Autism prevalence rates are sign of improved detection

The highly-politicized responses to revised autism prevalence rates underscore the importance for me to articulate my own viewpoints and experiences as a person on the autism continuum.

The figure is either 1 child in 91 or 1 child in 100, depending upon whether you cite the findings of the Health Resources and Services Administration (HRSA), U.S. Department of Health and Human Services; or the Centers for Disease Control and Prevention (CDC). The previous government figure, in 2007, was 1 in 150.

If you accepted my earlier recommendation to read “Stories of Illness and Healing -- Women Write Their Bodies” (Kent State University Press, 2008), I believe that one essay achieved prophetic reality in the ways in which various advocacy groups reacted to the findings that were released Oct. 5.

The editors of the book, Sayantani DasGupta and Marsha Hurst, penned “Narratives and Advocacy,” that exposes the influence that a voiceless, powerless victim exerts in political narrative and the ways in which victims’ stories are hijacked for political ends.

“Children embody a kind of voiceless vulnerability, and the child who suffers from illness has always been the most poignant embodiment of the  ‘innocent victim,’ and thus of the moral compulsion to act.”

“Moral compulsion” seemed an apt description for the National Autism Association's tactic in slamming the CDC for having what the NAA believes are mis-directed priorities: “The federal government's mishandling of the autism epidemic is a national disgrace,” according to NAA Vice President Ann Brasher in a PR Newswire press release. “The focus on the propaganda-driven swine flu 'pandemic' is outrageous considering the very real epidemic of autism.”

The American Association of People with Disabilities posed this thought-provoking question to readers of its Justice for All e-Newsletter: “Which is more troubling to you -- the increase in the incidence of autism or the reaction of NAA?” The choice was easy for me to make.

The NAA's agenda-laden response was one more reminder to me that I inhabit an autistic community that is highly politicized, where a variety of opinions compete for legitimacy.

One of the most heated and ongoing debates concerns who can legitimately speak for people on the autism continuum. Our portfolios are all so unique when it comes to the behaviors and tendencies associated with Asperger's syndrome and autism spectrum disorders.

One area in which a majority of self-advocates seem to agree is that any agency that purports to speak for people with ASDs has to include those constituents in its policy-making bodies. “Nothing about us without us.”

For this reason, autism self-advocates have criticized an organization called Autism Speaks for having no people with autism on its governing board. A coalition of self-advocacy groups objects to the organization's portrayals of people with ASDs as "stolen," soulless husks who are burdens to their family and society.

From my perspective as a person diagnosed with an ASD in adulthood, I view the recent numerical revisions as a sign of greater understanding and improved detection of ASDs.

I refuse to allow someone else's agenda to be superimposed upon what I believe to be beneficial findings. More of us today are being discovered in childhood whose counterparts in the 70s and 80s were the final “invisible generation” whose challenges were misunderstood.