Autism Researchers Think They Are Closing In on Cause

This extensive Newsday article by Delthia Ricks focuses on recent genetic research and the reaction of some parents of children on the spectrum.
" With his Cold Spring Harbor [Laboratory] collaborators, Jonathan Sebat and Lakshmi Muthuswamy, [Michael] Wigler has found that spontaneous mutations specific to autism occur with a relative degree of frequency in the human genome. These random strikes are technically known as copy number variants, or CNVs. The Cold Spring Harbor team defines these mutating hits as a major cause of autism."

"Support from the Simons Foundation has allowed the researchers to collect genetic samples from 264 families nationwide, involving more than 1,000 individuals. Within these families, Wigler and colleagues were able to identify 118 families they dubbed as "simplex" where only one member displayed symptoms of autism and 47 families that were identified as "multiplex," with two or more affected siblings. The rest were controls.By studying families, the team was able to determine whether a child's genes were identical to the parents' or whether they contained variants. The investigation revealed the variants were most prevalent among people with autism."

"Alison Singer, executive director of Autism Speaks, a national advocacy organization, said the Cold Spring Harbor studies are destined to have a strong impact on how parents understand autism."We want them to pursue the science wherever it leads," Singer said. "But we don't want to get into a situation where we blame the parents. When some parents read stories about older fathers or older mothers, they can become very sensitive."Singer said what's missing in Wigler's work is the mechanism that causes genes to mutate. Susceptibility genes, she said, often need an outside stimulus to set off a genetic chain of events. Perhaps parents may be correct who think vaccination underlies autism, said Singer, whose daughter and brother are autistic."

The Meaning of Napoleon Dynamite

Child Psychiatrists Hope Levin and Steven Schlozman weigh in on the popularity of the movie "Napoleon Dynamite". Psychiatrist Brett Sharp writes a letter of response.

Autism/Pesticide Link? And What to Do About It

Charles has an excellent post at The Special Education Law Blog about the recent study demonstrating a possible link between autism cases and maternal exposure to pesticides while pregnant. Hip post has lots of advice about what parents can do to learn about their local school's use of pesticides and how to promote an IPM - Integrated Pest Management system.

Autism on Oprah

Oprah's August 2nd show was on autism. Go to her website to see the episode and explore other resources.

Preparing for an IEP Meeting

Charles at the Special Education Law blog has linked to an informative web site that helps coach parents at IEP (Individualized Education Program) meetings. It's a table of typical comments made by school officials with suggested responses by parents that might help get a more meaningful dialogue going. The law site is out of Colorado, but laws from other states are also cited.

AS in Adults

Very interesting article in USA Today, by Suzanne Leigh, about diagnosing Asperger's Syndrome in adults. Be sure to check out the comments. This quote is sure to generate some response:
"Almost by definition, an Asperger's person would not form an intimate relationship, get married and have children," says research scientist Katherine Tsatsanis of the Yale Developmental Disabilities Clinic. "They don't form connections. The desire, the drive and the social knowledge is lacking."

***UPDATE***
The doctors quoted in this article have posted a disclaimer on their website. They say they were misquoted.

Hippotherapy

This article by Eliza McGraw in the Washington Post offers a nice detailed description of hippotherapy - "which uses the natural movements of the horse as a tool for physical, occupational and sometimes speech therapy."

"Unlike therapeutic riding, which teaches people with special needs how to ride, hippotherapy (the name derives from the Greek word for "horse") focuses purely on the repetitive motion of the horse's walk, which mimics an average person's gait."

"Therapists may work with adults as well. But William Benda, an emergency physician and advocate of hippotherapy in Big Sur, California, is more enthusiastic about hippotherapy's effects on children than on adults. "The future benefit is much greater for the 4-year-old than a 40-year-old," he says. 'Injury to the brain is static, but the function worsens over time. Children's bodies have to grow around an asymmetrical disability, and they get worse. So we try to catch them as early as possible.' "

Support Group for Grandparents

This is such a great idea. I hope more groups like this form.

Swimming Lessons

I could really relate to this post from Ali Edwards at A. I like Edwards blog because it's about more than all autism, all the time. Kind of like life.

Social Skills Therapy: Ineffective?

Lisa Jo Rudy has initiated a discussion at About.com on social skills classes for children with ASDs. She refers to a recent review article which looks at studies of social skills interventions. The results are not so great.
See the discussion here.
An article about the study is here.

Study Shows Signs of Autism Appear Early in Some Children

Anita Manning writes in USA Today that "Children with autism can be identified as early as 14 months old, the youngest age at which the disorder has been diagnosed, a study by researchers at the Kennedy Krieger Institute in Baltimore suggests.
But about half the time, symptoms may not show up until months later. That suggests at least two distinct paths leading to autism: one that starts early in life and one in which a child seems to develop normally and then regresses, losing language and social skills. " Full story here.

Author to Appear on NPR

Ralph Savarese, author of REASONABLE PEOPLE: A MEMOIR OF AUTISM & ADOPTION, will be interviewed on the nationally-syndicated National Public Radio program, "The Diane Rehm Show", on Monday, June 25th to talk about his autistic son and the new book. He will be on from 11am - 12pm in the Washington DC area, although the show airs in hundreds of markets around the country. Please use this link to find a local station in your area that airs the show and the time it will air: http://wamu.org/programs/dr/about/affiliate_stations.php

The Help Group

This California Based organization has a nice collection of practical articles on ASDs and Asperger's on their web site here. Topics include - how to talk to your pediatrician, improving behavior, medications. They are brief, and may be worth sharing with family members who might be having difficulty understanding what ASDs are.

Autism Research Bills Pass NJ Assembly

From the AP wire in the NJ Courier-Post:
"Amid concern about New Jersey having America's highest autism rate, state senators Thursday pushed forward proposals to promote autism research.
The Assembly-approved bills would establish a statewide autism registry and provide more money for research and treatment. The bills are among several autism-related proposals that can now be considered by the full Senate."

Here is information on the registry bill.
This bill also seems to be moving along.
Information on other bills related to autism pending in the State Legislature is here.

Blog Carnival

The Special Education Law blog is hosting a blog carnival on June 18, 2007. Guidelines for submission are here. This is a great way to discover other blogs.

Hacking My Child's Brain - Update

Here's a progress report from Mark Woodman, who wrote a series of articles in Wired magazine about treatment for his son's sensory processing disorder.
"Despite the encouraging results, the program isn't a quick fix for sensory processing disorder. Proprioceptive awareness is still pretty tough for Caleb. His brain may be getting the right information now, but he still has to learn how to use it for the first time. We hope that he now has the neurological wiring needed to eventually catch up with his peers in social areas. The intriguing aspect of this whole experiment is to see evidence that my son's brain continues to reorganize itself around the sensory information. Caleb is experiencing the world in new ways, and only time will tell what comes of it. "

Autism and Race

Kathleen Megan of the Hartford Courant reports on the 18 month lag time in diagnosis for an African American child with autism.

" Wendy Fournier, president of the National Autism Association based in Nixa, Mo., said the issue is "actually driving us crazy. ... I think there are probably a lot of kids with autism in the minority community who are going undiagnosed."Fournier said her group is establishing a committee to reach out to minority communities. "At conferences we go to, there are no black people there, no minorities. It's kind of freaky. It's very, very noticeable.' "

"[David] Mandell, assistant professor at the University of Pennsylvania School of Medicine, studied children on Medicaid in an attempt to eliminate income as a factor in quality of care. He found that white kids were diagnosed at 6.3 years old, compared with 7.9 years for African American kids. This late age for diagnosis is "not good for anybody," said Mandell."

"Mandell's study also showed that African American children were less likely - by 2.6 times - to receive an autism diagnosis on their first visit to a specialty care office and more likely to be misdiagnosed with conduct disorder and adjustment disorder."

When a Child Outgrows the Safety Net

UPDATE: I neglected to include the essay's author in my initial post. It's Lisa Romeo. My apologies.

The New York Times publishes some wonderful essays on the weekends. I have really liked what I have found in their "Modern Love" weekly in the Sunday Styles section. The "New Jersey/NY Region" section also has some really good pieces.

