coach.

"Rob, it was kind of tough," he said, voice cracking.

"Are you upset?" Rob asked.

"Probably so," said Jamie. "I'm upset about it too."

That evening, Jamie was dancing with friends on the Illinois State football field, his smile wide, showing no signs of his earlier distress. But Rob was still concerned, faced with a stark reminder of his athlete's fragility.

"I don't know," the coach said. "I sure hope they have green lights in China."

"How you feel, dude?" Alice said, looking over at her son.

"All right," Jamie said flatly.

Alice would have given anything for more than that, for some assurance that Jamie knew what he was in for, but nothing came. He just stared blankly out the car window at thick traffic on Cicero Avenue.

It was a balmy July morning and Jamie soon would be on a plane to a World Games training camp, the first major step on his journey to China. But his mother couldn't stop thinking about the last time he flew.

That was in 1998, during a sightseeing flight over Niagara Falls with his classmates from the Easter Seals school. Halfway through the round trip he started to panic, and teachers had to talk him down, nursing him through the rest of the flight.

With that in mind, Alice rattled off a list of reminders for his training camp trip: Listen to your coaches. If anything hurts, tell someone. Enjoy yourself.

Jamie nodded and followed each piece of advice with a soft, "OK, Mama."

But he never shifted his gaze. He was detached, softly humming a high-pitched, ever-changing tune that slips out whenever he's anxious.

In the terminal at Midway Airport they joined a cluster of Special Olympics coaches and other Illinois athletes. Alice quickly found Brianna Beers, a coach who agreed to sit with Jamie on the flight. She pulled Beers aside. Jamie had never been away from both his mother and his Easter Seals family.

"I know this is what you do," Alice said, polite but stern. "But please take care of my baby. Please understand, this is my baby, my life."

For 24 years, Alice has been there to decipher the world for Jamie, and shield him from its rough edges. She lifted him up when people stared at him like he was from another planet. She protected him from the local toughs who tried to prey on him. She stopped store clerks who tried to shortchange him.

"I'm two people when I'm with Jamie," Alice said. "I'm feeling for him and I'm feeling for me. I have to be him in a way, to feel the parts that he's missing."

But this time she had to let go.

She yearned for an embrace and some tears. Jamie gave her a stiff hug, his arms barely touching her. She knew that was the most emotion he could muster.

He said, "I love you, Mama."

And he was off.

Alice walked slowly out of the terminal, sweating and furrowing her brow, wiping away tears all the way back to the car.

As the plane pulled away from the gate, Jamie gripped Brianna's hand. The window shades were all closed tight. His eyes were wide and he asked rapid-fire questions: So everything's OK, right, Brianna? We're taking off now, already? Everything's OK with you then, right?

As the plane leveled, his grip loosened. Ninety minutes later, he felt brave enough to peer out the window at the patchwork fields of Tennessee. He hit the ground happy.

On the first night of training camp, Jamie strutted into a ballroom on the Vanderbilt University campus with a grin that tried to break through the sides of his face.

"I'm havin' a good time in Nashville," he said, looking out at a parquet dance floor full of Special Olympics athletes bouncing to a disc jockey's beats. "I can't wait to tell everyone about this. This is really fun, to me."

He began to weave through the crowds, stopping to introduce himself and shake hands.

"Hi, my name is Jamie. What's your name?"

He sped happily from person to person, working the room like a salesman, posing for pictures, then hurrying on to the next stranger. For him, it had become a game.

In a room thick with people, Jamie remained very much alone.

Rob sat in his cramped office at Easter Seals and shook his head.

"I don't think Jamie grasps the gravity that he's competing against the world," he said. "We're going to start from scratch right now, make sure the technique is flawless."

Only two months remained before the World Games. Jamie's time at the Special Olympics training camp showed he could handle traveling, that he could manage in an unfamiliar environment. But his form was nowhere near good enough for the level of competition he would soon face.

He was a long way from winning a medal in China.

In Nashville he had met his Team USA coach for the Shanghai games, Mitch Guthrie. After the training camp, Mitch contacted Rob and told him Jamie needed more training.

Rob had brought Jamie this far, but with time waning, they needed help.

One Easter Seals teacher, an avid weight lifter, began taking Jamie to a nearby gym on Mondays. Another teacher's husband, once a competitive powerlifter, trained Jamie at their northwest Indiana home every Thursday.

Carefully building the new training regimen into Jamie's routine, they drilled him over and over again, making sure his form was exact and he followed commands without fault.

Jamie seemed fired up by the extra training. He began working out more on his weight bench at home, eyes fixed on the ceiling, neck veins bulging. He lowered his sweaty frame to the carpet, back down, legs bent, pumping out stomach crunches with the cadence of a drill sergeant. One, ah-huh, two, ah-huh, three, ah-huh . . .

At home and in public, he constantly sought out his reflection, flexing his biceps in any mirror or window he could find.

His confidence grew, but his autism stayed the same, and at times that made the coming journey seem precarious.

An Adult with Autism The Story of Jamie

2008-05-27T22:52:00.000-07:00

Autistic powerlifter's quest

For the coming wave of autistic adults, opportunities are scarce and resources are

As she turned off Roosevelt Road onto Damen Avenue, the West Side school where Jamie works grew smaller in the rearview mirror.

The logical route home would take about a half-hour, a straight shot south along bustling Ashland Avenue. But in his 24 years, Jamie rarely has followed logical routes. So the daily commute he chooses takes more than an hour, follows 18 different streets and twice crosses the Dan Ryan Expressway.

Alice followed Ashland for nearly 6 miles, then detoured west on 69th Street. The car dipped under a viaduct, the first of six along the route.

As they came out the other side of the bridgelike structure, Jamie quickly turned and looked back, staring for a moment, then looking forward again.

He turned back twice more before settling into his seat. He repeated the routine after each viaduct.

Alice had never understood why Jamie did this, or how he had come up with the circuitous route home. Autism is curious that way.

But four afternoons a week, she was a willing chauffeur. The ride relaxed Jamie, and that relaxed her.

On a June afternoon thick with humidity, Alice spoke over the whoosh of the air conditioner, asking Jamie about his day. His voice carried an innocence that clashed with his 6-foot-3, 180-pound frame.

"It was fine, Mama," he said.

"Fine" for Jamie is a day that unfolds like every other. As they drove west on 95th Street, he savored the sameness of the ride, ignoring thoughts of the changes that were coming, ones that would knock him from the well-worn grooves of his life.

In October, he was going to China. He would compete as a powerlifter at the Special Olympics World Games. His longtime coach, Rob DeSanto, had nominated him, writing essays about his accomplishments—the dozens of gold medals he had won, the two jobs he worked.

Friends repeatedly told him the trip to Shanghai would be the biggest moment of his life. He believed that.

But Jamie's quest would bombard his fragile senses and test his ability to navigate a world he couldn't predict. Fail or succeed, he would explore the potential of autistic adults at a time when the disorder looms large.

A decade from now, there will be an estimated 1.5 million adults with autism in the United States.

Jamie is a raindrop, a warning of the downpour soon to come.

At only 9 months, Jamie clumsily walked the hardwood floors of his family's South Side bungalow. He played with his 3-year-old brother, Cedric, cooing and cackling. He seemed, if anything, precocious.

By age 2, though, he had yet to speak a word, and Alice found him occasionally banging his head against the wall. She came to recognize his needs by the way he cried—a certain cry for hunger, another for sleepiness.

She figured speech would come, but the frustration in Jamie kept building.

"When he got upset, he'd just start banging his head," she said. "It was like he wanted to say something but he couldn't find the words, and he'd get mad at himself."

Jamie turned 3 and still couldn't speak. He acted out more, screaming angrily, and began to develop odd, compulsive behaviors. When the family sat in the living room, he would crawl along the floor and sniff each person's feet.

Doctors checked his hearing, tested for lead exposure, scrutinized blood samples.

"They couldn't find anything," Alice said.

Finally, at age 4, Jamie was referred to a psychiatrist who quickly reached a diagnosis.

"He told me my son has autism," Alice recalled. "And I'm like, 'What is autism?' I hadn't ever heard of that."

She asked: "Is he going to grow out of it? Is he going to get better?"

The doctor grimaced. He said Jamie's intellect would never exceed that of a 5-year-old.

"Something died inside me that day," Alice said. "I was only 28 years old. I had no idea what all this meant."

Autism still was a rare diagnosis in the 1980s, found in about one out of every 10,000 children. Few teachers or therapists knew how to handle the unique and unpredictable behavior that came with the disorder. Many autistic children are unable to express their needs or explain their often baffling frustrations because the disorder inhibits communication skills.

Jamie was a strong little boy, and when he lost control, flailing his arms, throwing clocks and lamps, Alice and her husband struggled to restrain him. It wasn't long before friends and relatives began suggesting he be institutionalized, a common fate at the time. "They'd say, 'You can't handle him.' Those four words. Sometimes I would be just about there," Alice said. "But there was always this innocence that was captivating. He'd come over, get up in my lap, and I knew in my heart and in my soul that that was the most comfortable place in the world for him. He just wanted to be right there. There was this sense of relaxation. He was at peace.

"That's why I couldn't do it. I couldn't take that away from him."

Alice joined one of the first waves of American parents who would slowly, often painfully, come to understand the complexities of autism.

Jamie's father focused on work and provided for Jamie financially. Alice's life became wholly consumed by her son.

She tried to mainstream him, sending him to the neighborhood preschool and kindergarten. But he wasn't learning anything, and the teachers couldn't handle his erratic behavior.

When he was 7, a new school opened on the West Side, one specifically for kids with autism. Alice swiftly enrolled Jamie, and for the first time her son was surrounded by people who could help unlock his mind.

Margaret Creedon founded the Easter Seals Therapeutic Day School, and when she met Jamie he was a skinny, kinetic boy, barely verbal, with a permanent scar from banging the back of his head against the bedroom wall. He had chewed his fingernails so far down they bled.

Still, she saw a capable person wrapped in an autistic cocoon. When happy, he had an ebullient personality, and he smiled ear-to-ear any time he accomplished the simplest of tasks.

"I always knew Jamie could climb the ladder," Creedon said. "You just had to show him how to get up each rung."

Jamie began speaking more and learning. Alice, now meeting other parents of autistic children, was learning too. Every child experiences autism differently, but she found solace in the common threads.

Most, like Jamie, struggled to make emotional connections. Hugs rarely seemed heartfelt. All the children had difficulty interpreting social cues and emotions, such as happiness, sarcasm or anger.

This put her son and his sometimes robotic behavior in perspective.

Not long after he arrived at Easter Seals, Jamie joined many of his fellow students competing in local Special Olympics events. Autism provided him boundless energy and a desire for rules and structure. Competition became a central part of his life, as did a need to win.

There were ups and downs, but Jamie continued to make progress, gaining responsibility and self-control. When he reached adulthood, Easter Seals counselors helped him get a job at a South Side produce store. After he graduated, they gave him a second job as an assistant in the school's adult vocational program.

Work is vital for many adults with autism, and scarce. Jamie didn't know it, but he was living a dream, working seven days a week and fulfilling the common autistic need to stay busy.

As he grew up, the incidence of autism diagnosis in America began to explode. Now, one out of every 150 newborns will have the disorder—for boys the figure is a staggering one out of 90. Researchers are struggling to understand the steep increase.

Alice saw progress made in early intervention, but that wasn't going to help her adult son. Life with Jamie remained difficult.

A minor change in routine, like arriving a few minutes late for work, could upend his world. In a tantrum last year, Jamie shattered the mirrored doors of a closet near his second-floor bedroom, partially tearing them from their hinges.

Still, Alice considered herself and Jamie lucky. Most adults with autism age out of the school system at a critical point in their lives, ready for further challenges and needing a new focus for their energy.

In the decades-long push to raise autism awareness, the focus has been primarily on children. Until recently, little thought was given to what will happen once these children grow up. Most end up stuck at home, spiraling deeper into isolation.

Eventually, their parents will die, leaving many to rely on relatives or the state.

With no clear plan, Alice wept at the thought of Jamie trying to live without her.

"We're not going to be here forever, but he's going to need someone to take care of him, always," she said. "It's my responsibility as a mother to make sure that happens."

She shook off fears of the distant future, focused on the present.

Jamie had his jobs and his competitions. He had a measure of independence.

And he would soon have a chance to travel halfway around the world.

Jamie weaved through the aisles of Pete's Produce, eyes scanning the shelves for anything that needed restocking—pasta, soup, spices. He grabbed a broom and swept the tile floor just past the registers, then began methodically mopping the aisles in the produce section.

For seven years, he had worked three days a week at the store on West 87th Street. His manager never tired of watching him, calling him "the greatest stock boy ever."

"He's amazing," Manuel Alvarez said as Jamie zipped past, a tall, apron-clad blur. "If I could have a whole crew of Jamies, I'd be in business."

It's here at work that autism allows Jamie to shine. He craves movement, familiar actions and a sense of purpose. Without them, he becomes anxious and agitated. So aside from a mandatory lunch break, he works briskly and ceaselessly.

Throughout one regular Friday shift, Jamie obsessively monitored the drink coolers in front of each register line, making sure they were fully stocked and in perfect order. He never stopped to examine them. Instead, he glanced in passing, instantly assessing whether any drinks were missing.

As he carried six heads of lettuce to the produce section, he once again eyed the drinks. Jamie dropped the lettuce heads gently in their bin and then returned to the coolers. He deftly replaced a single bottle of Tropicana peach-papaya juice before moving, thoroughly satisfied, to the next chore.

Jamie supplements his state disability checks with money he earns at his two jobs, but order and predictability are the true currencies of his life. Without them, his senses get overwhelmed and the world fragments into kaleidoscopic swirls of baffling information.

So he's at the produce store Friday through Sunday. Every Monday through Thursday, with metronomic rhythm, he works as a teacher's assistant at Easter Seals' vocational program, organizing projects for other autistic adults.

On Thursdays at 11:45 a.m. he hustles up the stairs and out the door to a nearby cafeteria. He grabs one slice of cheese pizza in a triangular box and a pack of chocolate Pop Tarts.

The register reads $3.90, just as it does every Thursday. That seems to make him happy.

At 12:30 p.m. sharp he's back at his work table. An hour and a half later he'll race to his mother's car in the parking lot, ready for the mazelike ride home.

On a hot morning in May, Jamie paced the firm, green turf of Soldier Field, preparing to speak at the opening ceremonies of the Chicago Special Olympics games. For days he had practiced scripted lines with his coach and family, over and over until he had them memorized.

Before the crowds arrived, he walked confidently to the podium to rehearse.

"Hi, my name is Jamie."

His voice boomed through the stadium's public-address system and ricocheted off the cavernous concrete stands. He froze—the echo had tripped him up.

He started again, tentatively, spoke one word—"Hi"—and stopped.

His eyes grew wide, frightened. His confident grin vanished. He turned in a huff from the podium and shouted: "I got messed up. That microphone is not good. It's not good!"

His coach, Rob DeSanto, rushed to his side to comfort him.

Rob, a jolly bear of a man, had coached him in Special Olympics events across Illinois for nearly a decade, watching him develop from a lanky kid who ran track to a sturdy, gold medal-winning powerlifter. In competitions, Rob's emotions rose and fell with Jamie's, and he routinely was in the ear of any judge who questioned his athlete's form.

The two met in the late 1990s at the Easter Seals school. Jamie was a student and Rob had just become a teacher, following a dream to work with kids with disabilities that dated back to his own childhood, when he struggled with epileptic seizures.

Rob immediately recognized Jamie's competitive drive. He became Jamie's coach and, sharing an almost childlike sense of humor, his friend.

Jamie's mom—protective as a bulldog—wasn't sure what to think about Rob at first. Here was a white man from the suburbs, almost a caricature of your typical Chicago guy: heavyset, quick with a wisecrack, passionate about his Chicago Bears, right down to the team watch wrapped tight around his wrist.

Mom says teacher let classmates vote autistic son out of class

2008-05-27T22:37:00.000-07:00

PORT ST. LUCIE - Melissa Barton said she is considering legal action after her son's kindergarten teacher led his classmates to vote him out of class.

After each classmate was allowed to say what they didn't like about Barton's 5-year-old son, Alex, his Morningside Elementary teacher Wendy Portillo said they were going to take a vote, Barton said.

By a 14 to 2 margin, the students voted Alex -- who is in the process of being diagnosed with autism -- out of the class.

Melissa Barton filed a complaint with Morningside's school resource officer, who investigated the matter, Port St. Lucie Department spokeswoman Michelle Steele said. But the state attorney's office concluded the matter did not meet the criteria for emotional child abuse, so no criminal charges will be filed, Steele said.

Port St. Lucie Police no longer are investigating, but police officials are documenting the complaint, she said.

Steele said the teacher confirmed the incident took place.

Portillo could not be reached for comment Friday.

Steele said the boy had been sent to the principal's office because of disciplinary issues. When he returned, Portillo made him go to the front of the room as a form of punishment, she said.

Barton said her son is in the process of being diagnosed with Asperger's syndrome, a type of high-functioning autism. Alex began the testing process in February at the suggestion of Morningside Principal Marcia Cully.

Children diagnosed with Asperger's often exhibit social isolation and eccentric behavior..

Alex has had disciplinary issues because of his disability, Barton said. After the family moved into the area and Alex and his sibling arrived at the school in January, Alex spent much of the time in the principal's office, she said.

He also had problems at his last school, but he did not have issues during his two years of preschool, Barton said.

School and district officials have met with Barton and her son to create an individual education plan to address his difficulties, she said. Portillo attended these meetings, Barton said.

Barton said after the vote, Portillo asked Alex how he felt.

"He said, 'I feel sad,' " Barton said.

Alex left the classroom and spent the rest of the day in the nurse's office, she said.

Barton said when she came to pick up her son at the school Wednesday, he was leaving the nurse's office.

"He was shaken up," she said.

Barton said the nurse told her to talk with Portillo, who told her what happened.

