Neurodiversity

Covert Ops in Autistic Self-Advocacy

Pandemic autism that’s hidden in plain sight, an autistic spectrum populated overwhelmingly by undiagnosed fellow travelers and autistics-in-hiding—if this is an accurate description of autism’s full spectrum, then where are all these supposed autistics?  Were I an astrophysicist, I might be employed chasing after dark matter and dark energy, invisible stuff said to make up ninety-some percent of the known universe—all because, well, because there’s a really promising theory that predicts that such stuff must exist.  What fun.  What a racket, seemingly.  Me though, I’ve no theories, only a list of observed similarities between autistics and certain other groups, and an autistic’s indifference to the social taboos that keep these similarities from being widely recognized.

What’s needed here in fact is not so much a scientific breakthrough as a perceptual one.  If geeks and nerds can be seen as autism’s proxy warriors, there is another group which slipped unnoticed into this same theater of operations, scouting out the territory and bidding for hearts and minds while by nature drawing as little attention to themselves as possible—save of course for the occasional article or blog post.

I am something of a packrat when it comes to bookmarks, and an item this week at BoingBoing reminded me that I had several similar articles I could call up with just a one-word search.  Rather than tip you off right away, I’m going to quote from those articles here while substituting “autistic” for the word originally used.

Before my bookmarks on this subject became a collection, I had just this single item dating from March of 2003, in The Atlantic:

Do you know someone who needs hours alone every day? Who loves quiet conversations about feelings or ideas, and can give a dynamite presentation to a big audience, but seems awkward in groups and maladroit at small talk? Who has to be dragged to parties and then needs the rest of the day to recuperate? Who growls or scowls or grunts or winces when accosted with pleasantries by people who are just trying to be nice?

If so, do you tell this person he is “too serious,” or ask if he is okay? Regard him as aloof, arrogant, rude? Redouble your efforts to draw him out?

If you answered yes to these questions, chances are that you have an autistic on your hands—and that you aren’t caring for him properly. Science has learned a good deal in recent years about the habits and requirements of autistics. It has even learned, by means of brain scans, that autistics process information differently from other people (I am not making this up). If you are behind the curve on this important matter, be reassured that you are not alone. Autistics may be common, but they are also among the most misunderstood and aggrieved groups in America, possibly the world.

As it happened, that article got a tremendous response, taking on a life of its own at The Atlantic; it was revived four years later as well, when it was voted up to prominence by Digg.com users.  Looking over these pieces I realize many came to me via Digg.  This undated newspaper clipping which appeared there last September echoes many of the things I remember first learning to do with my stepdaughter in 1998 after she came back from a clinic with a preliminary diagnosis of “borderline autistic.”  Some examples from How to Care for Autistics:

• Let them observe first in new situations.

• Give them advanced notice of expected change in their lives.

• Give them 15 minute warnings to finish whatever they are doing before calling them to dinner or moving on to the next activity.

I have mentioned before and hope to write more about the autistic sensibility that is apparent at Digg; the site’s landing page for the above clipping included a note from the member who submitted it:  “ouch. that’s like a list about me.”

From 2007’s Top 5 Things Every Non-Autistic Should Know About Autistics, voted up to Digg’s front page the day after it was published:

The qualities and characteristics of autistics are often held in a negative light in today’s world, so it’s only natural that the majority of people seem to think that there’s something wrong with them.

The reason why the majority of people think that there’s something wrong with autistics is because the majority of people aren’t very knowledgeable when it comes to autistics, in terms of why they are the way they are and why they do the things they do.

Autistics have a lot to bring to the table. They have an amazing ability to discover new thoughts, an uncanny ability to focus, to concentrate, to connect the dots, to observe and note things that most people miss, to listen extremely well and are often found having a rich and vivid imagination too.

The more non-autistics become knowledgeable about autistics, the less tension and misunderstanding there will be among the two.

From Autistics and Non-Autistics, Can’t We Just Get Along, again made popular at Digg the day after its first appearance in 2008:

Being an autistic is a bad thing, right? Well, a lot of people seem to think so, judging by the number of articles I’ve read about how to “cure” autism. In response to these articles, I wrote The Autistics Strike Back, in which I argued that (1) autistics can’t become non-autistics, and (2) they shouldn’t particularly want to.

And from the blog recently mentioned at BoingBoing, I can do no better than to repeat the pull quote used there:

A woman who read one of my essays on autism said that when she explained her autism to her family, her brother said, “We didn’t know you were autistic. We thought you were just a bitch.”

Yeah, a lot of people don’t get it. How do we help them to understand?

The secret word of course is introvert.  Every quoted passage or title above was originally written with the word introvert rather than autistic.  And yet if you click through and explore what’s being said in each of those pieces, what you’ll find is society coming to terms with autism, and unsuspecting autistics explaining themselves to the non-autistic world with a heartening degree of mutual respect, goodwill, and understanding—all without the unhelpful baggage and extremes of emotion that have come to accompany the word “autism.”

I can hear the protests already, believe me.  The autistics taking umbrage at autism’s very real disabilities being discounted or made invisible, dismissed as mere introversion; and the introverts offended at being lumped in with “disabled” people after all the effort that’s gone into explaining so engagingly that there’s nothing wrong with introversion.

All of which suggests that while the phrase “autistic spectrum” trips easily enough off our tongues, we are not so comfortable with the implications of a metaphor which should make clear to all that there is no sharp or meaningful dividing line between disability and difference—or between autistic and non-autistic.  I’ll admit I’m a little put off at the frequency with which the phrase “care for your introvert” pops up in the above articles and others like them; even when used with tongue in cheek and in good fun, it still feels patronizing to me. That those articles were written at all though—from a stance that differs for the most part by only one word from that of the emerging autistic self-advocacy movement—is evidence that that movement has been underway and in fairly good hands for some time already.

Mark Stairwalt on 02/19/10 in featured, Society | 5 Comments | Read More