This one appeared on Mother's Day in the NJ section, under a heading that said "Generations". I don't know how much longer it will be available for free online. But I thought it was worth sharing. A few excerpts:

"How does a mother keep from continually moving the net? Am I done with all that because Sean no longer arranges toys in straight lines or needs listening exercises? Because he can focus on a tennis ball in play, calmly enter new classrooms sans rehearsal? He is no longer so different, but is there still a special need? Something he still needs, from me? Maybe knowing, but not revealing, where his molted skins lie?

What do I know anyway? That it took 136 vision therapy sessions for his eyes not to hurt when the TV picture rolls or the sun glints off the pool? That his toddler habit of repeating every sentence I said was not cute but a sign of neurocognitive miswiring?

Sean may not be so different now, but I will always be a different mother, with painful memories of what could have been ordinary moments...

...I cherish the cheerful, dimpled adolescent with the amazing vocabulary, but he comes packaged with the recovered child of a thousand traumas. And the mother-advocate is a role difficult to relinquish. I was good at it. I got him through..."

This essay is adapted from “Special Gifts: Women Writers on the Heartache, Happiness and Hope in Raising a Special Needs Child,” to be published by Wyatt-MacKenzie in June.

We Just Got a Diagnosis, What Do We Do?

This brief article has some good tips.

I would add to it "Visit Your Library." Most of the library's books on autism have been selected because they have gone through the publishing process, which usually involves some sort of fact checking, and they have received good reviews from reliable professional resources. (Our library uses Booklist and Library Journal, along with catalogs from specialized publishers.)

A staff member at our library is also creating a collection of worthwhile web sites that will soon be posted on our library's home page. As soon as it is up I will link to it from the blog.

Jenny McCarthy Goes Public About Son with Autism

"I did want to acknowledge and confirm the fact that my son does, indeed, have an autism diagnosis," McCarthy, 34, said on Thursday's edition of ABC's The View, on which she served as guest cohost.

McCarthy's book on the subject, Louder Than Words, is scheduled to published in September.

"I just want moms ... who have children out there with autism ... to know that I am coming back in a few months with this book, and I am planning on using my big, giant, controversial mouth to blow the lid off a lot of things related to autism to give moms hope," she said. "It is so needed."

People.com story here.

Garage Door Cakes

"When he turned three years old, I brought out my inner “Martha Stewart” and baked a birthday cake that I knew no one else would ever imagine — a cake in the shape of a garage door."

Just another day in the life of a parent of a child with autism!

"It is never my intention to have him labeled ... I just want to have him understood."

"...I didn’t want to write this commentary to draw attention to my child. I just think it’s important for everyone to be aware that all too often there’s “more than meets the eye”. Before I had my son, I admit to judging a parent’s skills if the child misbehaved. But now I’m aware that we don’t know the whole story. I’m still learning patience and know that there is hope for each child diagnosed with austim, wherever they fall on the spectrum."

Book Review: Children's Fiction

Emma-Jean Lazarus Fell Out of a Tree by Lauren Tarshis
Did you ever watch that wildlife show with Marlon Perkins that was on Sunday nights before "Wonderful World of Disney"? Marlon Perkins was so unflappable and smart, like a scholarly grandfather. Emma-Jean is sort of like Perkins, observing the behavior of her fellow 7th graders at William Gladstone Middle School. Their antics are quite messy and illogical, according to her. But they don't bother with her much, so she is free to observe them at her liesure. But one day she stumbles on Colleen Pomerantz crying her eyes out in the girls' bathroom, and Emma-Jean decides to see if she can apply her knowledge and intellectual abilities to solving Colleen's problem. To her great satisfaction, Emma-Jean's efforts are successful. This leads her to try to fix the problems of other students and some teachers at her school. What happens next teaches Emma-Jean a lot about matters of the heart and the mind.
It's hard for me to be subjective about this book. I devoured it in about a day and absolutely loved it. Though it is never stated, Emma-Jean displays many hallmarks of high functioning quirky kids on the autism spectrum. What is so cool is that Emma-Jean may be odd, but she is not really any stranger than the kids at the public school she attends. And by the end of the book, Emma-Jean takes her place among them - even though she is a bit odd, she finds a way to belong. Phew! Even thinking about it now makes me a little bit verklempt. I truly hope kids take to this book - it's got such a positive, affirmative message - we are all different, and we all belong.

Spanish Language Site

Here is a web site providing information and support for Spanish-speaking parents of children with autism.

I found this on my colleague Ellen's blog. Thank you, Ellen for your encouragement and hard work on behalf of families of autistic children!

TV Show Alert

Nick News on the Nickelodeon network is broadcasting a show entitled "Private Worlds: Kids and Autism" on Sunday, April 22. It will be hosted by Linda Ellerbee and profile one child with autism, one with Asperger's and one with savant abilities. Temple Grandin also appears, asking kids not to tease their classmates with autism.
More details here.

New Early Diagnosis Test

Found this on the Special Education Law Blog:
Researchers have discovered that something as simple as calling out a baby's name to see if he or she responds could be the first step in early diagnosis of autism. "If a child fails the test at 12 months, they're highly likely to have some abnormal developmental outcome that could probably respond to therapy," said Dr. Sally Ozonoff, a professor at the University of California, Davis' M.I.N.D. institute.
Full article here.

Sensory Wall

An Occupational Therapist has designed a wall that helps kids with sensory integration issues. The article includes this description of SID:
"It's like when you are watching television," explained Merrin Brown, registered occupational therapist at BMH and team leader for Blount County Schools. "You are using your sense of sight, sound, touch and also taste if you are eating. You are also using cognition to enjoy your favorite show. But if the dog starts barking or the kids are screaming or the phone rings, you will either get frustrated or yell at someone to be quiet. With children with sensory needs, it's like that every day."

Celebrate!

It's National Library Week! If you haven't visited your local public library lately, give it a try. There's lots of good stuff there, including DVDs, magazines, and books. Check out what they have on ASDs - you might be pleasantly surprised. And it's a lot cheaper to borrow books than to buy them!
In celebration of reading, here is a heartwarming story from a mom with two children on the spectrum.
"...when my twins were diagnosed as being on the autism spectrum, I could feel my legs go numb as I read all the things an autistic child might never do. One of my favorite activities with my children has always been reading books to them; could it be they would never share that joy? Would I never hear them read "Go, Dog. Go!" to me?"
"...although there are many fears for our children, they can reward you with wonderful surprises, just like a colorful flower suddenly pops from the barren and cold ground. It was there the whole time, just waiting for everything to come together."

Did Mr. Darcy Have Asperger's?

At first I thought this was a bit silly, but upon further reflection, maybe it demonstrates that people on the spectrum have been around for a very long time, and represent a predictable, recurring aspect of human nature.

I may touch more on this after I finish reading Unstrange Minds, a new book on autism written by a medical anthropologist. It explores the labels we give to different human behaviors. So far it is really good.

Learning Social Skills by Watching

Two new studies at Indiana University demonstrate that videos depicting exemplary behaviors can be effective in helping children and adolescents with autism spectrum disorders develop social skills and daily living skills.
Details here.

Did It Work?

Part 8 of the Wired Series "Hacking My Child's Brain" looks at preliminary results.

Thomas the Tank Engine

Here's an example of a child with ASD whose Thomas obsession led to a breakthrough.

Another Way to Communicate

This article highlights a promising use of Makaton, a kind of modified sign language.
"To the untrained eye, it may look like a funky new dance routine.
But for many the introduction of Makaton, a new form of sign language, is proving a lifeline. Little Morgan Harrison, a pupil at Park School on Whitegate Drive, is a "non-speaker" and on the autistic spectrum. But since September the five-year-old's development has come on leaps and bounds thanks, his mum and teachers believe, to the use of Makaton. Makaton uses simple pictures, hand gestures and the spoken word to communicate on a child level. "

Philadelphia Zoo Awareness

April 22 is Autism Awareness Day at the Philadelphia Zoo. There will be a magic show, jugglers, live music, and Pierre Robert from radio station WMMR. This event is sponsored by the Greater Philadelphia Chapter of the Autism Society of America. More info about the event here.

Work in Progress

If things on the blog look a little funny, please bear with me. I am trying to learn to use more Blogger features, like adding a blogroll, just like my friend Liz said to. So please be patient while I stumble along.
Thanks!