Alex hasn't been back to school since then, and Barton said he won't be returning. He starts screaming when she brings him with her to drop off his sibling at school.

Thursday night, his mother heard him saying "I'm not special" over and over.

Barton said Alex is reliving the incident.

The other students said he was "disgusting" and "annoying," Barton said.

"He was incredibly upset," Barton said. "The only friend he has ever made in his life was forced to do this."

St. Lucie School's spokeswoman Janice Karst said the district is investigating the incident, but could not make any further comment.

Vern Melvin, Department of Children and Families circuit administrator, confirmed the agency is investigating an allegation of abuse at Morningside but said he could not elaborate.

An autism mom

2008-05-27T22:30:00.000-07:00

Son’s special need creates a bond tested by challenge, forged in love

Lisa Simone knew her son was different, but she didn’t know why. Jonathan didn’t talk. Jonathan didn’t follow directions. He didn’t recognize names. And worse: Jonathan hurt other kids for no apparent reason. He hit them and kicked them and butted them with his head.

If she left Jonathan alone in his room, he would rip up books, tear the sheets off his bed and toss everything out of the dresser.

She tried techniques other parents try: time-out, consequences, even an occasional spanking. Nothing worked.

What was she doing wrong?

His behavior had turned so horrid by the time he was 18 months old, Lisa hated taking him anywhere.

And worse: She wondered why she ever became a mother.

Motherhood, Lisa discovered, sometimes bears little resemblance to the pictures on Hallmark cards. She had imagined happy days filled with birthday parties, play dates and family game nights, trips to the park and vacations to Walt Disney World and to “Sesame Street Live.”

She had quit her job as a paralegal to devote herself to her new baby. She enrolled him in gymnastics, playgroups, swimming lessons and music classes. She bought passes to Carowinds, Discovery Place and the Nature Museum.

But Jonathan was a fussy baby who grew into an uncontrollable little boy, and she worried that one day he might end up in jail.

“I was not doing anything different than what other mothers were doing,” she said, “but he responded differently from the way their children responded.”

Lisa blamed herself. What was wrong? When other mothers in their playgroup became pregnant again, Lisa’s despair grew. They were ready for more children, and Lisa still couldn’t control her first child.

She confided in her friend Arlene Crandall after a baby shower one night, talking with her in the street for over an hour, rehashing everything, trying to figure out what she was doing wrong.

Every day with Jonathan was a battle.

Every day Lisa asked herself why she became a mother.

Every day she wondered if she could make it through another.

Arlene sensed Lisa’s despair and, though friends warned her not to interfere, she told Lisa about a place in Charlotte, N. C., called the Carlton Watkins Center, where children with developmental delays are evaluated.

It would take five years before a final diagnosis, but that evaluation was the start of Lisa’s journey away from hopelessness.

“I’m always telling people now to get it checked out,” Lisa said. “The best thing they can tell you is that it’s nothing. If it is something, you can start working on it.”

For Jonathan, it’s autism.

In August 2006, after six years of therapy and hard work, 9-year-old Jonathan Simone stood behind a lectern, facing about 100 people at a luncheon for the Autism Speaks advocacy group, and he read a speech he wrote about himself:

“When I was 8 years old I discovered that I have autism. I was pretty afraid because autism makes people’s lives hard. Mom told me that my autism makes me smart and then I wasn’t afraid anymore.”

Jonathan listed some advantages he has because of his autism, which is a neurological disorder that affects social interaction. First is his great vocabulary. “I know words that other kids my age don’t understand. This can be a problem too, because one time in second grade one of my fellow students said, ‘Happy Morning.’ I didn’t like mornings because I got woken up so early, so I said, ‘The mother of all oxymorons.’

“Nobody understood me. Everyone thought I was calling everyone a moron. My teacher said I was in trouble because I called everyone a moron, but everyone was wrong. Later I explained what happened and then I wasn’t in trouble.”

Jonathan said he’s also a good thinker, and is good at math, computers and reading. He has a great memory, and is good at telling jokes.

“And now for my difficulties: Mom says when I was little, I couldn’t talk, and I used to hurt the kids I was around. (One difficulty can lead to another.) I used to ignore people who were talking to me. Then I started going to therapy.”

Lisa and her husband, Vinny, spent many tens of thousands of dollars on therapy. They enrolled Jonathan in a special-needs preschool, and Lisa worked with him at home, grueling hours filled with his tantrums and her tears. She searched the Internet and read books, and contacted different agencies.

Over time, Jonathan’s symptoms improved.

“Now I go to a regular school, but I still have challenges,” he said in his speech. “Sometimes I still have trouble following directions. When my schedule at school changes and nobody warns me, I get mad and I begin to shout and then I get in trouble. I prefer the usual schedule.”

Before Jonathan finished his speech, Lisa was weeping, this time tears of joy.

“Every time he accomplishes something that we had no idea he would be able to accomplish, I feel very fortunate,” she said. “He is so insightful and observant, he surprises me a lot.”

Her friend Arlene describes Lisa as “the most remarkable person. She just keeps on trucking no matter how bad it gets.”

Or how much it costs, said Vinny. “If we have to give up vacation to pay for therapy, so be it. If she wasn’t like that, Jonathan wouldn’t be where he is today.”

Today, Jonathan is in fourth grade at Davidson Day School. He is doing so well that Lisa, who is 39, has time again for herself.

After all her struggles with Jonathan, you might think she would take a break. Instead, she took a job last year as a teacher’s assistant in a special- needs classroom at a public school, and is using the knowledge she gained from raising her son to help other children.

“I was so lucky to have wonderful teachers in his life that I enjoy being a part of these kids’ lives,” she said. “Sometimes people see their deficiencies, but they have gifts that will just blow you away.”

Like Jonathan’s creativity. His humor. His hugs and kisses. “I wouldn’t change him,” Lisa said. “I would

make things easier for him and some things easier for us, but that’s all.”

Some days being Jonathan’s mother can still be tough.

But the tough days no longer come at Lisa one after the other. She’s able to put her challenges into perspective. Jonathan is an easy child compared to the child he once was. Lisa’s biggest challenge is forcing him into social situations.

“We are in a good, good place, which is not to say that I never feel despair,” she said. “But I can’t say it’s different from what any other parent feels. I’m sure all parents have concerns.”

For some mothers, it may be drugs. For others, attention deficit disorder.

For Lisa, it happens to be autism. “I am such a better mother because of it,” she

said. “Oh my God, I’m such a better person. People will tell me that I have so much patience and my husband, who knew me pre-Jonathan, looks at me and laughs and says, ‘You?’

“Even though we don’t do the stuff I wanted to do together — like board games and hockey games or going to the movies — he’s my constant companion. If he has to hang out with anybody, it would be me. He’s like my little best friend.”

Asked to talk about his mother, Jonathan, who is now 10, said in his formal, almost professorial way of speaking:

“She’s a good mom. “She’s after my health. “She gets my flu shots. “She makes sure I eat healthy and she brings

me to school every morning. “She works hard, but she doesn’t help me on

my homework.”

Then he admitted: “Sometimes your child can

be hard to handle. One time when I was 3, I was angry and I peed on her on purpose.”

He switched topics abruptly, the way he sometimes does, and talked about his dogs, Tobi and Oreo, before announcing: “It’s a strange world we live in. They can put a man on the moon, but they can’t put a decent taste in medicine.”

Jonathan stood up. He had nothing more he wanted to say. He was finished talking, ready to do something else. He wrapped his arms around Lisa, and she kissed him on the forehead.

JMac delivers hope for overcoming autism

2008-05-27T22:25:00.000-07:00

Basketball feat provides basis for helping others to cope with condition

Four hundred people went to the Buffalo Niagara Convention Center on Thursday to hear Jason McElwain, the Rochester-area man who has become a symbol for what some people with autism can accomplish.

Some of them, like Sandra Czajka, 54, came with their own dreams.

Czajka, who works at an agency dealing with disabled adults, looked at McElwain and saw what she wants her grandson Blake to be.

“If I ever see my grandson standing here looking like this, talking like this, one day I’ll be like, ‘My prayers were answered,’ ” Czajka said.

Blake, 7, has autism and is partly blind.

“We talk to my grandson, and we don’t know if he understands you or not because he ignores you,” she said. “But then if I specifically say, ‘What color is [the podium]?’ he’ll say, ‘brown.’ ”

As manager of the Greece Athena High School basketball team, McElwain, known as JMac, became something of a national sensation when he scored 20 points in four minutes — including six three-point shots — at the end of the last home game in 2006. He has been speaking publicly about it ever since.

“[Autism] made me want to be like the other boys,“ the 19-year-old told the audience at the Developmental Disabilities Day program in the convention center. “When I played sports, I was.”

McElwain’s feat got him onto “Oprah,” “The Today” show and others. He also had a book published, “The Game of My Life: A True Story of Challenge.” Columbia Pictures is working on a movie inspired by his life, which will be made within two years and will be produced by former basketball player Magic Johnson, according to David McElwain, Jason’s father.

Jason McElwain said he hopes more people are gaining a greater awareness of autism and people with disabilities.

Sue Mervine, director of family support services for the Learning Disability Association of Western New York, said she was thrilled to hear that Mc- Elwain would be speaking at the conference, which she attends each year.

“As a mom, I get tears in my eyes,” Mervine said, referring to how articulate McElwain is. “If I could put him on a higher pedestal, I would.”

McElwain now coaches the East Coach Fusion, an Amateur Athletic Union basketball team based in Rochester for players 13 to 17 years old. He recently took the test to receive his general equivalency diploma. He says the possibility of college is “up in the air.”

He also currently works at a Wegmans bakery in Rochester.

Thinking of her grandson who has autism, Czajka said, “You come from a child who has so many problems and you look at this young man, and he’s such an inspiration.”

McElwain signed his book for her grandson and wrote him a message he learned from Magic Johnson: “Never give up.”

Our son's hidden world: Living with a child with autism

2008-05-27T19:36:00.000-07:00

There are more than half a million people in the UK with autism. No one knows what causes it and there is no universally effective treatment.

But what is certain is that living with an autistic child is a daunting challenge. In a new book, CHRISTOPHER STEVENS writes poignantly about life with his autistic son. It's a moving account of the boy's struggle to cope with a world that confuses him - and the extraordinary leap forward that gave them all hope...

The first time we dared face the idea there might be something wrong with David, he was 16 months old.

The community nurse gave him the once-over, weighing him, prodding him and listening to his lungs. She asked how many words he'd mastered, and we said: "One - 'a-duh'. It means 'dog'."

His older brother James had about a hundred words at this age, but then, David was earlier to walk. They all have different talents, don't they?

The nurse made a note, showed David some flashing lights and spinning toys, then stood behind him and called his name. He didn't react.

She called again, more sharply. David ignored her. The nurse shook her head.

"He ought to turn around. It should be instinct. And his speech is slow to develop - have you noticed any hearing problems?"

Had we noticed? The whole street was painfully aware that David suffered from ear infections.

The screams that signalled pain were even more piercing and relentless than his usual howls of protest.

He had screamed since he was a baby. Whimpering and bleating gradually built into head-splitting wailing which went on and on until it burned itself out and David fell asleep.

One day we bumped into two of our neighbours, telling them we had just returned from the ear clinic.

The husband, a man in his 60s, said: "We've always said that baby had something wrong with him."

Other people were less rude, but they gawked when David shrieked in shops or parks. The idea of admitting that people like that man might be right was unthinkable.

But after the nurse's visit, my wife Nicky started to search for information on speech and language delays. There were many possible causes - and the most devastating was autism.

She found the standard medical textbook on mental health, Diagnostic and Statistical Manual Of Mental Disorders (DSM-IV).

It catalogued the criteria for autism: David would have to match at least six of them from a list of 12. We worked our way down the page; David matched point after point.

He never held our gaze and rarely made eye contact, his face revealed his feelings only when he was screaming and he didn't use gestures like waving or pointing.

He ignored dogs, cats and his brother ("failure to develop peer relationships").

If he had ever brought a toy to show us, we couldn't think when ("lack of spontaneous seeking to share enjoyment").

He was oblivious to our attempts to play games like peek-a-boo or chase, and didn't copy other children ("lack of social reciprocity and appropriate play").

He couldn't talk, and showed no sign of understanding anything we said ("lack of language development").

He watched the same videos repeatedly, spent hours stepping back and forth across bumps in the path, and was fixated on slamming doors ("abnormally intense and focused preoccupations").

He shrieked if we turned left instead of right when we stepped outside the door ("inflexible adherence to specific routines").

He fluttered his hands in front of him when agitated ("repetitive motor movements").

I made a last attempt to laugh it off by underlining fragments of the criteria which could apply to me.

"I've got dodgy social skills," I said. "I like to be solitary. I've got a million rituals. He's not autistic, he'll just grow up to be a journalist."

"Stop making a joke of it," Nicky told me. "We need to see a doctor."

We were referred to a consultant paediatrician at Bristol's Royal Hospital for Children, but our appointment was an agonising nine months away.

Everything that Nicky had read about autism emphasised that "early intervention" was essential, so we booked a private consultation.

After examining our son, the BUPA paediatrician told us to go back to our GP and insist on seeing a specialist as soon as we could.

We took David to the children's clinic to be assessed, but felt like frauds. He was grinning and bouncing. There were two other children in the waiting room, both in wheelchairs.

One little girl was bald, with dark rings around her eyes. She looked exhausted.

The other might have been a boy or a girl - thick curls, round face, a clear bag on a stick which fed a liquid through a tube under the child's jumper.

I smiled at the mother. "Who's this?" I asked. She just stared at me. "Kayley," she said at last.

"Hello, Kayley. You've got lovely hair." The child's head lolled from side to side. "She's deaf," the mother said, "and blind. She can't move on her own. She has to be fed through a tube in her belly."

She said each fact like an accusation. Whatever was wrong with our child, it was insignificant compared to her daughter's ailments. I wanted to take my child away. He didn't belong here.

Finally, after several weeks, the initial diagnosis came through at yet another appointment.

"Your son is probably not autistic, or only mildly so," Dr Smith said. "He has a communication disorder, but my opinion is that he's outside the autistic spectrum."

This was the headline news as far as I was concerned - "Nightmare over: screaming boy of Bristol is not a fruitloop, say medics".

Nicky was less trusting. She wanted to see the written report. That came two weeks later by post.

It described David's "significant difficulties" with communication, his "unusual" behaviour and his way of treating others "more as objects than people".

"All these aspects clearly put David within the autistic spectrum," the report concluded.

We read it over and over. Dr Smith at least had the grace to visit us and apologise. He admitted he had based his conclusions on his brief inspection of David six months earlier, in our kitchen.

He hadn't looked at the stack of reports from the assessment. Now he revised his diagnosis: David was moderately to severely autistic.

By the time the specialists called us to a meeting, the final stage of the report, David's diagnosis had been revised upward again. He was now "profoundly autistic".

In the following months, Nicky and were desperate to treat David' problems. We were ready to consider any treatment.

There were two main contenders: behaviour and diet. We heard about applied behavioural analysis (also known as the Lovaas technique).

This method involved a parent or teacher spending 30 to 40 hours each week with the children, mirroring every gesture and sound.

I went to a lecture on it, but the more the lecturer talked dismissively about our son, the more I thought: "I love my son, it's you I can't stand."

We didn't want to make David invisible, as this lecturer was advising. The therapy sounded like an expensive way of making sure he was never happy again.

So we tried every day to broaden his diet: chocolate, pineapple, buttered bread, Sugar Puffs. But all he drank, from a baby bottle, was full-fat milk diluted with boiling water, and dry Weetabix. If we had banned these foods, he would simply have starved.

The one story that sums up how David's mind works is when we went to the beach at Aberdovey in Wales. The waves were no more than ripples, and the shallow water was warm - perfect for toddlers to paddle in.

It was a few weeks after David's third birthday. If we could only get David's toes into the water, we'd have achieved something normal as a family: we'd have gone paddling at the seaside together.

David let Nicky carry him on her hip, while she splashed with James at the water's edge.

Faced with a little brother who won't let go of Mummy in the sea, a healthy five-year-old can't restrain himself for ever. James managed 90 seconds.

Two-handed, he sloshed a pint of seawater straight at David's face.

We braced ourselves for a shriek that would freeze the whole beach like a panoramic photo. But David didn't scream. He blinked, then chuckled.

Nicky seized her chance and dipped David's legs in the water. He chuckled some more.

At last, she let him down and held his hand as he stood waist-deep in the water. We cheered as Nicky let go of his fingers. David sat down. He disappeared. Even as his face vanished below the surface, he looked serene.

He must have been certain, until he was submerged, that the water level would go down as he sat - the truth didn't hit him for a couple of seconds.

He then lurched to his feet and strode out of the water in outrage. He wasn't frightened of the sea, he was simply disgusted at its behaviour.

If the water didn't have the sense to remain waist-high, David was having nothing to do with it.

Years later, I was watching James play a video game and realised that, although the cartoon hero seemed to be leaping, ducking and running, he really remained dead-centre of the screen all the time.

We expected to see the man move, not the world, because that's how life is. But that's not how things happen in cartoons.

And it's not how things happen in David's life, either. He is always dead-centre of the screen. The world flows around him.

Nicky and I laughed until we hurt that afternoon, but David never saw the funny side. He refused to be carried on to Aberdovey beach again.

Yet David was full of surprises. One day, when he was five-and-a-half, he started talking. It was as simple, and as unexpected, as that.

We had always insisted he didn't have learning difficulties, only understanding difficulties. He could learn to do anything he wanted, such as unbuckle a harness or operate a video player.

He wouldn't learn to do anything we wanted because he didn't see why he should. David didn't understand - and without words, we couldn't make him.

When he started talking, we realised the problem was more complex. But it hardly mattered, because we were so overjoyed to hear his voice.

He paraded his vocabulary for the first time just after Christmas, in the sitting room.

I'd slipped away to the kitchen and when I came back with mugs of tea, Nicky was wiping tears from her eyes. She shushed me before I could speak.

