(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.
Saturday, March 29, 2008
Sunday, February 24, 2008
BOOK NOTES: ‘Look Me in the Eye’ goes inside autism
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.
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.
Monday, December 17, 2007
Autism -- a world into oneself
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)."
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)."
Monday, December 10, 2007
Finding their own way
When Tiffany Monem’s son, Daniel Emmons, was a baby she had to watch the clock to feed him because he didn’t cry when he was hungry.
In fact, he didn’t cry at all.
“You never knew when something was wrong with him,” said Monem, 26, of West Rutland.
When she banged pots and pans out of Emmons’ line of sight and he didn’t react to the noise, Monem thought he could be deaf. Tests showed he was not. A doctor diagnosed him with autism a month before his second birthday. He is now 3 years old.
“Before Daniel, I had no idea what autism was,” said Monem. “We need more training. We need more funding. We need more awareness.”
In 1992, 13 children in Vermont received special education services for autism. Since then diagnoses for the disorder have broadened, and the number of children who receive services has increased dramatically.
According to a preliminary count from December 2006, cited in legislative Act 35, there were 582 children with autism spectrum disorders receiving special education services. National numbers have gone from one in every 10,000 children to one in every 150, according to the Autism Society of America.
One of the difficult aspects of the disorder is sensory overload. Ordinary noises, smells, light and touch can overstimulate individuals with autism, making it especially difficult for children with the disorder to tolerate extremely social settings like schools and grocery stores.
“This is a national issue, the numbers have been going up across the country,” said Clare McFadden the autism specialist in the Vermont Division of Disability and Aging Services. “The growth is outstripping all the systems’ ability to respond.”Act 35, passed by the Legislature in May, was created to address the fact that services have not kept up with the rise in autism diagnoses. The Vermont Agency of Human Services and the Department of Education held forums throughout the state this fall to garner feedback from parents, therapists, special educators, support staff and others involved in the social, educational and psychological development of people under the umbrella of autism spectrum disorders.
There are five pervasive developmental disorders that fall under the ASD umbrella: autistic disorder, Asperger’s disorder, pervasive developmental disorder – not otherwise specified, Rett’s disorder and childhood disintegrative disorder. The legislation specifies the need to provide care for children and adults diagnosed with autism in their homes, schools and communities.
“The state is aware of a lot of the issues in the system,” said McFadden, who has worked with the developmentally disabled for 25 years. “In the beginning of my career there was hardly anyone served (under autism), you just didn’t see them. There is a wide range with how it presents itself in children. (This) makes it hard for school districts, too. Children’s needs are so different. It’s hard to create programs to treat all these kids.”
One mother’s crusade
Parenting for Monem felt more like a job at first. Her son required such intense attention that she felt more like a drill sergeant and teacher than mom. She tried working part time but it was too difficult to juggle schedules for Emmons’ therapy and school along with her daughter’s education on top of regular parenting responsibilities. Two personal care assistants now work in her home with Emmons.
Noise, light and touch overstimulate her son. When he was younger, bath time was so traumatic he would scream and shake when the water touched him. Monem’s neighbor once asked if they should call Social and Rehabilitation Services – the former name for the Department of Children and Families – the state agency that serves abused and neglected children.
Monem dreads grocery shopping with Emmons in tow because strangers give her looks because of his behavior.
“I’ve had people call my son retarded,” she said. “It makes it harder for me because I’m frustrated. Ignorance leads strangers to judge.”
Getting Emmons to eat is also a struggle. His main food these days is pizza. When he eats, you can’t touch his food, him or his fork, said Monem. If his food is tainted he will scream and discontinue eating.
“I’ve seen him go days without eating just because he doesn’t want to,” she said. “There’s only a few selective things that he will eat.”
Since Emmons was diagnosed, Monem and her family have relocated to get access to better care. Monem had to quit her job so that she can be vigilant about her son’s treatment.
“It’s a constant battle with the school, with what I feel he needs and what they feel he needs,” said Monem about the Early Essential Education program at West Rutland School. “He wouldn’t be where he is if I didn’t push.I’ve pushed and pushed, I’m tired of pushing.”
Emmons’ development team is strong now, Monem says, but she played a big part in placing the right people with her child. When he was first diagnosed, early intervention was successful but the progress Emmons was making slowed when he entered the Essential Early Education program.
“I feel like I kind of lost when he went to school,” said Monem. “They’re not doing their jobs and they’re not educated where they need to be. I’m sorry… I don’t want to put my son in the Blue House (Brandon). I want him around.”
Her crusade has paid off though: Early intervention has helped his verbal skills. But Monem admits other aspects of her family’s life have suffered. Her older daughter has a difficult time understanding why her younger brother requires so much attention. It has been tough for the children’s father to embrace his son’s diagnosis, which has also put strain on the parents’ relationship.
“It’s a huge extra stress,” said Monem. “Adam (Emmons) just refuses to accept that Daniel is the way he is, but he is a wonderful father and a wonderful partner.”Another stressor is the cost of Emmons’ care. Though a portion of the extra services are covered by Medicaid and Supplemental Security Income, many therapeutic items are not subsidized because of the lack of awareness and understanding of the vast needs of children under the autism spectrum disorder umbrella, Monem says.
