On Functioning and “Functioning”

This post ran on the original blog in June 2015.

Not only did I present on deconstruction, autism, and digital communities at #cwcon this week, I also roomed (and presented) with a number of other autistic people.

I’ve made several autistic friends via the Internet, as I’ve mentioned in previous posts (and in the presentation).  I’ve even met a few of them one on one.  But spending time in a group gave me a perspective I haven’t had before.  Like:

  • The fact that I’ve never had an IEP, or was never diagnosed in childhood for anything, may be relatively unusual for autistics/NDs in my approximate age group.
  • I’m as awkward at autistic conversational norms as I am at NT ones, but I am less anxious about this awkwardness because something about autistic conversational norms feels intuitively right to me in a way that NT conversational norms never have.
  • Most of my autistic body-language norms have been completely extinguished.

It’s this last one that gave rise to the title of this post, because I can’t stop comparing myself to the youngest member of our group, who also had the most overt stereotypically autistic body language: lots of happyflapping, prancing, squeeing, and the like.  I’ve been trained for so many decades to Not Do That that I kept finding myself getting anxious in public on this friend’s behalf.

But here’s the thing.  Friend had far more overtly “autistic” body language than I did – which means that, in popular autism parlance, I was the more visibly “high-functioning.”  But Friend was also far happier, self-confident, outgoing, and comfortable navigating strange places than I was – which means that, from a “can get things done” perspective, Friend was the more productively “high-functioning.”

Put another way: I’m better at “behaving myself” NT-style in public; Friend is better at actually getting things done.

The goal of Applied Behavioral Analysis (ABA) and other behaviorist approaches to “treatment” is that the treatment target will become “indistinguishable from peers.”  From the point of view of this goal, I’m as close to a success story as one will probably ever get.  Friend is visibly not.  But the comparison of me and Friend makes it clear that being indistinguishable from non-autistic people is not the same thing as being a fully-functioning, mentally healthy member of society.

I’m not sure what Friend’s background with behaviorist approaches to autism “treatment” is.  I know that I was raised in an essentially behaviorist model, in which behavior that didn’t fit the NT mould was consistently punished, and in which any underlying needs or states of mind giving rise to that behavior (whether positive or negative) were never addressed.  So I learned to “behave” – but I also learned that my happiness wasn’t “real” or worthy of acknowledgement, and that my needs were neither “real” nor anything I had the power to control or address.

I also woke up every day for thirty years wondering if today would be the day I’d put my suicide plan into action.

In “Q is for Quiet Hands Getting Loud” (part of the “Blogging from A to Z” series for Autism Acceptance Month), Sparrow Rose Jones writes:

But when I look around at myself and my fellow adults Autistics and hear their stories, it seems to me that this “indistinguishable from peers” goal is one that only a tiny fraction of Autistic people are able to accomplish. Beyond the relative unattainability of “indistinguishable,” the stress of trying to reach that goal can do long-term damage to a person’s body and to their self-esteem.

The dirty truth about “quiet hands” and other attempts to train the autism out of us is that these sorts of therapies — teaching us to look others in the eye, stop fidgeting, stop rocking, stop doing anything that “looks too autistic” — is that these therapies are not really meant to help us. They are meant to make others feel more comfortable around us and to allow others to try to forget that we are

Autistic.

What I want everyone to take away from seeing me in public alongside anyone more “visibly autistic” than I am is this:

I’m one of the handful of autistic people who, for a few brief moments, achieved indistinguishability from peers.  What you are seeing now is the result of thirty years of constant work toward that goal.

It was not worth it.

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About Autistic Academic 32 Articles
Dani Alexis is the Legal Coordinator at Autonomous Press, a freelance writer, and human to two spoiled cats.  Her first novel, Nantais, will be released by NeuroQueer Books in 2017.  She's already busy writing its sequel.