DNA Glitches Tied to Autism

From CNN:
"Little glitches in the DNA of people with autism suggest that the disease might be caused by as many as 100 different genes, researchers reported Thursday.
The study is one of several new reports on autism in recent months, which have shown the disease is far more common and more complex than many experts had believed.
"These findings certainly complicate the search for genes contributing to autism. These are rare changes, dispersed across the genome, and they tell us that autism may be the final common path for many different genetic abnormalities," said Dr. Thomas Insel, director of the National Institute for Mental Health, which helped fund the study.
The small changes are not what people usually think of as genetic mutations but are called copy number variations -- extra copies or missing stretches of DNA.
For instance, one child with Asperger's syndrome was missing DNA from a stretch of 27 genes.
The findings suggest that autism spectrum disorder may involve 100 or more genes, the researchers report in Friday's issue of the journal Science."

"Usually, tests of DNA of people with diseases show that everyone in a family who has the disorder carries the same mutation or pattern of mutations.
But that's not the case here. The researchers found numerous spontaneous mutations in 14 of 195 people with autism spectrum disorders compared to two of 196 unaffected people.
And of the 14 autism patients with mutations, only two had relatives with autism.
"Our results show conclusively that these tiny glitches are frequent in autism, occurring in at least 10 percent of cases, and primarily in the sporadic form of the disease, which accounts for 90 percent of affected individuals," Sebat said in a statement.
Dr. Jeffrey Lieberman, chairman of the department of psychiatry at Columbia University Medical Center in New York, said such work does not answer one overwhelming question about autism -- what causes these genetic changes in the first place."

I also heard about this in National Public Radio.

ASD on MTV

Jeremy Sicile-Kira and Elijah Wapner, sons of Autism One 2007 Conference presenters Chantal Sicile-Kira and Dr. Valerie Paradiz will be featured on MTV's documentary series “True Life.” "True Life: I'm Autistic" will air on Sunday, March 18th at 9:00 pm EST. This episode will follow three teenagers on the spectrum, Jeremy, Elijah, and Jonathan Lerman, over 6 months.
MTV website here.

The Other Shoe Droppped

Part 7 of the ongoing series "Hacking My Child's Brain" is up. The inevitable questions about neurodiversity have cropped up, and the writer has opened up the forum and asked for comments.
I have to admit, I was waiting for this reaction. This is an issue all parents of children with ASDs face, in some form or another.

A Brother's Story

I don’t feel disabled,” he said. “I don’t feel like I’m weird. I just know that from everyone’s reactions.”

This is an eloquent account of a family's journey with Asperger's, as told by a young man's neurotypical younger brother.

Some excerpts:
"Mom stayed home then, taking care of us and the house. Dad worked 10-hour days at IBM, feeling stuck in a managerial job he never really wanted. Every morning before Erik and I headed off to primary school, Mom would make our breakfast and Dad’s lunch.
While Mom got our cereal or toast with chocolate sprinkles ready, I’d get dressed in my second-floor room. A floor above, in Erik’s room, the drama would start.
Erik, get dressed! I’d hear my mother yell up the stairs. Erik, take 20 less minutes on your shower!
Erik, brush your teeth! And — again — Erik, get dressed!
Despite her pleas, most mornings found Erik curled up in his room, reading a video game magazine or staring off into space.
I hated the yelling, so I’d hear one order and follow it. (That stuck with me for life — I’ve often been called mature for my age, probably from watching my parents give the same orders over and over. Or maybe from not wanting to add to the chaos.)
“It was a really, really tough time,” Mom told me recently.
One exhausting morning after another, after we were finally out the door, she would sink into a living room couch, turn on the TV and try to forget what was going on around her. She’d try to forget her husband’s disaffection with a job he hated. She’d try to forget that she was thousands of miles from her parents. And she’d try to forget that she had a son who didn’t seem to be learning any of the practical aspects of life."

"That was the year my parents sent Erik to his first psychologist. They didn’t learn then that he had Asperger’s; the disorder hadn’t been identified yet. But they did learn that he needed special attention, and that it wasn’t their parenting that was at fault. They received tips, such as breaking down activities into smaller steps, on how to help him learn. “What we learned was we could not expect Erik to do what other children were doing at his age,” Mom said. “We had to meet him where he was and where his needs were. When we started doing that, when we stopped putting demands on him, the whole atmosphere in the house improved tremendously.”
It saved the marriage.
They were lucky."

Classroom Design for Kids with ASDs

"The standard of education for children with autism spectrum disorders (ASD) can be improved by better classroom design, but often not enough attention is given to their needs. Now, researchers Coventry University's Design Ergonomics Applied Research Group have developed a new environment that is engaging autistic children in schools through digital technology.
Experts from Coventry University have designed the first low cost education and activity area for children with autism that can be used in mainstream schools. The environment is enabling teachers to educate and integrate children with special needs within conventional schools.
Over 100 primary and secondary school children in Birmingham and Coventry have successfully tested and used the high-tech (fixed and portable) teaching and learning spaces. "

"The system is comprised of a computer, tailor made software, a projector, a video camera and sound speakers. To provide a safe, neutral environment traditional classroom strip lighting is swapped for daylight bulbs and an LED lighting system, and hypo allergenic marmoleum flooring and a padded projection screen where installed. The rooms are painted white, and black blinds block out light and noise from outside.
Improvements in users have included greater levels of engagement with other people, for example, improved communication with their peers. Teachers and parents have also noted that the children develop a better relationship with their school routine and improve their performance in mixed ability classes. "

Full article here.

NJ Autism Bills Advance

"A package of bills aimed at improving the diagnosis, treatment and awareness of autism gained widespread support during an Assembly committee hearing today. It comes after a recent study found New Jersey had the highest incidence of the disorder among 14 states.
The bills would establish an autism registry under the state Department of Health and Senior Services, with funding of $500,000; create a task force on adults with autism; extend funding for autism research and treatment; and strengthen an early intervention program for babies and toddlers.
Other measures would reorganize the Governor's Council for Medical Research and Treatment of Autism to attract research funding, and require extra training about autism for classroom teachers. A separate bill would establish an autism awareness program for emergency, police and fire department personnel.
Two resolutions would urge the state to look at any possible links between the incidence of autism and prenatal sonograms or vaccinations containing thimerisol -- two proported causes of autism that have never been scientifically proven. "
Full article here.

"It's not the label that's the problem...

...it's the baggage associated with it." Quick, somebody engrave that somewhere!
This is a very interesting article about our tendency to want to give everything a name, and what mindset it might produce.
"...parents and children may be relieved to learn that there's a name for the problem and specific remedies. But, she says, "it's incumbent on parents to explain that 'Well, you may be wired a little differently; this might make it more difficult for you; you might have to work harder and use different strategies,' as opposed to 'This means you can't learn.' "
Recent research in neuroscience bolsters the idea that people can and do change. Says Perry: "The brain is like a muscle: The areas that are used grow and improve while those which aren't, don't." Such growth is often visible on brain scans. Parents should also be aware that the criteria used to define these conditions are not absolute and that they shift over time. The conditions themselves also change as children learn and grow, often worsening with stress and improving when the child feels calm and safe."

Blog Series on Sensory Processing Disorder

This series of first person articles appeared on Wired Magazine's website, in the Blogs section. Part 1 is at the bottom of the page. The writes calles Sensory Processing Disorder the "human equivalent of a computer that can't adequately multitask, or a network that drops packets when there is a lot of traffic. All of [her son Caleb's] senses work individually, but his brain loses information when they are combined. This problem wasn't obvious to us when he was younger, but now that he is in first grade, the complications are growing."
She continues:
"I've become solidly convinced that my son Caleb doesn't need a coping strategy, he needs his brain to be recalibrated. With the help of some professionals and some surreal neurotechnology, I'm going to try doing just that. We're going to try to hack my child's brain.
Today our family will travel to a clinic in Boulder, Colorado to do initial tests with Caleb. The treatment itself begins in earnest next Friday, which is when the neurotech comes into play. In this multiple-part series, I'll take you with us on the journey. I don't know what the outcome will be, but we can watch it unfold together."
At the end of Part 4, this is where she is at:
"Caleb is now over half-way through the program at the Center, going once in the morning and then again in the afternoon. We make careful observations of his behavior, taking notes and watching how he relates to the world around him. It is too early to tell what kind of effect the treatment is having, but our hopes are high."
To be continued...

