Who thinks what about being autistic

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In response to the NPR show, I’ve seen people (who must not have actually listened to the show), saying that it’s only auties who speak, or who are regarded as “high functioning,” who are happy with being autistic or oppose the idea of curing autism. As far as I’ve been able to tell, this isn’t the case.

There’s a lot of different opinions on curing autism, not just two, of course. And I don’t believe in the way the rest of the world divides us up into functioning levels, that is too simplistic and assumes there’s only one dimension to being autistic, it doesn’t even bear up under scrutiny. But if I were to take autistic people and how the world generally divides us, and take our opinion of being autistic, I really don’t think I’d see much correlation to the world’s false subtypes.

I’m going to post the following quotes, but with a bit of a disclaimer attached. I’ve found that aug-comm-using auties are often tokenized even within the autistic community. When we agree on a basic principle such as the way we think about being autistic, that can be used to say “See, we have those people too.” But an aug comm user would have to be pretty oblivious to hang around the autistic community for very long and believe that we are considered to be on equal footing with other autistic people. That’s one of many divisions that unfortunately still divides this community, in subtle and not-so-subtle ways. So if you see a post like this linked to as evidence that this is a wonderfully and totally inclusive community for all autistic people of all kinds, think again, we’re not, on many levels. But also think again if you hear that the “non-inclusiveness” is just that we don’t like the idea of cure and don’t understand “real autism” which is defined as autistic people who want a cure.

I’ll start the quotes with a quote from Cal Montgomery that sums up the point of this entire post in a way:

I don’t believe you can meaningfully separate autistic people into “high-” and “low-functioning” in the first place, but if you can it’s not by comparing their political opinions.

Some political opinions about autism:

I value my AUTISM above all else with which my life has been “gifted.” While I also have cerebral palsy and epilepsy and these are wonderfully special to me, and I often think being “unable to speak” is a blessing in disguise; none of these remotely match the total delight of being AUTISTIC.

I can see and hear people reacting to this by wondering “Is she serious or is she pulling our legs?” Well, wonder no more! I mean everything I have said and am about to say.

[…]

What do I see as the gifts that autism has given me? My incredible intelligence, unique insights, talent for improvisation, creativity in writing and music, wonderful memory, and awesome ability to teach and help others understand… I believe all of these are valuable “side-effects” of my AUTISM that far outweigh all of the “negatives”. I am who I am at least partly because of what I am, and that includes AUTISM and how it has gifted my life.

That was written by Sharisa Kochmeister, a woman with autism, epilepsy, and cerebral palsy. She was, until learning to type (which she now does independently), presumed to have an IQ of 10. The full text of what she said in the above presentation can be found at the Watch Our Words website.

Therefore, Autism is a friend, a comfort, a companion – albeit a rather annoying one at times, but so are all companions. It is also a protector, a buffer… And it’s who I am. Jim makes the statement that if it were possible to separate the autism from the person, and it were done, then what you would have left is not the same person you started with. In my case, it wouldn’t even be a person; it would barely be an entity, or alive without autism. i would virtually not survive. (maybe a shell… surviving; a physical body, but that would be all. There would be no being.)

Kim, a Canadian autistic woman, wrote that. She learned a non-communicative form of speech as a child under pressure and only began to use speech to communicate as an adult after using a communication device for awhile. Last I heard, she still alternated between speech and typing. The full text of what she wrote can be found at What Is Autism?

World needs retards. Yes! Retards, retards, retards! You can say it, too. Retards. Go ahead and say it. Go ahead and shout the word. Retard is who I am.

Elana Connor was, at the time of writing a short piece reclaiming and taking pride in what’s normally a nasty epithet, a girl in California who had recently begun typing. The full text of what she wrote can be found at Why Retards Are Sad In This World. That is apparently one of the first things she ever wrote.

I dreamed of being normal, the best that I could be —
But it’s awful being normal; why can’t you all see?
I’m tired of being normal — autistic’s what I am.
Why can’t we all be normal, being just as I am?

That is from I Dreamed of Being Normal, by Jeff Seeger.

I am not defective. I don’t need to be repaired. Allow me to be the person I am.

That is from I Am Not… An Autistic’s Response to Prejudice by Joel Smith, a part-time aug comm user and proud autie.

All people are real, in the deepest sense of that word. That means that there is no such thing as a non-human human. But if you look around this room, you will see people who look at least non-standard. And that is where the problem begins. We live in a country where image is kind of a reality more real than reality. My main answer to that is: I don’t need surgery to make me real any more than a beautiful woman “really” needs her eyelids sewn back. The fact that I think I do and she thinks she does is more fairy tale than real. Eagerness to be like others didn’t make Pinocchio real — it turned him into a donkey! And eagerness by parents to cure autism or retardation or compulsiveness will not drive great distances toward the final solution to the actual problem. Because the person who believes “I will be real when I am normal,” will always be almost a person, but will never make it all the way.

