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/

What Remains

Singer/song writer Jamie Manning has an album of songs called "What Remains" that tells the stories of parents raising children with autism. You can find out more about it and hear song clips here.

Warning - these songs might make you cry. They are heartfelt and beautiful. I was particularly moved by his version of "The Water Is Wide". When I took my son to Music Together classes, we used to sing this song and it always gave me a lump in my throat. I think it has special meaning for parents of a special needs child. Manning has also added his own extra lyrics to his version.

Chelation Study

Here is more detailed information on the chelation study being done by the National Institute of Mental Health.

Gene Mutation Study

New study on nerve cell gene mutation in people with autism.

Can This Marriage Be Saved?

This situation probably rings true for many.

New NY Law

A new law protecting autistic patients in NY state from insurance discrimination was enacted on Thursday.
"State regulated insurance companies who provide coverage for hospital, surgical, or medical care will now include coverage for diagnosis and treatment of medical conditions otherwise covered by the policy solely because the treatment is provided to diagnose or treat autism, according to the law. In addition, autism will now be classified as a physical condition rather than a mental disorder."
Brief article here.

Article Series on Autism

The Bergen Record has put together a series of stories on autism. It includes a link to the CDC report on autism in Brick Township, NJ.

Toy Guide

Toy guide available at Toys r Us for parents of kids with autism.

I think this is the online version of the guide. The National Lekotek Center helped them put it together.

Fox's "House"

This week's episode of "House" will feature a plotline involving a ten year old autistic boy.

New Studies Announced

The National Institute of Mental Health has announced the start of three new studies on autism:
*One study will define differences--both biological and behavioral--in autistic children with diverse developmental histories.
*In another study, NIMH researchers will examine the use of the antibiotic minocycline to measure its usefulness in treating regressive autism.
*The third study seeks to address the widespread but unproven theory that autism may be treated successfully by chelation therapy, which seeks to remove heavy metals from the blood.

Low Cholesterol Linked to Some ASDs

News of a study which found that a small subgroup of children with ASD have abnormally low cholesterol levels (hypocholesterolemia), leading researchers to believe cholesterol may play a role in the cause of some cases of the disorder. The children's low cholesterol levels were apparently due to a limited ability to make cholesterol.

Free Online Conference

Awares (this is a Welsh organization) is offering its second annual free online conference. A list of topics and speakers has been posted here.

Paternal Age May Play a Part in Autism

This article has some specific details about a recent study of more than 300,000 men and women reporting for the draft in Israel. It found that men in their 40s are nearly six times more likely than men in their 20s to father children with autism spectrum disorders.

Back to Work

Apologies for the paucity of posts of late. Work was hectic, and some minor family emergencies got in the way.

Teen with Asperger's Tops in Lacrosse

California teen Austin Green won the National Lacrosse League's Scoop n' Shoot timed skills competition in Buffalo, N.Y. He beat out hundreds of other young men ages 12 to 14 from across the country by making six shots in the fastest time: a speedy 17 seconds.
Article here [site registration required].

Profile of Gary Numan

The singer of the 1979 hit "Cars" has Asperger's.
While Numan was having his artistic woes, bands like the Smashing Pumpkins and Foo Fighters were covering his songs and Nine Inch Nails and Marilyn Manson were citing him as an inspiration. He was also diagnosed with Asperger's syndrome, a neurobiological disorder named for Hans Asperger, who studied young boys with normal intelligence who exhibited autistic-like behavior and insufficient social skills. People with Asperger's have a normal IQ and many exhibit exceptional talent in a specific area.
"I realized there was a reason for the way I see the world, which was a relief," Numan says. "I'm more comfortable around machines than people. When I was younger, there were a lot of misunderstandings because I didn't know how to deal with people. I'd do something that was perfectly understandable to me, but people found it offensive. Finding out I had a condition let me focus on what I was doing that annoyed people and helped me change the way I relate, even if I had to learn the new behavior in a mechanical manner."