"Watch this," she said: "David, what is it?" Nicky held up a toy Kawasaki. David glanced at it and said: "Motorbike."

I gasped. "And he isn't copying me," Nicky added. "That's what is incredible. He knows the word. Look - David, what is it?"

"Racing car." "Good boy! And there, in the toy bucket - what's that?"

"Ambulance." He was saying the words perfectly, without prompting, and though his eyes only flickered at the toys, he was clearly loving the game and waiting for each challenge.

Nicky worked through every bucket of toys that morning and David knew almost every name. He came out with words that would have taxed any five-year-old - "narrowboat", "rhinoceros", "steamroller".

How long had he known "rhinoceros"? And how was he able to say it so beautifully, without any practice? For months, or years, he must have been secretly listening to words and taking them in. Now he could say them, but couldn't tell us why.

As David has grown, we have hung on to one hope. His autism ebbs and flows, and whatever improvements he makes soon fade away - but the improvements always come back more strongly. "If he did it once," we say, "eventually, he'll do it some more."

There's one sign of this which renews our hope every year: each Christmas, he remembers how to join in the fun.

David unpacks the decorations and races round the coffee table on a scooter, while Nicky and James hang baubles on the tree.

He sings along to carols, and curls up in a ball with his fingers in his ears when we pull crackers, and wears bangles and braces made of tinsel.

There'll be hugs as well. David has become very fond of hugs. He doesn't often put his arms round anyone, but he loves to be grabbed and squeezed.

He likes to make other people hug, too - he'll grab my wrist, drag me to Nicky, clamp his hands against the smalls of our backs and compress us.

For one day of the year, he will sit on Nicky's lap and watch James and me playing with presents, and listen to all of us talking and laughing.

He falls about laughing himself, sometimes because we are tickling him and sometimes because life is worth a good giggle.

For one day of the year, all his routines are suspended. David lets us control the show. He is happy to join in, one of the family.

Hopefully, a time will come when he understands that he can live like that all year round. Until then, corny as it sounds, we really do wish it could be Christmas every day.

Searching for an answer

2008-05-25T04:27:00.000-07:00

Autism center provides research, support for families living with autism

Prompted by his mom, 6-year-old Jonathan Milligan shares his favorite color, “yellow,” and his favorite fruit, “banana.”

Next to Jonathan is his identical twin brother, Canyon Milligan. More reluctant to talk, Canyon quietly whispers, “red.”

The Milligan brothers enjoy taking family walks, going to kindergarten and watching “Thomas and Friends” after school. On the surface, the Milligan boys seem like every other kindergartner. Jonathan and Canyon, however, have autism, a condition that affects their social interactions and ability to communicate with others.

After the twins’ diagnosis at the age of 3, the Milligans moved from Fulton to Columbia to take advantage of the city’s greater variety of services for children with autism, including MU’s Thompson Center for Autism and Neurodevelopmental Disorders.

Founded in 2005, the center offers services for the diagnosis and treatment of autism.

Until recently, the center’s services were scattered across various offices and clinics on campus. In February, the center consolidated most of its services at a single facility on Portland Street near Columbia Regional Hospital.

The facility, which will have its grand opening and ribbon-cutting on April 27, is sensitive to the needs of children with autism, with toys, clean lines and few decorations.

The center will also offer tours of its new facility when it hosts the Autism Intervention Conference for professionals and family members from March 30 to April 1.

One-stop shopping for autism-related services is a big help to families like the Milligans. Autistic children typically need to visit a variety

of specialists on a regular basis, including physical therapists, speech pathologists and neurologists.

Recent studies indicate that as many as one in 150 children develop an autism spectrum disorder, which can range from a relatively mild condition called Asperger’s syndrome to severe cases in which the individual has sharply limited ability to communicate and interact with people.

According to Janet Farmer, director of the Thompson Center, the rates of autism have been steadily increasing for the past decade, but experts aren’t sure why.

“We’re certain that genetics plays a role in autism, but the thing that we’re not certain is which genes,” Farmer said. “Like many conditions or diseases, there is probably not just one cause, but some interaction between genes and environment in order to produce the outcome of autism.”

Researchers at the Thompson Center hope their findings will lead to improved diagnosis and interventions for autism, but to families like the Milligans, the center provides services that supply immediate support. Doctors usually recognize autism when a child is 3 or 4. At this point, the goal for most families and doctors is to help children function in everyday life.

“Dressing Jonathan used to be a chore,” Jenny Milligan said. “Through therapy, we discovered that he hates long sleeves because he doesn’t like to push them up. Understanding little things like this makes life so much easier from day to day.”

For many families, one of the main goals is to prepare their children to enter kindergarten at a developmental level similar to other students in the classroom.

One way to get children ready is through classroom simulations. Children with autism participate in a “mock” classroom, where specialists can identify the best way to support their learning and development.

Children can also interact with other children and practice the structure of a typical day at the Robert G. Combs Language Preschool at MU, a morning preschool program for kids ages 3 to 5 with communication and language difficulties.

“It really helped the boys, in a therapy setting, before becoming socially active, before they hit kindergarten where they have to go through that,” Jenny Milligan said.

Now, they just spend one hour a school day with specialists, and the rest of the time in their regular classroom.

The center also hopes to create an environment where individuals affected by autism can meet other children and families going through the same challenges.

“My hope for the Thompson Center is that it becomes a resource for families,” Jenny Milligan said. “And I think it will be the Center that the parents can go to and meet with others for support.”

Eventually, the center plans to provide counseling for families and siblings of children with autism as well as other education and support group opportunities.

Research, interventions and support groups typically focus on young children.

Currently, there is little programming available for adolescents and teens with autism. Farmer said the center hopes to change that by working with advocates in the community to identify funding sources and “launch some new initiatives for young people with autism so they can be more a part of the community.”

Jenny Milligan’s hopes for the boys are simple.

“I hope that Jonathan and Canyon can find their niche in society and be able to function on their own,” Milligan said. “I want them to be happy with who they are.”

Jenny McCarthy: The day I heard my son had autism

2008-05-22T05:21:00.000-07:00

Editor's note: Jenny McCarthy is an actress and author of the new book "Louder Than Words: A Mother's Journey in Healing Autism" (Dutton).

I didn't know what was going on with my son Evan. One day he was a completely healthy 2-year-old and the next he kept having life-threatening seizures.

Countless doctors and hospitals couldn't get to the bottom of it, and no one could figure out the right diagnosis. We continued trying different anti-seizure medicines, but they either made Evan act psychotic or like a zombie. Finally, I got an appointment to see the best pediatric neurologist in Los Angeles.

I was beyond nervous in the doctor's office. My heart was beating so loudly that I bet Evan thought it was a drum in the next room.

When the door opened and a sweet older man walked in, I immediately felt good. I started telling him about all the seizure activity and what had been said so far about Evan. He listened closely but had his eyes on Evan the whole time. I could tell he was evaluating Evan and his bizarre behavior.

He asked me a couple of questions and seemed very peaceful about the whole thing. I was starting to feel more relaxed as he played with Evan, and then he stood up and opened his office door and told his secretary to cancel his next appointment. I thought to myself, "Wow, he must really like us. This is some big VIP treatment."

He closed the door and pulled his chair up close to mine and put his hand on my hand. He looked at me with sorrowful eyes and said, "I'm sorry, your son has autism."

I just stared at the doctor while remembering all the signs that led up to this moment. I felt each membrane and vein in my heart shattering into a million pieces. Nothing prepared me for this. I couldn't breathe. I wanted it gone. I had been through so much with seizures and psychotic reactions to meds. I looked at the doctor with pleading, tearful eyes, "This can't be. He is very loving and sweet and not anything like 'Rain Man.' "

"Every child is different," he said. "Some aren't as severe as others."

"I don't understand. How can this be? How can you tell just in a few minutes?"

He looked at me and then pointed to what Evan had made in the corner. Evan had taken those ear cones they use to look inside your ears and made the most perfect row lined up across the room.

"Does he line toys up at home instead of playing with them?" he asked.

"Yes, but don't all kids do that?"

"Nope, not all," he said. "And they all don't flap their arms like that either."

I looked at Evan and saw that he was "flapping his wings." I said, "Oh no, he just does that when he gets excited."

"That is called a stim," he said.

"A what?"

"A stim. Self-stimulatory behaviors. It's an autistic trait," he said.

I looked at Evan and saw him flapping and once again had my heart shattered. I had always looked at it like an adorable Evan characteristic, so cute and unique that I even called him my little bird.

I almost felt betrayed, like I didn't know this child standing in front of me. Everything I thought was cute was a sign of autism and I felt tricked. I guess the doctor sensed this from me because he turned my head back toward him and said, "He is still the same boy you came in here with."

No, in my eyes he wasn't. This was not Evan. Evan was locked inside this label, and I didn't know if I would ever get to know who Evan really was. All the behaviors I had thought were personality traits were autism characteristics, and that's all I had. Where was my son, and how the hell do I get him back?

I turned into a detective, and thanks to a ton of Google research, the support of UCLA and my DAN! (Defeat Autism Now) doctor, I found the treatments that worked for Evan.

Evan is now 5 years old and able to communicate completely. Since we can talk, I ask him questions that I so badly wanted to know the answers to during the crisis. When I asked him why he flaps his arms, he replied, "Because I get so excited and then I fly just like the angels do."

Not all children with autism will be able to make leaps like Evan. Some parents have worked longer and harder than I have, with no success, trying the exact same things.

I have no idea why some treatments work on some kids and not on others. But I beg moms and dads to at least try. I will work my ass off raising awareness for autism and banging down doors to get answers.

In the meantime, don't give up hope and remember that acceptance of your child's condition does not mean giving up; it's just simply loving your child for being the perfect little spirit he or she is.

That was the shift I had experienced before Evan's healing even began. Faith is what continues to keep me moving forward.

Autistic children linked to same sperm donor

2008-05-22T02:25:00.000-07:00

NEW YORK (CNN) -- He's only 5½ years old, and yet he's practically memorized the entire New York subway grid.

He reads at the fourth-grade level, plays two-handed piano compositions and is better versed than most adults about the Fibonacci code, a complex mathematics sequence.

Dylan loves Italian music and draws pictures that artist Jackson Pollock would be proud of.

He also happens to be autistic.

Gwenyth Jackaway, Dylan's mother, is a professor at New York's Fordham University. She's single but had always wanted to have a child. So she contacted California Cryobank, one of the largest sperm donor banks in the country.

Cryobank doesn't reveal the identities of donors but allows people to choose based on the traits they'd like their child to have. Jackaway decided on "Donor X" because he appeared philosophical and intelligent on paper. He liked music, loved to travel and had a high IQ and a degree in economics.

What she couldn't know then is that her son would have autism. So she started to wonder whether Donor X might carry a gene that could have contributed. Video Dylan tells Randi Kaye how to take subway back to work »

The cause or causes of autism are not known and are hotly debated. Most experts believe that genetics are a component, making a child predisposed to autism or responsive to an environmental trigger.

"It's a combination of being genetically vulnerable and then having some kind of social or toxicant exposure that tips you over," according to Dr. Gary Goldstein of the Kennedy Krieger Institute.

Researchers have found some genetic areas associated with autism, but it could take years before the gene or genes that cause autism or contribute to it will be determined.

Until then, Geri Dawson, chief science officer for the Manhattan-based advocacy group Autism Speaks, says there's no way to screen for those genes and prevent them from being passed to a child.

"We wouldn't be able to screen a donor for autism because we don't yet know the specific genes that are contributing to autism," Dawson said. "But there is a lot of research going on, and I would say in the next five to 10 years, we will have identified between five and 10 genes that we know raise the risk for autism."

Once the autism gene or genes have been identified, it would theoretically be possible to screen for those genes, according to Dawson.

Jackaway says she went into a period of mourning when Dylan's autism was diagnosed at age 2.

"When you're handed a diagnosis of some sort of developmental disorder, you have to let go of the child you thought you were going to have," Jackaway said. "There's a sense of loss of the child, a grieving process. There's denial, there's rage, and then there's the tremendous sadness, and hopefully you get to a place of accepting."

Jackaway says she had to accept that "I don't have that child I thought I was going to have. But I have this child instead, who's right here in front of me."

Through a Web site called Donor Sibling Registry, she reached out to other women who used Donor X. She found six families who had used the same donor.

Two years ago, she visited Theresa Pergola in the New York area; she had given birth to triplets using sperm from Donor X. Just minutes into their meeting, Jackaway noticed Pergola's son, Joseph, 2, exhibiting some of the same behavior as her son.

"He was walking on his toes; he was flapping his hands. There seemed to be eye contact issues," recalled Jackaway, who immediately suggested screening Joseph for autism.

"She told me that she saw characteristics of autism, and it was very upsetting to me at that time," Pergola said. "I didn't know what to expect from that point on. I know I was scared, and she was there to let me know that it was going to be OK."

Pergola says she was afraid because she had an image of autism in her head and believed her son would be "in the corner and rocking and not talking."

She says Jackaway reassured her that wouldn't be the case.

One month later, a test confirmed what Pergola already knew: Joseph was autistic. The diagnosis brought her to tears, and now these two women whose sons share a father were immediately connected by another bond: autism.

"She was terribly upset," Jackaway remembered. "That moment is a terribly frightening moment. You get handed a diagnosis, and you get handed an entirely new future."

In six families Jackaway contacted that had used Donor X, three of the children are autistic, and one is showing signs of autism.

But would Jackaway be happier today if there had been a way to screen Donor X for an autism gene?

"I've done a lot of thinking about this, and to say yes to that is to say that I wish Dylan isn't Dylan," Jackaway said. "I love my son and everything about him, and that means loving his autism also. Loving your children means loving everything about them. Our children don't have autism; they are autistic. It's part of who they are."

There is currently no way to screen for autism, and in a statement, the company said in part:

"There is no current genetic test to detect autism. California Cryobank (CCB) employs one of the most thorough and rigorous donor screening processes in the industry, with less than 1% of all applicants actually becoming donors. The standard CCB procedure for screening donors involves extensive physical, genetic and health screening ..."

Since the discovery of autism in some of the families that used Donor X, Cryobank had this to say about his samples:

"... per CCB policy, the donor's samples were removed from the general catalog. These vials may only be sold to a client who has previously used specimens of this donor and is interested in ordering additional specimens. In this case the client is made aware of the new medical information and potential issues ..."

The families don't blame the sperm bank. In fact, Theresa Pergola says she's still uncertain about an autism screening process, if and when it ever becomes available.

"It can go either way, on the one hand it could be helpful so that people could make choices about what risks they want to take," says Pergola. "On the other hand it's like, what else are they going to screen for, you know? Are they going to screen for certain personality traits? It's hard to say. It's really hard to say."

Cracking autism's shell

2008-05-09T23:23:00.000-07:00

Therapy clinic in demand
By Janelle Frost - jfrost@thesunnews.com

As Jay Cole yelled "ready, set, go," while holding a bright yellow ball in his hand, the children took off running to their bases, trying not to get hit by the ball.

"Run, Paige, run!" Cole said as 2-year-old Paige Pendleton ran to first base with a big grin on her face.

Paige and four other children were playing kickball with their therapists at Surfside Presbyterian Church.

The children, each with an autism spectrum disorder, attend a therapy program designed to help each child reach his or her optimum development through applied behavior analysis therapy.

The children participate with their therapists in a session five days a week at a temporary location at the Surfside Beach church.

Clinic officials are looking for a permanent location, preferably in Myrtle Beach.

Increased interest in the clinic, which began as a summer pilot program, has helped it grow into a year-round program targeted at children 6 and younger.

Officials at Surfside Presbyterian Church have donated the space for the clinic, which is the only one of its type in the Grand Strand, said Cole, the clinic's director.

He said the next nearest is in Spartanburg.

The area's clinic is a partner with SOS Health Care Inc. and is funded through private grants, the United Way of Horry County, civic clubs, churches and individuals, SOS officials said.

Half of the children attend a morning session and the other half attend in the afternoon. The therapy is individualized for each child.

Paige has been in the therapy since her second birthday, according to her grandmother, Pat Bernhard.

It was "a year or more earlier than when people get therapy because they don't want to diagnose them that early," Bernhard said. "I can't believe how far she's come in four months."

Bernhard said Paige went from not speaking and responding when her name was called to saying 15 to 20 words and doing sign language.

According to the National Institutes of Health, most children know about 50 words at 24 months of age.

"The goal is to teach kids to the extent where they can go into kindergarten like any other child," Cole said. "Two to 6 years old are the primary ages to benefit from ABA therapy."

Applied behavior analysis therapy is a nonmedical treatment commonly used to help autistic children.

Through therapy, skills are broken down into smaller pieces to teach autistic children everything from language skills to how to play appropriately with toys to being potty-trained.

The behavior is reinforced, and the child is rewarded for the progress.

Cole said the clinic specifically deals with autism because research shows the effectiveness of ABA therapy with autistic children.

Twenty-five people applied for their child to attend the 10-week-long ABA therapy clinic this past summer, but there was space for only 14 children to participate.

A lottery system was used to select the children.

The goal was to have the clinic every summer, but there was an overwhelming response from parents to do it year-round, said Cole, who was a consultant with Horry County Schools' ABA program.

Now there are 11 children in the program, he said - including 5-year-old Drew Putnam.

Alissa Smith said her son Drew, who was diagnosed in 2005 with autism, started out talking and just stopped one day.

Since being in the program, he has gone from saying baby words like popcorn to saying complete sentences such as "Mommy, I want some popcorn," Smith said.

"I strongly believe after all these years of trying everything, ABA helps my son," she said.

Autistic teen inspires undergrad to produce award-winning film

2008-05-09T23:18:00.000-07:00

Jaclyn Spirer is passionate about the people and projects in her life.

Ms. Spirer, the 2004 valedictorian at Gateway High School, brought that passion to a film documentary about Matthew Wallace, a 15-year-old Pitcairn boy with profound autism, and his family.