That is by Eugene Marcus, who uses facilitated communication. The article is On Almost Becoming a Person.

When Doug Biklen was recruiting authors for his anthology, Autism and the Myth of the Person Alone, he said of Lucy Blackman:

Blackman […] is hardly any more accommodating to what she perceives as my interest in how-to strategies. “’How to’ for what?” she asks. When I requested that she write about her experiences with autism so that others might benefit from her analysis, she told me she found it annoying to be approached about such matters and not about her ideas on non-autism-related topics. She felt my agenda assumed she might be “wanting to be normal.” She does not. Blackman reminds me that my agenda might not be her agenda, and that if someone feels it valuable for her to be heard, she would rather discuss her “pure intellectual thought.” She is not about to unveil a series of “remedies” or “practices.”

He did convince Blackman to write for his book, and this is part of what she said in it:

If I were to say anything about autism, it would be how fascinating it is. The idea that autism is fascinating is more that it is what I hope for the future, that my kind of thought processes are seen as possibilities for the next genetic shift in Homo Sapiens, not that it is a progression but that further down the track the slight changes in individuals scattered among the population is a slight difference in problem solving. Unbelievably those of us who have greater difficulties may be nature’s experiments, and you can’t expect evolution to get it right every time.

Recently, Estee wrote a blog post called My Visits with Larry Bissonnette and Jonathan Lerman. Both are artists who are also autistic. Here is her account of part of her conversation with Larry Bissonnette (another co-author of Autism and the Myth of the Person Alone), who communicates by typing:

Larry is what you call classic autistic. So I ask him outright, “Do you want to be cured of your autism?”

“People who think your disability is a sickness need to be cured of their ignorant attitudes.”

I smile, he smiles, we high-five. We have a moment of understanding and his sense of humor becomes so apparent.

I started with a quote by Cal Montgomery (who speaks using a keyboard and is heavily involved in the cross-disability movement), so I’ll end with one from the same article, Defining Autistic Lives, which was a review of Autism Is a World.

But where Rubin appears to believe that the problem is that autism limits her ability to function in the world, I believe that the problem is that the world is set up for neurotypical nondisabled people. I believe that the problem is that most people take for granted the way the world is. I believe that the problem is that they identify “defects” in individual autistic people, that they presume that these defects are somehow medical in nature, and then, having diagnosed autistic people’s failure to manage in the world as an individual medical problem that happens to show up in a whole lot of us, they conclude that medical professionals should be curing — or at least controlling — us. And having made that conclusion, they continue to accept or support ways of living that shut us out.

Again, these are obviously not the only opinions of people who use augmentative communication, but it would be silly (one would think) to assume that all people who fall into any particular category have the same opinions about everything. (I’m not saying that everyone’s equally right, just that everyone has varied opinions.) And these are not saying there are no rifts in the autistic community and that we’re one big happy utopian family, because we’re not.

But it is evidence that our opinions about being autistic (or as some put it “having autism”), and our deemed “functioning level” (which is often, for some reason, very speech-dependent), are not particularly correlated. People who do not believe in cure and/or find some value in being autistic are represented in the whole autistic “spectrum” as far as anyone knows (this includes people who had no means of communicating about it for a long time), and so are people who do believe in cure or do not find value in being autistic. So it’s about time people quit making ridiculous comments about “If you were one of those people who couldn’t talk, you would not believe what you believe.” Our differing beliefs come from our differing worldviews, not our “functioning level” in the eyes of non-autistic people.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

10 responses »

  1. One thing about being mute and a few autistics I know. A few of the mute ones can speak and do speak on rare occasions but often at great discomfort…so practically, they don’t. Imagining here if you will the feeling of having your head wrapped with rubber bands so that opening the jaw created enormous efforts, the tongue feeling pain from lifting to touch the teeth etc etc. Then, when the voice comes out, it would be like a screech. Yes, there are things about my *self* that I’m sensitive to. I’m sensitive sometimes to the sound of my own voice! Few would understand that one though. They’d say, “How could you not like your own voice?! How could it possibly harm you???”. I think I can tell you about this because even though your experience may be different, you’d be open enough to seeing what I’m trying to relate here without passing much judgement about whether or not it was ridiculous since in my world….there seems to be a set of possibilities that I see that others do not. They might want to say it’s “outside the box” in both bad or good connotations. (much of the time, it’s a euphemistic hint to others that “hey, he’s going ‘out there’ again”) Some of it is followed up with “Focus John! Focus Fo-CUS!”. I’m so very very distressed by colleagues. The so-called polite adult business world with it’s ethics and tolerance. It’s tolerant if it’s stereotypical. I can get away with it if I start speaking with a nasal slurring tone that isn’t too drunk sounding….because that fits their preconceptions.