Book Review: Rules by Cynthia Lord

This is a children's book, for ages 10 and up. It's a good read for siblings of autistic children.
Rules by Cynthia Lord
Catherine is 12 years old and in between. She is stuck between her brother David and her parents, and David and the outside world. Nothing goes as she wishes it would. Why does her best friend have to spend the summer in California? Why do all her hopes for friendship with Kristi, who just moved in next door, get twisted out of shape? Why can't she be honest about her new friend Jason? Above all, why can't everyone have the same chances in life?
I liked this book because Catherine is so real. She's human, she has faults, and she makes mistakes. She cares about what she wears and being popular. But she also has a big heart. So I was rooting for her all the way, even when she did things I didn't agree with.

Book Review: George and Sam

I always meant to do book reviews on this blog, but it's been difficult. I read a lot of very different things for my job, as a librarian, and just because. But here's one I finished recently"

"George and Sam: Two Boys, One Family and Autism" by Charlotte Moore.
Moore is a British writer and friend of Nick Hornby, who raved about this book in "The Polysyllabic Spree". It wasn't available in the US until recently. Moore has taken up the task of describing the experience of living with two children with autism as clearly and accurately as she can. This is a rather unsentimental view of "autists", as she calls them. But at the same time, it is clearly evident that she fiercely loves all of her children and would not change them if she could. When describing her perpetual state of sleep deprivation, Moore says, "Acceptance is key - for me, anyway. Once I'd let myself stop fighting the boys' sleep habits, everything improved. One should set oneself realistic targets." This sums up Moore's approach to rearing her autistic boys. She walks the fine line between acceptance, which could easily veer over into passivity, and active education/rehabilitation, which also, taken too far, can become obsession. I think she does an admirable job. I don't agree with everything she says (she is adamantly against mainstreaming even high functioning autisitic children in school), but she does try many treatments, with different degrees of results. Above all, Moore's humanity shines through. Her book is heartbreaking and sardonic at the same time. She doesn't ever feel sorry for herself. As a writer, she ruminates eloquently on what autism "means" to us "normal" people. Moore says, "...autism challenges our assumptions about what it means to be human...they can be instruments for us to learn benevolence upon; unwittingly, they provide a yardstick for neurotypical moral behavior."

Inability to Metabolize Fats May Be Key to Autism

This article in the Newark Star-Ledger describes research by NJ scientists on how the body breaks down fatty acids, and its connection to autism. Some excerpts:
"Researchers say that in the future a person's risk for autism could be measured with a simple urine test that would look for high levels of "bad" fat molecules, or a blood test that could reveal genetic problems, including the absence of a key gene, called GSTM1, which is responsible for metabolizing good fats. Many people with autism do not have this gene.
Xue Ming, a neuroscientist and a founding director of the Autism Center at UMNDJ-Newark, discovered that children with autism have higher levels of bad fat molecules in their urine than typical children.
No one understands yet why it is that so many children with autism have such metabolic differences, but Ming suggested it might be caused by an interaction between genes and the environment. It may be that having less of these key fats reduces the body's ability to deal with environmental and metabolic stress. "

""Metabolic issues in autism are entirely understudied," said Sophia Colamarino, science director for Cure Autism Now, a major advocacy and research group in Los Angeles. "It's a very exciting area. There is accumulating evidence that would clearly tell me this is where I should look."
The New Jersey scientists are cautious, however, about their preliminary results, and warn families not to expect a miracle cure. Testing on humans, they say, could take a few years.
Meanwhile, the researchers are preparing a preliminary study to begin in September. Lambert hopes to work with 5- to 7-year-olds at the Douglass Developmental Disabilities Center in New Brunswick, a school for children with autism run by Rutgers.
Lambert will be giving the children doses of a good fatty acids to see if they have any noticeable effect on the children's cognitive, social and behavioral states. The study will use a control group of similar students.
"New Jersey is the perfect place to do this," said Lambert, director of the EPA-funded Center for Neurotoxicology. "We have a high incidence (of autism), a long history of activism and a strong community." "

Article on NLD

Coverage of Nonverbal Learning Disorder is generally sporadic, probably because it is not yet listed in the DSM Diagnostoc Statistical Manaual). Here's a decent article, with a rather unfortunate headline.
"Coworkers do not understand why people who are smart and educated have problems with tasks such as managing a classroom or assisting customers. Teachers and parents often cry out in frustration, "If you're so smart, why can't you..." or "I shouldn't have to tell you!" But you do have to tell them, because people with nonverbal learning disability often don't learn by observation, and have trouble learning and doing the simple, everyday things most people take for granted. "

"Day to Day" on NPR

Today's edition of "Day to Day" on NPR is supposed to do a feature on renewed attention on Asperger's Syndrome in the wake of the murder in the Boston area. Find your local station here.

1 in 150

New numbers are coming out of the Centers for Disease Control.

"Prevalence of Autism Spectrum Disorders --- Autism and Developmental Disabilities Monitoring Network, Six Sites, United States, 2000."Catherine Rice et al. (CDC).MMWR CDC Surveillance Summaries, February 9, 2007, Vol. 56, No. SS-1

"Prevalence of Autism Spectrum Disorders --- Autism and Developmental Disabilities Monitoring Network, 14 Sites, 2002."Catherine Rice et al. (CDC).MMWR CDC Surveillance Summaries, February 9, 2007, Vol. 56, No. SS-1

Treating Autism Through Diet

Nice article on gluten free and casein free diet here. It's good to see some research being done on this. Some excerpts:
"Why the diet seems to work isn't completely understood. One theory involves the "leaky gut syndrome," in which the autistic child's body isn't able to process proteins found in wheat and dairy products, said Gary Stobbe, medical director of Seattle's Autism Spectrum Treatment and Research Center, a non-profit organization that diagnoses, treats and manages people with autism. The undigested chunks of protein get into the blood stream and affect the brain. Another theory is the body's immune system is reacting to the proteins in the body."Nothing is determined for certain and there is no set approach with the diet," he said. "In my practice, it is something we encourage in younger kids or if we see a kid not making progress with more conventional therapies. "Stobbe said for some children, especially the more severe autism cases and those with physical complaints, the diet works well. They are calmer, have better attention spans and have less severe behavioral disturbances.Still no one knows whether this will work in the long term.
So far, only anecdotal evidence from parents is available.One study under way at the University of Rochester Medical Center in New York looks at the effects of the diet in autistic children between the ages of 2 1/2 and 4 1/2. Sponsored by the National Institute of Mental Health, it began in 2004 and should be completed in 2008.

Media Coverage vs Scientific Research

Sifting through the pages of newspapers, most people reading stories about autism would think scientists are primarily grappling with understanding how environmental factors, such as childhood vaccines, might contribute to the condition.
But the truth is quite different. The efforts of the scientific community to explore autism lie predominantly in brain and behavior research.
This disconnect between the scientific community and the popular media is starkly laid out in a study published in the February issue of Nature Reviews Neuroscience by researchers at the Stanford University School of Medicine.
The researchers found that while 41 percent of research funding and published scientific papers on autism dealt with brain and behavior research, only 11 percent of newspaper stories in the United States, United Kingdom and Canada dealt with those issues. Instead, 48 percent of the media coverage dealt with environmental causes of autism, particularly the childhood MMR vaccine for measles, mumps and rubella that was once linked with autism in a widely refuted study. Only 13 percent of published research was about environmental triggers of autism.
“What was very interesting is that media frequently reported being very skeptical of the MMR evidence, as was scientific literature,” said Judy Illes, PhD, associate professor of pediatrics and senior author of the paper. The media stories accurately reflected scientific thinking, but didn’t reflect the breadth of scientific research including the genetics, treatment and epidemiology of autism.

The Stanford team divided autism research into six categories: brain and behavior, genetic, environment, treatment, epidemiology and other. Singh then categorized research spending, published research papers and stories about autism in the media. What she found was a sharp disconnect between the conversation scientists were having via published papers, and what the public learned about autism through the media.

Interesting read! Full article here.

Article on Women with Asperger's

From Psychology Today:
"Girls are pretty neglected," says Shana Nichols, who specializes in treating girls with AS. Most of what we know about the condition is based on research on boys; theories about how it manifests itself differently in girls stem mainly from anecdotal evidence. Researchers agree that girls with AS tend to be more anxious and less aggressive than the boys. And during their teenage years, they are at an increased risk for awkward sexual situations and even date rape because of their inability to interpret social cues and their tendency to take statements literally. "

Career Advice from Someone with AS

The Boston Globe frequently has articles spotlighting people with autism and Asperger's. Here is an interesting article that appeared in the Career Section.

