Dan Swearingen | September 11, 2009

Janet and I are presenting a mini workshop “Preparing our Teens to Work” this weekend at the CONNECTING PEOPLE TO RESOURCES resource fair tomorrow at Dominican University in San Rafael.

Besides the mini workshop we will be manning a table displaying some student projects and information about Autistry Studios. Several Autistry Studios parents and students have volunteered to man the table when Janet and I can’t be there.

Hope to see you there and we’ll take lots of pictures and post a report later this weekend.

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Dan Swearingen | August 23, 2009

At one point we considered a service dog for Ian. Mainly, we saw a dog as a way to facilitate Ian interacting with peers. The idea is that kids are attracted to the dog and talk to Ian while petting the dog. As Ian spent more time in mainstream classrooms we saw that he gets pretty good social traction on his own so we ended up not getting the dog. With the late-teen years looming we may revisit this decision.

Schools vary on their policies around service dogs. Since they are sometimes seen as merely a “comfort” and not an essential like a seeing-eye dog for the blind some schools forbid service dogs and some parents have had to take their schools to court.

See Schools fight families over autism service dogs

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Dan Swearingen | August 21, 2009

While being introverted and liking time alone is very common for people with ASD that does not mean they have no desire for friends or social interaction. When they do actually want social time with peers they can find it particularly awkward and stressful.

AP Science Writer Alicia Chang has posted a great article today:  Autistic teens master social cues, find friends about a program that focuses on teaching autistic teenagers “social scripts” they can follow to interact more effectively with peers.

For Andrea, this pizza date is the ultimate test.

The bell rings. The door opens. Can she remember what she needs to do?

More important, will she make a friend?
Even for socially adept kids, the teen years, full of angst and peer pressure, can be a challenge.

“A lot of our kids need a tune-up. They need new skills to help them survive in their new social world,” said clinical psychologist Elizabeth Laugeson of the University of California, Los Angeles, who runs a 3 1/2-month friendship program for high-functioning autistic teens like Andrea.

In our work at Autistry Studios our approach is to start with each student’s creative interests and launch appropriate independent projects with groups of no more than four students. Over time the students learn about what the other students are doing, talk and help each other with the instructors only facilitating and modeling appropriate interactions and providing hints when the students are suffering any form of miscommunication.

The students become extremely comfortable with the format and while a student certainly could work an entire session without talking to anyone but an instructor — they ALWAYS gravitate to each other and talk about their interests and show each other what they are doing.

Through successful experience with more “adult” work-like, college-like situations we see the students gain the confidence to apply for jobs, try out some college courses, and also be more handy around the house.

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Dan Swearingen | August 20, 2009

There is a really good, huge article by Cintra Wilson in the September 2009 issue of O, The Oprah magazine titled An Inconvenient Youth: Raising Children with Autism

“I used to eat myself alive about how much money or time I was spending with Padraic,” says Heather, who has three other children. “You know that if you spend 24 hours a day with this kid, drawing him out of his inwardness, you’re going to make a difference. Ninety percent of my self-torture has come from not doing floor time with him because I’m making dinner. I’ve spent most evenings on the floor of my kitchen in tears.… There’s never enough you can do. Ever.

“It’s the old proverbial story,” she continues. “If a car fell on top of your kid, a mom would be able to lift it off.”

“The superhuman kicks in,” Erin agrees. “But it’s years of trying to lift that car.”

“And you can’t,” says Heather. “And everyone’s sitting on top of the car trying to hold it down. That’s the way it feels.”

“And you get tired,” says Corinda.

“Pretty soon you realize the car is on top of you,” says Erin.

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Dan Swearingen | August 1, 2009

As a parent of an autistic child you find that you read reporting on autism at several levels.

On July 6, the LA Times reported on the case of Joshua Fry: Case of autistic Marine brings recruiting problems to the forefront

Lots of info and questions raised a relatively short story:

1. Are the Marine recruiters under such pressure that they’ll accept anyone?

2. Should autistics try living in the military?

3. The staff at the Recruit Depot worked with Joshua and he PASSED boot camp (no small accomplishment!).

4. Joshua completely failed subsequent training — ending up in the brig on various charges.

Nearly 30 years ago I passed through Marine Corps recruit training. I hated the structure (near as I can tell you’re supposed to) but I appreciated its predictability and the clear direction it allowed. Follow orders — you succeed. Do otherwise — you fail.

After boot camp, I was not a very successful Marine. People often ask what rank I attained. I usually answer “I made Lance Corporal a couple times.” People with service experience laugh and get it immediately: I was a f#@k-up who got rank but was busted to private for infractions and had to re-earn my rank.

I learned lots of useful skills in the Marines. The most important were that a group is more powerful than an individual, success comes from dogged persistence, and you are capable of far more than you can imagine if you just keep pushing (or are being pushed!).

Another lesson the article about Joshua reminded me of was that in highly structured situations, people with ASD do very well. Often indistinguishably from “normal” people.

