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Why the Time Has Come to Start Saying 'Autisms'

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The time has come to celebrate Autism Acceptance/Awareness Month in April by adding an “s” to “autism.”

Granted, the word “autisms” does not roll easily off the tongue. (Really, it just puckers at the end.) But I have big hopes for that extra “s.”

First off, it codifies into our language the current science. Namely, that there is no one cause of autism. There are causes. The science is far from set, but many recent studies find many potential causes — be they related to myriad genes, environmental triggers, or both.

Consider this quote from Dr. Stephen W. Scherer of The Hospital for Sick Children in Toronto explaining his team’s findings that even the autistic siblings they studied had different autism-related genes in most cases.

We believe a better term to use is ‘the autisms,’ or ‘the autism spectrum disorders’ (that is, plural),” he told Reuters Health for a January 28 article. “There are many different forms of autism.”

More importantly, that mighty “s” reflects the amazing diversity among people with autism. A popular slogan in autism communities is, “If you’ve met one person with autism, you’ve met one person with autism.”

The popular thinking is that people with autism fall somewhere on a linear continuum from “high-functioning” autistics or people with Asperger’s syndrome, who have pretty good speaking skills, high intelligence and poor social skills, to those with “low-functioning” autism, who are non-verbal, unable to relate to others and have lower intelligence.

But given the augmentative communication devices that enable them to express their high IQs and connect to others, people with autism are proving that linear thinking wrong. Autisms are not expressed in a line, but in constellations.

“Autisms are not expressed in a line, but in constellations. Here’s one of the stars.”

Maybe, if adding an “s” to autism gets us to accept a diversity of causes and expressions of autisms, we can move beyond the notion that one therapy or educational support can help all kinds of people with autism. Among the rifts in our communities are the conflicts between proponents of various types of therapies, each claiming that their way is THE way to help.

So, if we accept the heterogeneity of autisms, perhaps we can accept that each person with autism needs his or her own mix of services and supports, and we can ditch “one size fits all” approaches.

You may have noticed that I’ve pluralized “community” as well to describe people with autism, families, scientists, educators, caregivers, therapists and the like because we are not one community. In many ways, we are at war with ourselves. And we are waging more than one battle.

Some battles rage over causes (genes versus vaccines, the most inflamed of late), others over therapies, more still about diagnosis numbers (epidemic versus reclassification versus ever-changing diagnostic criteria).

One unifier in all these battles is anger — anger I believe to be born of the uncertainties of autisms. We don’t know the specific causes. We’re still at a trial and error phase in our approach to the therapies, medications and teaching methods that really help people with autisms. And gaining access and funding for the things that do help means maneuvering through the murk of insurance and government bureaucracies, a process that leaves even the most level-headed person infuriated and ready to rage.

Which brings me to my last and most important hope for adding an “s” to autism this April. I wish that if we could accept the notion of autisms, we could learn to respectfully disagree with each other and stop trying to prove each other wrong with the vitriol and zealotry I so often read in comments sections in blogs and articles online.

You may have also noted that I called April Acceptance/Awareness Month, because some call it “Autism Awareness Month,” while others call it “Autism Acceptance Month.” Some are championing the idea of “Autism Respect Month,” which I like best of all because it champions the idea of treating people with autism with respect and dignity.

Of course, I’d prefer “Autisms Respect Month.” We need that extra “s” to remind ourselves that we need to respect the diversity among us and treat each other with dignity if we are to expect the same from the world at large.

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Originally published: April 3, 2015
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