Autism In Plain Sight: Let’s Keep It That Way

Russ Wagner just got diagnosed with Asperger’s syndrome—-at the age of 73.

“‘I’ve known since the age of 11 that something was wrong…..What’s really bad is that people can’t see your disability, as they could if my leg was in a cast.,’” Wagner notes in an article in today’s Ann Arbor News.

Wagner—who notes that he “‘tends to see things in black and white’”—graduated from Michigan State University, worked in a food lab, was a saleman; since 1991 until his retirement last year, he has been a custodian at Eastern Michigan State University.

The Ann Arbor News article is entitled Asperger’s an unseen disorder: Early detection critical to treatment; Wagner’s remark about how “people can’t see” his disability resonates with his description of how, as he became older, “‘things got no better’” and how he has spent most of his life thinking “he was some kind of weirdo.”

Wagner’s disability may have been invisible, but his differences from other people were (as he himself suggests) all too visible; he wonders why “he didn’t quite fit in” for his whole life. Reading about Wagner’s experience, and hearing about those of other adults (like Daniel Tammet and Dawn Prince-Hughes), recall to mind the phrase I’ve often heard people say, and that I mentioned in the previous post, Apples and Automobiles:

“I did not know one person with autism before my child was diagnosed and now I see autism everywhere.

Writing in The Huffington Post today about the potentially astronomical costs to pay for autism education and services for a rapidly rising population, Barbara Fischkin states something similar, but states that we see more autism because something is causing autism in more children:

A Columbia psychiatrist who testified at a New York State Legislative hearing earlier this month, called autism the “fastest evolving disorder in all of medical science.” (He also claimed that it might not be an epidemic; that it might be a case in past years of people “hiding in plain sight,” an explanation that I don’t buy for a second. Try hiding one autistic person “in plain sight’ and you’ll see what I mean).

According to Fischkin, the prevalence rate of autism has risen and is rising not because of better understanding and identification of autism, not because we are diagnosing people with autism who, like Wagner, might not have received such a diagnosis before. “The extraordinary autism epidemic which has been gradually exploding since 1990 was caused by a toxic mercury preservative in vaccines,” Fischkin writes. This “epidemic” of autism, coupled with the needs of a growing population of soon-to-be “severely” autistic adults for services such a housing in group homes, fuels the “rage” of Fischkin. In support of her argument, Fischkin quotes the CEO, Mark van Voorst, and chairman of the board, Robert Krakow, of Lifespire, Inc., “a 55-year-old not-for-profit organization that each day serves 5000 developmentally disabled individuals in New York and New Jersey.” As Fischkin writes, Krakow, whose seven year old son is autistic, “makes the point – and I think it’s an excellent one – that if we go about finding the cause of autism in a smart way, we might not have to spend all this money.”

Fischkin’s writing about the need for resources to provide for services for autistic adults is timely: Just today, Autism Speaks announced that it has joined with Senator Hillary Rodham Clinton (D-NY) and Senator Wayne Allard (R-CO) in the Expanding the Promise for Individuals with Autism Act of 2007 (EPIAA), which is to expand federal funding for services for autistic persons throughout the lifespan:

Among the EPIAA’s key elements are the authorization of a task force – which will include significant representation from the autism community – that will report to Congress and the Executive Branch on the state of evidence-based biomedical and behavioral treatments and services for both children and adults with autism, including identifying gaps in applied research on such treatments, interventions and services. It would also mandate a GAO study on service provision and financing.

EPIAA would also authorize a variety of grants: $20 million in annual demonstration grants for the coverage of treatments, interventions and services; $20 million in annual planning and demonstration grants for services for adults with autism; $10 million in grants in FY09 (growing to $20 million by FY12) for the expansion of access to immediate post-diagnosis care; $13.4 million annually in training grants for the University Centers of Excellence for Developmental Disabilities for training, technical assistance and additional services for individuals with autism and their families; and $6 million in annual grants to protection and advocacy systems to better meet the needs of families facing autism and other developmental disabilities, including legal representation.

Bob Wright, Autism Speaks co-founder, notes that there is aa “urgent national health crisis of autism; I would underscore the need for more and better autism education and services tailored to autistic persons’ needs.

It will be interesting to see how “significant” the “representation from the autism community” on the proposed Task Force might be. In regard to the “evidence-based biomedical and behavioral treatments and services,” how much autism—in the form of the actual presence and persons of autistic individuals—will be visible and will be visibly part of decisions?