That documentary -- "Finding Matty's Voice" -- recently won the Best Documentary and Grand Jury prizes at the Ivy Film Festival at Brown University in Providence, R.I.

Ms. Spirer, 22, of Monroeville got to know Matthew when she was a high school junior, baby- sitting for the then 10-year-old. Matthew's father, Mark, was Ms. Spirer's advanced placement history teacher at Gateway.

"I was so moved by Matty," she said. "He completely changed my life."

The child's effect on her was so profound, Ms. Spirer entered Allegheny College with plans to eventually become a special education teacher.

Allegheny, a liberal arts college, doesn't offer a major in special education. Ms. Spirer chose a different major, communication arts, and soon discovered a calling to documentary filmmaking that led her back full circle to Matthew and his special needs.

"Finding Matty's Voice" was Ms. Spirer's senior project.

The Ivy Film Festival features the work of graduate and undergraduate film students and the involvement of top film industry professionals.

Director Martin Scorsese and Tom Rothman, chairman and CEO of Fox Filmed Entertainment, participated in this year's festival. The competition attracted 250 entries, many from prestigious film schools such as New York University and UCLA.

It is highly unlikely that a first-time filmmaker from a small college would win Best Documentary and the Grand Jury prizes. But Ms. Spirer, who works for Sesame Workshop in New York City, did just that.

The 25-minute film is a sensitive depiction of Matthew's inner world and his family's journey through autism.

"I didn't want to do this as an information piece about autism, but to bring people into Matty's world," Ms. Spirer said.

To accomplish this, she used a slow shutter speed to track Matthew playing with his hands in soapy water, a favorite activity that engages him for long periods. The film opens with this footage.

The film also incorporates family video footage from Matthew's early years and interviews with family members, who speak openly.

Matthew was diagnosed with autism at 18 months, after his parents noticed that he was regressing from developmental milestones already achieved, such as the ability to speak.

Matthew is now a freshman at Gateway High School. He communicates through a combination of signs, vocalization and other methods.

The film shows Matthew's central role in the life of his family -- parents Mark, 48, and Barbara, 46, and his siblings, brother Vincent, 21, and sister Maria, 18.

Matthew was diagnosed with autism in the mid-1990s, when much less was known about the condition.

Autism is a complex neurobiological disorder that affects communication and behavior. One in every 150 children in the United States is diagnosed with Autism Spectrum Disorders, ranging from mild to severe.

The film's interviews with Barbara and Mark Wallace reveal their strong bond to their son, and their daily struggle with the condition and concerns for the future. Vincent and Maria, both college students, were also "disarmingly frank" in the interviews, said Ms. Spirer.

"They talked about feelings that even we were not aware of," said Mrs. Wallace, who, like her husband, is a teacher.

"I have huge respect for the Wallaces," said Ms. Spirer. "They are so strong. They will do anything they can to make sure Matty has a better life."

Although she knew the Wallaces well, interviewing them was an emotional experience for Ms. Spirer and the family. After her first interview, she wondered whether she was doing the right thing by making the film.

"I was emotionally and physically drained," she said. "I didn't want the Wallaces to go through this if it was going to cause them pain."

Ms. Spirer's adviser at Allegheny College, River Branch, encouraged her to stay with it.

"She told me that I was going to encounter struggles as a filmmaker and that it tells you that the story is important to tell," Ms. Spirer said.

Barbara Wallace said the film perfectly captures Matty's innocence -- his big brown eyes, his sensory world -- and how the family has grown because of him. She believes that anyone who sees the film will gain a greater understanding of what children with autism and their families experience.

To obtain a copy of the film or to arrange a screening, contact Ms. Spirer at spirerj@gmail.com.

Author aims to raise autism awareness

2008-05-09T23:11:00.000-07:00

SPRINGFIELD - Several years ago, Jacqueline Williams-Hines discovered that explaining the characteristics of autism to neighborhood children made them much more comfortable with her son Joshua, who is now 11.

Children with Joshua's condition often avoid eye contact, may engage in repetitive movements or sounds, and may develop strong preoccupations with particular toys or favorite movies.

"I always felt that when children don't understand something, that's when it seems alien and weird to them," Williams-Hines said. "When we explained these issues to children on our street, things changed. Our son was no longer seen as weird. He was just Joshua."

It was that experience that inspired Williams-Hines, a full-time medical transcriptionist, to begin writing a series of books that aim to demystify autism for those she refers to as "typical children,"or those who do not have this condition.

The first book, "Joshua and the Startabulous Dream Maker," was a brief overview of autism. Her second book, which was released in April, is called "The Adventures of Suther Joshua from Planet Yethican."

"The new book deals with how autistic people tend to get preoccupied with things," Williams-Hines said. "In my son's case, it's Disney movies. He can see a movie once and then repeat the dialog verbatim. It's hard for other children to relate to (children with autism), so I wanted to explain a little about why they're preoccupied and how to communicate with them."

The third book she plans will focus on the habit of "auto-stimulation," which refers to self-soothing habits that can include rocking, bouncing or humming.

"Basically, I wanted him to develop friendships," Williams-Hines said, "and I knew it was a going to be hard for his peers."

Both books are self-published, but the author did receive a $2,100 grant from the Springfield Cultural Council for the second book.

When the first was released last year, she celebrated with a small launch party in her son's classroom at Boland Elementary School. Pizza and cake were followed by a reading of the book, which was fine with Joshua.

"He loves it," Williams-Hines said. "He feels like he's a celebrity now."

Originally from Louisiana, Williams-Hines graduated from the former Classical High School in Springfield and attended American International College. She and her husband, Robert, have two other sons, Robert IV, 19, and Anthony, 27.

"I've always written poetry and stories and wanted to publish, but I had never felt the passion I felt with these books," she said. "My first book began as a poem, and then I wondered how I could take my love of poetry and use it to express the difficulties that my son has to deal with every day."

Williams-Hines, who organized the annual No Small Victories Autism Awareness Event/Walk-a-thon - the second of which will take place on Sept. 27 - says her main focus is on raising awareness for parents and children, not raising money.

"People often hear about fund-raisers to help find an autism cure," she said. "My goal is more immediate. As a parent I have to live day to day, and I want to share with others what's going to make life easier now."

Wiliams-Hines said that when her son was diagnosed at the age of 2, she didn't know anyone else affected by autism. Since that time, it has become much more prevalent, which means the audience for her books includes just about everyone: classmates, younger siblings, friends and family members.

"Now it's getting hard not to know someone who has autism," she said. "It breaks my heart because whenever I meet someone who has just received the diagnosis, it takes me back to that day when my son was diagnosed. So I want to be able to share with others that's it going to get better and reach out to other parents and let them know: It's not over yet. Don't write our kids off."

THINKING IN PICTURES

2008-05-04T01:05:00.000-07:00

Dr. Temple Grandin

I THINK IN PICTURES. Words are like a second language to me. I translate both spoken and written words into full-color movies, complete with sound, which run like a VCR tape in my head. When somebody speaks to me, his words are instantly translated into pictures. Language-based thinkers often find this phenomenon difficult to understand, but in my job as an equipment designer for the livestock industry, visual thinking is a tremendous advantage.

Visual thinking has enabled me to build entire systems in my imagination. During my career I have designed all kinds of equipment, ranging from corrals for handling cattle on ranches to systems for handling cattle and hogs during veterinary procedures and slaughter. I have worked for many major livestock companies. In fact, one third of the cattle and hogs in the United States are handled in equipment I have designed. Some of the people I've worked for don't even know that their systems were designed by someone with autism. I value my ability to think visually, and I would never want to lose it.

One of the most profound mysteries of autism has been the remarkable ability of most autistic people to excel at visual spatial skills while performing so poorly at verbal skills. When I was a child and a teenager, I thought everybody thought in pictures. I had no idea that my thought processes were different. In fact, I did not realize the full extent of the differences until very recently. At meetings and at work I started asking other people detailed questions about how they accessed information from their memories. From their answers I learned that my visualization skills far exceeded those of most other people.

I credit my visualization abilities with helping me understand the animals I work with. Early in my career I used a camera to help give me the animals' perspective as they walked through a chute for their veterinary treatment. I would kneel down and take pictures through the chute from the cow's eye level. Using the photos, I was able to figure out which things scared the cattle, such as shadows and bright spots of sunlight. Back then I used black-and-white film, because twenty years ago scientists believed that cattle lacked color vision. Today, research has shown that cattle can see colors, but the photos provided the unique advantage of seeing the world through a cow's viewpoint. They helped me figure out why the animals refused to go in one chute but willingly walked through another.

Every design problem I've ever solved started with my ability to visualize and see the world in pictures. I started designing things as a child, when I was always experimenting with new kinds of kites and model airplanes. In elementary school I made a helicopter out of a broken balsa-wood airplane. When I wound up the propeller, the helicopter flew straight up about a hundred feet. I also made bird-shaped paper kites, which I flew behind my bike. The kites were cut out from a single sheet of heavy drawing paper and flown with thread. I experimented with different ways of bending the wings to increase flying performance. Bending the tips of the wings up made the kite fly higher. Thirty years later, this same design started appearing on commercial aircraft.

Now, in my work, before I attempt any construction, I test-run the equipment in my imagination. I visualize my designs being used in every possible situation, with different sizes and breeds of cattle and in different weather conditions. Doing this enables me to correct mistakes prior to construction. Today, everyone is excited about the new virtual reality computer systems in which the user wears special goggles and is fully immersed in video game action. To me, these systems are like crude cartoons. My imagination works like the computer graphics programs that created the lifelike dinosaurs in Jurassic Park. When I do an equipment simulation in my imagination or work on an engineering problem, it is like seeing it on a videotape in my mind. I can view it from any angle, placing myself above or below the equipment and rotating it at the same time. I don't need a fancy graphics program that can produce three-dimensional design simulations. I can do it better and faster in my head.

I create new images all the time by taking many little parts of images I have in the video library in my imagination and piecing them together. I have video memories of every item I've ever worked with -- steel gates, fences, latches, concrete walls, and so forth. To create new designs, I retrieve bits and pieces from my memory and combine them into a new whole. My design ability keeps improving as I add more visual images to my library. I add video-like images from either actual experiences or translations of written information into pictures. I can visualize the operation of such things as squeeze chutes, truck loading ramps, and all different types of livestock equipment. The more I actually work with cattle and operate equipment, the stronger my visual memories become.

I first used my video library in one of my early livestock design projects, creating a dip vat and cattle-handling facility for John Wayne's Red River feed yard in Arizona. A dip vat is a long, narrow, seven-foot-deep swimming pool through which cattle move in single file. It is filled with pesticide to rid the animals of ticks, lice, and other external parasites. In 1978, existing dip vat designs were very poor. The animals often panicked because they were forced to slide into the vat down a steep, slick concrete decline. They would refuse to jump into the vat, and sometimes they would flip over backward and drown. The engineers who designed the slide never thought about why the cattle became so frightened.

The first thing I did when I arrived at the feedlot was to put myself inside the cattle's heads and look out through their eyes. Because their eyes are on the sides of their heads, cattle have wide-angle vision, so it was like walking through the facility with a wide-angle video camera. I had spent the past six years studying how cattle see their world and watching thousands move through different facilities all over Arizona, and it was immediately obvious to me why they were scared. Those cattle must have felt as if they were being forced to jump down an airplane escape slide into the ocean.

Cattle are frightened by high contrasts of light and dark as well as by people and objects that move suddenly. I've seen cattle that were handled in two identical facilities easily walk through one and balk in the other. The only difference between the two facilities was their orientation to the sun. The cattle refused to move through the chute where the sun cast harsh shadows across it. Until I made this observation, nobody in the feedlot industry had been able to explain why one veterinary facility worked better than the other. It was a matter of observing the small details that made a big difference. To me, the dip vat problem was even more obvious.

My first step in designing a better system was collecting all the published information on existing dip vats. Before doing anything else, I always check out what is considered state-of-the-art so I don't waste time reinventing the wheel. Then I turned to livestock publications, which usually have very limited information, and my library of video memories, all of which contained bad designs. From experience with other types of equipment, such as unloading ramps for trucks, I had learned that cattle willingly walk down a ramp that has cleats to provide secure, non slip footing. Sliding causes them to panic and back up. The challenge was to design an entrance that would encourage the cattle to walk in voluntarily and plunge into the water, which was deep enough to submerge them completely, so that all the bugs, including those that collect in their ears, would be eliminated.

I started running three-dimensional visual simulations in my imagination. I experimented with different entrance designs and made the cattle walk through them in my imagination. Three images merged to form the final design: a memory of a dip vat in Yuma, Arizona, a portable vat I had seen in a magazine, and an entrance ramp I had seen on a restraint device at the Swift meat-packing plant in Tolleson, Arizona. The new dip vat entrance ramp was a modified version of the ramp I had seen there. My design contained three features that had never been used before: an entrance that would not scare the animals, an improved chemical filtration system, and the use of animal behavior principles to prevent the cattle from becoming overexcited when they left the vat.

The first thing I did was convert the ramp from steel to concrete. The final design had a concrete ramp on a twenty five-degree downward angle. Deep grooves in the concrete provided secure footing. The ramp appeared to enter the water gradually, but in reality it abruptly dropped away below the water's surface. The animals could not see the drop-off because the dip chemicals colored the water. When they stepped out over the water, they quietly fell in, because their center of gravity had passed the point of no return.

Before the vat was built, I tested the entrance design many times in my imagination. Many of the cowboys at the feedlot were skeptical and did not believe my design would work. After it was constructed, they modified it behind my back, because they were sure it was wrong. A metal sheet was installed over the non slip ramp, converting it back to an old-fashioned slide entrance. The first day they used it, two cattle drowned because they panicked and flipped over backward.

When I saw the metal sheet, I made the cowboys take it out. They were flabbergasted when they saw that the ramp now worked perfectly. Each calf stepped out over the steep drop-off and quietly plopped into the water. I fondly refer to this design as "cattle walking on water."

Over the years, I have observed that many ranchers and cattle feeders think that the only way to induce animals to enter handling facilities is to force them in. The owners and managers of feedlots sometimes have a hard time comprehending that if devices such as dip vats and restraint chutes are properly designed, cattle will voluntarily enter them. I can imagine the sensations the animals would feel. If I had a calf's body and hooves, I would be very scared to step on a slippery metal ramp.

There were still problems I had to resolve after the animals left the dip vat. The platform where they exit is usually divided into two pens so that cattle can dry on one side while the other side is being filled. No one understood why the animals coming out of the dip vat would sometimes become excited, but I figured it was because they wanted to follow their drier buddies, not unlike children divided from their classmates on a playground. I installed a solid fence between the two pens to prevent the animals on one side from seeing the animals on the other side. It was a very simple solution, and it amazed me that nobody had ever thought of it before.

The system I designed for filtering and cleaning the cattle hair and other gook out of the dip vat was based on a swimming pool filtration system. My imagination scanned two specific swimming pool filters that I had operated, one on my Aunt Brecheen's ranch in Arizona and one at our home. To prevent water from splashing out of the dip vat, I copied the concrete coping overhang used on swimming pools. That idea, like many of my best designs, came to me very clearly just before I drifted off to sleep at night.

Being autistic, I don't naturally assimilate information that most people take for granted. Instead, I store information in my head as if it were on a CD-ROM disc. When I recall something I have learned, I replay the video in my imagination. The videos in my memory are always specific; for example, I remember handling cattle at the veterinary chute at Producer's Feedlot or McElhaney Cattle Company. I remember exactly how the animals behaved in that specific situation and how the chutes and other equipment were built. The exact construction of steel fenceposts and pipe rails in each case is also part of my visual memory. I can run these images over and over and study them to solve design problems.

If I let my mind wander, the video jumps in a kind of free association from fence construction to a particular welding shop where I've seen posts being cut and Old John, the welder, making gates. If I continue thinking about Old John welding a gate, the video image changes to a series of short scenes of building gates on several projects I've worked on. Each video memory triggers another in this associative fashion, and my daydreams may wander far from the design problem. The next image may be of having a good time listening to John and the construction crew tell war stories, such as the time the backhoe dug into a nest of rattlesnakes and the machine was abandoned for two weeks because everybody was afraid to go near it.

This process of association is a good example of how my mind can wander off the subject. People with more severe autism have difficulty stopping endless associations. I am able to stop them and get my mind back on track. When I find my mind wandering too far away from a design problem I am trying to solve, I just tell myself to get back to the problem.

Interviews with autistic adults who have good speech and are able to articulate their thought processes indicate that most of them also think in visual images. More severely impaired people, who can speak but are unable to explain how they think, have highly associational thought patterns. Charles Hart, the author of "Without Reason", a book about his autistic son and brother, sums up his son's thinking in one sentence: "Ted's thought processes aren't logical, they're associational." This explains'~ Ted's statement "I'm not afraid of planes. That's why they fly so high." In his mind, planes fly high because he is not afraid of them; he combines two pieces of information, that planes fly high and that he is not afraid of heights.

Another indicator of visual thinking as the primary method of processing information is the remarkable ability many autistic people exhibit in solving jigsaw puzzles, finding their way around a city, or memorizing enormous amounts of information at a glance. My own thought patterns are similar to those described by A. R. Luria in The Mind of a Mnemonist. This book describes a man who worked as a newspaper reporter and could perform amazing feats of memory. Like me, the mnemonist had a visual image for everything he had heard or read. Luria writes, "For when he heard or read a word, it was at once converted into a visual image corresponding with the object the word signified for him." The great inventor Nikola Tesla was also a visual thinker. When he designed electric turbines for power generation, he built each turbine in his head. He operated it in his imagination and corrected faults. He said it did not matter whether the turbine was tested in his thoughts or in his shop; the results would be the same.