The Marine Corps is able to impose structure on their recruits through a spectrum of incentives and controls: Group cohesion, logical argument, yelling, “incentive training” (punitive exercises like 100 push-ups), and the nearby brig.

Usually the recruit finally learns “I will do what they tell me because I do not want to spend a week in the brig.” In my time something like 10-15% of recruits washed out. We had two suicide attempts in my platoon alone.

If ASD kids and people can succeed with the help of structure, how can we best add that to their civilian lives? What do we do when the “recruit” says “no?”

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Dan Swearingen | July 7, 2009

One of the core values of Autistry Studios is that the students’ interests are the key to their growth and the foundation of our work.

People with ASD can have extremely intense interests — so intense and obsessive that parents and caregivers can feel they need to treat them as perseveration. However, those compelling, obsessive interests are places you can reach and teach your children.

Our son Ian loved Thomas the Tank Engine wooden trains. Shortly after Ian was diagnosed low-functioning Autistic (he was three years old) we went out and bought a set of the wooden Thomas trains.

Everything.
All of it.
Name it — we had it. Probably thousands of dollars worth.

I know I was so upset and frantic to DO SOMETHING that buying felt like doing. We set up the special table in the living room where you’d normally have a coffee table and I glued down a loop of track so he would not get frustrated when the track would move and Ian started to play with it.
Round and round.
Different trains, different cars.
For hours…

… and hours.
Hour after hour.

No eating.

No sleeping.

Had we done the right thing? Should we stop him? How would we take it away? Was he going to starve?

To our immense relief, he finally stopped. The play got calmer. He took his meals sitting on the couch — near the trains. He would watch Thomas videos on the TV nearby and he started acting out the shows with his corresponding toy trains.

Despite being largely non-verbal, Ian started to talk and reenact the conversations between the trains. At night he would set out the trains on the dresser near his bed facing him and in the morning he’d carry them in to the train table and continue their adventures.

Over time Ian played with the trains less but he started to build huge networks with the train track all over the living-room which evolved to being local roads and freeways — not tracks (there are not many real trains around where we live). We bought those trains eleven years ago. Ian is now very verbal and has far outgrown his original diagnosis.

Janet and I are strongly convinced that the right move was to engage Ian’s obsession — not to fear or avoid it but rather enjoy and admire it. We continue this approach today with Ian and with the students we work with.

Lisa Jo Rudy has a similar discussion at her About.com column in Harness Autistic Special Interests for Success

Boing Boing article Do autistic kids especially like Thomas Tank Engine?

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Dan Swearingen | June 18, 2009

Are many of the issues we identify as part of Autistic Spectrum Disorder really just typical male or typical teenager/young adult behavior? Emily Bracken recently posted an article at the Huffington Post Asperger’s Syndrome (AS) Or Typical Male Behavior (TMB)?

Now, I don’t mean to belittle those with Aspie -as it’s known in the lay-community, but to me, these “symptoms” sound a lot like the characteristics of your average, red meat-eating American male.

As I read Bracken’s article I was intitially irritated and then increasingly amused because she actually identifies some painful truths. When we meet with others and discuss our experiences with ASD I almost always hear back:

“But *I* (“normal” person speaking) do [insert ASD behavior] too.”

Which carries the obvious unspoken:

“And *I* am not handicapped by this behavior — so what’s the problem??”

Bracken’s article is doing the same thing, point by point.

Bad social skills?
Poor listeners?
Intense focus on things or activities (or work) at the expense of relationships?
— Typical Male Behavior (I add: Typical Teenager Behavior.)

This is funny because it is painfully TRUE.

It is a question of degree and success

Here’s the thing: Typical Male Behavior is SUCCESSFUL. It is rewarded. the guy gets the girl. The guy gets the promotion. The guy builds a company.

When someone has ASD what we are talking about is how these behaviors occur to an extent and in a way that they cause the man or woman to be completely UNSUCCESSFUL.

To me the most painful thing about ASD is that it very often causes complete failure in the very things the person with ASD may want the most and in areas the person clearly has talent.

These failures are not only painful for the person with ASD but these failures in areas where the ASD person clearly has interest and talent are what family members, teachers, and friends find the most frustrating and confusing.

A person with ASD may love drawing or painting or building things but cannot manage to complete (or even start) any real work.

A person with ASD may feel very lonely but is unable to initiate or negotiate healthy relationships.

Autistic Spectrum Disorders are real, they cause real failure and real unhappiness.

“But, ASD is just a label. Surely you just need to try HARDER and everything will be fine.”

ASD *IS* just a label but it gives you insight into where the difficulties will lie and where you should push to be the most sucessful.

I like to think of ASD as a fortess around the mind. The ASD diagnosis gives you a diagram of where the walls will be thickest — where you will be wasting your time. The ASD diagnosis also tells you where you can push and gain entry and make progress.

We have always felt that the student’s interests are the best place to make progress and work hard. The students WANT to succeed at what they love doing.

Our attitude in our work with teenagers and young adults with ASD at Autistry Studios is that focusing on gaining success in the activities where the students have interest and talent is the path toward happiness and success.