Free Lecture Series

In New Jersey:
The Developmental Disabilities Lecture Series is a community and continuing education program provided for Division of Developmental Disabilities staff, community provider agencies, people with disabilities, and family members to enhance their knowledge and skills in innovative approaches and state of the art practices for people with developmental disabilities. A variety of topics are offered each fall and spring.
More info here.

Study Suggests Autism Affects Entire Brain

From ScienceDaily:
A recent study provides evidence that autism affects the functioning of virtually the entire brain, and is not limited to the brain areas involved with social interactions, communication behaviors, and reasoning abilities, as had been previously thought. The study, conducted by scientists in a research network supported by the National Institutes of Health (NIH), found that autism also affects a broad array of skills and abilities, including those involved with sensory perception, movement, and memory.
The findings, appearing in the August Child Neuropsychology, strongly suggest that autism is a disorder in which the various parts of the brain have difficulty working together to accomplish complex tasks.
The study was conducted by researchers in the Collaborative Program of Excellence in Autism (CPEA), a research network funded by two components of the NIH, the National Institute of Child Health and Human Development and the National Institute on Deafness and Other Communication Disorders

Something to Share With Teachers

Ten Things Your Student With Autism Wishes You Knew

"The last word: believe. That car guy Henry Ford said, “Whether you think you can or whether you think you can’t, you are usually right.” Believe that you can make a difference for me. It requires accommodation and adaptation, but autism is an open-ended disability. There are no inherent upper limits on achievement. I can sense far more than I can communicate, and the number one thing I can sense is whether or not you think I “can do it.” Expect more and you will get more. Encourage me to be everything I can be, so that I can stay the course long after I’ve left your classroom."

Model School Program Gains Attention

"A collaboration [in Pennsylvania] among Neumann College, Ellyn Institute, and the Wallingford-Swarthmore School District (the NEW-S project) is attracting national attention. For a full year, the three institutions have been working together to meet the needs of special education students, especially those with autism spectrum disorder (ASD), in two public schools. Recently, members of the NEW-S team presented their work at the 2006 National Autism Conference in State College.

The resulting collaboration brought public, private and higher education together in a project that provides not just abstract consultation and advice, but daily on-site classroom support for ASD students at The Kids Place (the W-S district-wide kindergarten center) and Swarthmore Rutledge School. A NEW-S team member is present every day of the school week in different classes to observe students, create learning strategies, and serve as a resource for school district personnel, who provide language and speech therapy, occupational therapy, physical therapy and social skills training in addition to the regular elementary curriculum.
Groups at both schools hold regular meetings to implement adjustments to individualized educational plans and review progress toward identified goals.Feil calls NEW-S "a landmark program" because of the scope of services (20 children with special needs at the two schools), the significant amount of in-service training provided for faculty and staff during the summer of 2005, and the daily presence of a team member in the schools."
Full article here.

Ultrasounds and Brain Development

Here is an article in USA Today reporting on a study that suggests that ultrasound waves can affect fetal brain development.

"[Pasko] Rakic's paper said that while the effects of ultrasound in human brain development are not yet known, there are disorders thought to be the result of misplacement of brain cells during their development.
"These disorders range from mental retardation and childhood epilepsy to developmental dyslexia, autism spectrum disorders and schizophrenia," the researchers said.

In Rakic's study, pregnant mice were exposed to ultrasound for various amounts of time ranging from a total exposure of 5 minutes to 420 minutes. After the baby mice were born their brains were studied and compared with those of mice whose mothers had not been exposed to ultrasound.
The study of 335 mice concluded that in those whose mothers were exposed to a total of 30 minutes or more, "a small but statistically significant number" of brain cells failed to grow into their proper position and remained scattered in incorrect parts of the brain. The number of affected cells increased with longer exposures."

Founder of BitTorrent Has Aspergers

Here is a profile of Bram Cohen, a 30 year old computer whiz who also has Asperger's.

Read it just to savor the fact that the article treats his Asperger's as just one part of who he is, not the entire part. And no mention of "suffering" or "affliction".

Families Online Columnist

Families Online welcomes new monthly columnist Christopher Auer, author of Parenting a Child With A Sensory Processing Disorder. Auer's column is called "Exceptional Families With Exceptional Kids. His first column talks about back to school anxiety -- for parents, as well as children, and offers some concrete advice for starting the year off with clear communication between families and schools.