“The financial strain of an autistic child is horrendous,” said Monem. “It should not be my job to hire aides.”
Emmons likes deep pressure. The young boy requests “squeezes” – or hugs, frequently. As part of his therapy Monem is purchasing a leaded vest and blanket, but the expense is not covered under Medicaid.
“I consider myself very lucky because most autistic children don’t show love and affection, Daniel never lost that,” said Monem.
As of late, he is communicating in a less affectionate manner. Emmons has started kicking, scratching and biting his mother. His speech and language pathologist says this is a form of communication. Because he can’t tell her verbally that he’s had a bad day, he communicates those feelings by acting out.
“It’s comforting to know he’s biting me out of love,” said Monem, “but it hurts.”
‘Rutland Town village is raising my daughter’
Society’s overall lack of awareness of autism doesn’t end at the state level, however, it seeps into the medical industry, education system and homes of children diagnosed under the ASD umbrella. A total of 195 people attended the forums hosted by the Department of Education and the Vermont Agency of Human Services in five locations. The most prevalent issues brought up by those who attended, were things like access to timely and accurate diagnosis, adequate training for staff who work with individuals with ASD, the need for a community resource and support center, training for physicians and coordination of services across systems.
“Not all pediatricians and family doctors have enough knowledge to identify the issues,” said McFadden. “I think a lot of times parents bring up concerns over and over and pediatricians might downplay them.”
Parents whose first-born child is afflicted with symptoms of autism don’t have developmental benchmarks, McFadden added.
“This is normal to me because I haven’t had the experience (of raising ‘normal’ kids),” said Lois Miller whose daughter, Heather Holzinger has autism.Miller was planning to put off vaccinating Holzinger, 14, until she was 2 years old. But she decided to have Holzinger immunized at nine months, and at the time the infant developed an extremely high fever. After several failed attempts to insert an IV in the baby’s vein, doctors put one in her skull.
It took some time for Holzinger to recover from the fever and subsequent illness, which made it difficult for Miller to see how her child had changed. In the meantime, Holzinger went from being a bubbly infant to a quiet, apathetic child. At a doctor’s suggestion, she had her tested for autism.
“She was diagnosed at just over 2 years old.” Miller said. “The only thing I heard until she was 6 years old was, ‘ehh.’”
Six months later, Miller enrolled Holzinger into an Essential Early Education program at the Vermont Achievement Center. At 5, Holzinger began attending Rutland Town School where Shelley Pelkey became her full-time paraeducator. An occupational therapist and a speech and language pathologist were also on her development team.
When Holzinger began working with Pelkey at Rutland Town School, she’d scream if someone touched her and she was particularly sensitive about her hair, so brushing it became part of their work together. Now Holzinger is able to tolerate her hair being braided.
Theirs is an unusual relationship in that until last year, Pelkey was Holzinger’s aide throughout her schooling at Rutland Town. The school now changes students’ aides every two years.
“What we’ve come to find through the years is you don’t want total dependency,” said Pati Beaumont, principal of the school. “I think we do strive very hard to listen to the fears of most parents.”
Learning to trust her child’s care to the school’s choice of paraeducator was difficult for Holzinger’s mother. At first, Miller didn’t want Pelkey to work with her daughter and requested a background check. Now, Miller says Pelkey, who has a son with Asperger’s, has been a godsend to her daughter.
“It is a learning – teaching process,” said Pelkey. “We’ve used many forms of communication anything we have available – pictures, sign, spelling. She is so verbal now compared to what she used to be.”
When Holzinger began at the school, if she was greeted by another student she would walk by, not acknowledging the hello. Pelkey taught her to stop, look at the person and reciprocate the greeting. Although her verbal skills and social skills have improved, Miller says her daughter mostly vocalizes needs and wants. She is still working on interactive conversation.
“She just loves people now, she loves being social,” said Pelkey. “It’s been baby steps. … It’s giving her the chance to show you that she understands. Once a skill is achieved you can generalize it across circumstances and situations.”
Although Pelkey does not have a college degree she has attended a number of trainings, workshops and classes on special education and autism spectrum disorders. Miller also continues to educate herself on best practices for educating her daughter. She says when she learns something new, employees of the school have already heard about it or are implementing it.
“Everybody here has always been one step ahead of me,” said Miller, recognizing how fortunate she is. “Rutland Town is a village raising my child.”
Mother of teen fights for progress.
Lisa Wood claims she is not the most popular mom at the schools her son Caleb Meaghan has attended. But if it weren’t for her tenacity, Meaghan may be having a more difficult time blending in as a freshman in high school. Although his integration has been somewhat seamless, the battles Wood has fought with the school’s officials are similar to past struggles.
“They’re discounting me already, and they’re discounting him already,” she said. “Nothing will tick off a mom with a special kid more than that, nothing.”Meaghan is a high-functioning child with autism, which is an often-overlooked diagnosis. Individuals with this form of autism are often labeled as difficult, stubborn or rigid. It takes special teachers and therapists who are willing to spend the time connecting with the child to help them continue to successfully develop.Many of the descriptions Wood uses to describe Meaghan’s behaviors as a child are similar to Emmons’. Once Meaghan was diagnosed, an occupational therapist and speech language pathologist were sent to Wood’s home to work with her son. “I’m more motivated than the average mom,” Wood said. “I took on a lot more at home.”