Early in my career I got into fights with other engineers at meat-packing plants. I couldn't imagine that they could be so stupid as not to see the mistakes on the drawing before the equipment was installed. Now I realize it was not stupidity but a lack of visualization skills. They literally could not see. I was fired from one company that manufactured meat-packing plant equipment because I fought with the engineers over a design which eventually caused the collapse of an overhead track that moved 1,200-pound beef carcasses from the end of a conveyor. As each carcass came off the conveyor, it dropped about three feet before it was abruptly halted by a chain attached to a trolley on the overhead track. The first time the machine was run, the track was pulled out of the ceiling. The employees fixed it by bolting it more securely and installing additional brackets. This only solved the problem temporarily, because the force of the carcasses jerking the chains was so great. Strengthening the overhead track was treating a symptom of the problem rather than its cause. I tried to warn them. It was like bending a paper clip back and forth too many times. After a while it breaks.

Different Ways of Thinking

The idea that people have different thinking patterns is not new. Francis Galton, in Inquiries into Human Faculty and Development, wrote that while some people see vivid mental pictures, for others "the idea is not felt to be mental pictures, but rather symbols of facts. In people with low pictorial imagery, they would remember their breakfast table but they could not see it.''

It wasn't until I went to college that I realized some people are completely verbal and think only in words. I first suspected this when I read an article in a science magazine about the development of tool use in prehistoric humans. Some renowned scientist speculated that humans had to develop language before they could develop tools. I thought this was ridiculous, and this article gave me the first inkling that my thought processes were truly different from those of many other people. When I invent things, I do not use language. Some other people think in vividly detailed pictures, but most think in a combination of words and vague, generalized pictures.

For example, many people see a generalized generic church rather than specific churches and steeples when they read or hear the word "steeple." Their thought patterns move from a general concept to specific examples. I used to become very frustrated when a verbal thinker could not understand something I was trying to express because he or she couldn't see the picture that was crystal clear to me. Further, my mind constantly revises general concepts as I add new information to my memory library. It's like getting a new version of software for the computer. My mind readily accepts the new "software," though I have observed that some people often do not readily accept new information.

Unlike those of most people, my thoughts move from video like, specific images to generalization and concepts. For example, my concept of dogs is inextricably linked to every dog I've ever known. It's as if I have a card catalog of dogs I have seen, complete with pictures, which continually grows as I add more examples to my video library. If I think about Great Danes, the first memory that pops into my head is Dansk, the Great Dane owned by the headmaster at my high school. The next Great Dane I visualize is Helga, who was Dansk's replacement. The next is my aunt's dog in Arizona, and my final image comes from an advertisement for Fitwell seat covers that featured that kind of dog. My memories usually appear in my imagination in strict chronological order, and the images I visualize are always specific. There is no generic, generalized Great Dane.

However, not all people with autism are highly visual thinkers, nor do they all process information this way. People throughout the world are on a continuum of visualization skills ranging from next to none, to seeing vague generalized pictures, to seeing semi-specific pictures, to seeing, as in my case, in very specific pictures.

I'm always forming new visual images when I invent new equipment or think of something novel and amusing. I can take images that I have seen, rearrange them, and create new pictures. For example, I can imagine what a dip vat would look like modeled on computer graphics by placing it on my memory of a friend's computer screen. Since his computer is not programmed to do the fancy 3-D rotary graphics, I take computer graphics I have seen on TV or in the movies and superimpose them in my memory. In my visual imagination the dip vat will appear in the kind of high quality computer graphics shown on Star Trek. I can then take a specific dip vat, such as the one at Red River, and redraw it on the computer screen in my mind. I can even duplicate the cartoonlike, three-dimensional skeletal image on the computer screen or imagine the dip vat as a videotape of the real thing.

Similarly, I learned how to draw engineering designs by closely observing a very talented draftsman when we worked together at the same feed yard construction company. David was able to render the most fabulous drawings effortlessly. After I left the company, I was forced to do all my own drafting. By studying David's drawings for many hours and photographing them in my memory, I was actually able to emulate David's drawing style. I laid some of his drawings out so I could look at them while I drew my first design. Then I drew my new plan and copied his style. After making three or four drawings, I no longer had to have his drawings out on the table. My video memory was now fully programmed. Copying designs is one thing, but after I drew the Red River drawings, I could not believe I had done them. At the time, I thought they were a gift from God. Another factor that helped me to learn to draw well was something as simple as using the same tools that David used. I used the same brand of pencil, and the ruler and straight edge forced me to slow down and trace the visual images in my imagination.

My artistic abilities became evident when I was in first and second grade. I had a good eye for color and painted watercolors of the beach. One time in fourth grade I modeled a lovely horse from clay. I just did it spontaneously, though I was not able to duplicate it. In high school and college I never attempted engineering drawing, but I learned the value of slowing down while drawing during a college art class. Our assignment had been to spend two hours drawing a picture of one of our shoes. The teacher insisted that the entire two hours be spent drawing that one shoe. I was amazed at how well my drawing came out. While my initial attempts at drafting were terrible, when I visualized myself as David, the draftsman, I'd automatically slow down.

Processing Nonvisual Information

Autistics have problems learning things that cannot be thought about in pictures. The easiest words for an autistic child to learn are nouns, because they directly relate to pictures. Highly verbal autistic children like I was can sometimes learn how to read with phonics. Written words were too abstract for me to remember, but I could laboriously remember the approximately fifty phonetic sounds and a few rules. Lower-functioning children often learn better by association, with the aid of word labels attached to objects in their environment. Some very impaired autistic children learn more easily if words are spelled out with plastic letters they can feel.

Spatial words such as "over" and "under" had no meaning for me until I had a visual image to fix them in my memory. Even now, when I hear the word "under" by itself, I automatically picture myself getting under the cafeteria tables at school during an air-raid drill, a common occurrence on the East Coast during the early fifties. The first memory that any single word triggers is almost always a childhood memory. I can remember the teacher telling us to be quiet and walking single-file into the cafeteria, where six or eight children huddled under each table. If I continue on the same train of thought, more and more associative memories of elementary school emerge. I can remember the teacher scolding me after I hit Alfred for putting dirt on my shoe. All of these memories play like videotapes in the VCR in my imagination. If I allow my mind to keep associating, it will wander a million miles away from the word "under," to submarines under the Antarctic and the Beatles song "Yellow Submarine." If I let my mind pause on the picture of the yellow submarine, I then hear the song. As I start humming the song and get to the part about people coming on board, my association switches to the gangway of a ship I saw in Australia.

I also visualize verbs. The word "jumping" triggers a memory of jumping hurdles at the mock Olympics held at my elementary school. Adverbs often trigger inappropriate images -- "quickly" reminds me of Nestle's Quik -- unless they are paired with a verb, which modifies my visual image. For example, "he ran quickly" triggers an animated image of Dick from the first-grade reading book running fast, and "he walked slowly" slows the image down. As a child, I left out words such as "is," "the," and "it," because they had no meaning by themselves. Similarly, words like "of," and "an" made no sense. Eventually I learned how to use them properly, because my parents always spoke correct English and I mimicked their speech patterns. To this day certain verb conjugations, such as "to be," are absolutely meaningless to me.

When I read, I translate written words into color movies or I simply store a photo of the written page to be read later. When I retrieve the material, I see a photocopy of the page in my imagination. I can then read it like a Teleprompter. It is likely that Raymond, the autistic savant depicted in the movie Rain Man, used a similar strategy to memorize telephone books, maps, and other information. He simply photocopied each page of the phone book into his memory. When he wanted to find a certain number, he just scanned pages of the phone book that were in his mind. To pull information out of my memory, I have to replay the video. Pulling facts up quickly is sometimes difficult, because I have to play bits of different videos until I find the right tape. This takes time.

When I am unable to convert text to pictures, it is usually because the text has no concrete meaning. Some philosophy books and articles about the cattle futures market are simply incomprehensible. It is much easier for me to understand written text that describes something that can be easily translated into pictures. The following sentence from a story in the February 21, 1994, issue of Time magazine, describing the Winter Olympics figure-skating championships, is a good example: "All the elements are in place -- the spotlights, the swelling waltzes and jazz tunes, the sequined sprites taking to the air." In my imagination I see the skating rink and skaters. However, if I ponder too long on the word "elements," I will make the inappropriate association of a periodic table on the wall of my high school chemistry classroom. Pausing on the word "sprite" triggers an image of a Sprite can in my refrigerator instead of a pretty young skater.

Teachers who work with autistic children need to understand associative thought patterns. An autistic child will often use a word in an inappropriate manner. Sometimes these uses have a logical associative meaning and other times they don't. For example, an autistic child might say the word "dog" when he wants to go outside. The word "dog" is associated with going outside. In my own case, I can remember both logical and illogical use of inappropriate words. When I was six, I learned to say "prosecution." I had absolutely no idea what it meant, but it sounded nice when I said it, so I used it as an exclamation every time my kite hit the ground. I must have baffled more than a few people who heard me exclaim "Prosecution!" to my downward-spiraling kite.

Discussions with other autistic people reveal similar visual styles of thinking about tasks that most people do sequentially. An autistic man who composes music told me that he makes "sound pictures" using small pieces of other music to create new compositions. A computer programmer with autism told me that he sees the general pattern of the program tree. After he visualizes the skeleton for the program, he simply writes the code for each branch. I use similar methods when I review scientific literature and troubleshoot at meat plants. I take specific findings or observations and combine them to find new basic principles and general concepts.

My thinking pattern always starts with specifics and works toward generalization in an associational and nonsequential way. As if I were attempting to figure out what the picture on a jigsaw puzzle is when only one third of the puzzle is completed, I am able to fill in the missing pieces by scanning my video library. Chinese mathematicians who can make large calculations in their heads work the same way. At first they need an abacus, the Chinese calculator, which consists of rows of beads on wires in a frame. They make calculations by moving the rows of beads. When a mathematician becomes really skilled, he simply visualizes the abacus in his imagination and no longer needs a real one. The beads move on a visualized video abacus in his brain.

Abstract Thought

Growing up, I learned to convert abstract ideas into pictures as a way to understand them. I visualized concepts such as peace or honesty with symbolic images. I thought of peace as a dove, an Indian peace pipe, or TV or newsreel footage of the signing of a peace agreement. Honesty was represented by an image of placing one's hand on the Bible in court. A news report describing a person returning a wallet with all the money in it provided a picture of honest behavior.

The Lord's Prayer was incomprehensible until I broke it down into specific visual images. The power and the glory were represented by a semicircular rainbow and an electrical tower. These childhood visual images are still triggered every time I hear the Lord's Prayer. The words "thy will be done" had no meaning when I was a child, and today the meaning is still vague. Will is a hard concept to visualize. When I think about it, I imagine God throwing a lightning bolt. Another adult with autism wrote that he visualized "Thou art in heaven" as God with an easel above the clouds. "Trespassing" was pictured as black and orange NO TRESPASSING signs. The word "Amen" at the end of the prayer was a mystery: a man at the end made no sense.

As a teenager and young adult I had to use concrete symbols to understand abstract concepts such as getting along with people and moving on to the next steps of my life, both of which were always difficult. I knew I did not fit in with my high school peers, and I was unable to figure out what I was doing wrong. No matter how hard I tried, they made fun of me. They called me "workhorse," "tape recorder," and "bones" because I was skinny. At the time I was able to figure out why they~ called me "workhorse" and "bones," but "tape recorder" puzzled me. Now I realize that I must have sounded like a tape recorder when I repeated things verbatim over and over. But back then I just could not figure out why I was such a social dud. I sought refuge in doing things I was good at, such as working on reroofing the barn or practicing my riding prior to a horse show. Personal relationships made absolutely no sense to me until I developed visual symbols of doors and windows. It was then that I started to understand concepts such as learning the give-and-take of a relationship. I still wonder what would have happened to me if I had not been able to visualize my way in the world.

The really big challenge for me was making the transition from high school to college. People with autism have tremendous difficulty with change. In order to deal with a major change such as leaving high school, I needed a way to rehearse it, acting out each phase in my life by walking through an actual door, window, or gate. When I was graduating from high school, I would go and sit on the roof of my dormitory and look up at the stars and think about how I would cope with leaving. It was there I discovered a little door that led to a bigger roof while my dormitory was being remodeled. While I was still living in this o1d New England house, a much larger building was being constructed over it. One day the carpenters tore out a section of the o1d roof next to my room. When I walked out, I was now able to look up into the partially finished new building. High on one side was a small wooden door that led to the new roof. The building was changing and it was now time for me to change too. I could relate to that. I had found the symbolic key.

When I was in college, I found another door to symbolize getting ready for graduation. It was a small metal trap door that went out onto the flat roof of the dormitory. I had to actually practice going through this door many times. When I finally graduated from Franklin Pierce, I walked through a third, very important door, on the library roof.

I no longer use actual physical doors or gates to symbolize each transition in my life. When I reread years of diary entries while writing this book, a clear pattern emerged. Each door or gate enabled me to move on to the next level. My life was a series of incremental steps. I am often asked what the single breakthrough was that enabled me to adapt to autism. There was no single breakthrough. It was a series of incremental improvements. My diary entries show very clearly that I was fully aware that when I mastered one door, it was only one step in a whole series.

April 22, 1970

Today everything is completed at Franklin Pierce College and it is now time to walk through the little door in the library. I ponder now about what I should leave as a message on the library roof for future people to find. I have reached the top of one step and I am now at the bottom step of graduate school. For the top of the building is the highest point on campus and I have gone as far as I can go now. I have conquered the summit of FPC. Higher ones still remain unchallenged. - Class 70

I went through the little door tonight and placed the plaque on the top of the library roof. I was not as nervous this time. I had been much more nervous in the past. Now I have already made it and the little door and the mountain had already been climbed. The conquering of this mountain is only the beginning for the next mountain.

The word commencement means beginning and the top of the library is the beginning of graduate school. It is human nature to strive, and this is why people will climb mountains. The reason why is that people strive to prove that they could do it.

After all, why should we send a man to the moon? The only real justification is that it is human nature to keep striving out. Man is never satisfied with one goal he keeps reaching. The real reason for going to the library roof was to prove that I could do it.

During my life I have been faced with five or six major doors or gates to go through. I graduated from Franklin Pierce, a small liberal arts college, in 1970, with a degree in psychology, and moved to Arizona to get a Ph.D. As I found myself getting less interested in psychology and more interested in cattle and animal science, I prepared myself for another big change in my life -- switching from a psychology major to an animal science major. On May 8, 1971, I wrote:

I feel as if I am being pulled more and more in the farm direction. I walked through the cattle chute gate but I am still holding on tightly to the gate post. The wind is blowing harder and harder and I feel that I will let go of the gate post and go back to the farm; at least for a while. Wind has played an important part in many of the doors. On the roof, the wind was blowing. Maybe this is a symbol that the next level that is reached is not ultimate and that I must keep moving on. At the party [a psychology department party] I felt completely out of place and it seems as if the wind is causing my hands to slip from the gate post so that I can ride free on the wind.

At that time I still struggled in the social arena, largely because I didn't have a concrete visual corollary for the abstraction known as "getting along with people." An image finally presented itself to me while I was washing the bay window in the cafeteria (students were required to do jobs in the dining room). I had no idea my job would take on symbolic significance when I started. The bay window consisted of three glass sliding doors enclosed by storm windows. To wash the inside of the bay window, I had to crawl through the sliding door. The door jammed while I was washing the inside panes, and I was imprisoned between the two windows. In order to get out without shattering the door, I had to ease it back very carefully. It struck me that relationships operate the same way. They also shatter easily and have to be approached carefully. I then made a further association about how the careful opening of doors was related to establishing relationships in the first place. While I was trapped between the windows, it was almost impossible to communicate through the glass. Being autistic is like being trapped like this. The windows symbolized my feelings of disconnection from other people and helped me cope with the isolation. Throughout my life, door and window symbols have enabled me to make progress and connections that are unheard of for some people with autism.

In more severe cases of autism, the symbols are harder to understand and often appear to be totally unrelated to the things they represent. D. Park and P. Youderian described the use of visual symbols and numbers by Jessy Park, then a twelve-year-old autistic girl, to describe abstract concepts such as good and bad. Good things, such as rock music, were represented by drawings of four doors and no clouds. Jessy rated most classical music as pretty good, drawing two doors and two clouds. The spoken word was rated as very bad, with a rating of zero doors and four clouds. She had formed a visual rating system using doors and clouds to describe these abstract qualities. Jessy also had an elaborate system of good and bad numbers, though researchers have not been able to decipher her system fully.

Many people are totally baffled by autistic symbols, but to an autistic person they may provide the only tangible reality or understanding of the world. For example, "French toast" may mean happy if the child was happy while eating it. When the child visualizes a piece of French toast, he becomes happy. A visual image or word becomes associated with an experience. Clara Park, Jessy's mother, described her daughter's fascination with objects such as electric blanket controls and heaters. She had no idea why the objects were so important to Jessy, though she did observe that Jessy was happiest, and her voice was no longer a monotone, when she was thinking about her special things. Jessy was able to talk, but she was unable to tell people why her special things were important. Perhaps she associated electric blanket controls and heaters with warmth and security. The word "cricket" made her happy, and "partly heard song" meant "I don't know." The autistic mind works via these visual associations. At some point in Jessy's life, a partly heard song was associated with not knowing.

Ted Hart, a man with severe autism, has almost no ability to generalize and no flexibility in his behavior. His father, Charles, described how on one occasion Ted put wet clothes in the dresser after the dryer broke. He just went on to the next step in a clothes-washing sequence that he had learned by rote. He has no common sense. I would speculate that such rigid behavior and lack of ability to generalize may be partly due to having little or no ability to change or modify visual memories. Even though my memories of things are stored as individual specific memories, I am able to modify my mental images. For example, I can imagine a church painted in different colors or put the steeple of one church onto the roof of another; but when I hear somebody say the word "steeple," the first church that I see in my imagination is almost always a childhood memory and not a church image that I have manipulated. This ability to modify images in my imagination helped me to learn how to generalize.

Today, I no longer need door symbols. Over the years I have built up enough real experiences and information from articles and books I have read to be able to make changes and take necessary steps as new situations present themselves. Plus, I have always been an avid reader, and I am driven to take in more and more information to add to my video library. A severely autistic computer programmer once said that reading was "taking in information." For me, it is like programming a computer.