Labels - "Asperger's" or "Specialized Mind"?

Thought-provoking article on Mel Levine.

Here are some choice bits:

"At the very least, kids with specialized minds deserve toleration and support. And what we find, is, very often their strengths are being neglected while everybody tries to plug up holes or leaks in their minds. And that's a shame because when they grow up they are going to make a living on their strengths."

"I think the labels can be a self-fulfilling prophecy -- if you decide you are pathological, you can become increasingly pathological."

"I'm very controversial," Levine said, "which is what I always wanted to be. They disagree with me. There are several complaints about me -- the most common is that Mel Levine is right in all of his thinking and he's totally impractical. Schools need labels and insurance companies need labels and we have to lump kids together so we can do research on them."

NJ Eases Rules to Fill Special Education Jobs

The old state code required teachers to have six credits in special education courses before they could be eligible for special education certification and begin to teach special education students.But with a statewide shortage of special education teachers, many school districts were instead asking the state for emergency certifications to allow the teachers to begin teaching before they complete the courses.The new code allows the teachers to begin teaching special education students and enter the alternate route special education certification program simultaneously. State officials said that eliminates the need for emergency certifications and assures that the teachers are taking the required coursework while they teach.

Full article here.

No Link Between Month of Birth and Autism

Study debunks birth season-autism link.

"...the season in which a person is born reflects their exposure to certain types of infectious agents in the womb. An example is whether their mother caught the flu during flu season. Nutrition could also vary throughout the year, he added.

snip

[Dr. Abraham Reichenberg of the Mount Sinai School of Medicine in New York City and colleagues] looked at Jewish men and women born in Israel during the early 1980s who were assessed by the Israeli Draft board at the age of 17. There was a total of 311,169 people, including 211 with autism or related disorders.

The researchers point out that a person with autism in the group they evaluated would be likely to truly meet diagnostic criteria for the condition, especially since the individuals in the study grew up in an era where the diagnosis of autism was much more rare than it is today.
The researchers found no link between the month a person was born and autism risk. "In light of the present and other recent findings, it would seem logical that future attempts to identify an association between birth months and risk for autistic spectrum disorders should be exercised with caution," they conclude.
SOURCE: American Journal of Psychiatry, July 2006."

Cambat Autism Act

The Combat Autism Act passes in the U.S. Senate. Next stop - The House.

Study: Different Genes May Cause Autism in Boys and Girls

News from Science Daily on a study from a team at the University of Washington, headed by Gerard Schellenberg:
" "It is highly unlikely that there is only one gene responsible for autism," said Schellenberg. "There may be four to six major genes and 20 to 30 others that might contribute to autism to a lesser degree.
"If an individual only gets three high-risk variants of these genes, it could mean a less-severe form of autism. And because autism is rarer in females, it may take more risk genes for a female to have autism. There also is the possibility that there might be a biological difference in autism for females versus males," he said.
"What is meaningful is that we have found evidence for two genetic subtypes of autism, male versus female and early versus late onset," added Geraldine Dawson, a professor of psychology. "This is a critical piece of information. With Alzheimer's disease research, one big breakthrough was segregating the late and early onset forms of the disease, and this led to important genetic discoveries."
-snip-
The search for autism genes is part of a long-term Autism Center effort to uncover the genetic and neurobiological causes of autism. To find regions of the human genome that contain autism genes, the researchers scanned the DNA of 169 families that had at least two siblings who met the strict criteria for autism. They also scanned the DNA of another 54 families that, in addition to having individuals with strictly defined autism, also included members who had less severe forms of the disorder, such as Asperger syndrome.
"We have been working almost 10 years to get to this point," said Schellenberg. "If we can find and confirm that a particular gene is involved in autism the field will explode. We have to find a gene so that molecular biology can be defined and we can understand what's inside autism. Until that happens, we are dancing on the outside." "

Please also note the following:
The research is part of the National Institute of Child Health and Human Development Collaborative Program of Excellence in Autism. The research is ongoing and families who have more than one child of any age with an autism spectrum disorder who are interested in participating in the UW genetics study can call toll free 1-800-994-9701.

