by Jane Meyerding |
This is a strange era in the history of autism because, for the first time, many autistics are discovering their own autism as adults. From the early 1940s, when autism first became a named condition, until the mid 1990s, only children were diagnosed. And those diagnosed tended to be the children with the most incapacitating manifestations of autism. Most of today's adult-diagnosed autistics survived childhoods full of pain. They were labeled stupid, retarded, crazy, or simply "bad." School was a torture chamber of teasing, bullying, and often physical violence. When help was sought from adults, the undiagnosed autistics were told to stand up for themselves, change their own behavior in order to fit in, and stop being a tattle-tale. Just "act normal," act like the other kids, and they'd be fine. Unfortunately, very few young autistics are able to put that advice into practice.
Being neurologically normal makes it hard for a person to understand what it is like to be otherwise. Most seeing people assume they can imagine what it would be like to be blind. But how many can imagine what it would be like to lack the "vision" that enables them to perceive and interpret non-verbal communication? According to Dane Archer, a professor at the University of California at Santa Cruz, nonverbal communication
includes facial expressions, tones of voice, gestures, eye contact, spatial arrangements, patterns of touch, expressive movement, cultural differences, and other "nonverbal" acts. Research suggests that nonverbal communication is more important in understanding human behavior than words alone--the nonverbal "channels" seem to be more powerful than what people say. [http://zzyx.ucsc.edu/~archer/intro.html]
Autistics, limited by their neurology to "what people say," are "out of the loop" in almost every situation where non-autistic humans are chatting, negotiating, competing, or net-working, all the while using and interpreting the full range of nonverbal communication without even noticing it. The skills are so basic to their neurology as to be invisible to their conscious minds. Meanwhile, the autistic in the room is struggling to keep up, using whatever interpretive skills he or she has acquired through hard work over the course of years. And "work" is the operative word. Having to do on purpose what everyone else does automatically requires a lot of energy. It is like working two jobs at once, especially given that nonverbal communication is expected to go both ways. Non-autistics automatically interpret whatever nonverbal signals they believe they are receiving from other people. If the other person happens to be autistic, s/he must generate those signals consciously or risk being misinterpreted, sometimes in quite drastic ways. A job interview, for example, is stressful for most people. Now imagine what it's like for someone with decades of painful experience in "getting it wrong" as far as nonverbal communication goes. Strong eye-contact is seen as a sign of honesty; failure to engage in that aspect of nonverbal communication is taken as a sure sign that the person has something to hide. That stereotype "works" because neurologically typical people in U.S. majoritarian culture grow up including eye-contact in their repertoire of taken-for-granted communication habits. For most autistics, eye contact is worse than not automatic; it can be painful or, at best, so distracting that one is unable to take in what is being said. The sad choice becomes: Do I look the interviewer in the eye and fail to understand the question s/he is asking me? or do I obey my neurology, look past the interviewer, and thus become able to respond in a way that illustrates how well-suited I am for this position, simultaneously branding myself "shifty" and "unreliable"?
Without a diagnosis, all such dilemmas remain personal and all failures to "fit in" and "make the grade" are considered proof of individual flaws. Diagnosis can be a huge relief, because it explains so much of what has happened (and failed to happen) over the years. An explanation is not an excuse, and few autistics would use their autism as an alibi for bad behavior. On the other hand, many of us are coming to see ourselves as part of what might be called a neurological minority group composed of those diagnosed "some kind of autistic" (including the controversial Asperger's Syndrome). "Rather than conceiving of autism as a deficiency," writes Professor Simon Baron-Cohen (Cambridge), "autism might be better characterised as a different cognitive style." An intriguing idea, but one that should be matched with this quotation from Yale's Professor Fred Volkmar: "Many troubled with Asperger's are really quite bright, especially in terms of their verbal skills.... What is harder for people to appreciate is how impaired they are in other areas." Just because autism isn't "awful" and "tragic" doesn't mean it's negligible or non-handicapping.
Many of the nicest neuro-typical people "deal with" difference by proclaiming that it doesn't exist. Or, if that doesn't work, they will claim that it "doesn't matter." Their generous natures cause them to feel that "You're just like me" is about the nicest thing they can say to someone who, for whatever reason, actually isn't. While I admire the good intentions behind this kind of generosity, I can't help squirming at the way it allows so many assumptions to go unchallenged. Unchallenged assumptions have a way of riding roughshod over those who don't match up to them. Misunderstandings go unnoticed; expectations that are not met (because of the differences hidden behind "universalizing" assumptions) cause unfair conclusions to be drawn -- and hiding those conclusions behind politely repressed disappointment does not clarify matters one whit. Most of all, we lose, again and again, the opportunity to experience what it would be like to acknowledge differences and allow them to be visible among us. I suspect that counting on "we're all alike" as our main tool for getting along together also makes us less open to those whose differences cannot be "overlooked." Rather than be "nice," it might be better (in terms of ethics, though perhaps not easier) for us to stop making "sameness" part of our value system for humans.
As an adult-diagnosed autistic, as an autistic with a unique constellation of abilities and deficits, some of them autism-related, many not, I happen to be able -- to have learned how to be able -- to "pass" in many situations. I am not altogether happy about the fact that "passing" has become what is comfortable (though tiring) for me when I am in public, but it may be too late for me to effect radical changes in my coping mechanisms at this point. (I am 55 years old, after all.) What I want most for my fellow autistics, and especially for those "coming up," for the younger ones, is for them to find a world and a workplace where they will not have to "pass" as other than they are. Getting to that new reality will require a lot of hard advocacy work on the part of autistics and their friends. Mostly, however, the change will depend on non-autistics being willing to accept and live with difference rather than forcing it underground by denying its reality or isolating it in "special" areas as something to be tolerated but not engaged. The difference between autistics and non-autistics can feel cultural; hence Temple Grandin's description of herself (made famous by neurologist/writer Oliver Sacks) as "an anthropologist on Mars." What autistics, whether we can "pass" or not, are asking for is that other people leave room for us. Us as we are. Even if we "look autistic" or "act autistic" or use alternate means of communication. Don't require that we look and sound like you, because some of
us can't. Don't judge us on the job (or during the job interview) according to how well we perform the social dance. Give us a chance to show what we can do when who we are is allowed to help shape the world we share with you.