"Hannah's successful strategies for dealing with her disability could be adapted by adults having trouble in their professional lives -- particularly those who can't seem to connect with others at work."

It sure beats seeing this in the Boston Herald.

American Idol Auditions Get Ugly

I don't watch the show, so I did not see the most recent auditions, but it sounds like it was a sad display of ugliness.

Benefits in NJ

Article in the Courier-Post:

TRENTON -- New Jersey was wrong in denying access to necessary medical therapy for autistic children whose parents are covered under the State Health Benefits Program, the state appeals court ruled today.
Occupational, speech and physical therapy, viewed as standard treatment for the one in 166 children nationwide affected by autism spectrum disorders, did not fall under the program provided by the State Health Benefits Commission, which said coverage cannot be extended "to promote development beyond any level of function previously demonstrated." In other words, because the boys could not previously perform the skills taught in these therapies, the program would not pay for them.A 1999 state law, however, requires coverage parity in medical insurance, meaning state medical coverage for those affected by biologically based mental illnesses must be the same for any other covered sickness. The two rulings today struck down previous court decisions in finding the medical parity act was intended to cover such therapies.

Research on Mirror Neurons

"A study in the Jan. 6 issue of Nature Neuroscience journal indicates [mirror neurons] are involved not only in the execution and observation of movement, but also in higher cognitive processes. These include speaking, imitating and learning from the action of others, by deciphering their intentions and empathizing with their pain.
Because all these abilities come up short in most individuals with autism, scientists have suspected there may be a glitch.
New findings lend substantial support to that theory, providing evidence of a dysfunctional mirror neuron system that may contribute to many impairments, particularly those involving comprehending and responding to the behavior of others, said lead author Mirella Dapretto, assistant professor in residence of psychiatry and biobehavioral sciences at the Semel Institute for Neuroscience and Human Behavior and the David Geffen School of Medicine at the University of California-Los Angeles.
The study sheds new light on the neural basis of autism and may pave the way to early diagnosis and potential therapies, such as biofeedback, the authors said. "

United Press International article here.

Simon Baron-Cohen Launches DVD Series

"The Transporters" is designed to help children recognize different emotions via facial expressions.

"Professor Simon Baron-Cohen, Director of the Autism Research Centre (ARC) at Cambridge University and David Lammy, Culture Minister, yesterday launched a novel animation DVD to help young children with autism.The Transporters DVD, commissioned by Culture Online, part of the Department for Culture, Media and Sport, aims to help children with autism to look at the human face and to learn about emotions. The series of 15 five-minute episodes features the adventures of eight lovable toys with human faces, each focusing on a different human emotion. Stephen Fry is the narrator."



"Research by Dr Ofer Golan and Professor Simon Baron-Cohen from ARC found that following a four-week period of watching the DVD for 15 minutes a day, children with high-functioning autism caught up with typically developing children of the same age in their performance on emotion recognition tasks. One parent who took part in the clinical trials said of their son with autism: "We have noticed a change in his behaviour, speech and range of emotional expressions since he started watching The Transporters. It's a bit like someone's flicked a switch in his head."

Article here. [don't know how long it will last]

Autism Research Centre here.
Watch episode one online.
Copies of the DVDs can be requested here - UK residents only.

Sad News

Nikki Bacharach, daughter of songwriter Burt Bacharach and actress Angie Dickinson, committed suicide. She had Asperger's Syndrome.
"Does AS or autism make a person more likely to commit suicide, as in the case of Burt Bacharach's daughter? The NAS [UK-based National Autism Society] spokeswoman said it was difficult to answer because the disorder affected people in different ways. "It's not a mental disorder, it's a developmental disability. It is not a mental health issue per se," she said.
But Dr [Lorna] Wing and others have highlighted issues of psychiatric trauma and varying degrees of depression among young adults with AS, something that seems related to their awareness of their difference from others. One paper on the subject claims that five out of 22 young adults with AS had tried to take their lives."

What to Read Next

The Cincinnati Public Library has a wonderful "reading map" that lists tons of books to read after you are done with "The Curious Incident of the the Dog in the Night-Time" by Mark Haddon (which I ruefully admit I have not read yet!).
Link came from the h20boro blog, my role model, blog-wise.

Communicating with Color

From yesterday's Taday Show, via FACES Yahoo Group email:
http://video. msn.com/v/ us/msnbc. htm?g=8ef1cae8- f7a8-4c00- 8e2d-4135c08827\54&f=00&fg=email
Watch it - you'll be inspired.

Kids Work Out to start The Day

Special needs kids in a Michigan charter school work out first before coming to class and seem to be behaving better in school.
"Kindergartners through sixth-graders with learning disabilities, speech impairments, autism and other special needs spend 30 minutes four times each week at Gymco, a 15,000-square-foot fitness center next to the charter school, 4120 Camelot Ridge Dr. SE off East Paris Avenue.
The school's occupational therapist, some classroom aides and Gymco staff oversee the morning workouts.
"We strongly believe that certain movement activities stimulate the brain in certain ways," Principal David King said. "Students are able to do significantly better both academically and behaviorally for the rest of the day."
That's true for Ryan, whose interaction with fellow students is more positive and less aggressive than a year ago, second-grade teacher Mary Donaldson said. And he comes to class ready to work."
Full article here.
Cool idea.

NYT Op-Ed: More Needs to Be Done Now for Kids on the Spectrum

This New York Times Op-Ed piece brings up a good point about the Combating Autism Act - while it may do enormous good for the generation to come, families with children with autism need help NOW. some choice quotes:
"In America, you have to be lucky or rich to get proper care for your young autistic child. "

"If we do not help these children, we are essentially condemning them to a lifetime of disability, unemployment and, for many, institutionalization. On human grounds, this is tragic. But it’s also bad economics. The few hundred thousand dollars needed to do intensive early intervention for four or five years — while a lot — is only one-tenth the expected cost of supporting someone for a lifetime on the dole."

"Insurance companies and others often deny coverage by arguing that treatment methods are experimental, but that assertion no longer holds water. Studies now show that 40 percent to 50 percent of toddlers undergoing intensive Applied Behavior Analysis, one of the best-known methods, can be mainstreamed in regular classrooms without personal aides by the time they reach school age. (The figure is close to zero for children not given special care.) Most of the other 50 percent to 60 percent make notable progress too."

"Once the Combating Autism Act is passed, and we hold out hope for the next generation, it is time to rescue the children who already are afflicted. Our options range from mandating that insurance companies cover therapies documented to work, to trumpeting the example of places that do provide coverage in the hope others will follow, to expanding autism Medicaid waivers.
The autism community is encouraged by the recent attention to this profound set of disabilities. But as a nation, we have been letting down 25,000 more children every year. Good will is not enough."

Dear Abby

I have been home this holiday week with my family, so posting has been difficult. Also, I missed this letter in "Dear Abby".
A small excerpt: "My problem is, Todd is so open with how he feels that he comes across as being rude, argumentative and disrespectful. He tells me that he's not trying to be, that he's just voicing his opinion and how he feels -- and that should not be wrong. In some ways, my son is right. But trying to teach him that there's a time and place for his opinions has proven extremely difficult."
Here is Abby's response:
"DEAR FEELING LOST AND GUILTY: Explain that honesty is a virtue -- unless it is used as a club to hurt others. Diplomacy is a skill that has to be learned. There is a time and place for everything, and before your son shoots off his mouth he should ask himself three questions: Is it kind? Is it helpful? Is it true? Instruct him that he needs to apply that rule to his interactions with his teachers and contemporaries.
If the young man is unable to do that, he could benefit by being evaluated by a licensed mental health professional because he may need therapy or coaching in social skills."