Visual Thinking and Mental Imagery

Recent studies of patients with brain damage and of brain imaging indicate that visual and verbal thought may work via different brain systems. Recordings of blood flow in the brain indicate that when a person visualizes something such as walking through his neighborhood, blood flow increases dramatically in the visual cortex, in parts of the brain that are working hard. Studies of brain-damaged patients show that injury to the left posterior hemisphere can stop the generation of visual images from stored long-term memories, while language and verbal memory are not impaired. This indicates that visual imagery and verbal thought may depend on distinct neurological systems.

The visual system may also contain separate subsystems for mental imagery and image rotation. Image rotation skills appear to be located on the right side of the brain, whereas visual imagery is in the left rear of the brain. In autism, it is possible that the visual system has expanded to make up for verbal and sequencing deficits. The nervous system has a remarkable ability to compensate when it is damaged. Another part can take over for a damaged part.

Recent research by Dr. Pascual-Leone at the National Institutes of Health indicates that exercising a visual skill can make the brain's motor map expand. Research with musicians indicates that real practice on the piano and imagining playing the piano have the same effect on motor maps, as measured by brain scans. The motor maps expand during both real piano playing and mental imagery; random pushing of the keys has no effect. Athletes have also found that both mental practice and real practice can improve a motor skill. Research with patients with damage to the hippocampus has indicated that conscious memory of events and motor learning are separate neurological systems. A patient with hippocampal damage can learn a motor task and get better with practice, but each time he practices he will have no conscious memory of doing the task. The motor circuits become trained, but damage to the hippocampus prevents the formation of new conscious memories. Therefore, the motor circuits learn a new task, such as solving a simple mechanical puzzle, but the person does not remember seeing or doing the puzzle. With repeated practice, the person gets better and better at it, but each time the puzzle is presented, he says he has never seen it before.

I am fortunate in that I am able to build on my library of images and visualize solutions based on those pictures. However, most people with autism lead extremely limited lives, in part because they cannot handle any deviation from their routine. For me, every experience builds on the visual memories I carry from prior experience, and in this way my world continues to grow.

About two years ago I made a personal breakthrough when I was hired to remodel a meat plant that used very cruel restraint methods during kosher slaughter. Prior to slaughter, live cattle were hung upside down by a chain attached to one back leg. It was so horrible I could not stand to watch it. The frantic bellows of terrified cattle could be heard in both the office and the parking lot. Sometimes an animal's back leg was broken during hoisting. This dreadful practice totally violated the humane intent of kosher slaughter. My job was to rip out this cruel system and replace it with a chute that would hold the animal in a standing position while the rabbi performed kosher slaughter. Done properly, the animal should remain calm and would not be frightened.

The new restraining chute was a narrow metal stall which held one steer. It was equipped with a yoke to hold the animal's head, a rear pusher gate to nudge the steer forward into the yoke, and a belly restraint which was raised under the belly like an elevator. To operate the restrainer, the operator had to push six hydraulic control levers in the proper sequence to move the entrance and discharge gates as well as the head- and body-positioning devices. The basic design of this chute had been around for about thirty years, but I added pressure-regulating devices and changed some critical dimensions to make it more comfortable for the animal and to prevent excessive pressure from being applied.

Prior to actually operating the chute at the plant, I ran it in the machine shop before it was shipped. Even though no cattle were present, I was able to program my visual and tactile memory with images of operating the chute. After running the empty chute for five minutes, I had accurate mental pictures of how the gates and other parts of the apparatus moved. I also had tactile memories of how the levers on this particular chute felt when pushed. Hydraulic valves are like musical instruments; different brands of valves have a different feel, just as different types of wind instruments do. Operating the controls in the machine shop enabled me to practice later via mental imagery. I had to visualize the actual controls on the chute and, in my imagination, watch my hands pushing the levers. I could feel in my mind how much force was needed to move the gates at different speeds. I rehearsed the procedure many times in my mind with different types of cattle entering the chute.

On the first day of operation at the plant, I was able to walk up to the chute and run it almost perfectly. It worked best when I operated the hydraulic levers unconsciously, like using my legs for walking. If I thought about the levers, I got all mixed up and pushed them the wrong way. I had to force myself to relax and just allow the restrainer to become part of my body, while completely forgetting about the levers. As each animal entered, I concentrated on moving the apparatus slowly and gently so as not to scare him. I watched his reactions so that I applied only enough pressure to hold him snugly. Excessive pressure would cause discomfort. If his ears were laid back against his head or he struggled, I knew I had squeezed him too hard. Animals are very sensitive to hydraulic equipment. They feel the smallest movement of the control levers.

Through the machine I reached out and held the animal. When I held his head in the yoke, I imagined placing my hands on his forehead and under his chin and gently easing him into position. Body boundaries seemed to disappear, and I had no awareness of pushing the levers. The rear pusher gate and head yoke became an extension of my hands.

People with autism sometimes have body boundary problems. They are unable to judge by feel where their body ends and the chair they are sitting on or the object they are holding begins, much like what happens when a person loses a limb but still experiences the feeling of the limb being there. In this case, the parts of the apparatus that held the animal felt as if they were a continuation of my own body, similar to the phantom limb effect. If I just concentrated on holding the animal gently and keeping him calm, I was able to run the restraining chute very skillfully.

During this intense period of concentration I no longer heard noise from the plant machinery. I didn't feel the sweltering Alabama summer heat, and everything seemed quiet and serene. It was almost a religious experience. It was my job to hold the animal gently, and it was the rabbi's job to perform the final deed. I was able to look at each animal, to hold him gently and make him as comfortable as possible during the last moments of his life. I had participated in the ancient slaughter ritual the way it was supposed to be. A new door had been opened. It felt like walking on water.

2006 Update to Chapter 1

Since I wrote Thinking in Pictures, brain imaging studies have provided more insights into how the brain of a person on the autism/Asperger spectrum processes information. Nancy Minshew at Carnegie Mellon University in Pittsburgh has found that normal brains tend to ignore the details while people on the autism spectrum tend to focus on the details instead of larger concepts. To view this phenomenon, she had normal, Asperger, and autistic people read sentences while they were in a scanner. The autistic brain was most active in the part of the brain that processes the individual words while the normal brain was most active in the part that analyzes the whole sentence. The Asperger brain was active in both areas. Eric Courchesne at the University of California in San Diego states that autism may be a disorder of brain circuit disconnections. This would affect the ability to integrate detailed information from lower parts of the brain where sensory based memories are stored with higher level information processing in the frontal cortex. Lower level processing systems may be spared or possibly enhanced. He discovered in an autistic person that the only parts of the brain that are normal are the visual cortex and the areas in the rear of the brain that store memories. This finding helps explain my visual thinking. Scans of autistic brains have indicated that the white matter in the frontal cortex is overgrown and abnormal. Dr. Courchesne explains that white matter is the brain's "computer cables" connecting up different parts of the brain while the gray matter forms the information processing circuits. Instead of growing normally and connecting various parts of the brain together, the autistic frontal cortex has excessive overgrowth much like a thicket of tangled computer cables. In the normal brain, reading a word and speaking a word are processed in different parts of the brain. Connecting circuits between these two areas makes It possible to simultaneously process information from both of them. Both Courchesne and Minshew agree that a basic problem in both autistic and Asperger brains is a failure of the "computer cables" to fully connect together the many different localized brain systems. Local systems may have normal or enhanced internal connections but the long distance connections between the different local systems may be poor.

I am now going to use what I call visual symbol imagery to help you understand how the different parts of the normal brain communicate with each other. Think of the normal brain as a big corporate office building. All the different departments such as legal, accounting, advertising, sales, and the CEO's office are connected together by many communication systems such as e-mail, telephones, fax machines, and electronic messaging. The autistic/Asperger brain is like an office building where some of the interdepartmental communication systems are not hooked up. Minshew calls this underconnectivity in the brain. More systems would be hooked up in an Asperger brain than in the brain of a low-functioning individual. The great variability in autistic/ Asperger symptoms probably depends on which "cables" get connected and which "cables" do not get connected. Poor communication between brain departments is likely the cause of uneven skills. People on the spectrum are often good at one thing and bad at something else. To use the computer cable analogy, the limited number of good cables may connect up one area and leave the other areas with poor connections.
Develop Talents in Specialized Brains
When I wrote Thinking in Pictures I thought most people on the autism spectrum were visual thinkers like me. After talking to hundreds of families and individuals with autism or Asperger's, I have observed that there are actually different types of specialized brains. All people on the spectrum think in details, but there are three basic categories of specialized brains. Some individuals may be combinations of these categories.

1. Visual thinkers, like me, think in photographically specific images. There are degrees of specificity of visual thinking. I can test run a machine in my head with full motion. Interviews with nonautistic visual thinkers indicated that they can only visualize still images. These images may range in specificity from images of specific places to more vague conceptual images. Learning algebra was impossible and a foreign language was difficult. Highly specific visual thinkers should skip algebra and study more visual forms of math such as trigonometry or geometry. Children who are visual thinkers will often be good at drawing, other arts, and building things with building toys such as Lego's. Many children who are visual thinkers like maps, flags, and photographs. Visual thinkers are well suited to jobs in drafting, graphic design, training animals, auto mechanics, jewelry making, construction, and factory automation.

2. Music and math thinkers think in patterns. These people often excel at math, chess, and computer programming. Some of these individuals have explained to me that they see patterns and relationships between patterns and numbers instead of photographic images. As children they may play music by ear and be interested in music. Music and math minds often have careers in computer programming, chemistry, statistics, engineering, music, and physics. Written language is not required for pattern thinking. The pre-literate Incas used complex bundles of knotted cords to keep track of taxes, labor, and trading among a thousand people.

3. Verbal logic thinkers think in word details. They often love history, foreign languages, weather statistics, and stock market reports. As children they often have a vast knowledge of sports scores. They are not visual thinkers and they are often poor at drawing. Children with speech delays are more likely to become visual or music and math thinkers. Many of these individuals had no speech delays, and they became word specialists. These individuals have found successful careers in language translation, journalism, accounting, speech therapy, special education, library work, or financial analysis.

Since brains on the autistic spectrum are specialized, there needs to be more educational emphasis on building up their strengths instead of just working on their deficits. Tutoring me in algebra was useless because there was nothing for me to visualize. If I have no picture, I have no thought. Unfortunately I never had an opportunity to try trigonometry or geometry. Teachers and parents need to develop the child's talents into skills that can eventually turn into satisfying jobs or hobbies.

Concept Formation

All individuals on the autism/Asperger spectrum have difficulties with forming concepts. Problems with conceptual thought occur in all of the specialized brain types. Conceptual thinking occurs in the frontal cortex. The frontal cortex is analogous to the CEO's office in a corporation. Researchers refer to frontal cortex deficits as problems with execution function. In normal brains, "computer cables" from all parts of the brain converge on the frontal cortex. The frontal cortex integrates information fi7om thinking, emotional, and sensory parts of the brain. The degree of difficulty in forming concepts is probably related to the number and type of 11 computer cables" that are not hooked up. Since my CEO's office has poor "computer" connections, I had to use the "graphic designers" in my "advertising department" to form concepts by associating visual details into categories. Scientific research supports my idea. Detailed visual and musical memories reside in the lower primary visual and auditory cortex and more conceptual thinking is in association areas where inputs from different parts of the brain are merged.

Categories are the beginning of concept formation. Nancy Minshew found that people with autism can easily sort objects into categories such as red or blue, but they have difficulty thinking up new categories for groups of common objects. If I put a variety of common things on a table such as staplers, pencils, books, an envelope, a clock, hats, golf balls, and a tennis racquet, and asked an individual with autism to pick out objects containing paper, they could do it. However, they often have difficulty when asked to make tip new categories. Teachers should work on teaching flexibility of thinking by playing a game where the autistic individual is asked to make up new categories for the objects like objects containing metal, or objects used in sports. Then the teacher should get the person to explain the reason for putting an object in a specific category.

When I was a child I originally categorized dogs from cats by size. That no longer worked when our neighbors got a small dachshund. I had to learn to categorize small dogs fi7om cats by finding a visual feature that all the dogs had and none of the cats had. All dogs, no matter how small, have the same nose. This is sensory-based thinking, not language-based. The animals could also be categorized by sound, barking versus meowing. A lower functioning person may categorize them by smell or touch because those senses provide more accurate information. Dividing information into distinct categories is a fundamental property of the nervous system. Studies with bees, rats, and monkeys all indicate that information is placed into categories with sharp boundaries. French scientists recorded signals from the frontal cortex of a monkey's brain while it was looking at computer generated images of dogs that gradually turned into cats. There was a distinct change in the brain signal when the category switched to cat. In the frontal cortex, the animal image was either a dog or a cat. When categorizing cats from dogs by size no longer worked for me, I had to form a new category of nose type. Research by Itzahak Fried at UCLA has shown that individual neurons learn to respond to specific categories. Recordings taken from patients undergoing brain surgery showed that one neuron may respond only to pictures of food and another neuron win respond only to pictures of animals. This neuron will not respond to pictures of people or objects. In another patient, a neuron in the hippocampus responded to pictures of a movie actress both in and out of costume but it did not respond to pictures of other women. The hippocampus is like the brain's file finder for locating information in stored memory.

Becoming More Normal

More knowledge makes me act more normal. Many people have commented to me that I act much less autistic now than I did ten years ago. A person who attended one of my talks in 2005 wrote on my evaluation, "I saw Temple in 1996, it was fun to see the poise and presentation manner she has gained over the years." My mind works Just like an Internet search engine that has been set to access only images. The more pictures I have stored in the Internet inside my brain the more templates I have of how to act in a new situation. More and more information can be placed in more and more categories. The categories can be placed in trees of master categories with many subcategories. For example, there are jokes that make people laugh and jokes that do not work.

There is then a subcategory of jokes that can only be told to close friends. When I was a teenager I was called "tape recorder" because I used scripted lines. As I gained experience, my conversation became less scripted because I could combine new information in new ways. To help understand the autistic brain I recommend that teachers and parents should play with an Internet search engine such as Google for images. It will give people who are more verbal thinkers an understanding into how visual associative thinking works. People with music and math minds have a search engine that finds associations between patterns and numbers.

The Asperger individual who is a verbal logic thinker uses verbal categories. For example, Dr. Minshew had an Asperger patient who had a bad side effect with a medication. Explaining the science of why he should try a different medication was useless. However, he became willing to try a new medication after he was simply told, the pink pills made you sick and I want you to try the blue pills. He agreed to try the blue pills.

The more I learn, the more I realize more and more that how I think and feel is different. My thinking is different from a normal person, but it is also very different from the verbal logic nonvisual person with Asperger's. They create word categories instead of picture categories. The one common denominator of all autistic and Asperger thinking is that details are associated into categories to form a concept. Details are assembled into concepts like putting a jigsaw puzzle together. The picture on the puzzle can be seen when only 20 percent of the puzzle is put together, forming a big picture.

Autistic Boy, 9, Hailed a Hero for Taking Wheel After Mom Blacks Out

2008-05-03T23:15:00.000-07:00

An autistic boy was hailed a "superhero" yesterday for avoiding a 70mph crash after his mother blacked out while driving on a busy dual carriageway.

Jonathan Anderson, nine, averted disaster by seizing the wheel after his mother Marion, 34, slumped unconscious on the way to his school.

The youngster, whose disorder can cause high levels of anxiety and confusion, pulled the handbrake on.

The Toyota Avensis veered across three lanes of rush-hour traffic, bumping into the central reservation of the A38 at Plympton, Devon.

But despite being unable to reach the brake pedal, Jonathan refused to panic.

He managed to steer the car back across the carriageway to the hard shoulder before it weaved up a bank and hit a tree, coming to a standstill.

Then he calmly put the hazard lights on and waited for help to arrive.

Yesterday his mother said: "He's my little superhero. The last thing I remember is driving Jonathan to school. I must have passed out, because the next thing I saw was a paramedic fitting a brace around my neck.

"I just couldn't believe it when I was told what had happened and what Jonathan had done."

Doctors believe Miss Anderson, from Plymouth, may have lost consciousness because she suffers from an underactive thyroid which causes breathing problems.

Neither she nor her son was injured. Jonathan has Asperger's Syndrome, a form of autism associated with communication and sensory problems.

He described the ordeal on Monday as "scary". He said: "Mummy passed out so I held the steering wheel, pulled the handbrake and put the hazard lights on.

"The car stopped and the windscreen smashed. It was scary because I've never driven a car before."

Paramedics Pete Holden and Ray MacFadden praised Jonathan's quick thinking.

Mr Holden said: "We were incredibly impressed with Jonathan's brave actions to save his mother's life.

"It must have been a very frightening experience but his level head and quick thinking prevented a much more serious accident that could have been potentially life-threatening for both mother and son, as well as other road users."

Jonathan is to receive a bravery certificate from the South Western Ambulance Service.

Autism: A story of hope

2008-04-29T16:31:00.000-07:00

Therapy helps boy reclaim childhood

By ROBERT M. COOK

Six-year-old Ryan Nichols loves to talk about his favorite toys, which recently were scattered throughout his family's living room.

He says he's especially fond of his NASCAR toys and Leapster gamepad, which he plays with in his bedroom.

Ryan also has been to Walt Disney World twice and often wears a Mickey Mouse sweat shirt he got there.

His parents, Frank and Dione Nichols, hinge on every word Ryan speaks to them. It's something they waited years to hear.

Their son, who has autism, now is reclaiming his childhood thanks to ongoing speech and occupational therapy, his parents said.

"When you start, there's so much to work on," Dione said. "We've made great progress, but the problem is the expectations keep going up each year."

Ryan attends a full-day kindergarten program. He also receives one hour each of speech and occupational therapy once weekly after school at Easter Seals New Hampshire in Dover.

Ryan has made new friends in his class and is just learning how to ask appropriate questions so he can converse with his classmates, his mother said.