Wood says about one-fifth of Meaghan’s teachers have taken a real interest in his education. Meaghan didn’t ride the bus until second grade because the noise overwhelmed him. He didn’t talk freely until third grade, said Wood. In the sixth grade Meaghan was beaten up at school, and Wood was so worried he would check out even further that she took immediate action.
“I went right to a school board meeting and screamed and bawled my eyes out,” she said. “Advocating for your child should not be a luxury; it should be something every family can afford.”
Wood’s work schedule is flexible as she runs a farm with her husband and owns a business.
“There’s lots of people that are not as equipped as I and those are the ones I worry about,” she said. “God sent Caleb to me for a purpose. The only way I can help is to put back in for others.”
“There’s going to be so many kids like him out there,” said Wood. “I hope in 40 years I can tell you there are 10,000 kids like him. I wanted Caleb to have a normal life.”
‘If they have to fight, what are we doing?’
Each of these women are pioneers in the fight for better care for children with autism. All three described moments when the struggle became too much to bear; when it seemed like there was no help available for them.
Monem says she won’t wallow in self-pity, that she focuses on the here and now and what is best for her children.
Wood continues to explain to school administrators, parents of her son’s friends and others involved in Meaghan’s life that he does not have the same conceptual understanding of things as other children his age.
Miller relies on her daughter’s journal for basic information about how things are going for her at school.
“Heather can’t tell me how her day went,” said Miller. “We have to be their voice.”As Holzinger transitions from Rutland Town School to seventh grade at West Rutland School, both mom and school have learned from her journey. Early in her education the school would videotape her days so that Miller could observe her schooling schedule.
“The use of technology in the last 10 years has helped significantly in education practices,” said Pam Reed, director of special education in Rutland Central Supervisory Union. “There really isn’t support in Vermont for us. Even beyond money, it’s resources and workshops.”
says parents often go through a grieving process after their children are diagnosed with an autism spectrum disorder.
“I think it’s hard for the professionals to see that in parents,” she said. “If I were to stress one thing, they need to hear and listen to each other, communicate clearly.” As a professional whose career is based upon finding best practices for students with special needs within her supervisory union, Reed says the need for parents to fight saddens her.
“If they feel they have to fight, my God, what are we doing?” she asks.
In fact, he didn’t cry at all.
“You never knew when something was wrong with him,” said Monem, 26, of West Rutland.
When she banged pots and pans out of Emmons’ line of sight and he didn’t react to the noise, Monem thought he could be deaf. Tests showed he was not. A doctor diagnosed him with autism a month before his second birthday. He is now 3 years old.
“Before Daniel, I had no idea what autism was,” said Monem. “We need more training. We need more funding. We need more awareness.”
In 1992, 13 children in Vermont received special education services for autism. Since then diagnoses for the disorder have broadened, and the number of children who receive services has increased dramatically.
According to a preliminary count from December 2006, cited in legislative Act 35, there were 582 children with autism spectrum disorders receiving special education services. National numbers have gone from one in every 10,000 children to one in every 150, according to the Autism Society of America.
One of the difficult aspects of the disorder is sensory overload. Ordinary noises, smells, light and touch can overstimulate individuals with autism, making it especially difficult for children with the disorder to tolerate extremely social settings like schools and grocery stores.
“This is a national issue, the numbers have been going up across the country,” said Clare McFadden the autism specialist in the Vermont Division of Disability and Aging Services. “The growth is outstripping all the systems’ ability to respond.”Act 35, passed by the Legislature in May, was created to address the fact that services have not kept up with the rise in autism diagnoses. The Vermont Agency of Human Services and the Department of Education held forums throughout the state this fall to garner feedback from parents, therapists, special educators, support staff and others involved in the social, educational and psychological development of people under the umbrella of autism spectrum disorders.
There are five pervasive developmental disorders that fall under the ASD umbrella: autistic disorder, Asperger’s disorder, pervasive developmental disorder – not otherwise specified, Rett’s disorder and childhood disintegrative disorder. The legislation specifies the need to provide care for children and adults diagnosed with autism in their homes, schools and communities.
“The state is aware of a lot of the issues in the system,” said McFadden, who has worked with the developmentally disabled for 25 years. “In the beginning of my career there was hardly anyone served (under autism), you just didn’t see them. There is a wide range with how it presents itself in children. (This) makes it hard for school districts, too. Children’s needs are so different. It’s hard to create programs to treat all these kids.”
One mother’s crusade
Parenting for Monem felt more like a job at first. Her son required such intense attention that she felt more like a drill sergeant and teacher than mom. She tried working part time but it was too difficult to juggle schedules for Emmons’ therapy and school along with her daughter’s education on top of regular parenting responsibilities. Two personal care assistants now work in her home with Emmons.
