A Way of Describing/Explaining Autism

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The original title was A Way of Describing Autism, but I kept putting the title as A Way of Explaining Autism. Oh well. At any rate, I asked Dave Spicer his permission to make a video of his article, and he said yes. So here it is, an analogy between autistic people (or at least, how lots of people perceive autistic people) and different kinds of rocks:

http://video.google.com/googleplayer.swf?docId=4008095161885466087&hl=en

(Edited to add: Here is Dave Spicer’s website. I met him at a conference years ago, and he was really nice.)

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. Oooh, I love rocks and minerals. One of my favorite is fluorite, it’s really prety and changes appearance as you turn it, but it has little stacked cube shapes on the surface and is colored kind of like the amethyst crystal you had. I hope I’m like a fluorite, though I don’t know what the analogy would be. :-)

    Thanks for making the film, it’s a nice combination of your talents and Dave Spicer’s.

  2. What wonderful analogies and a great cooperative effort.
    Some words that come to my mind–deep, varied, beautiful, unique, tactile, complicated, reflective, and treasure.

  3. Ms. Clark: I often feel like the amethyst. People see me from one angle and think that’s all there is to me, and then from another angle and think that’s all there is to me, and it continues and continues. Then if I turn around and they see me from another angle they get confused, scared, or angry. People rarely realize that all these supposedly contradictory aspects of me are all part of one person and in fact more indivisible than an amethyst is.

    The leopardskin even visually reminds me of the way some people’s pattern appears to me in my head, very oriented on routines and details and stuff. Not the way I think (it would make me dizzy and head-buzzy and confused, I’ve tried it) but certainly the way a lot of people I know seem to.

  4. i think i am like the blackmetallic one (hematite?) not only becos i like that stone a lot, but becos there is maybe unintentionally a thing like the quartz with this one, too… when ppl hear you about nattering on about your special interest they think you are clever in general but then on the inside where they can’t see, there is all kind of unknowns. i realized i have a “tombombadil’s garden effect” too, only my garden is a different garden.

    hope you feel better soon, Amanda

  5. PS: it was a good essay to bring to wider attention. i’d never really noticed it before, but with the literally visual (as opposed to in the reader’s mind) presentation, it sticks better in the memory.

  6. These rocks clearly have too much mercury in their system. They must begin regular chelation therapy IMMEDIATELY or else the autistic pathways in their brains will CALCIFY and they will be permanently INSTITUTIONALIZED and RESTRAINED in a box in the back closet of small, dark, dank, cobwebby, abandoned museum of rocks that no one any longer visits. And they must also IMMEDIATELY begin an intensive ABA program, 40 hours a week, with aversives, so they can be cured and eventually become good little proper pieces of granite, just like ALL rocks ought to be!

    And, I utterly agree with Evonne. These poor stones are being exploited! Shame on you for presenting these false autistics just so you can continue your pernicious campaign of encouraging all parents to utterly give up on their poor autistic tragedies — I mean, children!

    As just one example, look at that supposed amethyst! A stone that presents as both purple and white at the same time is CLEARLY a fallacy! These are CLEARLY two ENTIRELY DIFFERENT STONES!

    But, what people need to understand is that the white stone has ABSOLUTELY NO RIGHT WHATSOEVER to ever speak out on behalf of the purple stone. They CLEARLY don’t even have the same diagnosis. The white stone, quite obviously, either has Aspergers syndrome or simply isn’t autistic at all. And the purple stone is clearly a hopeless, helpless pitiable little creature — er, I mean, person with low-functioning autistism. So when the white stone foolishly tries to explain what “autistic” people need, and (oh, horrors!) actually claims that autistics don’t need a cure (quick, bring me a dose of chelation! I think I’m about to faint!), this only proves that this white stone CLEARLY has NO IDEA WHATSOEVER that horrifying creatures like the purple stones even exist! So we must carefully explain to the white stone the true problems of poor autistics like that nasty little purple stone.

    If the white stone tries to claim that it IS the purple stone, or that it presents some of the same characteristics as the purple stone — well, obviously that white stone must be either deluded, or lying, or exploiting the purple stone for its own evil, anti-chelation, anti-ABA campaign! In which case, we can respond by simply ignoring the white stone, and continue to educate it about the existence of purple stones and why they must be rescued from their purpleness.

    It is also sadly clear that we must NEVER allow the white stone to speak at our conferences! Unless, of course, the white stone starts appropriately advocating chelation and an intensive ABA program to cure all autistics, and is also able and willing to provide a minimum of 50 pieces of documentations, including letters written by a minimum of 20 different highly-paid pro-chelation and pro-ABA professionals, verifying that they actually have a diagnosis as an autistic person.

