~Rumi

All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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08 March 2009

Mirror Mirror on the Wall: Do You See Autism?



Is autism in the eye of the beholder?

Autism Spectrum Disorders are characterized by sensory sensitivities, introversion, passionate special interests, unique (and often original) approaches to social interaction, and typically detailed thinking.
Despite the fact that autism is a spectrum, why do some people rigidly classify autism and expect that it should only look like:
Employing assumptions, generalizations, and stereotypes lead some people to the dangerous territories of prejudice and hierarchy. 

Below, follows Temple Grandin's opinions of "low-functioning" autistics (LFA), in addition to a response from Amanda Baggs.

Grandin:

Page 122 of the tenth-anniversary edition of Thinking in Pictures:
Many individuals with high-functioning autism or Asperger’s feel that autism is a normal part of human diversity. Roy, a high-functioning autistic, was quoted in New Scientist, “I feel stabbed when it comes to curing or treating autism. It’s like society does not need me.” There are numerous interest groups run by people on the autism/Asperger spectrum and many of them are upset about attempts to eliminate autism. A little bit of the autism trait provides advantages but too much creates a low-functioning individual who can not live independently. The paradox is that milder forms of autism and Asperger’s are part of human diversity but severe autism is a great disability. There is no black-and-white dividing line between an eccentric brilliant scientist and Asperger’s.
In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.
Baggs:

The really problematic part is, yet again, her view that so-called low-functioning non-independent non-verbal autistics are useless. If Temple Grandin reads this blog (and I sure wish she would read and understand Donna Williams’s and my responses to her anti-”LFA” sentiments), I hope she knows that she is essentially telling me that the world would be better off without me in it.
She draws a distinction between natural human variation and disability. It’s the usual stereotype, “natural variation good, disability bad”.

Well anyone who believes that, wake up! What you call disability is part of natural human variation and always has been. People with easily-recognized l33t Asp1e sk1llz (sic), or whatever they are called these days, are not the only people of value on this planet, and the rest of us care just as much about impending genocide as you do. Don’t think that, if all us undesirable useless retards were all magically eliminated, you wouldn’t be next. The standards for normalcy only tighten when certain people are eliminated, and you would find yourselves in the position we now occupy. Even if you still want to throw us overboard to save yourselves, many of us will fight you on that.

......................................

My son is autistic. Strangers and casual acquaintances often seem surprised. After all, he is wearing clean hip clothes and seems to be smiling and talking just fine. How can he be autistic? It's not uncommon for me to hear: "He's autistic? Oh, he'll grow out of it. He's nothing like other autistic kids I've heard about. I would never have known." 

I'm proud of my son, but he has not been cured anymore than he has grown out of autism. He just happens to be a spectacular example of an autistic person who is benefiting from acceptance, accommodation, appropriate education, integration, and opportunity. Thanks to an early diagnosis, my son has had years of occupational and speech therapies, which he began receiving by one and a half years of age.

When I disclose my diagnosis as a person on the autistic spectrum, it is not uncommon for me to hear these types of remarks: "You seem so with it! Matter of fact, I have always admired how together you seem to have everything."

Meanwhile, I am thinking about how shattered this person's image of me would be if only they knew how dysfunctional, cantankerous, and unreliable some of my functioning skills are.
 


"But you speak so well and seem to have so much going for you. You're so articulate and thorough. I would never have known!"

What do you mean? Autistic people cannot be articulate and thorough? When I hear these types of comments--which are often well-intentioned--it is reiterated that autism myths, including what autistic people (or disabled people in general) should look and act like, need to be stamped out for good. Casually pointing fingers at autism is a subjective business.

Autism cannot always be seen. I could be talking to another autistic person and neither of us would know we are both on the autism spectrum unless it was revealed. Autistics are everywhere. We hold all types of jobs. We also have uneven skills. Where we may excel at one task, we may struggle greatly with another.

2 comments:

  1. thanks for this! I am a mother of a 4 year old whom I suspect may have aspergers. I am trying to get help - was originally terrified of getting him labeled - but finally went for help over fear. The hardest part is trying to talk to friends - well meaning, great old friends who are educated and reliable normally - and having them say things like "oh, that isn't possible - he isn't autistic, just look at him!" As if I was saying he was somehow a bad child or was a wrong-child. I am just trying to understand my child and help him... not avoid a problem... your site helped... it was the words I wanted my friens to say but they can't because they don't know how... imagine that, huh? lacking empathy??? whodof thought! Thanks!

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  2. k, Thank you for your comments. You are definitely not the first parent who has had the type of experience while discussing your concerns. Many doctors, therapists, and other types of professionals are also guilty of misleading concerned parents due to autism myths. Follow your instincts, document your observations, and learn as much as you can (especially from the voices of those who are on the spectrum). Best of luck! You may also enjoy this post:

    http://autism.change.org/blog/view/empowerment_where_do_you_get_your_information

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