Noise, light and touch overstimulate her son. When he was younger, bath time was so traumatic he would scream and shake when the water touched him. Monem’s neighbor once asked if they should call Social and Rehabilitation Services – the former name for the Department of Children and Families – the state agency that serves abused and neglected children.
Monem dreads grocery shopping with Emmons in tow because strangers give her looks because of his behavior.
“I’ve had people call my son retarded,” she said. “It makes it harder for me because I’m frustrated. Ignorance leads strangers to judge.”
Getting Emmons to eat is also a struggle. His main food these days is pizza. When he eats, you can’t touch his food, him or his fork, said Monem. If his food is tainted he will scream and discontinue eating.
“I’ve seen him go days without eating just because he doesn’t want to,” she said. “There’s only a few selective things that he will eat.”
Since Emmons was diagnosed, Monem and her family have relocated to get access to better care. Monem had to quit her job so that she can be vigilant about her son’s treatment.
“It’s a constant battle with the school, with what I feel he needs and what they feel he needs,” said Monem about the Early Essential Education program at West Rutland School. “He wouldn’t be where he is if I didn’t push.I’ve pushed and pushed, I’m tired of pushing.”
Emmons’ development team is strong now, Monem says, but she played a big part in placing the right people with her child. When he was first diagnosed, early intervention was successful but the progress Emmons was making slowed when he entered the Essential Early Education program.
“I feel like I kind of lost when he went to school,” said Monem. “They’re not doing their jobs and they’re not educated where they need to be. I’m sorry… I don’t want to put my son in the Blue House (Brandon). I want him around.”
Her crusade has paid off though: Early intervention has helped his verbal skills. But Monem admits other aspects of her family’s life have suffered. Her older daughter has a difficult time understanding why her younger brother requires so much attention. It has been tough for the children’s father to embrace his son’s diagnosis, which has also put strain on the parents’ relationship.
“It’s a huge extra stress,” said Monem. “Adam (Emmons) just refuses to accept that Daniel is the way he is, but he is a wonderful father and a wonderful partner.”Another stressor is the cost of Emmons’ care. Though a portion of the extra services are covered by Medicaid and Supplemental Security Income, many therapeutic items are not subsidized because of the lack of awareness and understanding of the vast needs of children under the autism spectrum disorder umbrella, Monem says.
“The financial strain of an autistic child is horrendous,” said Monem. “It should not be my job to hire aides.”
Emmons likes deep pressure. The young boy requests “squeezes” – or hugs, frequently. As part of his therapy Monem is purchasing a leaded vest and blanket, but the expense is not covered under Medicaid.
“I consider myself very lucky because most autistic children don’t show love and affection, Daniel never lost that,” said Monem.
As of late, he is communicating in a less affectionate manner. Emmons has started kicking, scratching and biting his mother. His speech and language pathologist says this is a form of communication. Because he can’t tell her verbally that he’s had a bad day, he communicates those feelings by acting out.
“It’s comforting to know he’s biting me out of love,” said Monem, “but it hurts.”
‘Rutland Town village is raising my daughter’
Society’s overall lack of awareness of autism doesn’t end at the state level, however, it seeps into the medical industry, education system and homes of children diagnosed under the ASD umbrella. A total of 195 people attended the forums hosted by the Department of Education and the Vermont Agency of Human Services in five locations. The most prevalent issues brought up by those who attended, were things like access to timely and accurate diagnosis, adequate training for staff who work with individuals with ASD, the need for a community resource and support center, training for physicians and coordination of services across systems.
“Not all pediatricians and family doctors have enough knowledge to identify the issues,” said McFadden. “I think a lot of times parents bring up concerns over and over and pediatricians might downplay them.”
Parents whose first-born child is afflicted with symptoms of autism don’t have developmental benchmarks, McFadden added.
“This is normal to me because I haven’t had the experience (of raising ‘normal’ kids),” said Lois Miller whose daughter, Heather Holzinger has autism.Miller was planning to put off vaccinating Holzinger, 14, until she was 2 years old. But she decided to have Holzinger immunized at nine months, and at the time the infant developed an extremely high fever. After several failed attempts to insert an IV in the baby’s vein, doctors put one in her skull.
It took some time for Holzinger to recover from the fever and subsequent illness, which made it difficult for Miller to see how her child had changed. In the meantime, Holzinger went from being a bubbly infant to a quiet, apathetic child. At a doctor’s suggestion, she had her tested for autism.
“She was diagnosed at just over 2 years old.” Miller said. “The only thing I heard until she was 6 years old was, ‘ehh.’”
Six months later, Miller enrolled Holzinger into an Essential Early Education program at the Vermont Achievement Center. At 5, Holzinger began attending Rutland Town School where Shelley Pelkey became her full-time paraeducator. An occupational therapist and a speech and language pathologist were also on her development team.
When Holzinger began working with Pelkey at Rutland Town School, she’d scream if someone touched her and she was particularly sensitive about her hair, so brushing it became part of their work together. Now Holzinger is able to tolerate her hair being braided.
Theirs is an unusual relationship in that until last year, Pelkey was Holzinger’s aide throughout her schooling at Rutland Town. The school now changes students’ aides every two years.