    (I’m tempted to sign myself as “John Worst Jr.” just to top off this parody :-P )

  7. Hey there, I linked over to your blog from the blog “growing up with a disability.” There is a lot that I could say, but there isn’t much room and I fear that I will overwhelm both you and myself. Suffice it to say that I am a disability and mental illness support worker who strongly identifies with the autistic people that I have worked for to the extent that I tend to gravitate towards this line of work.

    In any case, I wish more videos were available of your experience of autism, particularly the experience of “low functioning” or profound Autism. What I think it just beginning to become apparent is that, like the deaf community, perhaps Autism is merely a different way of thinking rather then primarily a disability in any way other then societies interactions towards those with Autism.

    Thanks for your presence and by far your eloquent discussion.

    Noah

  8. Some people have used the words low-functioning or profound to describe me. I don’t experience myself that way. Or as “high-functioning” or “mild”.

    Those are ways people describe me when they look at one end or another of that amethyst, again. (And at different points in my life people have looked more at one end than the other.) They don’t actually bear much resemblance to how I experience life, or to how my experiences fit in among the experiences of other autistic people.

    Nor do all the things that make me look more stereotypical have much (if anything) to do with being autistic. I went to a video store the other day with a friend, and since it was a short walk I walked unaided. I had to constantly shift around on my feet, because my legs start hurting if I stand still in one place for too long with my full weight on them. They’ve been that way for a number of years now, but have not always been that way, and this seems so far unrelated to autism.

    Similarly, my level of overload (and subsequent actions of an overloaded autistic) is increased by the fact that my migraines have become more frequent (actually, constant) and severe.

    Take away those things, and I’d still look autistic, but I’d do a few less things (or do them less often) that probably get attributed solely to being autistic by most people who look at me. It’s like, because I’m autistic, every atypicality in me (whether positive or negative) gets explained as “part of autism”, when that isn’t the case.

    Moreover, as I get over various fears and compulsions and such that are also to my knowledge not part of being autistic, I might look either more or less stereotypically autistic, depending on whether the fear/compulsion/whatnot was something that caused me to, in reaction to it, do things that happened to look stereotypical, or things that happened not to. Certain fears have lessened and caused me to relax my guard against certain actions that come naturally to me (that happen to look autistic), and certain other fears have lessened and caused me not to do certain actions that were only ever the result of fear (that also happened to look autistic).

    Not to mention the way in which my brain maturation over time has seemed to favor some skills over others. When skills fall away that are deemed part of normalcy or are added that are deemed part of abnormalcy, then I look “more autistic,” when skills fall away that are not deemed part of normalcy they go unnoticed, when are added that are deemed part of normalcy then I look “less autistic”.

    When all the “more” and “less” autistic-looking stuff that people make such a big deal about (and make all their judgments about “severity” and “functioning level” through) is this tiny narrow little package of appearances within the broad range of my life and appearance. That there are other aspects of my life that I consider far deeper and more significant than those, seems to escape people who want to know me as a representative of an imaginary subtype of autism. (There are real variations in how people are autistic, the narrow range of how well we speak and a few specific responses we show to our environments does not cover those variations anywhere close to fully, and excessive attention to it can in fact mask the real variations and patterns.)

    This is not to say there’s no sociological significance to these ideas (and sociologically I’ve been in more than one category in that regard), but in terms of being intrinsic aspects of the way autistic people work I don’t find them all that compelling. My life has, sociologically speaking, been one big amethyst spun erratically on the finger of someone with such lousy object permanence that they actually believe it’s two separate rocks when it’s turned in two separate directions, but the rock knows it’s the same rock no matter how people see it.

    Meanwhile I keep growing in the direction I was meant to grow, and don’t care whether that growth happens to coincide with that little narrow window of abilities people care about shifting more to looking stereotypically autistic or stereotypically non-autistic or stereotypically anything else — the fact of it being growing in the right direction concerns me far more than that ever will.

  9. “It’s like, because I’m autistic, every atypicality in me (whether positive or negative) gets explained as “part of autism”, when that isn’t the case.”

    I can relate to that. Before I knew I was autistic, every atypicality was explained as PTSD, except for the few that were attributed to giftedness.

  10. It’s like, because I’m autistic, every atypicality in me (whether positive or negative) gets explained as “part of autism”, when that isn’t the case.

