D’s Autism Society Presentation (November, 2006)

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Autism Diva posted this already, but I’m posting it again:

By an autistic boy whose mother I know, from his typed answers to questions at an autism conference. He was 9 or 10 years old when he did this.

Some of my favorite questions and answers:

Do “normal people” sometimes scare you?

No, normal people don’t trouble me, but people who wished that I was normal — that is, people who see me as only a broken normal person rather than as an intact autistic person — do hurt me.

Describe one or two things that people can do to help you.

They can have utter respect for diversity, and they can understand that diversity leads a tattered life when not wedded to tolerance.

Do you think it would be a good thing if researchers found a cure for autism and Asperger’s?

The road to Hades is paved with good intentions.

Would you want to be cured?

I would rather be cured of bigotry before being cured of autism.

One last unsolicited comment: It is my profound opinion that those who desire to divide us into “high” versus “low-functioning” autistics deliver a great disservice to our common quest for true equality.

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.

25 responses »

  1. That was good to read. What interested me (well, part of what interested me) was his style of writing is very similar to my own. Not so much when I’m on the internet, but rather when I’m writing an essay (though that has been some years now), or I’m writing one of my stories. Very wide ranging vocabulary, fairly lengthy sentences and – as he said he’d like to speak better – then he may also have a high difference in his speaking and writing styles. I know with myself my speaking style often comes across – to quote others – as disjointed. My writing style is far more fluid and I have reached the point now, for example if I need to speak to my son’s health visitors about something important, when I’ll write the sentences down of what I wish to convey.
    I always presumed (not being aware of anything different), that my writing style was due to the high amount of books dated pre 1900 that I read – and indeed favoured – over more modern styles of writing, as they seemed to adopt what to many people would be observed as a more formal tone.
    Regarding perceptions of what other people’s intentions are, I cannot usually pick up clues at the time they are speaking. However, I suspect this is because I am often distracted by looking at something, or I am trying to keep track of the conversation without drifting off (something I do have a tendency to do). However, if I then think about what was said, or especially if I am reading something on the internet I can be extremely perceptive and often get a “gut instinct” for when someone is trying to cause trouble.
    It is unfortunate that all the official diagnostic criteria for autism and aspergers centre around a wholly negative viewpoint. Hopefully forums like the one above will pave the way for a more accurate and less negatively biased definition of what being on the autistic spectrum truly means. I know with myself I initially dismissed the prospect of my being on the spectrum as I had been conditioned into thinking that someone with a good, vivid imagination and an awareness of the need for social justice and equality – to cite two of my positive attributes – could not be on the spectrum. It was not until my son’s diagnosis that I discovered that my personality and my perceptions and my sensory issues were all connected with my being on the spectrum. I do wonder, consequently, how many other people are out there who are definitely autistic and who yet are unaware that they fit the criteria.

  2. In the last two weeks, I have just begun to comprehend that the autistism is as much of what makes the person him or her as is their heart and his soul. I have “met” and read the words of some outstandingly beautiful, sensitive and intelligent human beings. What I still wish to learn–long to learn–need to learn is how to relate, share ideas and inter-act with those who do not speak or keyboard their thoughts. How does one communicate to ensure the person’s rights and wishes are known and followed? Amanda, this is where my thoughts have been gptten “stuck” over the last days.

  3. Wow, I love that idea of “broken normal person,” that seems to be how people treat difference. And it’s true, I think we should be allowed to be all the ways we are as humans, I don’t know why this is such a hard concept for so many to get. Normal is the most irritating word in the english language.

  4. My personal favorite quote from this video (already included in Amanda’s list) is: I would rather be cured of bigotry before being cured of autism.

    You could substitute the word Deaf for the word autism and accurately capture the feelings of many culturally Deaf people. (Which isn’t to say that there aren’t some non-culturally deaf and hard of hearing people who would welcome, or at least accept, a partial or complete cure. Even a few very strongly culturally Deaf people have pursued cochlear implants. But many Deaf people do reject the idea of a “cure.”)