“What we’ve come to find through the years is you don’t want total dependency,” said Pati Beaumont, principal of the school. “I think we do strive very hard to listen to the fears of most parents.”
Learning to trust her child’s care to the school’s choice of paraeducator was difficult for Holzinger’s mother. At first, Miller didn’t want Pelkey to work with her daughter and requested a background check. Now, Miller says Pelkey, who has a son with Asperger’s, has been a godsend to her daughter.
“It is a learning – teaching process,” said Pelkey. “We’ve used many forms of communication anything we have available – pictures, sign, spelling. She is so verbal now compared to what she used to be.”
When Holzinger began at the school, if she was greeted by another student she would walk by, not acknowledging the hello. Pelkey taught her to stop, look at the person and reciprocate the greeting. Although her verbal skills and social skills have improved, Miller says her daughter mostly vocalizes needs and wants. She is still working on interactive conversation.
“She just loves people now, she loves being social,” said Pelkey. “It’s been baby steps. … It’s giving her the chance to show you that she understands. Once a skill is achieved you can generalize it across circumstances and situations.”
Although Pelkey does not have a college degree she has attended a number of trainings, workshops and classes on special education and autism spectrum disorders. Miller also continues to educate herself on best practices for educating her daughter. She says when she learns something new, employees of the school have already heard about it or are implementing it.
“Everybody here has always been one step ahead of me,” said Miller, recognizing how fortunate she is. “Rutland Town is a village raising my child.”
Mother of teen fights for progress.
Lisa Wood claims she is not the most popular mom at the schools her son Caleb Meaghan has attended. But if it weren’t for her tenacity, Meaghan may be having a more difficult time blending in as a freshman in high school. Although his integration has been somewhat seamless, the battles Wood has fought with the school’s officials are similar to past struggles.
“They’re discounting me already, and they’re discounting him already,” she said. “Nothing will tick off a mom with a special kid more than that, nothing.”Meaghan is a high-functioning child with autism, which is an often-overlooked diagnosis. Individuals with this form of autism are often labeled as difficult, stubborn or rigid. It takes special teachers and therapists who are willing to spend the time connecting with the child to help them continue to successfully develop.Many of the descriptions Wood uses to describe Meaghan’s behaviors as a child are similar to Emmons’. Once Meaghan was diagnosed, an occupational therapist and speech language pathologist were sent to Wood’s home to work with her son. “I’m more motivated than the average mom,” Wood said. “I took on a lot more at home.”
Wood says about one-fifth of Meaghan’s teachers have taken a real interest in his education. Meaghan didn’t ride the bus until second grade because the noise overwhelmed him. He didn’t talk freely until third grade, said Wood. In the sixth grade Meaghan was beaten up at school, and Wood was so worried he would check out even further that she took immediate action.
“I went right to a school board meeting and screamed and bawled my eyes out,” she said. “Advocating for your child should not be a luxury; it should be something every family can afford.”
Wood’s work schedule is flexible as she runs a farm with her husband and owns a business.
“There’s lots of people that are not as equipped as I and those are the ones I worry about,” she said. “God sent Caleb to me for a purpose. The only way I can help is to put back in for others.”
“There’s going to be so many kids like him out there,” said Wood. “I hope in 40 years I can tell you there are 10,000 kids like him. I wanted Caleb to have a normal life.”
‘If they have to fight, what are we doing?’
Each of these women are pioneers in the fight for better care for children with autism. All three described moments when the struggle became too much to bear; when it seemed like there was no help available for them.
Monem says she won’t wallow in self-pity, that she focuses on the here and now and what is best for her children.
Wood continues to explain to school administrators, parents of her son’s friends and others involved in Meaghan’s life that he does not have the same conceptual understanding of things as other children his age.
Miller relies on her daughter’s journal for basic information about how things are going for her at school.
“Heather can’t tell me how her day went,” said Miller. “We have to be their voice.”As Holzinger transitions from Rutland Town School to seventh grade at West Rutland School, both mom and school have learned from her journey. Early in her education the school would videotape her days so that Miller could observe her schooling schedule.
“The use of technology in the last 10 years has helped significantly in education practices,” said Pam Reed, director of special education in Rutland Central Supervisory Union. “There really isn’t support in Vermont for us. Even beyond money, it’s resources and workshops.”
says parents often go through a grieving process after their children are diagnosed with an autism spectrum disorder.
“I think it’s hard for the professionals to see that in parents,” she said. “If I were to stress one thing, they need to hear and listen to each other, communicate clearly.” As a professional whose career is based upon finding best practices for students with special needs within her supervisory union, Reed says the need for parents to fight saddens her.
“If they feel they have to fight, my God, what are we doing?” she asks.
Wednesday, July 25, 2007
Autism x 6: Family's kids all have the disorder
By Angie WellingDeseret Morning News
MURRAY — One minute they're sitting, the next they're gone. Off the couch and onto the rocking chair, into the corner of the room, anywhere but where they were. The children move quickly, often too fast for their parents — or even the camera's lens — to catch them
Scott G. Winterton, Deseret Morning News
Mary Kirton stands in her high chair in the kitchen during dinner. The Kirton family has six children with autism of differing degrees.