    This overgeneralization problem is not even limited to how people perceive disabilities or diagnostic labels. When people find out that I’m vegan, for example, they sometimes have a tendency to assume that EVERY food choice I make is necessarily related to veganism. So if I pick the onions out of my food or something, they might look at me with perplexity and ask, “But why aren’t onions vegan?” (Er. They ARE. I just don’t like them much.)

    But I do think that it is far more common to disabilities (and diagnostic labels, and sometimes sexual orientation, and I imagine also race). It’s like whatever characteristic a person has that makes them appear “different” is sort of magnified in the eyes of hearing, non-autistic, non-disabled people (especially heterosexual white people) that it sort of overshadows everything else until the person can’t even imagine a real personality behind that characteristic with all the usual variations that anyone else might have. Sometimes it can even be dangerous. I have heard stories where people with, say, some sort of mobility impairment go to the hospital to find out why they’re feeling sick, but instead of listening to what symptoms they ARE experiencing, they start asking all sorts of irrelevant questions about their mobility impairment … as if that had anything to do with why they are suddenly feeling feverish or sick. (This is especially a problem in many developing countries, but I think sometimes even in rich countries.)

    Maybe this over-generalization is a mental crutch used by non-disabled non-autistic people because they lack sufficient theory of mind or something? :-P

  11. First, this video rocks. Ha.
    Second, I am not the Noah above. I am the one from before.
    Third, responding to your next post, it sounds like you might want to wrap your blue inhaler in a cloth or napkin so you remember it is not the same as your red one.

  12. Pingback: Autism Vox » Get Your Child Checked For It

  13. I happened upon your blog while cleaning my email! My grandson has been diagnosed with autism and at age four, almost five, is having some tough times. Can you or have you talked about your early years and what things looked and felt like to you? I never want to hurt Kyle or any kid, but don’t know how to approach,support or communicate, especially since the family has moved away. Their autism support system is much stronger where they are, but I miss just cuddle times.
    Your stone video is AWESOME. I would like to use it for a presentation at our church school to parents and family.May I have permission or what can I pay?
    You clearly have such a clever mind and strong feelings about some of the things people say and do. You impress me as much as Dr. Grandin’s book about seeing what the cows do. Moreover, the more I read, the more I realize one of our daughters and even I have many traits on the spectrum. For “somewhat typical” (WHAT IS NORMAL?? and WHY WOULD ANYONE WANT TO BE NORMAL?) adults, is there any special help for us?

  14. I love this. When I was younger I didn’t know how to explain my disability. I was told it was a perception disability, a learning disability and a brain disorder. Only recently have I realized I actually have PDD NOS a form of mild autism.

  15. wow…what a great analogy. i have had the pleasure of hearing dave spicer speak at the autism conferences i have attended. i love your site here and would love to link to you. my youngest son is on the spectrum and i have multiple sclerosis. i have just started to construct a website of our adventures.

    the address is: http://www.theautismexpress.com

    i will definitely be back to read the rest of your blog.

  16. This is amazing… as my name says.. I have high functioning autism.. i am an adult with it and i use this video, ALOT, to explain to normal people exactly what it is, and how to understand it. thank you soooo much for this

  17. I didn’t finish listening/watching the video because as the parent of teenager with Down Syndrome and an educator who teaches others – primarily grade school students – about people with disabilities I am very disconcerted by the classification of people as Autistic people. or Autistics.
    Language is defined as verbal communication. Verbal communication – what we say,
    how we say it, and what we hear, affects how we perceive, and consequently treat others.
    I am very bothered when anyone talks about people with disabilities as though they are a disability. Language is powerful and it shows intent.
    When we define a person by his or her disability we are not only limiting our own perceptions of that person but also the perceptions of anyone who is listening to what we say. Person first language recognizes that people with disabilities have value and dignity, and it gives them the respect that they deserve as human beings.
    Language is powerful and it shapes out sttitudes.
    Until those of us who have disabilities and those of us who work with people have disabilities recognize the fact that a disability is only part of who a person is, society will continue to treat people with disabilities as second class citizens.

  18. Marlla Sisley,
    I think you missed the point. This is about how others perceive autism.
    Also, autistic people often tend to dislike person first language. Though autism isn’t all of who we are, it is a part, probably a bigger part for many of us than for people with Down Syndrome. And many of us look ‘normal’, and are therefore assumed to be just like everyone else or to have a ‘normal person’ trapped inside autism, unlike Down Syndrome people who seem to me to look more different than they really are.
    For all disabled people, the disability is *a part* of who we are. Not all, but not insignificant either. Different groups, because of having different experiences of stereotyping, tend to emphasize different aspects of our identities to fight that.

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