The replies from readers have been interesting too:

"Here I go, sounding like an old fogy, but "Feeling Lost and Guilty" (11/5), who said she and her loudmouthed, snotty son are "best friends," has brought her problem on herself. The No. 1 problem of parents today is that they try to be friends with their children rather than parents. Back when I was his age, parents were parents to their children -- not friends. There is a difference!"
Abby writes:
DEAR DISAPPOINTED: You are correct in saying that some parents shirk their responsibility by refusing to be firm with their children as well as responsible role models. However, before painting all parents of children with social problems with the same broad brush, please read on:
DEAR ABBY: Thank you for advising the mother of "Todd," the teen who doesn't know how to keep his mouth shut, to seek an evaluation. If the boy has a problem with empathy, it could be that he has Asperger's syndrome, an increasingly more common form of mild autism. This is a social disability, often more noticeable in the teenage years, when social expectations are more sophisticated. I should know -- I am a school psychologist and also the mother of a 13-year-old with Asperger's. -- MOM IN BERKELEY, CALIF.

Many Faces of Autism

United Press International's PedMed is publishing a series of articles on autism, utilizing many different resources. The first installment looks at the many different types of autism.
"Although all show some degree of difficulty in socializing, communicating and imagining, like snowflakes, no two cases of autism are exactly alike, researchers say.
Their newfound recognition of the condition's diverse complexity and multi-faceted nature carries over to the research field, where the seekers of causes and cures are starting to look for ways to subdivide the disorder and crack its armor of secrecy piece by piece. "

Bush Signs

President Bush signed the Combating Autism Act. (Next step - appropriations.)

French Scientists Find Gene Mutation

French scientists have identified genetic mutations in a small number of children with autism which could provide insight into the biological basis of the disorder.
They sequenced a gene called SHANK3 in more than 200 people with autism spectrum disorders (ASD), which includes autism, and found mutations in the gene in members of three families.
Reuters article here.

Grandin Doc on Google Video

Via MindHacks : a full length documentary on Temple Grandin is available at Google Video.
It looks like it originally aired on the BBC.

Kids Speak at Autism Awareness Assembly

This is an interesting idea, especially in light of the article I posted previously.

"[Amy] Shulman [special education teacher] liked the fact that her small group of autistic students, along with another class of students with mild intellectual disabilities, helped educate the "mainstream" students.
"We see the difference — it's making (other students) stop and realize they are a part of the school community." "

Create Rituals That Connect You

This article came at just the right time for me.

[It is from the Catholic Herald, so it has a Christian perspective.]

"Consider the child who likes his routine. Consider the child with autism, sensory integration, or other neurological challenges. The hullabaloo and the expectations of the season only accentuate the very real stresses that exist for these children."

"Stress sneaks up on us, and as a result we often don't even realize it's taking its toll. Kids never say, ‘Gee, Mom or Dad, I'm really hurting.’ Instead they throw tantrums, hit their siblings or the neighbor kids, forget their homework, start having toileting accidents... complain of headaches and stomachaches and refuse to sleep in their own bed or go upstairs alone.""And to make matters worse, 90 percent of their stress is tied to our own."Children sense our tension. We compound it with disruptions in routines, sleep deprivation, and all sorts of poor eating adventures. And, though we certainly don’t set out to, we put pressure on them, too. They know they are supposed to be happy and they are troubled when the party that is supposed to be fun is really very trying. They know they are supposed to behave especially well in front of Great Aunt Hilda and instead they have a total meltdown."

The essay also offers some good advice, like limit television, preserve nighttime rituals, make sure your children are getting enough sleep - stuff we know, but might forget during this busy time.

Now Available on DVD

"Mozart and the Whale" is now available on DVD. Full details at DVD Talk.

Stars: Josh Hartnett and Radha Mitchell.

Autism and the amygdala

This press release from the National Institute of Mental Health nicely summarizes some seemingly contradictory studies examining the size of the amygdala in people with autism.

Peer mentoring

A Saginaw, Michigan school system has set up a peer mentor programs for kids on the spectrum. Full article here.
"There are social skills that peers can teach and adults can't...These are the skills that are so critical in life, to get jobs and have relationships."
Also cool? Some mentors have siblings with autism. So they get to share what they know and be a positive influence. And this quote from the article really makes you think:
"I've given presentations to every grade level about autism and children have come up to me after each and said they hadn't known what it was," [Amy J.] Idzior, [ the district's autism coordinator] said. "They said they would have acted differently if they'd known. They seemed really sad and kind of disappointed in the adults for not explaining it before."

Congress Passes First Ever Autism Bill

In case you hadn't heard...
Congress passed the $945 million dollar "Combating Autism Act"

MSNBC says, "The focus? Everything from early diagnosis, to breakthrough treatments, to possible environmental factors that may cause autism."
More details from CNN:
"The Senate, acting a day after House passage, approved by voice legislation that authorizes $945 million over five years for autism research, screening and treatment. The bill, which goes to the president for his signature, would increase federal funding on autism by 50 percent.
The legislation provides the National Institutes of Health with a list of possible research areas related to autism spectrum disorder, including an examination of whether the alarming increase in autism diagnoses is caused by environmental factors."

Program for Middle Schoolers with Aspergers

An intermediate school in Staten Island, NY offers a program for 16 students with Aperger's. They attend classes with the general population, and have a room (nicknamed the "Tap Room")they can visit during the lunch hour if the cafeteria is too intense. The room also serves as a tutorial center and test taking site.
"The students with Asperger's share a paraprofessional between them, who is there largely to keep them focused and on track with the rest of the class. Their two District 75 teachers provide tutoring, homework modification, and other individualized needs in the Tap room, but the goal is to keep the students with their general education peers for as long as possible throughout the day. "

"Kathleen Boyer credits her 12-year-old son Declan's increased happiness and maturity on the fact that he's modeling himself after well-performing students while getting the behavioral support from teachers who are attuned to his needs.
[The teachers] understand that there are going to be things about school that are going to be rough for our kids, she said.
While the parents are thrilled with the program, they were, until recently, anxious about whether it would be expanded into high school, where there is currently no service that caters specifically to Asperger's syndrome.
The only other public school program on the Island serves eight children in kindergarten at PS 4 in Arden Heights with nestled classes, which integrates them with their general education peers.
Department of Education officials have given assurances that there will be a program for ninth graders beginning in September 2007, but they have yet to name a school to house it. "

One We Can Relate To

This brief article by columnist Julie Berry of the Metrowest Daily News (Massachusetts) gave me a chuckle, and may helped to remind me that my son really is trying hard to do his best.
" I keep believing that if we could just get him to focus more, to pay better attention, then he'd understand more. The capacity is in there somewhere. If only he'd apply himself ...
I've had to let go of thinking that if only he'd apply himself he'd catch up to his peers. It does him great injustice, because he does apply himself. He works himself raw trying to figure out how to get through a day. He marches through middle school doors each morning even though he can't navigate the social waters swirling around him. "

Newsweek Cover Story

The November 27th issue of Newsweek has a cover story entitled "What Happens When They Grow Up" with related articles as well.
Link to cover story here.
Related article on research into the causes of autism here.
Graphic: Unlocking the Secrets of Autism here.

Help for Picky Eaters

This article highlights the discomfort many children and adults go through this time of year when faced with situations involving foods outside of their very limited array of acceptable choices. It mentions two web sites that might be of some help:

www.empoweredparents.com/pickyeating/

www.PickyEatingAdults.com

Simon Baron-Cohen article in Seed Magazine

"...the idea that a child with autism is the result of the unique mixing of genes from parents who share a common feature sits uncomfortably with those who want to believe the cause of autism is purely environmental. But I believe the preliminary evidence in support of the theory warrants further research. We stand to gain valuable insight into the cause of autism; and given the links between autism and the capacity to systemize, a trait that has helped humans to dominate the planet, we stand to gain a better understanding of human nature."
Full article here.

Freakonomics Thread

I found it interesting that Steven D. Levitt, who co-wrote Freakonomics, decides not to weigh in on a question he gets asked often: "Why has autism gone up so much? Has autism gone up so much?"

You can see his post and an interesting Comments thread here.

Getting a Job When You Have AS

Program in England helps people with AS get jobs.

"Most of Judith Kerem's clients are excellent timekeepers. She says that they rarely take time off sick, are very dedicated to their jobs and are highly professional. Richard Bremmer agrees: "There are certainly advantages to having someone with Asperger's in the workplace. They are reliable, punctual, they are meticulous in their work and leave no stone unturned, they are very loyal, and all these things come as part of the package.
"There are so many young people with Asperger's, but many are ignored and not given a chance to succeed. But they can flourish and grow."

Full article here.