This speed, this constant flash of children, is why the Kirton house looks like it does: a veritable maze of locked doors and makeshift barricades that are designed to keep kids in, or out, of certain areas. It is why the Kirton parents can keep talking through just about anything, hardly raising their voices while 8-year-old Nephi has yet another "meltdown" as 5-year-old Sarah, aka "Tigger," bounces madly on the couch beside them.
After all, if John and Robin Kirton focused too much on these incidents, who would catch 3-year-old Ammon, lovingly referred to as "The Destroyer," before his little hand finds its way into his dirty diaper? And where, during all of this, are the older children, Bobby and Emma, or the baby, Mary?
Life with six children is tough. Life with six children with autism practically defies description.
The stress has landed the family in juvenile court, following an offhand comment from a frustrated mother, and cost John Kirton his job and the family's medical insurance. But it has also helped the Kirtons — who now market their own "Autism Bites" T-shirts — recognize the healing power of laughter.
John Kirton hugs his 5-year-old daughter, Sarah, at the family's home in Murray. John misses at least one day of work every couple of weeks to tend to his family.
"We use sarcastic humor to diffuse our stress," Robin Kirton said with a smile. Added husband John: "If we didn't laugh, we'd cry."
Dubious distinction. In Utah, 1 in every 133 children has autism, according to a recent study that placed Utah's rate about 12 percent higher than the national average. University of Utah researchers found that the rate is even higher for boys, at 1 in 79.
Even with such high state rates, having six children from the same family on the autism spectrum is extremely rare, said Judith Pinborough Zimmerman, Ph.D., assistant professor in the department of psychiatry at the U.
"What tends to happen is sometimes families, if they have one child with autism, they tend to stop having other children," she said. "Geneticists refer to it as stoppage."
Autism is characterized by impaired social, communicative and behavioral development. It is a spectrum disorder, with symptoms and characteristics ranging from mild to severe. Common characteristics include resistance to change, a difficulty expressing needs, tantrums, difficulty socializing with others, an obsessive attachment to objects, over- or under-sensitivity to pain and a preference for being alone. There is no medical cure for autism.
Autism cannot be detected by medical tests; diagnoses are based primarily on observation. Its causes are unknown, though research indicates that genetics can be a factor, while many believe that environmental factors and even childhood vaccines may be to blame.
Deseret Morning News graphic
The Kirtons note all of these factors when questioned about the cause of their children's autism. They also point to John's age as a possible factor, as he was over 40 when all of his children were born. (Bobby, the oldest boy, is Robin Kirton's son from her first marriage.)
The Kirton's own research, through Internet searches, online discussion groups and local autism conferences, has led the family to believe it may lead the nation in the number of children with autism. It's a dubious distinction to John and Robin Kirton, but they also see it as an opportunity to educate others about the disorder and, maybe one day, start their own nonprofit organization to raise money for other families with autistic children.
This week, researchers from the Utah Registry of Autism and Developmental Disabilities, a joint project between the state health department and the U. medical school's department of psychiatry, will visit the family's home to draw blood from each family member as part of an ongoing study into the role of genetics in autism.
Two-year-old Mary Kirton plays on the couch with her mother. Mary has PDD-NOS, which stands for "pervasive developmental disorder — not otherwise specified."
John and Robin Kirton bristle when asked the all-too-familiar question about their family: Why didn't they, as many parents do, stop having children?
Depending on their mood, the Kirtons respond with humor, frustration or defensiveness. Regardless, the answer remains the same — all of the Kirton children were already born when Bobby's fifth-grade teacher told John and Robin she suspected the boy suffered from Asperger's syndrome, a mild form of autism.
According to the Utah Registry of Autism and Developmental Disabilities, signs of autism-spectrum disorders are often the most obvious in 3 and 4 year olds, while more mild forms are often not diagnosed until later in childhood.
After observation tests confirmed Bobby, now 13, was a high-functioning autistic, the Kirtons began to become concerned about their other children. Sarah's diagnosis came next, then Ammon's.
"That's about when my grieving period started," John Kirton said. The Kirtons sought early intervention services for the two children, each considered "classic autistic." Falling at the severe end of the spectrum, each child is still in diapers and has limited verbal skills. It was one of those early intervention workers, from a local nonprofit organization that contracts with the Utah Department of Health, to whom Robin Kirton made the comment last fall about the family's Murray home being so dirty that some days she was tempted to "burn the whole thing down and start over."
The remark was never meant seriously, said Robin Kirton. It was simply one of those "dark and dangerous and scary thoughts that crosses the minds of all parents but you don't do."
Still, within an hour, workers from the state Division of Child and Family Services were at the front door. One week later, all six children were at the Christmas Box House, where they lived for two weeks while their mother's mental state was evaluated.
"I feel like my character was, at first, so smeared," Robin said. "At the same time, I know they were doing their job. I've just had to prove myself and earn our freedom back.
Emma Kirton, 9, chases Mary around the living room. The children move quickly, often too fast for their parents to catch them.