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Dan Swearingen | June 15, 2009

David kirby in Huffington Post comments on Rep. Carolyn Maloney (D-NY) and Rep. Christopher Smith’s (R-NJ) calls on HHS to fund comparative studies on vaccinated vs. un-vaccinated children but i think the most interesting part of the article is tacked on at the end:

Seven studies to watch

APPROVED STUDIES:

1) The National CADDRE Study — This 5-year project of the CDC’s Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Network will “help identify what might put children at risk for autism,” the CDC says. Among those risk factors: “specific mercury exposures, including any vaccine use by the mother during pregnancy and the child’s vaccine exposures after birth.”

2) The National Children’s Study – This HHS-EPA joint effort will investigate “the effects of environmental influences on the health and development of more than 100,000 children across the United States,” including autism. As part of their work researchers will track medical records, including vaccinations and their impact on neorodevelopment.

3) The Early Autism Risk Longitudinal Investigation (EARLI) – This network of NIH agencies (NIEHS, NICHD, NIMH, NINDS) and affiliated sites will follow 1,200 pregnant women who already have a child with autism, to identify the “earliest possible environmental risk factors and their interplay with genetic susceptibility during the prenatal, neonatal and early postnatal periods.” Potential risk factors in the study include vaccines, thimerosal, and heavy metals.

RECOMMENDED STUDIES

On June 2, 2009, the Federal Government’s National Vaccine Advisory Committee voted unanimously to recommend a sweeping list of vaccine safety studies, including four related to vaccines and autism. The CDC had previously proposed studying autism as a “clinical outcome” of vaccination, and NVAC concurred. The document can be viewed at:

4) Study the Feasibility of Comparing Vaccinated, Unvaccinated and Alternatively Vaccinated Children – NVAC recommended asking an expert panel, such at the Institute of Medicine, to weigh in on the strengths, weaknesses, ethical issues and costs of studying and comparing vaccinated, unvaccinated, and “alternatively vaccinated” groups of children for a number of disorders – including autism. Prospective clinical trials, where children would be randomized into vaccinated and placebo groups, would be unethical.

But NVAC suggested one publicly submitted idea to conduct an “observational study” looking at, “natural variation in vaccination schedules, including some children where vaccination is declined through parental intent.”

5) Study Vaccine-Mitochondria-Autism Links – “Recent developments around mitochondrial dysfunction reinforce the importance of studies of vaccine adverse events in rigorously defined subsets of the ASD spectrum,” the NVAC wrote. The rate of mitochondrial dysfunction in autism has been estimated at somewhere between 7%-to-30% of all ASD children. “Mitochondrial dysfunction carries an established risk of brain damage subsequent to infectious disease,” the NVAC wrote. “Thus, a small and specific subset of the general population (such as those with mitochondrial dysfunction) may be at elevated risk of reduced neurological functioning, possibly including developing ASD, subsequent to live virus vaccination.”

6) Study Vaccines and Regressive Autism – “In the context of vaccination research, the ASD clinical subset of particular interest is regressive autism” the NVAC wrote. Estimates of ASD regression range from about 15 to 50% of all ASD cases, depending on the definition used. “Regressive autism does fit the recommendations of the IOM (immunization) committee for further research in rigorously defined subsets of ASD,” the NVAC said. Such studies might entail, “prospective vaccination response profiling in siblings of children with regressive ASD, a subpopulation who are at higher risk.”

7) Study Vaccine Injuries and the Risk of Autism – Another autism subpopulation that should be included in vaccine studies is what the NVAC called “the intersection of ASD cases with (clearly defined vaccine outcomes) such as fever, febrile seizure, or hypotonic-hypo-responsive episode (HHE).” Do these adverse effects correlate with ASD? “It would be worthwhile to assess,” the NVAC wrote. “On a molecular level, it might be feasible to compare ASD cases with history of adverse events following immunization against cognitively normal controls with a similar history of adverse events, to assess whether there are significant differences in immune response profiles between groups.”

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Dan Swearingen | June 9, 2009

United States Senator Kirsten Gillibrand (D-N.Y.) writes in the Huffington Post about her plans to create programs supporting affordable treatment for children diagnosed with ASD.

Autism affects more American children than pediatric cancer, diabetes and AIDS combined. It’s a heartbreaking disease that approximately 29,400 children in every corner of New York suffer from.

Huffington Post: Peaceful Revolution: Affordable Autism Treatment for Children

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Dan Swearingen | June 9, 2009

In the June 22 issue of Forbes is an article by Elisabeth Eaves about Simon Baron-Cohen (academic brother of comedian Sasha Baron-Cohen) which discusses his research and his idea that the Autistic Spectrum Disorder (ASD) brain is an extreme version of the male brain.

Baron-Cohen and his researchers feel the currrent incidence of ASD is 156 per 10,000 (or 1.56 %).

Today the strongest evidence [of a cause for ASD] supports a genetic theory, most likely with an additional environmental factor that interacts with the risk genes.

Forbes.com: The Extremely Male Brain

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