For example, Ryan is learning to ask, "Any questions?" after making a show and tell presentation, his father said.

There are so many things Ryan does now that he couldn't when he was 3 and 4 years old, Dione said.

"We wondered if he would ever ask for a present" at Christmastime, she said.

This Christmas, Ryan asked for a Lego airplane. He also opened his presents in less than an hour on Christmas morning, his father said.

Like many children diagnosed with autism spectrum disorder, Ryan is sensitive to various sounds, such as the microwave or creaking on the stairs.

Dione said there was a time when Ryan couldn't stand to listen to the car radio.

Frank said he also had trouble if they were in a store and the public address system came on.

Watching videos like Disney's "Little Einsteins," and "Thomas the Tank Engine" helped Ryan break down different sounds and music, Dione said.

"This was the first year we could play Christmas music in the house," Frank said.

Dione said Ryan "was a very, very happy baby, pretty easy going," but she started to notice signs that he was not developing properly early on.

For example, when he was a year old, he didn't wave goodbye or point at objects like other children do at that age, she said.

At 2 1/2, Ryan would say some words, "but I would never hear those words again,"she said.

At 3 1/2 years old, Ryan talked more, but mostly would repeat phrases he heard while watching videos, his mother said.

If she asked him "Do you want waffles or pancakes?" Ryan would reply, "Waffles or pancakes" and not answer her question, she said.

A former preschool teacher with some knowledge of childhood development, she found herself doing more research online and in books. Little by little, she came to realize her son showed signs of autism spectrum disorder - a diagnosis later confirmed by the Seacoast Child Development Center at the University of New Hampshire in Durham, where Ryan was evaluated.

Dione said it's taken a lot of hard work and patience to help their son reach this stage of his development.

One of the most difficult aspects was figuring the right type of therapy to help their son learn to communicate and engage the world around him, she said.

Her son attended a preschool program offered by the local school district, but his mother said she wasn't satisfied with the services they provided.

At age 4, Ryan attended the Dover Childrens Center kindergarten program for a year and received more than two hours of speech and occupational therapy weekly.

"Ryan was very fortunate to have a wonderful kindergarten teacher," his mother said. "They focused more on pure childhood development."

They helped Ryan learn to play with other children and made sure Ryan always was involved with class activities, she said.

"At that time, Ryan would not do an activity for more than a minute or two," she said.

The teachers made several possible activities available at once, with roughly six things for him to do at any given time. They would go from one thing to the other as needed to guide Ryan, his mother said.

At home, she and her husband continuously worked with their son to reinforce the skills and learning techniques used at school, she said.
Dione learned the best way to teach Ryan how to do a simple task like drawing a picture was to break it down. Instead of asking him to draw a face, she would practice helping him draw the eyes. Little by little, Ryan improved his speech and play skills, she said.

Frank said they've also learned there is no hourglass that governs how much their son can learn.

Many doctors and childhood experts told the couple their son had to master certain skills by age 6 or his learning window would close.

But Ryan's speech and occupational therapists told the couple the brain is malleable, and people never lose the ability to learn, even if they have autism, Frank said.

"You got to crack the code" when it comes to helping children with autism learn, Dione said. She compared the process of trial and error to what Thomas Edison said about creating the light bulb. Edison used to say he found 10,000 ways not to make a light bulb before he discovered the right way, Dione said.

But the couple says they by no means believe they've found the best or only way to help other families who have children with autism. If there's one common thread other people can take from the Nichols' situation, it would be hard work and never giving up, no matter what, they said.

"We had plenty of bleak days," Frank added.

Now Ryan's father said he feels more optimistic his son will have a good life.

"It gives me hope for a better tomorrow," Frank said.

As Ryan heads toward first grade, his parents say there are still many challenges that remain to help their son build his social and communication skills. But they add that they also feel they'll meet those challenges based on what they've experienced so far.

"I'm proud of Ryan because he's worked so hard," his mother said.

Student spreads word about autism

2008-04-24T00:19:00.000-07:00

SOUTH HADLEY - A 16-year-old South Deerfield teen-ager who is a student at Pioneer Valley Performing Arts High School is out to educate the public about autism spectrum disorders as part of April being National Autism Awareness Month.

The youth, Daniel E. Sandberg, has Asperger's syndrome, which is on the autism spectrum. Autism is a complex developmental disability that typically appears during the first three years of life and affects a person's ability to communicate and interact with others, according to information posted on the Web site of the Autism Society of America.

Asperger's syndrome is characterized by limited interests or an usual preoccupation with a particular subject to the exclusion of other activities, according to information on the Web site of the National Institute of Neurological Disorders and Stroke.

Asperger's syndrome may also involve repetitive routines or rituals, peculiarities in speech and language, socially and emotionally inappropriate behavior, the inability to interact successfully with peers, problems with nonverbal communication, and clumsy and uncoordinated movements.

Sandberg is raising awareness about autism through posters to which he added interlocking puzzle pieces that state simple facts about the disorder.

Among them are, "People with autism spectrum disorders accept others without judgmentã and, "Many people with autism spectrum disorders are very anxious."

The poster also has a photograph of Albert Einstein, who is suspected to have had Asperger's syndrome.

Sandberg said he is particularly pleased that students have reacted positively to posters.

"It made me feel so good," he said during a recent interview at the school. "I'm trying to educate people about autism ... I want to be a good advocate for teaching more people about autism."

Sandberg, who was diagnosed at age 7, attends regular classes but has special help outside the classroom.

One way his disorder manifests itself is that he has difficulty in crowded, noisy situations, Sandberg said.

However, Joann L. Odato-Staeb, a consultant who works with Sandberg, said a positive aspect of being unusually sensitive to sound is that Sandberg is able to hear things musically that other people cannot sense.

Sandberg, who plays guitar and writes songs, said he would like to become a sound engineer.

The sophomore, who plans to do a presentation at school on autism spectrum disorders, said, "There is a lot more people could be learning ... Education is a big thing.

"I'm never shy about letting people know what I have," he added.

Mother, volunteer aims to conquer autism through communication and connections

2008-04-20T22:28:00.000-07:00

OCALA - The annual Autism Walk is scheduled this morning at Jervey Gantt Park.

Close to 100 parents, educators and children are expected to participate in the one-mile walk to help raise awareness about autism. Also scheduled to attend is one woman, a single mother of two boys with severe autism, who's on a mission.

"I want to teach [my sons] to live on their own," said 50-year-old Sylvia Miller. "I don't touch the autism. I don't care about it. I'm teaching them how to live with it. I'm teaching them how to live independently, and to understand why others do what they do."

Miller's mission has reached beyond the boundaries of her modest home in Ocala and the colorful Autism Awareness magnet ribbon in the back of her car.

Her mission has taken her from a less-than-stellar marriage, homelessness and poverty, to a home she shares with her 16-year-old daughter, Naddie, and her sons, 14-year-old Kibby and 12-year-old Shukiy.

"I was born to be Cinderella," she says.

Except that her life is a Cinderella story in reverse. There's no Prince Charming; there's no palace and no glass slippers.

Instead, she's a single mother of three, managing everything on her own, with little support from her own family.

"My mother thought I'd never amount to anything, and look at me now," she said proudly. "I have a home. I have a car .Ê.Ê. I don't want anything and I get taken care of. All I have to do is do what I do and I love it."

Miller came to Marion County from Queens, N.Y., seven years ago when her former husband suddenly had visions that they needed to move to Florida.

The family of five lived in a motel room for a week until Interfaith Emergency Services helped them find a place to live.

Within a few months, Miller formed the Parents Helping Parents support group at Maplewood Elementary School, to connect parents of children with autism and other disabilities. She began working and helping at the Center for Autism and Related Disorder, or CARD, a few hours a week.

She attended the advocacy training provided by the Florida Developmental Disabilities Council and turned her support group into a nonprofit organization, Parents Helping Parents of Florida.

Meanwhile, she worked various jobs and tried to get her husband to get a job, to no avail.

The couple finally separated four years ago, when Miller asked her husband to leave. "He said nothing. He got up, packed his bags and left the day before Naddie turned 13," Miller said.

She eventually got full custody of her children, with no visitation, and finalized her divorce last year.

Despite all the ups and down, Miller kept her focus on raising her children. She got involved with CARD and learned how to make her home visually friendly for her sons.

She used CARD's resources and mounted visual clues - small laminated drawings - at every corner of the house to tell the boys what to do when, where and how.

She created "social stories," which she reads to the boys before going to the doctor or to grocery shopping, so they'll be prepared.

"My boys can do anything," she said. "I'm not changing who they are. They're really pure. You have more difficulty controlling a typical teen. But with these guys they're a clean slate."

So when one neatly laid all his favorite things and colorful beads on his new bed and decided to sleep on the floor, Miller got him a sleeping bag.

She waited patiently for four years to take one of them off a diet that included waffles and noodles only.

"Some parents grieve the perfect kid," Miller said. But Miller doesn't, because she knows what it's like to lose a child. Her first-born, from her first marriage, was found strangled at the side of the road 10 years ago.

"My children are part of God's army. My kids are functioning. My kids are thriving," she said.

Miller works full-time for CARD from her home office. One of the walls is covered with certificates of achievement and other certifications she's earned along the way.

Her sons' desks sit at the side of her office, decorated exactly as they are at their school, New Horizon Academy.

She's better known here as the "CARD lady" in Marion County.

"Sylvia has been a real guiding light for us to move Billy to independence," said Barbara Leonard, grandmother of Billy, who has autism. Leonard is active in autism-related activities in the county and said she's known Miller for a while.

Miller has her hands in almost all autism-related activities in the county. "I join anything you can to network and make connections," she said. She planned the autism-awareness activities this month, which is the national autism awareness month.

And she's working on starting a summer camp program, where 30 children with autism and other disabilities are placed in three regular summer camps. She's gotten a grant to hire a certified teacher and six certified paraprofessionals, and she's working to gather volunteers from the University of Florida, so that every child will be accompanied by an adult.

"It's just for one week, so we can collect data," Miller said. "The ultimate goal for kids is to go to every camp in Marion County," and socialize with other children.

With close to 400 students with autism spectrum disorders attending Marion County Schools, advocates like Miller see it necessary to have the children integrated with society, because they will one day grow up and get a job.

There's no doubt in Miller's mind that her sons will one day be able to live independently at the house they all live in now and earn a living.

Her goal is to be able to see them live on their own within 10 years, when Kibby and Shukiy are out of school. "My freedom is my driving force," she said with a laugh.

In the meantime, Miller has been focusing on her sons' strengths, so one day they can get a job. "I see Kibby as a mechanic and Shukiy can work at anybody's kitchen. He loves to cook," she said.

"Don't think they'll never amount to anything. There's always a job somewhere they can do. Invest in them. They're people. They're whatever you make them out to be. Just like my other kid," Miller said, referring to her 16 year-old daughter, who's a junior at West Port High School.

Miller, who gets calls from a handful of parents in need of help each week, gives tours of her house. Her house is a model home for a family who has a child with autism, and yet it looks nothing out of the ordinary.

"When parents come to me crying and I can send them out with hope, a mission and purpose ... If I can do that every day, it makes my day," she said.

It's a mission from God, she says.

"We're just not here to live. You have to take what you've got and do something with it and make a difference in others' lives. It can't just be about me with all the people on this planet."

Writer's Showcase: Samuel Traineer

2008-04-04T06:31:00.000-07:00

My name is Samuel and I am 14 and in the ninth grade but home schooled. My mom thought I would learn a lot if I had to help other people. So she told me I had to come up with a project to help a needy group of people. The assignment was to help improve the lives of needy people. I have decided to help kids with autism because I have Asperger's syndrome.

I know how important a service animal can be, I have a service cat named “Hub”. He is actually my second service cat. My first one, Faith-Elizabeth, died about four years ago. She helped distract me when I got angry, she played with me, she helped me work out what I was going to say to my mom and other people. Now I have Hub and he does those things. Faith and Hub made me finally belong to my family. We had something in common, we all loved Hub and Faith.

That's why I have decided to start a service cat training program for kids with autism, kids like me. I'm not a parent of an autistic kid, I am an autistic kid. We are alone and we live in a world where no one understands us. I don't know how you feel but I know what my world looks like. Everyday I struggle to make sense of what other people say to me. I have watched my mom cry before when she gets too frustrated because she thinks I don't understand. I get upset then because I don't know why she cries. I wonder what I did wrong. But then she grabs Hub and hands him to me and she stops crying and I calm down. Hub is something we share. He helps me but he helps us be a family also. That's why I have to train other cats for kids. Every kid like me deserves to belong. You can visit my website at www.freewebs.com/tenerekingdom. There are instructions there about how you can help me with my project.

Writer's Showcase: Jessica Brady

2008-04-04T06:23:00.000-07:00

My name is Jessica, I am 25 years old. I have autism.

I attend college and have a 3.5 G.P.A. as well as being on the National Dean's List and Phi Theta Kappa Honor Society. I bowl for the Special Olympics as well. I am also married. Even though I have achieved these things, and it may sound to you that I am normal, I'm not. I struggle to cook, clean, take care of myself. I don't talk very much, I rock, I spin, and I flap. Even though I struggle, I don't let it stop me. I depend on my uncle and aunt to help me everyday.

My husband has been through a lot for me and with me. I never met a person who was willing to love me, be with me, and be my best friend despite my disability. My typical day depends so much on others: when I wake up my uncle helps me to eat, dress, and drive to our errands. I stay with him during the day because I am unable to work. (Even though I attend college, work is too much for me to handle with my many sensory issues.)

Once evening comes, my husband comes home. He cooks, helps me shower, and the day starts over again the next morning. I know it puts a lot of stress on my family because of my autism, I don't have the words to express to them in a voice and so I write, type, and point to them to show them how much they mean to me. I wrote a poem on what it is to be in a world of my own:

I live in a world all of my own.
But I am not lonely.
I may not smile, but I'm happy.
I may not cry, but at times I'm sad.
I might have tantrums, but I don't know why I can't control them.
I like certain foods, textures, clothes, sounds, and temperatures, but I like to try new things.
I may not say much at times, but I'm always thinking.
I like rules, boundaries, routines, they help me to stay focused, even when brain isn't.
I may not look at you because at times I can't get my eyes to make contact, but I'm listening to every word.
I may walk away at times, but I'm not being rude, I just need time to regroup myself.
I don't like a lot of lights, people, noises, or too much stimulation, but I like to go out and to new places.
I am autism and I live in a world of my own.
I am autistic but all I need is love.
One day they will find a cure, one day there might be more help, till then I live in a world of my own, a place where I'm free to be me.

The poem displays what it feels like to have autism. I may never be normal, but I never let it stop me. I hope one day that there will be help for children as well as adults. America should remember our autistic children of today turn into autistic adults of tomorrow.

Writer's Showcase: Matthew Ehrenhaft

2008-04-04T06:18:00.000-07:00

Matthew is fifteen years old and a freshman in North Port High School in Florida. He was diagnosed with Asperger's Syndrome at the age of five. He is in mainstream classes and recently started writing poetry as an outlet.

Autism

If at first you do not succeed,
Try, try again to get to the lead
But sometimes in life it's hard to succeed,
Especially with autism, a problem indeed.

Let's start the story
At the beginning of the clock
It's almost as though
My brain has a lock.

It's like living on the edge
When no one is there,
Deaf, beaten, and vision impaired.
It's hard to deal with autism, it's true
But others like me, they deal with it too

Just because we're different in the way we see
And the way we see is differently
That we can still live a life that's very happy
Or live a life of eternal misery.

Our life is like a coaster, up and down,
Either too high or too low, no middle ground
When you try to find peace,
It can never be found
Either way, destruction bound.

It runs in vibrato, which is fast and slow
Like being drunk as some people know
A time bomb at times, getting ready to blow
Or a freezing river that does not flow.

If autism were normal, personalities might glow
Sadly our problems are major, they will never go
Some are moody, some get mad,
Some stay happy, some stay sad.

Itching and nervous, caught in this curse
Only intensify the pain to worse
However the brightest in the bunch
Actually have something like this
For people to understand, that is my wish

Some are so accurate, they will never miss
Others just stare, a boo and a hiss
For they don't know the curse we endure
When they do this, we suffer more

We know we're different, they know we're here
I have feelings, and they will appear
Even though they may seem different, or even weird
Don't laugh at our autism, and please be sincere.

There's one more thing I have to say,
There are more of us born each day.
People should notice who we are, today
And look at us in a different way

Maybe one day we'll all be free
But we're still unique, as you can see
One day autism will have a key
To unlock and complete this mystery.

Autistic poet gives rare glimpse into mystery illness

2008-03-29T05:53:00.000-07:00

(CNN) -- Tito Mukhopadhyay shuffles to the front door of his home in Austin, Texas. He's coming home from school, something that would have been unthinkable just a few years ago.

His mother, 45-year-old Soma Mukhopadhyay, is considered a pioneer in a breakthrough treatment for some autistic children who face the stigma of being considered "mentally retarded."

That was a label Soma never accepted for 19-year-old Tito. And after hearing Tito's story, you'll never look at an autistic child the same way.

"How was your day?" Soma asks.

Before Tito can answer, he obsessively moves around the house, placing the TV remote in its proper place, arranging the salt and pepper shakers just so. Then he sits down in front of his specially designed keyboard to type his response.

"It was like a floating kangaroo that kept itself invisible," Tito answers.

Tito's cryptic reply is part of his medical condition. But his distinctive way of speaking is also a gift that has made him famous in a misunderstood community. Watch Tito interact with his mother »

Though Tito is virtually mute, that changes when he picks up a pencil to write, or begins tapping at his keyboard.

He is a poet, and the author of several books and essays in which he eloquently describes what it's like to be autistic.

In his writings, he explains why he doesn't make eye contact, what it is like to be obsessed with a ceiling fan, and how his brain has trouble processing sound, touch and sight all at once.

Experts confirm Tito's observations of autism. One doctor described it as the way the brain fails. None can agree on its exact cause, but most believe there is a genetic predisposition to the condition, with significant environmental triggers involved.

