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Monday, April 24, 2006

 

Berkeley Cybersalon: The connection between geeks and Asperger's

Last night I attended a Berkeley Cybersalon. Described as "an open forum for the discussion of technology and culture" by its founder Sylvia Paull, April's salon featured a discussion of the relationship between Asperger's Syndrome and software engineers, and "what is normal in a society that is constantly transforming itself."

On the panel were Steve Silberman, Wired reporter and author of the December 2001 Wired magazine article "The Geek Syndrome;" Ellen Ullman, author of Close to the Machine: Technophilia and Its Discontents;" Judith Grether, principal investigator for the California Center for Autism and Developmental Disability Research and Epidemiology; psychotherapist and educator Annette Blackman, who coaches young adults with Asperger’s; and Philip Rosedale, founder and CEO of Linden Labs, which produces the popular multiplayer fantasy game, Second Life.

I found the event interesting and the discussion lively. Here are my notes from the evening.

Steve Silberman opened the discussion with a brief synopsis and history of his article. He noted that he wrote it five years ago but that he still gets email about it regularly.

Silberman can't say for sure if there's an epidemic of autism in Silicon Valley; he's not a doctor. He suggested that it might be an epidemic of discovery. The fact that autism is a spectrum disorder means the continuum stretches to normality. Are we all on it?

Ellen Ullman iterated she is not an expert on Autism or Asperger's. However, she thinks that Autism and Asperger's are not on a continuum and that there's a discontinuity, a break. As far as a prevalence of Asperger's among programmers or geeks, Ullman suggested that programmers have much more formal interactions with other people: "I am checking my parameters and they appear to be within legal limits." As formally-oriented people, programmers simply trust programs more than other human beings.

Paull suggested that Ullman's character Ethan Levin in her book The Bug has Asperger's; Ullman said no.

Philip Rosedale talked about Second Life and described it as a metaverse (instead of a universe). He explained that the complexity of the code used to create Second Life is going to make the intersection between the geeky programmers and the programming interesting. Within the Second Life metaverse there is an island inhabited solely by adults with Asperger's. Rosedale describes how anecdotally (the experiment can't be described as scientific) these individuals have said that their safe interactions using Second Life--their lowered barrier to interactions--have helped them with their interactions in the real world.

Judith Grether mentioned that we might be pathologizing a certain type of life or a certain type of personality, although she was quick to note that she says this not as an epidemiologist.

Grether has not seen a diminishing in returns since the mercury has been removed from vaccines. Their research shows that Autism (including Asperger's) is found in 6-7 kids per 1000, no matter if they studied an area with a cluster of cases (e.g., Silicon Valley) or any opportunistic area that was easily accessible to their researchers. In other words, is this the baseline? Maybe more kids diagnosed now because there are the services available to those with the diagnosis.

Autism is not the result of a genetic mutation. There's no data to support that Silicon Valley is a hot bed for Autism. She personally doesn't think it's vaccine related.

Silberman spoke and said that blaming it on vaccines is easy because that means blaming the big bad pharmaceutical companies. Also, Autism tends to reveal itself around age 2 or 3, which also happens to coincide with vaccinations. However, he doesn't think it's vaccine related either.

Discussion
An audience member wanted to know if the panel though Autism was curable or if the diagnosis was reversible either through chelation or behavior therapy intervention. Grether noted that a lot of taxpayer dollars are going towards behavioral interventions and that early intervention is a good thing.

Silberman isn't into talk of a cure. Is it something to cure or is it something to live with? He prefers the term neurodiversity, or re-thinking what "normal" means. He used the example of highly intelligent adults that he knows who were previously medicated in childhood for ADHD.

In Silberman's purely un-scientific observations, Autism is caused by the orchestrated action of multiple genes.

Another audience member brought up toxins and mentioned two groups: EWG (Environmental Working Group) and Body Burden (bodyburden.org) for information about toxins in our homes, bodies, breastmilk, etc. [I would also add check out MOMS at www.safemilk.org for specific information about toxins such as jet fuel found in breastmilk.]

Someone questioned what will happen when these younger kids with Autism and Asperger's get older. Grether noted that there's a study by (a parent associated with?) the Mind Institute that estimates the burden on taxpayers as more children are diagnosed and as these children get older. The numbers are huge and they're an additional incentive to figure something out, e.g., find the cause and/or a cure.

Both Silberman and Ullman believe that if you medicate, cure, or otherwise weed out these high functioning Autistics or those with Asperger's, than the world will no longer contain the machines and computer programs that are now so prevalent in our lives.

Panelist Annette Blackman came late to the discussion and added that she hosts a support group for adults with Asperger's called CREW. It stands for how are you doing in your Community, your Recreation, your Education, and your Work. She said the support group provided a safe place for these individuals, many of whom are profoundly depressed.

Paull advises that a podcast of the evening will soon be available on AfterTV.

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