    Of course, you could also substitute GLBT for autism and get the same results.

  5. Many years ago, I watched the interview of a man who, due to some kind of accident, had become a paraplegic when he was a young man. Of course this had changed his life in myriad ways, but he seemed to be doing pretty well. The interviewer asked him if he could turn back time, would he change how his life had worked out? Would he erase the accident from his life? Did you regret what happened to him? His answer was no. He said that he was happy with who he was. He like himself. And that the accident was part of the course in life which shaped him, and as a result, since he liked who he was and loved his life, he would not change anything about his life, including the accident. He did not see himself a a broken man who would be whole if he could walk. He saw himself as a whole man who did not walk, but recognized that without the accident, he would have become someone else.

  6. A wise young man said:
    “One last unsolicited comment: It is my profound opinion that those who desire to divide us into “high” versus “low-functioning” autistics deliver a great disservice to our common quest for true equality.”

    I cannot agree with this more! The whole “HF/LF” is a bunch of baloney and cannot define any person, of any race, color, or Neurological status. I hate those terms.

  7. Claudia (comment #5):

    I. King Jordan, the first deaf president of Gallaudet University, has said something similar in media interviews. Apparently, until he was 21 (and still hearing), he was a pretty aimless youth — not a bad kid but no goals, no ambition, no plan for his life, just kind of drifting along. Then when he became deaf (after a motorbike accident) this apparently brought home to him that he couldn’t just take a job and career etc for granted, he would have to work hard for those things. And that eventually brough him to Gallaudet and, he thinks, a much more productive career than he would have had if he had remained hearing. So he wouldn’t take back his accident either.

    Okay, he seems to equate “contribution to society” as “paid labor and lucrative career” which overlooks other kinds of possisible contributions (this blog, for example). But you get the gist.

  8. L.

    If you’ve been reading ballastexistenz for a while then you’ve probably already seen this. But just in case you haven’t, I think you would enjoy Amanda’s video interview of Laura Tisoncik. Don’t let the title scare you off: it’s not actually about “curing” autism. Among other things, it’s about how HFA/LFA divisions are meaningless.

    http://ballastexistenz.autistics.org/?p=240

  9. I had hoped The Diva would have printed the text of the video, but I see that she didn’t. Ten minutes was a little long for me to sit and watch a video of text where the words appeared far more slowly than the speed at which I read. I’m glad that The Diva and Amanda at least printed a few quotes — I agree, they’re very good.

    By the way, welcome back, Amanda.

  10. This might be sounding a sour note, but I found the style exceptionally adult-sounding–so much so that I have to suspect, if not ghostwriting, than some prior coaching or scripting was involved. I don’t know a ten year old who could write that well. I, as a (supposedly) hyperintelligent child already immersed in Austen, Hardy, and the rest of the Great Canon, didn’t write anywhere near that well when I was ten–or even fourteen or fifteen.

  11. Please try not to read this post as a criticism of the video. Rather, after viewing the video, I find myself lacking something that I believe is very important. I know the video is not perfect, but that should not prevent us from analyzing our present situation and developing a road map to guide our next steps.

    I think that Michel Foucault’s only criticism on this matter would be that we are not being critical and specific enough of narratives of prejudice and faulty criteria of person-hood.

    What I would like to see is some alternative definitions of a person that make no mention to communication or sociability.

    Each of the examples of a bright individual giving profound responses give people the crippling expectation that every autistic person has the ability to make a communicative breakthrough into the public sphere. Where there are people with autism that can only turn to dogmatic medical practitioners (or less), I find this technique less than liberating, particularly because the examples show autistic persons displaying their intellectual beauty because they communicate somewhat like normal people.

    How does someone without autism communicate with those less able to speak? It would be incredibly unfair to shove a keyboard or some alternative text-generating device in the hands of a random autistic person and expect a dialogue. Computer mediated communication is possible only with both money and social support (this applies to all people). If I support the universal human rights and an egalitarian difference principle, does that mean that autistic persons can now participate in public reason? Does that mark the end of the struggle? I think progressing along this line of reasoning enables the irresponsibility of ‘normal’ people like me, and is incredibly unfair to autistic persons. I also think that the video above risks leading people down this path.