The developmental disorder affects the way the brain works and affects the way the child interacts with society.

Some doctors and parents see a link between childhood vaccines, others suspect pesticides or drugs taken during pregnancy. The theories are endless and most experts agree there is no single cause.

Whatever autism is, its symptoms range from a mild form to rendering individuals dependent on others for life.

Many people with autism are able to take in information very well, but the wiring in the brain simply won't allow the information to be processed in the form of organized thought and language.

Tito has given experts some rare insight into what that feels like. His poetry includes stanzas like this:

"I am he.

And I am me.

I am he behind that mirror

I am me watching the he."

One of his favorite books is Plato's "Republic."

The world may have never known about Tito's gift except for the efforts of his mother, Soma, who is from India.

Doctors there told Soma that Tito was mentally retarded and beyond hope. She gave up her career in chemistry, determined to teach him.

Eventually, an organization in the United States brought Soma and Tito, then 10 years old, to the United States to study him because he defied the stereotype of an autistic child.

Soma's method of teaching Tito is called the Rapid Prompting Method. I watched her work with other children at the HALO -- Helping Autism through Learning and Outreach -- center in Austin, Texas, where she teaches while Tito attends school.

The therapy starts by asking the children to point at words on pieces of paper. Once they've mastered that, they use the stencil.

If their motor skills develop well enough, the children will type on a specially designed keyboard.

Her technique seems to be working for the children who attend therapy at HALO. There is a yearlong waiting list for four-day therapy sessions. It can take years to see progress.

Rapid Prompting has not been tested in long-term scientific studies, and Soma is not without her critics. Some criticize her methods as harsh and unproven.

During her sessions, Soma never says "good job," never rewards a child with a high-five or a treat, which is a common reward in other therapeutic techniques.

Soma is unapologetic.

"I don't see the child as autistic. I don't see the label at all," Soma says, speaking quickly in her musical Indian accent.

"I see the child as a person. And just as I would talk to any person, I would talk to a child, because the world is not going to talk to them in a very slow way."

Dr. Michael Merzenich was one of the first experts to pay attention to Soma's technique. He's a neuroscientist at the University of California, and he believes Soma's rapid prompting works.

He says there is no doubt the children are using their minds to create their own words and express their own ideas. Unlike facilitated learning techniques that have been discredited, Soma does not guide the children's hands.

"Imagine what it would be like," he says, "to be able to understand everything that's said to you -- to think and to be unable to communicate your own thoughts and ideas."

Merzenich does not believe Rapid Prompting works for all autistic children, but has no doubt it can help thousands.

I watch several young children in their therapy sessions on this day in Austin. Some struggle horribly. The session makes the children appear stressed, but they continually make small breakthroughs and answer questions correctly.

Soma conducts about 10 therapy sessions a day.

"You must be exhausted," I say to her.

"I can't be," she answers curtly but with a smile. "I have to go home now and teach Tito."

At their home, I ask Tito if he is happier now that he can communicate. He writes out a long response on a piece of paper on a clipboard.

"I can't say whether I am happy or not, because happiness is a state of my mind. So sometimes I think I'm happy. Other times it is hollowness."

It's probably a true statement for most of us at some point in our lives. Soma smiles at the response and doesn't miss a beat.

"Keep writing," she says to Tito. "Keep going."

I am going to post more on Tito's writings in my other blog Autistis Savant.For me he has a savant skill in the Art of Writing.Tito has his own website http://halo-soma.org and has published a book entitled "The Mind Tree: A Miraculous Child Breaks the Silence of Autism"Those interested to read more about him can go to this website.

BOOK NOTES: ‘Look Me in the Eye’ goes inside autism

2008-02-24T02:04:00.000-08:00

How could something as common as making eye contact be so difficult? How can people who are so brilliant with solving complex calculations, for example, be so limited in the basic everyday skills of life?

It seems ironic that the very people who suffer severely from being able to connect normally with other people may be the very ones who offer society answers to the riddle of Asperger’s Syndrome.

John Elder Robison has written a poignant, insightful, brilliant memoir titled “Look Me in the Eye: My Life with Asperger’s” (Crown, 2007). It is must reading. As the numbers of those on the autism spectrum rise dramatically, it is imperative that society pay attention to these unique people. We cannot afford to lose what they can offer.

Autism is one of the most confounding mental conditions. Little is known — yet — on what triggers the disorder. Until the 1940s, autism was not even in the medical lexicon.

The symptoms of autism, however, are difficult to ignore. The most overt symptoms are a difficulty — often severe — with social interactions, problems with verbal and nonverbal communication, and repetitive actions or obsessive fixations.These behaviors can range from mild to disabling along what researchers now understand and call autistic spectrum disorder. Asperger’s Syndrome is on the high end.

Long before the behaviors had a name, those with what we now call Asperger’s were noted as being out of the ordinary. Called odd or eccentric or quirky, some found acceptance due to one other prevalent attribute — their “genius.”

John Elder Robison speaks eloquently to both his brilliance and his heartbreaking disabilities. That he is able and willing to do so is in itself a story.

Many recall the best-selling memoir by Augusten Burroughs titled “Running with Scissors” (St. Martin’s Press, 2002). He captured the public’s attention with his tale of growing up with an insane mother, an alcoholic father, being “given” to his mother’s psychiatrist and being raised in increasingly bizarre circumstances by truly dysfunctional characters.

Yet what seemed to intrigue his readers the most — based on many letters and the predominant comments he received at book signings — was the relatively brief mention in the book about his older brother who lived with Asperger’s.

In the touching foreword to “Look Me in the Eye,” Augusten Burroughs shares how he convinced his adored older brother to tell his own story.

“ ‘You should write a memoir. About Asperger’s, about growing up not knowing what you had. A memoir where you tell all your stories. Tell everything.’

“About five minutes later, he e-mailed me a sample chapter. ‘Like this?’ was the subject line of the e-mail.

“ ‘Yes. Like that.’ “

Mr. Burroughs openly adores his “brilliant brother.” Readers will also come to recognize that John Elder Robison is truly a genius.

Those of a certain age remember the rock band Kiss and the smoking guitars and other wild special effects that took rock ‘n’ roll into new dimensions of “arena rock.”

Mr. Robison made those guitars smoke and built the sound systems that took rock high tech.

Remember Super Simon, one of the first electronic games? In the 1970s, Mr. Robison was on the research and design teams at Milton Bradley that transformed kids’ toys.

For the past 20 years, J.E. Robison Service in Amherst, Mass., has been repairing and restoring high-end automobiles (very high end) for grateful customers who come from all over the world to have John Elder Robison work his magic.

All this is self-taught. Actually, everything Mr. Robison has done in his life has been self- taught. Even learning — in his 40s — to act “normally.”
It is hard to say what aspect of this book is most fascinating — the descriptions of what Mr. Robison calls “Aspergian” behaviors or his savant abilities..

What he makes clear is that Asperger’s and savantism are linked. He has come to appreciate that, even without a high school diploma, “the knowledge I have is genuine.” He also says he has come to understand that the skills he has to design, engineer, build (anything!), “are rare.”

He writes, “There are plenty of people in the world whose lives are governed by rote and routine. Such people will never be happy dealing with me, because I don’t conform. Luckily, the world is also full of people who care about results, and those people are usually very happy with me, because my Asperger’s compels me to be the ultimate expert in whatever field of interest I choose. And with substantial knowledge, I can obtain good results.”

Mr. Robison’s story emphasizes two compelling points. The first is that Asperger’s does not need to be “fixed.”

“I’m not defective. In fact, in recent years I have started to see that we Aspergians are better than normal!”

Mr. Robison continues, “And now it seems as though scientists agree: Recent articles suggest that a touch of Asperger’s is an essential part of much creative genius.”

We think with awe about geniuses in literature or life: the calculating abilities of a “Rain Man,” the intuitive thinking of a Sherlock Holmes, the tenacity and analytical skills of a Jane Goodall.

But we also disparage the lack of social graces in these geniuses. These are people who did not play nicely in the sandbox.

Neither did John Elder Robison. In another poignantly funny account, he relates his own early childhood attempts where he failed miserably at playing nicely in a sandbox — or anywhere.

However — and this is his second important point — it was not because he didn’t want to play nicely with other kids.

He sadly remembers teachers who pointed to him, alone, with the comment, “He doesn’t want to play with others.”

He asserts, “They were dead wrong.”

Mr. Robison makes clear in his book and in interviews that “the bitterest disappointment of my life was the inability to make friends.”

It speaks to the nature of this man that he is happily married. His chapter on being a husband and father are touchingly sweet and very funny. Moreover, he has — now — a wide circle of good friends with whom he shares his interests and theirs.

He says that he has learned the difference between “eccentric and weird” and he strives to be “a nice eccentric.” He accepts that he will never be “normal,” nor does he want to be.
“Asperger’s is not a disease. It’s a way of being. There is no cure, nor is there a need for one.”

But, there is a need to expand on what is considered “normal.” Society needs to extend the range of what is considered accepted behavior.

The title of the book is a particular sticking point for Mr. Robison and others on the autistic spectrum. His explanation of why he does not look people in the eye is enlightening: He isn’t shutting the world out, he is intensely taking it all in. How much easier his life would have been if “normal” people understood just this simple difference.

As more is known about autism and Asperger’s Syndrome — much from Aspergians themselves — the better it will be for them and for those around them.

For those who want to read more about it, in a final chapter Mr. Robison provides a host of sources for information about Asperger’s and autism including support groups, books and other memoirs.

Mr. Robison’s Web site is amazing — www.johnrobison.com. He posts book information, photographs and his blogs. Most intriguing is an hour-long video of his first public appearance to launch the book. Mr. Robison reads passages, answers questions from the audience, and interacts with this brother who moderates the event.

He tells of having to audition to read this book for the Crown audio edition — he was accepted — and how this medium provided another breakthrough for Aspergians.

“Moms of autistics and Aspergians called and wrote (to say) my voice is distinctive” with tones and nuances that are recognizable as Asperger’s.

He says had he known the power of the spoken word, he would have insisted the audio edition not be abridged.

Now that Mr. Robison finally has a diagnosis and his own appreciation for being a “proud Aspergian,” he is very open to sharing with as many people as he can reach in order to save others with Asperger’s and their families the pain he experienced.

Joan Ruddiman, Ed.D., is the coordinator/ facilitator of the gifted and talented PRISM program at the Thomas R. Grover Middle School in the West Windsor-Plainsboro School District.

Autism -- a world into oneself

2007-12-17T02:20:00.000-08:00

Numbers continue to rise

Jake Hayes was born seemingly brilliant and with a passion for prehistoric and mystical animals. By the time he was 3½ years old, he could tell you the names of every dinosaur and wing span of every pterosaur. But his genius in some areas are a trade off to his struggle in others.

Gabe Reynolds, 15, lost speech at 18 months for three years and still has a difficult time stringing words together for a complete sentence. But he reads and surfs the Internet for games and pictures he likes. His mother knows there's much more going on than people give him credit for.

Jake's on one end of the umbrella of pervasive developmental disorders called autism spectrum disorders. Gabe is on the other.

Gifted but challenged in different areas, different ways and to different degrees, even clinicians are continually amazed by the uniqueness of children on the spectrum.

"I think it's one of the most underestimated populations in the world," said Shreveport occupational therapist Suzanne McMillian, who treats children with ASDs at The Center for Therapy. "Some of the things kids write to me or draw for me is incredible. Just because we do not have an IQ test for them does not mean they do not have above-average intelligence."

Autism has been thrust into the limelight in the past year with celebrity stories, books, new studies and new universal guidelines for screening.

The American Academy of Pediatrics first called for universal screenings in 2006. A new report that appears in the November issue of Pediatrics, spells out in more detail how to evaluate patients with autism.

"I think it's great," McMillian said. "The earlier you can get them into intervention, the better."

The reason for all the attention is apparent.

In 1999, the autism incidence rate in the United States was generally cited at one case per 2,000 live births. Today, the Centers for Disease Control and Prevention estimates ASDs affect as many as one in every 150 children. The number for boys is four times greater than girls.

In Louisiana, the number of children in the school system identified with ASDs has more than doubled from 1999 to 2005.

What caused the increase?

Clinicians have felt the increase, too.

"We've seen a gradual increase in the last four years or so," said David Irwin, Ph.D., who overseas the Children's Center, a service of the LSU Health Sciences Center School of Allied Health Professionals.

The Children's Center does developmental assessments for families in a 33-parish area.

"We're getting more and more referrals and more diagnosed with ASDs," Irwin said. "We probably have about three to four children each month where there's a concern."

Some wonder if the rising numbers simply reflect broader diagnostic criteria and better identification.

Irwin thinks that's part of it.

"We think there is more awareness of what the symptoms are and what can be done to help," he said. "It's such a wide spectrum that several years ago some of these kids may have just been classified as different."

Others believe increased awareness alone or another theory, genetics, could never justify the entire increase of autism numbers.

Vicky Roy, of Baton Rouge, is a speech-language pathologist, who is also a certified consultant for an ASD treatment program, relationship development intervention.

"I think we just don't know yet," Roy said. "My personal opinion is it's impossible to have a genetic epidemic and the increase cannot simply be explained away by greater awareness. I believe there are some environmental factors that are also playing a role in the increase."

Scientists haven't stopped looking.

The CDC's Centers for Autism and Developmental Disabilities Surveillance and Epidemiology launched an initiative in 2006 to gain a better understanding of the possible risk factors for and causes of autism.

Some of the factors being studied include: the genetic contribution, certain medical conditions during or after pregnancy, drugs taken or used during pregnancy, a body's abnormal response to infection, hormones and select mercury exposure, including from vaccines.

Wide range of autism

Jake Hayes' mother, Colleen LaBorde, admits she considered autism a very narrow disorder. She never imagined her bright 4-year-old, had a developmental disorder.

"When he was very young, he just seemed brilliant," said LaBorde of her son, who has Asperger's syndrome. "It wasn't until kindergarten that we started noticing anti-social behavior."

It took almost a year of behavior problems before an occupational therapist with Caddo Parish schools was called in and suggested he might have a form of autism.

"She explained there was wide range of autism spectrum disorders and that Jake was probably very far on the high functioning end," LaBorde said.

Frustration changed to hope with the diagnosis. One of the most positive changes for LaBorde was the family's first Individualized Education Plan. The IEP is tasked by the nation's special education law — Individuals with Disabilities Education Act — to guarantee a parent, no matter what the disability, their child will receive an education. It's a plan devised with parents, school and support staff for each child who qualifies.

Those resources can mean anything from extra equipment they may need to extra time for tests to occupational or speech therapy.

So far, LaBorde is thrilled with Riverside Elementary School, the teachers and the resources her IEP has provided her son. But she wonders what would have happened if someone hadn't recognized Jake's disorder, or his school didn't have a staff trained to understand her son.

"Too often I hear other parents struggling to get what they need, and something needs to change," LaBorde said.

The state's Education Department is struggling to keep up. Since the late 1990s, the state has begun training more people through professional development to teach autistic children.

"We encourage even regular education teachers to attend," said Susan Batson, acting director of the Division of Education Improvement and Assistance. "It's always a challenge when you have more children with disabilities and unprepared personnel to work with them. That is why professional development efforts are so critical."

Also critical is early intervention.

"Every child can make a great deal of progress if they are properly diagnosed," Irwin said.

Early diagnosis benefits the parent's too.

"The parent is more understanding that the child will act different to the world," Irwin said. "We don't want to punish a child because they are different, but utilize that to build a relationship with the child."

After the diagnosis

Most parents of ASD children seek and are eligible to receive through insurance and the public school system a number of therapies, including speech therapy, sensory integration, physical therapy and occupational therapy.

For many parents this is not enough and they seek out other interventions.

One of the most widely accepted treatment methods is applied behavior analysis, an intensive one-on-one interaction with a therapist that reinforces desired behavior.

Another is RDI, which gives the parents the primary role as therapists and addresses the more subjective, subtle reasoning abilities of people, such as emotional sharing, flexible thinking, self-awareness and dynamic appraisal of our surroundings.

There are several others.

Actress Jenny McCarthy, who wrote a best-selling memoir about raising an autistic son, shone the light on one of the most controversial methods — a biomedical approach called Defeat Autism Now protocol. The actress also used traditional therapies and is using RDI, she said in her book and subsequent interviews.

The DAN philosophy addresses the underlying causes of the symptoms of autism through biomedical interventions, largely nutritional. The protocol involves using diet, supplements, anti-virals and anti-fungals to rid the body of toxins.

Parents who use DAN are usually also using other behavior and social therapies.

"I knew I had to try something," said Gabe's mother, Alice Reynolds, who in January heads to a second visit in Arkansas to see a DAN doctor for Gabe. "When he was 8, we were in a good place, but now that he's going through puberty, he can't deal with all those emotions."

Reynolds feels her son's frustration and even depression. It was one of McCarthy's television interviews that made her decide that the financial hardship to her family was worth the risk. None of the $600 DAN doctor visits or expense of traveling and cost of special foods and supplements will be covered by insurance.

"When I heard her (McCarthy) and others talking about their children getting recovered, I thought why not my Gabe?" said Reynolds, who has started a message board at Yahoo Groups, LouisianaAutismLink, for local parents interested in sharing ideas.

The Reynolds have just started the regime, but over the past weeks, a transformation has begun.

"He told his father one day, 'I want a litty, bitty hamburger.' It's odd for him to use correct pronouns and declarative statements," said Reynolds, who wishes Shreveport had more to offer for children with this disorder. "The Center for Therapy is great, but that's just the behavior part. There needs to be a medical part to address the complete person. There are no doctors here that can treat autism, they just observe it."

Is full recovery possible? The answer differs from treatment to treatment.

Roy has her opinion.

"If you define cured as looking indistinguishable from their peers, then yes I'd agree," Roy said. "But I don't think totally cured is possible. They will always have a harder time processing information (than a neuro-typical person)."