"It really helped humble us. It made us appreciate the children more." It also led to an official diagnosis for the other three Kirton children after the juvenile court judge ordered that they be tested for autism, as well. Last November, the news finally came: Emma, 9, and Nephi also have Asperger's syndrome and 2-year-old Mary has PDD-NOS, which stands for "pervasive developmental disorder — not otherwise specified." The news, Robin said, "was hard to take." However, the diagnoses also helped the family in certain ways, she said. "For one, it helped make sense of all the stress."
'Armageddon level'
The Kirtons will be back in court late next month for what they hope will be their final court hearing. "The thing with the thing," as John Kirton refers to the state intervention, is finally winding down.
The pair has made necessary changes to their home, and John Kirton has found work driving a truck for a local excavation company. The owner is sympathetic to the family's situation and the fact that John misses at least one day of work every couple of weeks to tend to his family — the reason he lost his previous job. And although John and Robin are without health insurance, three of the children receive Medicaid and the other three are on federal SSI (supplemental security income) through Social Security.
Meantime, the couple, who celebrated their 11th wedding anniversary in late May, will continue to cope with their situation in their own ways. John blogs on their Web site autismbites.blogspot.com about his family and rents World War II movies because, "even though I know how it ends, I like to see the fighting and how they got there." Robin, on the other hand, steals whatever free time she can to play her favorite computer game, Snood.
Recently, while reaching the highest level in the puzzle game, Robin reached an important conclusion about her life.
"I realized that the lower levels aren't fun now, because I'm good at it," Robin Kirton said. "If I had, say, six normal kids or less kids that were normal, that would be easy for me. God knew I was up for the challenge, so he made it.
"Six autistic kids is my Armageddon level."
Three-year-old Ammon Kirton, lovingly referred to as "The Destroyer," shuts the door on his baby sister, Mary. The door has been shortened so John and Robin Kirton can keep an eye on the kids.
John Kirton consoles his 8-year-old son, Nephi, who's been diagnosed with Asperger's syndrome. The six children are a handful.
Robin Kirton feeds her children dinner in their Murray home. The Kirton house is a veritable maze of locked doors and makeshift barricades designed to keep kids in, or out, of certain areas.
John Kirton shows what son Ammon does to most books and paper. Coping with stress has helped the Kirtons discover the healing power of laughter.
Brothers Nephi, left, and 13-year-old Bobby play with a Game Boy in their room. Bobby, Robin Kirton's son from her first marriage, was the first of the children to be diagnosed.
MURRAY — One minute they're sitting, the next they're gone. Off the couch and onto the rocking chair, into the corner of the room, anywhere but where they were. The children move quickly, often too fast for their parents — or even the camera's lens — to catch them
Scott G. Winterton, Deseret Morning News
Mary Kirton stands in her high chair in the kitchen during dinner. The Kirton family has six children with autism of differing degrees.
This speed, this constant flash of children, is why the Kirton house looks like it does: a veritable maze of locked doors and makeshift barricades that are designed to keep kids in, or out, of certain areas. It is why the Kirton parents can keep talking through just about anything, hardly raising their voices while 8-year-old Nephi has yet another "meltdown" as 5-year-old Sarah, aka "Tigger," bounces madly on the couch beside them.
After all, if John and Robin Kirton focused too much on these incidents, who would catch 3-year-old Ammon, lovingly referred to as "The Destroyer," before his little hand finds its way into his dirty diaper? And where, during all of this, are the older children, Bobby and Emma, or the baby, Mary?
Life with six children is tough. Life with six children with autism practically defies description.
The stress has landed the family in juvenile court, following an offhand comment from a frustrated mother, and cost John Kirton his job and the family's medical insurance. But it has also helped the Kirtons — who now market their own "Autism Bites" T-shirts — recognize the healing power of laughter.
John Kirton hugs his 5-year-old daughter, Sarah, at the family's home in Murray. John misses at least one day of work every couple of weeks to tend to his family.
"We use sarcastic humor to diffuse our stress," Robin Kirton said with a smile. Added husband John: "If we didn't laugh, we'd cry."
Dubious distinction. In Utah, 1 in every 133 children has autism, according to a recent study that placed Utah's rate about 12 percent higher than the national average. University of Utah researchers found that the rate is even higher for boys, at 1 in 79.
Even with such high state rates, having six children from the same family on the autism spectrum is extremely rare, said Judith Pinborough Zimmerman, Ph.D., assistant professor in the department of psychiatry at the U.
"What tends to happen is sometimes families, if they have one child with autism, they tend to stop having other children," she said. "Geneticists refer to it as stoppage."
Autism is characterized by impaired social, communicative and behavioral development. It is a spectrum disorder, with symptoms and characteristics ranging from mild to severe. Common characteristics include resistance to change, a difficulty expressing needs, tantrums, difficulty socializing with others, an obsessive attachment to objects, over- or under-sensitivity to pain and a preference for being alone. There is no medical cure for autism.
Autism cannot be detected by medical tests; diagnoses are based primarily on observation. Its causes are unknown, though research indicates that genetics can be a factor, while many believe that environmental factors and even childhood vaccines may be to blame.