    Like I mentioned above, I am sympathetic to the overall project of the autistic liberation. Rights should not be contingent on the use of conventional communication–the surrender of rights should require the employment of conventional communication. The video shows a iteration of an autistic person under the protection of some fabulous parents and advocates. This starkly contrasts with the unspoken dark cases where a autistic person has no one else but his or her unconventional ways of communicating with the world. When I celebrate the beauty of a 10-year-old composing elegant prose, I do not feel that his freedom is in jeopardy. I do, however, feel that I have learned nothing of how to defend the rights of those unable to speak my language. I feel like I have stopped to view an attractive feature of life, but my perusal has delayed my arrival at a very important destination. Like Amanda said, people are being tortured, people are dying, because they are considered nonpersons. My purpose in this post is to re-emphasize that fact.

  12. kishnevi: I’m familiar with this family. It’s not ghostwriting or coaching. It’s if anything the other way around. At six years old, this boy was writing things that his mother — who has a background in language, mind you — had to look up in the dictionary. He has hands-down the largest vocabulary in his family, and has since long before he wrote this stuff.

  13. the answers felt very first-person to me, and i have no problem believing they are the boy’s own. (so sad to see the continued, typical diffidence, here and elsewhere.) in fact i found myself already imagining where he’ll take his language next (beyond all those adjectives).
    and while brian does have a point (our attraction to profoundly communicable cases risks upending the quest for personhood-respect *despite* non-communication), i find these exceptional (?) cases do, at the very least, contribute a solid push off the cliff to the old “empty shell” commonplace.

  14. I was writing either at that level, or almost at that level when I was ten. I had what many would see as a very formal way of writing for the most part.

  15. Dear Amanda,
    Thank you, thank you, a million times thank you. I am so very greatful that you have shared your story. You have truely taught me so much about myself and this crazy, wonderful world we live in.

    Rosemary says it more elloquently than I ever could in #2, but I add my 2 cents worth…

    As someone who would certainly be classified as “on the spectrum” if in school today, I see how I became “normalized”, as I have recently come to think of it, never mind that “normal is just a setting on the clothes dryer”( and yet, of course, have never really felt anywhere near fitting into that range, always feeling like a total imposter)

    As a parent, I see how I have tried to do the same with my son.

    As a teacher’s aide, I see how I have been expected to do this with the children with multilple disablities in our classroom in school also.

    It hurts to see all this, since I have always wanted to be a support and help to each person to achieve their own purpose in life. But as you say a certain road “is paved with good intentions”.

    Thank you for opening my eyes to see what I have done that is unhelpful, please help me understand more of what would be helpful.

    This has long been my “mission in life”, 15 years, since my son was in kindergarden, to eventually take another careeer step that would be more helpful to children, that have been “identified” in schools, to help get rid of the lables.

    Now I’m not so sure where to step with out stepping in “it”, which I may have done enough of already.

    It seems we truely need an overhaul of the education system…

    sorry I’ve been up since 3am reading your site… so I’m losing it here.

    Maybe there are no answers, but have we made any progress with the individualized plans?

    So many things I want to ask. But most of all I want to tell you how grateful I am for all you have taught me.

  16. i was never at that guy’s level at that age (ok, at any age), but i have no doubt that some people are (including him, especially as we have a personal witness).
    i would speculate this, though: at age 9 or 10, reading the KJV for church and Dickens for fun, i probably had a higher active vocabulary (in one language) than i do now in any of the 3 languages i can use passably well.
    i am pretty sure i have noticed even my receptive vocabulary decreasing, too, maybe (i hope) due to lack of practice or to shifting brain priorities, rather than already-declining brain capacity…
    although… things i have learnt lately indicate to me that a possible loss of IQ points should not make a person feel they had lost their self or something…

  17. Brian, i think it is useful to think of the things that were said in this very blog at this link [ http://ballastexistenz.autistics.org/?p=326 ] in paragraphs 18-22, ending with this:
    And I simply can’t understand the attitude that says “Don’t show this one person on TV, they’re not representative.” Who is? And who says that when we appear on TV, it’s to be representative in every way of every autistic person? Might it not be because we have ideas that are important to the world, independent of our particular medical labels? (And some of the labels that were used on the broadcast are not terms I would use for myself, for that matter.)
    i think what Amanda says here applies just as much to any autistic person: the more of us they see, the more they can know how various we are.