Kids with AS Join Lego Challenge

A group of kids with AS join a competition to create programmable Lego robots. They also learn how to work together. Sounds challenging but worth it!
" 'Legos generally are reliable,' said Karen DeCarlo, “They always go together.” She said both her her sons, Zachary, who has AS, and Nick, who has sensory-integration disorder, which leaves him easily distracted, love Legos.“There’s a huge amount of creativity with these kids, so I think Legos satisfy the need to create,” she said, but they also meet Zachary and Nick’s “need to conform to rules.”

“When they first started they were all little independent bodies,” DeCarlo said. Months later, there are still independent bodies running around the room in Arlington’s Langston Recreation Center, where the team has been meeting, but they also cluster into pairs and trios to work on different elements of the project, such as adjusting the robot’s programming on an Apple computer, tweaking the pusher arms of the robot itself, or calibrating a crane to receive its cargo of a dump truck and hoist it into the air. There are still clashes - with another personality, a recalcitrant Lego device, or simply with a difficult-to-negotiate world - but there is little notice paid to the outbursts. For the most part, the children allow one another to be themselves. “They seem rude,” DeCarlo said. “But they don’t offend each other.”She sees all of the children are learning valuable skills besides Lego construction. “They need to have social experiences: how to work together, how to solve problems, how to continue when someone has an anxiety attack.”Karen Gorman said she is learning too. “It’s been a really hard thing for the parents to pull back and let them do their own thing, let them make their own mistakes, let them fix their mistakes.”She said she’d tried to put her 11-year-old son Patrick on a soccer team, but it hadn’t worked out. Both she and Patrick had struggled to fit in with people who didn’t understand how Patrick’s behavior was altered by his perception of the world. “The level of anxiety is so much lower when we’re working in a group that’s so similar to each other,” Gorman said. “If one of our kids has a meltdown, it’s okay, we know how to handle it.”

Article here.

Asperger's on the Pop Culture Radar

New Nicholas Sparks novel features a character with Asperger's.

BU Launches Program for Students with Asperger's

Boston University has launched a pilot program to examine options for students with Asperger's Syndrome, an Autism spectrum disorder commonly overlooked on college campuses...The program, developed by BU Disability Services Clinical Director Lorraine Wolf in collaboration with the University of Minnesota and the University of Connecticut School of Law, will evaluate ways students with Aspergers can treat its symptoms.
Article here. [You may have to register with their site.]

"Know It's a Marathon, Not a Sprint"

This article is a nice, inspiring profile of two mothers who wrote a book about parenting children with autism. "Parenting Across the Autism Spectrum: Unexpected Lessons We Have Learned" by Ann Palmer and Maureen Morrell, shares the perspectives of one parent with a high functioning child and one parent with a child with severe autism.
" 'There's a tendency, especially nowadays, to branch off," Palmer says. "Parents of kids who are high-functioning feel like they don't need to be around those who are more challenged.
"That's a mistake.' "

Asperger Article in NY Times

The New York Times publishes an article on Asperger's [registration required - available for only a limited time for free]. The article appears in the Education section and covers efforts by various colleges to accomodate the needs of students with Asperger's. It's fascinating reading.
Here are some notable excerpts:

"Unable to navigate social intricacies, many such students once decided to forego college; or, isolated and depressed, they left before graduating. They bring a host of tricky issues to classrooms, dorms and the dating scene. “I can’t emphasize how difficult college is for these kids,” says Dania Jekel , executive director of the Asperger’s Association of New England. “Many are going to college and they really aren’t ready. We’ve had cases where a parent hasn’t known for an entire semester that the kid hasn’t attended class and is flunking every class.”

"Colleges are devising programs that try to integrate students on the spectrum into the academic and social fabric of the campus. The Essex campus of the Community College of Baltimore County, in a joint program with a state agency and a local school, has hired a special-education teacher to help students organize their time and assignments and improve the skills that are second nature to most, like how much space goes between two people in a conversation or how to make gentle eye contact.
At Keene State College, in New Hampshire, fellow students act as “social navigators.” Their assignment: change their charges’ “outsider” status by introducing them to their friends. The mentors get $10 an hour (and sometimes course credit in psychology) by helping students on the spectrum make small talk, date and get consent at every level of romantic advancement."

At Marshall University, the West Virginia Autism Training Center operates a program in which graduate students work daily with students with Asperger’s, reviewing assignments, helping with time management and teaching classroom etiquette. They take the students on field trips to Wal-Mart, to restaurants and to the movie theater to let them practice social skills. Bottom line for parents: $6,200 a year."

[Lisa] King [a disability specialist at the University of Minnesota] sees these interventions as “the minimum that we can do” for academically qualified students. Musing, she takes it a step further: “We would provide an interpreter to a hard-of-hearing person. Why don’t we provide an interpreter for somebody with Asperger’s?” And that’s not far from what some parents are seeking. One mother wanted her son to have 24/7 access to all staff and faculty, says Barbara Roberts, manager of M.I.T.’s disability services; the request was denied. Families of more capable students hire coaches — psychologists, speech therapists, specialed teachers and graduate students — for fees ranging from $30 to $100 an hour."

"“The Asperger’s population is much bigger than we think it is,” according to Larry Powell, manager of disability services at Carnegie Mellon. “But students aren’t disclosing that. It’s kind of like, if you build it they will come. If we could put together systems that would adequately support these students, word would get around and more students would disclose it and would come. One of my issues is that I am an office of one with 264 students.”"

Another Documentary

This one hour film is about a 28 year old New Yorker, and is made by his sister.

Documentary Film "The Boy Inside"

Canadian documentary filmmaker turns the lens on her own family to record her son's life with Asperger syndrome.
"Autistic author Temple Grandin notes that likely autistics include everyone from Mozart to Carl Sagan. "If you got rid of all of the genes that make autism and Asperger, we'd have a very boring world," she says in the movie. "A little bit of abnormality is needed."
Adds [filmmaker Marianne] Kaplan: "The halls of academia are filled with people with Asperger syndrome, particularly in the areas of math and the sciences. Adam can have a productive life. He talks. He communicates. He's in the world. He goes to school."
The problem is the disability is still often stigmatized by other students and even some teachers."

The film's website includes online forums where youth, parents and volunteers can share their thoughts.

Autistic Brain Has Difficulty Coordinating

Refreshingly jargon-free explanation of a current theory for autism:
"A growing number of scientists believe autism may be caused by a lack of coordination in the brain.
"Some people think that autism is a disruption of social function," says Marcel Just of Carnegie Mellon University in Pittsburgh. "But I think it's much more widespread. It's a disruption of many kinds of behaviors that require good cortical coordination."
For example, a conversation requires some areas of the brain to produce words. At the same time, Just says, other parts need to assess whether the listener understands those words. If those areas don't coordinate, there's no conversation.
Just says important skills require more than one part of the brain to work together.
"It's like the Internet," he says. "It's not one place. It's not Los Angeles. It's not Zurich. It's the network."

Michael Murias of the University of Washington presented a study on brain coordination. It compared 18 adults who have autism spectrum disorder with 18 typical adults.
All of them had electrodes attached to their scalps. Murias says the experiment itself was pretty easy: "We just instructed them to close their eyes and relax."
Then Murias and his team measured brain waves called alpha waves to see whether certain areas in the brain were communicating. In people with autism, they weren't -- at least not very well.
"The degree of communication within the brain was diminished," Murias says. "Particularly within the frontal lobes and particularly between the frontal lobes and the rest of the brain."
Murias says that's important because the frontal lobes are involved in so-called "executive functions," which help us recognize another person's intentions and avoid antisocial behavior. But only when the frontal lobes are connected to other parts of the brain.
In autism, the problem appears to be with the brain's connecting cables.
Those cables are contained in what scientists call white matter. Marcel Just, who has been studying white matter using a technique called diffusion-tensor imaging, says he's found that "the quality of the white matter is lower in autism. It's less coherently organized."