Deseret Morning News graphic
The Kirtons note all of these factors when questioned about the cause of their children's autism. They also point to John's age as a possible factor, as he was over 40 when all of his children were born. (Bobby, the oldest boy, is Robin Kirton's son from her first marriage.)
The Kirton's own research, through Internet searches, online discussion groups and local autism conferences, has led the family to believe it may lead the nation in the number of children with autism. It's a dubious distinction to John and Robin Kirton, but they also see it as an opportunity to educate others about the disorder and, maybe one day, start their own nonprofit organization to raise money for other families with autistic children.
This week, researchers from the Utah Registry of Autism and Developmental Disabilities, a joint project between the state health department and the U. medical school's department of psychiatry, will visit the family's home to draw blood from each family member as part of an ongoing study into the role of genetics in autism.
Two-year-old Mary Kirton plays on the couch with her mother. Mary has PDD-NOS, which stands for "pervasive developmental disorder — not otherwise specified."
John and Robin Kirton bristle when asked the all-too-familiar question about their family: Why didn't they, as many parents do, stop having children?
Depending on their mood, the Kirtons respond with humor, frustration or defensiveness. Regardless, the answer remains the same — all of the Kirton children were already born when Bobby's fifth-grade teacher told John and Robin she suspected the boy suffered from Asperger's syndrome, a mild form of autism.
According to the Utah Registry of Autism and Developmental Disabilities, signs of autism-spectrum disorders are often the most obvious in 3 and 4 year olds, while more mild forms are often not diagnosed until later in childhood.
After observation tests confirmed Bobby, now 13, was a high-functioning autistic, the Kirtons began to become concerned about their other children. Sarah's diagnosis came next, then Ammon's.
"That's about when my grieving period started," John Kirton said. The Kirtons sought early intervention services for the two children, each considered "classic autistic." Falling at the severe end of the spectrum, each child is still in diapers and has limited verbal skills. It was one of those early intervention workers, from a local nonprofit organization that contracts with the Utah Department of Health, to whom Robin Kirton made the comment last fall about the family's Murray home being so dirty that some days she was tempted to "burn the whole thing down and start over."
The remark was never meant seriously, said Robin Kirton. It was simply one of those "dark and dangerous and scary thoughts that crosses the minds of all parents but you don't do."
Still, within an hour, workers from the state Division of Child and Family Services were at the front door. One week later, all six children were at the Christmas Box House, where they lived for two weeks while their mother's mental state was evaluated.
"I feel like my character was, at first, so smeared," Robin said. "At the same time, I know they were doing their job. I've just had to prove myself and earn our freedom back.
Emma Kirton, 9, chases Mary around the living room. The children move quickly, often too fast for their parents to catch them.
"It really helped humble us. It made us appreciate the children more." It also led to an official diagnosis for the other three Kirton children after the juvenile court judge ordered that they be tested for autism, as well. Last November, the news finally came: Emma, 9, and Nephi also have Asperger's syndrome and 2-year-old Mary has PDD-NOS, which stands for "pervasive developmental disorder — not otherwise specified." The news, Robin said, "was hard to take." However, the diagnoses also helped the family in certain ways, she said. "For one, it helped make sense of all the stress."
'Armageddon level'
The Kirtons will be back in court late next month for what they hope will be their final court hearing. "The thing with the thing," as John Kirton refers to the state intervention, is finally winding down.
The pair has made necessary changes to their home, and John Kirton has found work driving a truck for a local excavation company. The owner is sympathetic to the family's situation and the fact that John misses at least one day of work every couple of weeks to tend to his family — the reason he lost his previous job. And although John and Robin are without health insurance, three of the children receive Medicaid and the other three are on federal SSI (supplemental security income) through Social Security.
Meantime, the couple, who celebrated their 11th wedding anniversary in late May, will continue to cope with their situation in their own ways. John blogs on their Web site autismbites.blogspot.com about his family and rents World War II movies because, "even though I know how it ends, I like to see the fighting and how they got there." Robin, on the other hand, steals whatever free time she can to play her favorite computer game, Snood.
Recently, while reaching the highest level in the puzzle game, Robin reached an important conclusion about her life.
"I realized that the lower levels aren't fun now, because I'm good at it," Robin Kirton said. "If I had, say, six normal kids or less kids that were normal, that would be easy for me. God knew I was up for the challenge, so he made it.
"Six autistic kids is my Armageddon level."
Three-year-old Ammon Kirton, lovingly referred to as "The Destroyer," shuts the door on his baby sister, Mary. The door has been shortened so John and Robin Kirton can keep an eye on the kids.
John Kirton consoles his 8-year-old son, Nephi, who's been diagnosed with Asperger's syndrome. The six children are a handful.
Robin Kirton feeds her children dinner in their Murray home. The Kirton house is a veritable maze of locked doors and makeshift barricades designed to keep kids in, or out, of certain areas.
John Kirton shows what son Ammon does to most books and paper. Coping with stress has helped the Kirtons discover the healing power of laughter.
Brothers Nephi, left, and 13-year-old Bobby play with a Game Boy in their room. Bobby, Robin Kirton's son from her first marriage, was the first of the children to be diagnosed.
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