    I have to say, some of the descriptions seemed to be a bit concessionary on the NPR segment but I really enjoyed hearing your speech synthesizer. I’ve been using Joel’s J++ tool and my IM a bit more. Message boards seem easiest for me though. Tree structures give me some structure that I need. I really related to Michael’s experiencing discovery (brought tears actually) and it was neat to hear Jim’s voice. I’ve never been to Autreat but I keep wanting to go. I have too many excuses in some ways. I know I’m too late again this year. I’ve just got to save and also get the time off and away. (do they accept crashers who don’t mind getting a room off campus at the local inns?)

  2. My first encounters with fellow autistics was when I started posting at alt.support.autism where I met you, Joel, Kalen and at least a couple of hundred other autistics in all the years I was a regular poster there. We all were different people with different opinions but I had certainly the impression that we all stood for one thing, being autistic is the way we are, it’s not a disease and therefore it can’t be cured. Excepting people’s autism, without mentioning that it’s the greatest thing there is, is a way to show respect. In my humble opinion, saying that autistics should be cured is the same as saying autistics aren’t worth living.

    After years of being a regular at that newsgroup, many people stayed away and eventually I left too and moved on. But when I visited other online places, I met autistic people who had different opinions, people who divided autistics between “elite-autistics” on the one side, who in their opinion are of high value for society because of their computer or other skills and on the other hand “retarted-autistics” who should be cured.

    At first I was shocked reading these kind of opinions, I knew they existed but I had not heard these opinions of autistics themselves. Later I read more things that made me unhappy, for instance autistic people who claimed that their opinions should be considered more valuable because they were diagnosed before “Asperger Syndrome” became well known and doubted that a lot of autistics are truly autistic and use the label just to seek excuses.

    Well, the first shock is over, now I’m merely heavily disappointed. I wrote five years ago my life story and published that on my website. Everything on that site is about “me” because I didn’t want to make the mistake to talk in other people’s place. But later I made one exception when I wrote a page that was called “We don’t want to be cured!” and I wrote that page out of respect for all autistics because I was convinced that we all thought the same about that one thing, a cure. Last week I changed the page to “I don’t want to be cured!”, merely changing all we’s in I’s because I understood I cannot speak for all, which made me sad.

    Nevertheless, I know a lot of autistics and also non-autistics accepting autistics the way they are, opposing a cure and I hope you will never get too disappointed because I appriciate all the work you do.

  3. lordalfredhenry: That is part of my problem with speech, which is pretty multifaceted. It’s incredibly uncomfortable, it makes my throat and ears hurt for ages afterwards if I make noise, that’s why I even suppress my vocal tics where I can. There’s other parts too, many other parts, but that’s one part.

    Kirayoshi: Yes, not all autistics don’t want a cure. I know many who do, all over the “spectrum”. But there’s, yes, a large number of us who don’t want a cure, and I suspect if society were structured differently, wanting a cure would be a very odd thing indeed for an autistic person. I’m aiming for that future society. :-)

  4. I think “functioning level” as I use it sometimes relates to speech, but sometimes more to things like how well the person does at things like going to the bathroom when they need to, eating and drinking when they need to, and things like that. Those can be far more unpleasant, if you lack the needed support, than not being able to speak.
    Another thing I wonder – people talk about high functioning and low functioing – I’ve never heard anyone talk about medium functioning. It’s treated like a clear dividing line.
    And another thing – autism is treated like a line from least autistic to most autistic. I knew a 14 year old (he’s now be 15 or 16) who very occasionally said “eat” or his name, nothing else (so occasionally, I never heard him do so, but I was told he did by someone who knew him better than I did). He signed a few words, mostly with prompting. His major way of communicating was to grunt and point. He was also quite social, often showing people things he was interested in (such as campers) and made a lot of effort to communicate.
    I also knew an 8 year old who could speak in full sentences, a lot of it echoed, sometimes used to communicate (like saying “no” while refusing to do something) who seemed quite aloof. If he saw something that interested him (such as shiny ribbon), he’d play with it and ignore us. He often came up to people and sat on their laps or hugged them, but without looking at them or trying to communicate.
    The older boy I’d say is more disabled in speech, but socially less autistic than the younger boy. If I had to put them on a line from most to least autistic, whoever scored most autistic would depend on how important speech measures were compared to social measures.
    PS: I liked both boys equally, and don’t think either needs curing – although I hope both, especially the older one, eventually find more success in communicating, so they can tell people what they are thinking.

  5. I don’t believe in the way the rest of the world divides us up into functioning levels, that is too simplistic and assumes there’s only one dimension to being autistic,

    The assumption is prevalent, so far as I can tell, that there’s only one dimension to being human.

  6. Ettina: I’ve heard the term “mid-functioning” at times before.

    I’ve even had people (casually) try to refer to me that way by basically averaging out my typing skills with everything else, or something. Still seems weird.

  7. Pingback: Creative Destruction » Link Farm & Open Thread #29

  8. Pingback: Rights of Autistic People, with explanations « AthenIvanIdx’s Weblog

  9. Pingback: Reality Doesn’t Work That Way 3, Part III: Can autism be cured? « The Defiant Skeptic

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