Saturday, November 14, 2009

Obama and Autism

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.

Monday, September 7, 2009

Autistic boy to get apology from Halifax public transit

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

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

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.”

Tuesday, August 4, 2009

Special ed aide inspires student hikers

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

Monday, March 9, 2009

Harbingers of Autism

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.

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.”

Monday, March 2, 2009

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

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 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."

Friday, February 27, 2009

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

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!

Wednesday, February 25, 2009

Couple Lives With Autism, Comfort of Each Other

Love Bloomed After Socializing Was Learned
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.

Thursday, January 15, 2009

Coping With An Autistic Brother: A Teenager's Take

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

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'

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

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.

Wednesday, January 14, 2009

Teen helps ‘parent' younger, autistic siblings

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."


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.