Responses to Paper on TV-Autism "Link"

Slate has been publishing comments posted by their readers (referred to as "The Fray") reacting to their staffer Gregg Easterbrook's articles on the possible link between television viewing and autism, here and here. Easterbrook trumpets the Cornell study linking tv watching to autism. Here are some interesting comments (they are listed on the Slate page after the date October 17):

Easterbrook consistently refers to the increase in autism that begins "around 1980, about the same time cable television and VCRs became common". If Easterbrook had done his homework he would have found that 1980 was also the year the diagnosis of "Autism" actually became a diagnostic entry in its own right in the DSM-III. It was reclassified from being part of "psychotic" disorders (like schizophrenia) to having a specific heading in "developmental" disorders. Furthermore, in 1980's the 'autism spectrum' (autism, PDD-NOS, and the newly-minted Asperger's syndrome) definitions were changed or created to include persons with normal range IQ, and less severe symptoms. All of these changes to diagnosis would significantly impact the makeup of the population called "autism spectrum disorders" (ASD)-- sometimes just called "autism" by the media. (to the confusion of many readers). All of these changes coincided with the increase in television-watching, but (am i going out on a limb here?) weren't caused by television. […]

And here's another:

Families that were early adopters of Cable were better off financially than families that did not get cable until years later. We know that middle and upper middle class parents are more likely to take their children to the doctor more often and to pursue possible health issues until they get an answer. In other words, having cable has NOTHING to do with CAUSING autism. It is simply something that financially secure families are more likely to have and those same families are more likely to get a diagnosis for their children.

Data Suggests Link Between Television Viewing and Autism

This one is sure to be controversial:

In a paper to be presented at a conference of the National Bureau of Economic Research, Oct. 20, in Cambridge, Mass., the authors reviewed data from the Bureau of Labor Statistics' American Time Use Survey on TV viewership rates among children and compared it with data from the National Climactic Data Center, which looks at the amount of precipitation communities receive. This analysis showed that children from rainy counties watch more television. When autism rates were then compared between rainy and drier counties, the relationship between high precipitation and levels of autism was positive.
"We tested our hypothesis using existing, well-known data," said Michael Waldman, a professor of economics at Cornell's Johnson Graduate School of Management and a co-author of the research paper. "The analysis shows that early childhood television viewing could be an environmental trigger for the onset of autism and strongly points to the need for more research by experts in the field of autism."

Broken Mirrors: A Theory of Autism

The November 2006 issue of Scientific American has a feature article on autism, focusing on mirror neurons.

Study: Mutated Gene Raises Autism Risk

Dr. Pat Levitt and colleagues at Vanderbilt University in Nashville, Tennessee, studied 743 families in which 1,200 family members were affected by autism spectrum disorders, which range from fully disabling autism to Asperger's syndrome.
They found a single mutation in a gene called MET, which is known to be involved in brain development, regulation of the immune system and repair of the gastrointestinal system. All of these systems can be affected in children with autism.
Full article here.

Michigan Student with Asperger's on NPR

In eighth grade, Josh wrote an essay about being different. His teacher liked it so much, she suggested he send it to National Public Radio for its series, "This I Believe." NPR liked it, too, so he gets to read his essay during the "All Things Considered" news show.
Article here.
Josh's essay, with a photo, is here.
I had to include this because my son is crazy for Godzilla - among other things - too.

NJ Plans to Shift More Early Autism Expenses to Parents

"For children with developmental delays, early recognition and quick help can make a lifetime of difference. But the state is proposing that some families pay thousands more for that help because the rising number of children in need have overwhelmed the budget.

The federal government mandates that states offer early intervention services for infants and toddlers -- from birth to age 3 -- with disabilities. The services are provided not only to children with autism, but to those with hearing impairments, mental retardation, cerebral palsy and a variety of other disorders that cause their development to fall behind.
The federal government provides some funds, with states and families making up the rest.
The problem is the need and cost have escalated dramatically.
Double the number of children -- 13,788 -- were referred to the New Jersey program in fiscal 2006, which ended June 30, compared with six years earlier. Each child referred is evaluated. As of July, 8,815 children -- including 932 in Bergen and 493 in Passaic -- were receiving services.
At the same time, the cost of services has increased to an average of $100 an hour. This year, the Legislature allocated $78 million, up from $22 million in 2000. But even with the budget increase, officials are anticipating a $13 million shortfall.

To help close the budget gap, lawmakers have directed that the share paid by families be doubled to $6 million a year.

The state Health Department is accepting comments on the proposal through the end of October.
Voice your opinion
The state is accepting written comments on the proposed increases in family contributions for early intervention. They can be sent to:
Terry Harrison, Part C coordinator
New Jersey Early Intervention System
P.O. Box 36450 East State St.
Trenton, NJ 08625-0364
Email: Terry.Harrison@doh.state.nj.us
Fax: (609) 292-0296
The comments should include: Name, title, address and telephone number, concerns or support about the proposal, and recommendations."
Full article here.
Additional information here.

Yes I Can! Award

Do you know a child or youth with a disability who has made outstanding achievements? Then nominate him or her for a ...
Yes I Can! Award
The Foundation for Exceptional Children established the Yes I Can! International Awards Program in 1981 to acknowledge the achievements of children and youth with disabilities; overcome barriers caused by public misconceptions; encourage children and youth with disabilities to seek their highest potential; and increase public awareness of the abilities, aspirations, and personal qualities of people with disabilities.

Deadline is November 20th. More information on how to nominate someone here.

Time to Give Up on a Single Explanation for Autism

"We argue that there will be no single (genetic or cognitive) cause for the diverse symptoms defining autism. We present recent evidence of behavioral fractionation of social impairment, communication difficulties and rigid and repetitive behaviors. Twin data suggest largely nonoverlapping genes acting on each of these traits. At the cognitive level, too, attempts at a single explanation for the symptoms of autism have failed. Implications for research and treatment are discussed."

Three psychiatrists have written an opinion piece arguing for researchers to look at autism as a more complex, less monolithic thing. Here is a cogent summary, courtesy of MindHacks, and here is the full-text of the article.

Effect of Maternal Age on Severity of Autism

This abstract from a newly published journal article about a recent study says maternal age does not influence the severity of autism.

Travels With Autism

This looks intriguing.

TRAVEL WITH AUTISM launches this October, providing a new concept for the autism community: vacations specifically designed for families with individuals with autism spectrum disorder. TWA's mission is threefold: (1) to provide an appropriate and safe vacation where families with individuals with ASD can simply have fun together (2) to provide an environment where multiple families with individuals with ASD can interact in a holiday atmosphere (3) to provide an opportunity for individuals with ASD to stretch themselves by learning new skills.

New CDC Study

The Centers for Disease Control have announced a $5.9 million study in six states to try to find the causes of autism.
The study, the next of the agency's promised initiatives to look more closely at the disorder, would look for factors that may put children at risk for autism spectrum disorders and other developmental disabilities, the CDC said.
It said 2,700 children aged 2 to 5 and their parents would take part in the five-year study. Researchers will look for infections or abnormal responses to infections in the child or parents, genetic factors, the mother's reproductive history, hormone levels, potential gastrointestinal problems in the child and other factors. Brief article here.

I briefly looked at the CDC autism site, which looks pretty interesting, but did not find any specific mention of this new study.

Author Claims Famed Seismologist Had Asperger's

Here is a profile of the author who wrote a biography of Charles Richter, of the famed earthquake measurement scale.
"People who knew him described him as a walking contradiction. The reason I'm sure in my bones that he had Asperger's (syndrome) is that it reconciles the apparent contradictions.
He wasn't unfriendly or uninterested in teaching. He yearned to connect with people and share his wisdom. He was just sorely lacking in social skills. He couldn't deal well with the give-and-take of a classroom situation or a scientific conference. But he was in his element when a reporter asked a question and he was free to expound. The experts will tell you that such stiff, one-sided, pedantic conversations are a classic hallmark of Asperger's."

ASPEN NJ Fall Conference

ASPEN® FALL 2006 CONFERENCE
CREATING OPPORTUNITIES AND FOSTERING SUCCESS IN CHILDREN WITH AUTISM SPECTRUM DISORDERS
Friday, October 27, 2006 8:00 a.m. to 4:00 p.m. Hilton Woodbridge 120 Wood Avenue South Iselin, NJ
Our internationally recognized Speakers and Topics:

Robert B. Brooks, Ph.DHarvard Medical School
"The Power of Mindsets: Nurturing Motivation, Self-Esteem and Resilience in Children with Asperger Syndrome and Related Disabilities"

Michael D. Powers, Psy.D.Yale Child Study Center
"Educating Individuals with Asperger Syndrome/PDD-NOS/High Functioning Autism: Recognizing Opportunities and Meeting Challenges in Middle and High School"

To register and for more information please see http://aspennj.org/