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Why insist you're not autistic?

Posted Feb 14 2010 6:49pm
"Asperger's is a gift; autism is a burden."

"Aspies are smarter."

"I'm different, not disabled."

"Asperger's makes me good at...."

"Aspies are nicer because we don't manipulate people."

"It's kind of like autism, but I'm high-functioning."

"I don't need a cure because I don't have a disability."

"It's not a disorder."

"Aspies are the next step in evolution."

Have you heard those things lately? Maybe even coming out of your own mouth? Regularly? Congratulations--you're prejudiced. Sure, you may say things like this once in a while; and maybe there's some truth to them; but taken together, they evidence a mindset that shows the most insidious kind of prejudice: Prejudice held by a group, against itself.

"But I'm Asperger's! Not autistic!"

And that belief is part of the problem. Asperger's, whether you want to admit it or not, is a kind of autism by every standard imaginable. Even if you require that "real autistics" must have a speech delay or must be developmentally delayed, you still come up with indistinguishable cases in adulthood. It's all autism. It's all problems with speech, problems with social interaction, sensory issues, routines, and special interests. The symptoms are the same. The intensity differs.

Autism is not unique in this respect. Both psychology and neurology recognize many more diagnoses with drastically different severity levels than they recognizes diagnoses which have very little variation. Think about it.

A psychiatrist goes to the hospital to meet with a woman who has depression. She is unable to leave her bed, and has lost most adaptive skills; she speaks in grunts or not at all. Later, he sees a teenager in his outpatient clinic. The sixteen-year-old is a straight-A student, the popular student body president, whose parents brought her in when she admitted to them that she had been thinking about suicide. They both have depression.

A man lives at home with his mother. She provides the pervasive support he needs. He cannot perform basic self-care; and his only communication is to smile when he sees someone he loves, or to shriek in anger when something is bothering him. Another man lives in a little apartment across town and takes the bus to his job as a janitor. He's dating someone he hopes to marry; in his spare time, he plays basketball. Both men have mental retardation.

A four-year-old has difficulty walking; so she wears braces to support her weak ankles. At the same school is another four-year-old who is just learning to use the few movements she can control to operate a communication device mounted on her wheelchair. Both girls have cerebral palsy.

A sixteen-year-old boy's latest triumph is figuring out how to use the toilet by himself; his parents had difficulty teaching him because he could not understand or reply to their speech. He spends most of his spare time turning pebbles over and over in his hands. His classmate, also sixteen, is an awkward boy who excels at math, speaks with an odd cadence, and doesn't understand sarcasm. He spends most of his spare time endlessly playing tetris.
Both boys have autism.

If you still insist that autism, with its varied traits and types of impairment, must be divided into two different things along the lines of Asperger's versus autism, or Asperger's/HFA versus low-functioning autism, then you are not just saying that Asperger's and autism are different things; you're saying that there should be a total paradigm shift in how we diagnose neurological, psychological, and cognitive disorders.

It's not just the few diagnoses I've mentioned above where the same name covers many different levels of impairment; it's practically every diagnosis. ADHD can range from mildly scatterbrained to unable to focus for more than two seconds. TBIs can cause comparatively minor annoyances or require full-time assistance. Epilepsy can be easily controlled by medication, or it can mean multiple seizures every minute despite the best meds you can find. Dyslexia can mean forced illiteracy or simply being a grade level behind in reading.  And it's not like there's some gap in the middle between mild and severe. All these things are continuums. So is autism.

Autism has a highly varied range of expressions with the same theme. It has no clear dividing line between mild and severe; most autistics can be called "high-functioning" by some standard, and simultaneously called "low-functioning" by some other standard, even if only compared to NTs. (That's why these labels, as I've mentioned, are useful for little more than shutting autistics up.) And if you call LFA only the cases where the person cannot use any symbolic communication and has very few adaptive skills, you may have a good definition--but most of your group will not stay in that group; they are children who will grow up to be able to do both at least ot some extent. That's a hallmark of development within a single disorder, not of two separate disorders--and you can't predict who will stay in that group to adulthood (hardly anybody, by the statistics). Asperger's is indistinguishable from the majority of autism cases by adulthood--not from the most severe cases; but then any severe disorder will be distinguishable from any mild disorder, without them being different categories. And adulthood doesn't change the fact that there are not two groups, or three groups, but one group with many infninitesimal variations from one end to the other on any dimension you care to examine.

So what's the origin of this insistent belief that autism isn't the same as Asperger's, despite all evidence to the contrary? Quite simply, it's an illusion caused by prejudice. It's not the sort of hateful prejudice that burns crosses on people's front lawns; it's more like the sneaky sort that takes over in the guise of self-esteem. It happens when people with Asperger's try to accept Asperger's without also accepting disability.

Practically universally, we're born into a society with certain ideas about disability. Disabled people are objects of pity. Helping a disabled person is a mark of character, and the disabled person will be so grateful that you're being so sweet. Disabled people are childlike, especially cognitively disabled people. Disability is severe and obvious; never mild, invisible, or subtle. Disabled people who learn to do things that typical people do are heroic just for living their lives. Living with a disability means you're courageous, because living with a disability is terrible. If I ever get a disability, shoot me. Pull the plug. I don't want to live like that.