  18. I feel that the tomatoes have not been riding elephants long enough to have the scarecrows in the valley play parchisi with the dogs from the pound in the emerald city. If there WAS going to be a band play at the festival of the purple clouds, it should have been the one featuring the boar and the singing bird.

  19. Andrea,
    Thank you for posting the link to the video, I had not actually seen it before.
    I agree with Laura’s representation of High/Low functioning. The terms really do bother me, because I think ALL people can be placed in both categories, depending on what you’re talking about. And I mean ALL people, autistics and non-aut alike.
    I agree with her that it’s a disservice to both “types” ignoring assets for the “LF” and ignoring deficits in “HF”.
    Great interview. Again, thanks for pointing me to it.

  20. L,

    Glad you liked it. Amanda has done a bunch of videos. I also like her video talking about the label “retard” http://ballastexistenz.autistics.org/?p=220 and her video on “Being an Unperson” http://ballastexistenz.autistics.org/?p=223.

    Re, all of us fitting into both categories: in my case, I suppose I could fit into “high functioning” when I’m doing things like writing speeches for my boss, but “low functioning” if I had to do something athletic like play baseball or climb a tree (I can’t catch; I could never run that fast even before I injured my foot 7 years ago and stopped being able to run at all; and I’m just not well coordinated). But society is more tolerant of things like poor athletic coordination than it is things like inability to communicate through speaking. So I suppose the “divisions” between HFA/LFA really reflect the values of the people doing the categorization more than they do anything about the person being categorized.

    And then, I could be “low functioning” when I have the flu and can’t do my normal activities. But society is more tolerant of fluctuations in skill level that can be traced to an obvious and very common cause that people understand easily because they’ve had the same experience (illness, recent injury, fatigue) than it is of fluctuations traced to a poorly understood disability. So one gets labeled as representative of “low functioning” while the other doesn’t.

  21. Amanda’s videos are in the PosAutive Youtube group at http://www.youtube.com/group/posautive and mainly in its ‘sense’ subgroup too. There are a lot of worthwhile and strongly argued videos in the sense group – and a lot of fun videos in the other groups too. We started the Posautive Group to counteract the widespread demonizing presentation of autims in the media.

  22. Thank you, Dinah. This sounds like a terrific concept.

    As a deaf person, how can I identify which videos are accessible to me? (i.e., have captions for spoken parts AND ALSO to describe background noises etc.)

  23. Thanks, Amanda.
    Does Drew primarily type when he wants to communicate with English language?

    I like D’s poetry on YouTube, the trampoline gymnastics, and the videos of him interacting with Harley the horse. I’ll probably watch more later…
    Have you seen this article on an australian cattle dog assisting in therapy with an 8-year-old autistic boy? You can watch a 20-minute video on the site.

    http://www.abqtrib.com/news/2007/mar/01/effects-animal-assisted-therapy-child-autism/

  24. Many of the ideas respresented here are a breath of fresh air. They address universal truths of humanity and social justice. Anyone would be well-served to visit this site for its affirmation of the human spirit and as a refresher on how best to treat each other.

    A caution: Using a metaphor of war to characterize autism research (Combatting Autism Act) clearly represents the sentiment of the mainstream population and should serve as a warning to all people with autism. Mightn’t these funds be better utilized if they were used to determine to discover the wonderful talents that people with autism possess? It may well be that people with autism are better adapted to our increasingly electronic age, so we better not squander this resource.

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