By Stephen Prutsman
Let the saber-rattling begin! Judging from the latest round of social media Autism Wars 2.0, one would have thought conflicts about “autism” were as deep-seated and hate-filled as any in the war-torn Middle East. (BTW, how on earth did humans entertain themselves before the days of Facebook?). Anyway, on its Facebook page SFASA posted a photo of the backseat of our board president’s car, ripped up by her severely autistic son, with the tag: When autism awareness month starts out like this…#AuthenticAwarness. Shortly after, it was as if the gates of hell were opened, with multiple irate commentaries accusing our president of “shaming” her child. Oddly, many of the angry comments came from people outside our area who hitherto have not meaningfully participated in our SFASA discussions regarding advocacy for our regional autistics and their families.
But back to the photo: Was disclosure of ripped upholstery shaming a young man with a mental difference, or did it highlight a symptom that is relevant to public discourse, one that any parent would love to alleviate, and one that should not be sanitized or kept under wraps?
It seems that autism for many of us (let’s call it camp A), is an identity, in no way different from one’s race, gender or sexual orientation. This assumption therefore posits that all behaviors and differences are an integral part of this identity and as such are wonderful and unique, and should be embraced. For others (camp B), autism is a debilitating disorder whose painful symptoms, such as self-injury and the destruction of property, is NOT something to be embraced or celebrated, but a painful reality needing to be explicitly addressed and alleviated. Those in camp B strike me as believing the disorder is separate from the beautiful soul inside the child. What a vast divide in what this single word, autism, means in different cases, and to different people.
Consider for a moment if “Scandinavian” and “Krabbe,” a neurological disease most common among those of Scandinavian descent, were grouped together; let’s call this hypothetical grouping “ScanKrab." For some, it would be a beautiful identity full of rich culture, heritage and uniqueness. For others, it is a seriously disabling condition. One can only imagine the confusion, misunderstanding and pain that would ensue if scientists were to lump both under the same category.
So with “autism" we appear to have such lumping. But which interpretation is right? Because the word signifies many different things to many different people and organizations, disagreements fester and fights inevitably erupt. And it's such a waste of time.
In my opinion one answer would be for camp B—those who view autism as a seriously debilitating disorder—to divorce themselves from the A-word altogether. Let “autism” refer to a different way of thinking, sensing and being in the world, a difference to be celebrated. Let clearly impairing mental pathologies of camp B enjoy new labels. No more “autism” in their advocacy, labeling, or treatment. Let the A-word die and be re-born, gifted to camp A, no longer as a medical disorder, but as an identity.
With new labels for camp B, individuals and parents can engage in advocacy for this subset with an acute need for treatment and care, and do so in very specific and productive ways. What a waste for those of us who must provide intensive, non-stop care and advocacy for grievously disabled children and adults to continue to deal with hostility flowing from the camp A different view of “autism.”
A few weeks ago the noted Dr. Simon Baron-Cohen asked, “Is it Time to Give Up on a Single Diagnostic Label for Autism?” in a commentary in Scientific American online. I could not say YES fast enough.
Stephen Prutsman is a father of a son with a severe developmental disorder once known as "autism." He is also a member of the board of Autism Society San Francisco Bay Area.
Disclaimer: The opinions and assertions stated in the SFASA blog are those of the individual authors, may not reflect the opinions or beliefs of SFASA, and do not reflect the opinions of the Autism Society of America. SFASA is an independent affiliate of the Autism Society of America, the leading grassroots autism organization.