Paper on Educational Interventions for Students with Asperger's

This paper reports on a study that looked at how children with Asperger's are educated in southern New Jersey.
A sample of 12 students ranging in age from 8-13, was drawn from 9 public schools and 3 private elementary schools in the South Jersey area. Findings of the study indicate that a small teacher to student ratio was the most successful form of academic intervention, while the behavior modification system in conjunction with positive teacher attitudes was the most successful form of behavioral intervention. Successful forms of social skills intervention were sparse, which indicates a need for further exploration in that area. The report closes with teaching recommendations.

Autism Info on Rice Krispies Boxes

This post at Mind Hacks reports on an Autism Speaks campaign that is putting information about autism sympotoms on cereal boxes.

See Autism Diva's take on it here.

Autism Lit

On the surface, this essay is an overview of recent books written mostly by parents about their children with autism. But it is also a criticism of many of the popular "causes" and "cures" for autism. I know it is sure to be controversial, and I usually try to stay out of this fray. But I think the essay is worth reading, no matter which side of the "war" you are on. It pains me to see parents of children with autism divided over these issues. We should be sharing our insights, resources, laughter and tears and the political infighting reduces us all. The last two paragraphs say it so well:

" 'Acceptance is all’ writes Charlotte Moore, whose account of her two autistic sons George and Sam has recently been republished in paperback. Perhaps this is why that, of all the parental accounts, hers is the one in which the children themselves emerge most vividly as personalities, as children with autism rather than as the autistic children of parents preoccupied with their own predicament. Acceptance does not mean falsely celebrating the different individuality of the autistic child, nor does it mean adopting a fatalistic posture that nothing can be done. But it does mean parents and others accepting and loving the autistic child as another human being, and it means accepting that the quest for a miracle cure is not likely to be helpful for their autistic child, for any other children they might have (Ollie and Daniel, like Joe and George and Sam, and my son, all have long-suffering siblings), or for themselves.
Parents feel sadness and anger when their child is diagnosed as autistic, but in time they usually stop railing at the world and direct their energies into strategies that will benefit their child and their families. Campaigns that channel parents’ energies into the pursuit of wonder cures, or into futile confrontations with doctors, scientists or other professionals, or into litigation over vaccines, offer illusory hopes - and targets for blame and recrimination. At best they divert and dissipate already overstretched parental energies. At worst they encourage an enduring rage that is likely to compound family difficulties, to intensify isolation and lead ultimately to demoralisation. "

Brain Differences

From Science Daily:
Researchers at the University of California, Davis, M.I.N.D. Institute have discovered that the brains of males with autism have fewer neurons in the amygdala, a part of the brain involved in emotion and memory. The study, published in the July 19 issue of the Journal of Neuroscience, is the first neuroanatomical study to quantify a key difference in the autistic amygdala. David Amaral, research director of the UC Davis M.I.N.D. Institute, and former graduate student Cynthia Mills Schumann counted and measured representative samples of neurons in the amygdala of nine postmortem brains of males who had autism and 10 postmortem brains of males who did not have autism. "

Here's how they got the samples:
“Back when these studies were conducted, it wasn't easy to acquire the brain of a deceased person who just had autism,” Amaral explained. “We are fortunate now to have the Autism Tissue Program, funded by the National Alliance for Autism Research and the National Institutes of Health. With their help, we were able to analyze more than double the number of previously examined postmortem brains, none of which had seizure disorders or any major neurological disorder other than autism.”

This is just the tip of a rather large iceberg:
“We're in the very early stages of understanding autism and its neurological pathologies. It's clearly a process with many steps, and at least we are now one step further...One possibility is that there are always fewer neurons in the amygdala of people with autism. Another possibility is that a degenerative process occurs later in life and leads to neuron loss. More studies are needed to refine our findings,” said Schumann.

Full article here.

Lakewood Blueclaws

August 12 will be Autism Awareness Night at the Lakewood Blueclaws game in Ocean County, NJ.

