by Stephen Prutsman
At the end of a keynote speech at this summer’s national Autism Society of America conference, authors Caren Zucker and John Donvan implored the audience to quell the infighting among various autism advocacy factions. (Rodney King’s “Can’t we all get along” immediately came to my spectrum-y mind). Their point was that instead of squabbling among ourselves, we should be working toward the same objective: a better quality of life for all on the spectrum, so that all autistics may be safe, happy and thriving.
Their wonderful book “In a Different Key” touches on the fact that throughout its history, the word autism has lacked a clear and universally accepted definition, unlike many other conditions. Instead, the autism spectrum covers a multitude of differences. On one extreme, what I'll call Camp A, are those who are independent, but different and quirky. Some leading self-advocates are in this group and some have described geniuses like Nicola Tesla, or even Socrates, as falling under this umbrella. And way on the other side, Camp B hosts the severely developmentally and cognitively impaired, the non- or semi-verbal, those with a host of often painful co-morbid conditions. And of course, there are myriad variations within and between these two extremes, each adding their own flavor to the word "autism."
For those of us closer to Camp A the autism label has an almost philosophical meaning, a description of how we process the world, of an identity we have embraced. “I got to be me,” we say. “Accept me for who I am, with all my quirks." "Support me with the accommodations I need." "Woe to those who use the A-word to describe in a negative way a severe disability."
Others, in particular the parents of the Camp B, or classic autism, have seen their children and families suffer beyond measure as a result of the demands of autism. Head-banging, self-injury, heart-wrenching scenes of agony and tears: these are not "Rain Man" moments. These are bona fide PTSD parents, with stress levels like combat soldiers—always on guard, waiting for the next crisis, the next aggressive, injurious and bloody episode; parents who have dedicated their lives and savings to a myriad of medical interventions, therapies and care-giving.
They advocate for their children because their children often have no or limited spoken language and cannot do so themselves, and worry constantly for their children's futures, their long-term housing and care. “Autism is a debilitating disability, not simply a quirky difference. Woe to those who put a cute and cuddly face on all of those excruciatingly painful moments, days and years we and our children have endured,” they say, exasperated.
In Camp A there are various unique personalities. In Camp B, the unique personalities are coupled with substantial developmental challenges. Camp A sees attempts to prevent, or treat autism as a form of judgment, a direct attack on the intrinsic self-worth of its members. Camp B sees the "embrace and celebrate autism" dogma as simplistic, demeaning, and lacking empathy for their families' enduring painful struggles.
The medical and scientific communities are currently struggling toward clarity on how to draw lines and labels around the various forms of autism, meanwhile leaving those of us in the trenches with no choice but to make our own definitions, and tailor our advocacy efforts to where we or our loved one fit within the extremely diverse population that is currently broadly labeled as autistic.
“Full employment at a competitive wage for all autistics” becomes a priority for Camp A, while “Assurances that our severely developmentally disabled sons and daughters will be well cared for, and those without language and a voice will not be abused after we’re dead” becomes the plea from the other side. Why so different? Because, fundamentally and quite obviously, we are talking about extremely different underlying conditions, and not just one. The blind and deaf have different terms, not just a lumped-together "sensory input disorder." We in the autism world have no such luck, yet. We are still lumped together, despite having such vastly different conditions and needs.
Until the folks of the DSM (Diagnostic and Statistical Manual of Mental Disorders) come out with a better labeling system for the autism varieties, it seems unlikely the bickering and polarization will go away: everyone will continue to think of the A-word as it relates to their own experience, and advocate accordingly.
Meanwhile perhaps the best thing we can do is to simply recognize these differences and not get into each other's way. Parents of the severely developmentally disabled should not involve their time and resources in fighting against efforts to improve the lives of those of us for whom autism is a positive identity. And those in that camp should not spend their time attacking efforts of parents who labor to help their children.
Zucker and Donvan were right: autism infighting is unnecessary, we are wasting our precious time skirmishing over a fluctuating lexicon. So until the day our vocabulary catches up with the diverse biological, neurological, and functional realities that lay underneath the A-word, take off the gloves, and give each "autism" story the respect it deserves.
Stephen Prutsman is a concert pianist, composer, member of the Autism Society San Francisco Bay Area board, and co-founder of Autism Fun Bay Area, a nonprofit providing concerts and recreational events for special needs families. He lives with his family in San Francisco.