So you're five, or fifteen, or fifty; and you've been living in this world for a while; and you can't help but pick up some of this prejudice. My own mom is an occupational therapist who works with disabled children and elderly; and she used to threaten me and my sisters when we did something dangerous with, "You'll sit in a wheelchair for the rest of your life!" Apparently, that was more frightening to her than dying or "putting an eye out" (the more popular injunction against childhood silliness). I still remember my first exposure to autism--"The Secret of Susan", a Baby-Sitters Club book about a stereotypical autistic girl, a nonverbal piano savant who does calendar calculations and, at the end of the book, is sent to an institution where everyone agrees she will be better off.

And then you get this label called "Asperger's."

Suddenly, you're awfully close to that mental stereotype of disability you've been taught all your life--and you don't want to be put into that group of people. The group you're thinking of isn't actually a real group; it's the disabled people you've mentally pictured when the world around you talked about disability; or the disabled people you've seen distorted through that filter. But you don't know that. You just know that you don't fit this stereotype; and therefore, you can't be disabled. You have to distance yourself.

Asperger's is uniquely suited for distancing oneself from the idea of disability. The typical scattered skills, combined with the criterion that you can't have developmental delay, mean that there'll almost always be something where you excel. It's easy to say, "Asperger's makes me good at..." whatever you happen to be good at; and to use that as a reason to justify the idea that you're not disabled. The popular stereotype of autism doesn't help much, either. Autism is a monster that steals away a child's soul. It's someone who sits rocking in a corner all day, spinning the wheels of toy cars. It's someone who can never say, "I love you." And this image of autism automatically evokes the idea of disability. So, with this faulty premise, you reason (also illogically), that because your case is not like the popular image of autism, you must not be disabled.

Asperger's is a gift. (Yes, it is; but it's also a disability.) You can do things that NTs can't. (How does that make you non-disabled?) You can talk. (Yes, and so can most other autistics.) You're high-functioning. (What does that even mean?) You don't need a cure. (Having a disability doesn't change that.) But it's a very, very comfortable trap to fall into. It's the only way to accept yourself as Asperger's (or HFA, or PDD-NOS, or whatever) without also clearing away the old disability prejudices.

This worldview, however, is deeply threatened by the idea that Asperger's, high-functioning autism, low-functioning autism, Kanner's, PDD-NOS, atypical autism--and any other label you may want to stick on awkward, obsessive, communication-impaired people--are actually part of the same category. Suddenly, you are "lumped in" with that awful, threatening mental picture of "autism" you've had ever since you were first exposed to the idea. Your entire idea of your own identity is being threatened. You feel angry. "Hey!" you insist, "I'm not autistic! I'm not like Those People!"

(Those People, of course, being an entirely mental construct. Disability prejudice is many things, but it isn't realistic. It doesn't reflect what it is really like to live with a disability--especially since there are so many different possible experiences that there's no way one simplistic stereotype could ever encompass them all!)

Not that Aspies are the only ones who buy into disability stereotypes. The autistics aren't blameless here, either. While they'll agree they're disabled, and agree that autism is a disability, they refuse to accept that Asperger's is part of the same category. They, too, have found a way to reconcile their own diagnosis with the disability stereotype; but they've done it another way: They've picked out the most positive part of the disability stereotype and tried to put themselves in that category: The "inspirational" disabled person, who lives with so much more pain and tragedy than anybody else, and keeps on truckin' nevertheless. Being part of the same category as Asperger's threatens them because the Asperger's stereotype doesn't overwhelmingly include disability; and they're worried that people will not acknowledge their heroic efforts if suddenly they are "lumped in" with people who don't even have to try hard to do what took them ages to learn. (Works for autism moms, too. My child is more disabled than your child; therefore you have no idea what I'm going through. Etc.)

I'm not blameless myself. When I was first diagnosed, it took me a good long while to realize that Asperger's was, in fact, a disability, and to figure out what that meant to me. Then later on, I was often tempted by the idea that I needed to be "inspirational"--that I needed to get my degree and become a successful engineer in order to justify my existence. I still ricochet between the two alternatives, to this day.

Both groups of people are making one fundamental, mistaken assumption: They take the disability stereotype as axiomatic. The idea that it can be discarded has not occurred to them.

Well, I'm here to tell you that not only can the disability stereotype be discarded--it should be. We don't have to insist we're not disabled; we don't have to justify ourselves by saying we have special skills; we don't have to apologize for our existence and try to be inspirational to make up for it. Looking for permission? Well, you have it. Be yourself. Live your life on your own terms. You don't have to sit in that Disability box and assume it limits your world.

Once the targets of prejudice stop buying into it and start facing society without apology, the days of that prejudicial ideology are numbered. Step out; take risks; and watch it crumble. iweb stats
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