Born On a Blue Day

"I always knew I was different from other children, but it was not until I was eight or nine that I was aware of being lonely. I used to long to be normal but, because I tend to break things down, my sense of self was thousands of fragments of memories that I was trying to piece together. "

Autistic savant writes a memoir. This book has just been released in the United Kingdom and is not due out in the United States until January 2007.

PDD-NOS Diagnoses

This news wire article refers to a study in the Archives of General Psychiatry which reports that many young children first diagnosed with less severe conditions -- called pervasive developmental disorder not otherwise specified (PDD-NOS) and autism spectrum disorder (ASD) -- later have their diagnoses changed to autism.

"The researchers...followed 192 children referred for evaluation for possible autism before 36 months of age, plus 22 children with developmental delays between ages 13 and 35 months. At age 9, 172 of these children were available for reevaluation.
According to their report in the Archives of General Psychiatry, the researchers found that at age 9, most of the changes in diagnosis were "associated with increasing certainty of classifications moving from ASD/PDD-NOS to autism."
More than half of those initially diagnosed with PDD-NOS later met the criteria for autism, Lord's team indicates. Conversely, only one of 84 children diagnosed with autism at age 2 years was found to not have the condition at 9 years of age."

Autism Movement Seeks Acceptance, Not Cures

"I love the way my brain works, I always have and it's one of the things I can now admit to myself. I like the way I think in terms of numbers. I like the way I visualize things. I like the way most especially that I can bury myself in work that I love to a degree that makes everybody else in the world look at me and go, 'God! I wish I could do that.' No, I am not changing anything."

Nice, in-depth article from National Public Radio.

At the Movies

An editor at Entertainment Weekly shares a brief story about taking his children, one of whom has an ASD, to the movies. (I think a lot of us can relate to this - although my son really likes the movies, he always insists that we leave before the credits roll. For some unfathomable reason, he cannot stand to see that slow crawl of names.):

"Sue and I figure that now's as good a time as any to try a movie, and Cars is supposed to be pretty good. (Also, Finding Nemo is Sophie's favorite movie — actually, the only movie she'll watch the whole way through, repeating her favorite lines over and over — so maybe Pixar is our lucky charm.)
We shuffled into the theater a little early, thinking that walking into a pitch-black room might be too sudden a shock for the kids. We grabbed four seats in the last row, prepared to dash if it wasn't going well. No popcorn: didn't feel like Heimlich-ing my kids for the first time in a movie theater.
We were set, ready to go. The movie started...and Sophie couldn't have cared less. A few minutes in and she hopped off her chair, climbed onto Sue's lap, and sort of retreated into her own world. And she wasn't quiet about it either, snatches of dialogue from her favorite TV shows coming fast and furious.
She wasn't ready for the movies, as we sort of expected. But, to our surprise, Luc was..."

Test Could Spot Autism at Birth

I'm back from vacation - very busy at work, so posting may be spotty for the next several weeks. This article is making the rounds.
"Previous studies noted the presence of "trophoblast inclusions" -- an indicator of cellular abnormality -- in the placenta as a marker for Asperger Syndrome, an Autism Spectrum Disorder (ASD). Researchers at the Yale University School of Medicine studied the placentas of 13 children diagnosed with ASD to determine if there was a similar marker.
Compared to the placentas of 61 healthy children, the 13 placentas of Asperger-affected children were three times more likely to have trophoblast inclusions, the Yale team found.
"We knew that trophoblast inclusions were increased in cases of chromosome abnormalities and genetic diseases, but we had no idea whether they would be significantly increased in cases of ASD," study author Dr. Harvey J. Kliman, research scientist in the department of obstetrics, gynecology and reproductive sciences at Yale, said in a prepared statement. "These results are consistent with studies by others who have shown that ASD has a clear genetic basis," Kliman said.
Results of the study are published in the June 26 online issue of Biological Psychiatry. The researchers said they expected to further examine the presence of trophoblast inclusions as an indicator of ASD in future studies, with a larger study base and more in-depth analysis."