…because people only have one “condition” at once. Or something.

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An online friend (who I’ve also met offline) wrote this: How to Teach

I am finding it really ironic that because she was autistic, people assumed they couldn’t teach her anything useful, but when she was completely unable to move due to Guillan-Barre syndrome, suddenly they saw her unresponsiveness as part of that and taught her the same as they would a non-autistic student with Guillan-Barre. I don’t think I would have learned all that well from this teaching method regardless, but I agree from experience that it’s important not to assume that a lack of typical response means a lack of comprehension, and that at least being exposed to various material means being able to sort it out later even if it’s not comprehended right that instant.

Some of this also mirrors my experience walking vs. using a wheelchair. When I walk, people frequently view me as uncomprehending. It happens in the chair, too, but quite often people will assume I have a purely physical disability in the wheelchair, and treat me as more of a person. I actually pass better in the chair, because the chair “explains” all my weirdness. Without a chair or other noticeable equipment, I’m just weird and quite possibly “not there” or “not all there”. So my social experience using a wheelchair is reverse of most people’s, just as Crabtail’s social experience of Guillan-Barre was undoubtedly the reverse of many non-autistic people who get it.

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.

13 responses »

  1. I’ve gotten a hint or two at work that it’s safer or more acceptable to discuss my carpal tunnel/thoracic outlet syndrome than my Sensory Integration issues. I guess because the physical problems are not seen as a part “of me”, it’s assumed that I’m more comfortable with people knowing about them. To a certain degree that’s true, simply because people don’t understand autism, so I don’t want to get into either 1) an extended conversation at work about it or 2) a brief explaination that doesn’t really explan anything. But I don’t want to feel like I or anyone else should be any less comfortable saying something about one or the other.

  2. The comprehension/responding rings very true for me. I have strong memories of people asking me to do things and being perfectly aware of what was being asked of me, but being unable to speak, or move to respond. So to an outsider I would have given the impression of not understanding.
    With my son it does very much appear at the moment that he has limited understanding of spoken language. But that doesn’t prevent me from telling him things and showing him things, he picks things up very well if he can see and feel what is going on and I talk and sign and show him pictures and try to ensure he gets as much chance to experience the world as he can.

  3. I lose understanding of spoken language about once or twice a month, or once or twice a day dependant on how things are going. It’s as though someone is speaking in a foreign language to me. The rest of the time I understand fine but can’t get the words out, or initiate, or explain what I mean. I have tangential speech, pause in odd places, still talk quite fast (used to be very difficult to understand) and voice my thoughts mid topic. Most of what I want to say or ask help for doesn’t get expressed verbally by me until perhaps a good while has passed (I’m talking years). Because I do speak few people listen to what I’m saying and what I’m not saying.
    People do make assumptions on why and how a person is and a lot of those assumptions are based around erroneous perceptions. In the outside world I appear quite a bit different to how I write, the exception being if someone asks me about one of my interests and then I can talk very articulately. If someone reads my posts online they are often shocked I am on the autistic spectrum, but this is usually due to their ignorance of the autistic spectrum. At any rate whilst I do not (as far as I know) have any other reason for my being the way I am, ie no dual diagnoses, I can relate to the different ways of being judged in differing circumstances.

  4. Off topic

    I really like the new decor – it’s almost Australian somehow:) The background scene looks like Moontwingee, an Aboriginal sacred place (for good reason).

  5. I had been wondering why your site hasbeen spoadically off-line today–guess your playing around with the decor would explain why!

    I also see you have linked to more blogs including mine–thanks! (Except it’s spelled “Reunify Gally” … “Gally” being an affectionate nickname in the Deaf community for Gallaudet University)

    Will look forward to your finalized background!

  6. The other thing I’ve noticed that people seem to have trouble grasping is the concept of being both autistic and (insert some other thing that is generally thought of as a disorder, psychiatrically speaking, even if someone states that they experience neither it nor autism as one.)

    Because apparently, autism cancels out all those other things, in some weird way, or can’t co-exist with any other kind of neurological or mental variation. Well, unless you describe it as a “co-morbid condition” or as a “coping technique”– in that case, then some people will believe it exists, albeit that it’s pathological, but they’ll also decide that it must all be part of autism in some way, and start trying to compose theories around that notion, or start seeing it in every other autistic person they run across even when it isn’t there.

    Of course, it isn’t any better when autistic people themselves are the ones doing the self-pathologizing and theorizing and claiming to see it in a bunch of other autistics they run across.

  7. I worked with a group of kids who had no ability to speak, walk, two being blind. You can’t take for granted that there is a fully sentient human being inside. I taught each child where I ‘sensed’ they were at. It’s weird, and I don’t know how to explain it, but you just know they know without having a typical “test” to prove it. I feel so blessed to have taught those kids.

    Each child has a gift that is unique to them. You have to see the child, and not the disability.

    As an aside, I went to the Holocaust Museum last week. It’s no surprise the “cleansing” began with the handicapped. I will bring out more info as I read a book I bought there.

  8. Tamsin^Amorpha said Because apparently, autism cancels out all those other things, in some weird way, or can’t co-exist with any other kind of neurological or mental variation. Well, unless you describe it as a “co-morbid condition” or as a “coping technique”– in that case, then some people will believe it exists, albeit that it’s pathological

    I can see where this kind of misperception and misunderstanding would be more common with any condition that can’t really be seen (and therefore are harder to understand for people who haven’t experienced them). But even with comparatively straightforward, physical conditions, people can sometimes get confused.

    For example, it happens that I have broken or sprained the same ankle (right one) repeatedly over the past 7 years, including tearing the tendons. As a result, the tendons in my right foot are signficantly shorter than they were 8 years ago, meaning that I can no longer run or jump, and that navigating down steps is more difficult for me unless I have a really good railing to hold on to. So that’s my more chronic foot condition.

    But then, on top of that, a year or two ago I had plantar fascia in the same foot, but in the flat of the heel not the ankle. And my mother immediately assumed that the older ankle problems had somehow caused the plantar fascia when, in fact, there was no good reason to think that this was the case, or at least not from what my foot doctor said. (If anything, I tend to favor that foot because of the ankle problem, which I would think would generally put LESS stress on the heel, not more.) I admit I didn’t ask him directly, but he was very much aware of both problems so I would think he would have said if he had seen a clear possible connection.

    I guess any time people hear of two “unusual conditions” occurring together (“unusual” actually meaning “any condition they’re not personally familiar with and don’t really understand”) they tend to have trouble processing the idea that just because they might happen to occur together in the same person, it doesn’t mean they’re necessarily linked. So they look for the link even when there’s no real logical reason to think there is one.

  9. I remember sitting at an IEP meeting for my son and they annouced yes he had dyslexia, dysgraphia, a social anxiety disorder and he might be bipolar. So they immediately started talking about what SPED classes to put him in, when the shrink put up his hand and said ah yes, he also has an IQ over 150 and qualified for the “gifted” program.

    Silence followed, because there were no arrangements for a student to in fit BOTH categories. They patched together a program that satisifed no one and did nothing for him, so they were highly relieved when he simply dropped out of school 3 months later, got a GED and started college.

  10. They really weren’t sure what to do with me, because by the time I was in special ed I’d already done a year of college, but my IQ had dropped out of the gifted range by that point as well (it was gifted when I was almost 6, high average by my teens, low average by my twenties, don’t even ask because I don’t know). They ended up writing an IEP that was entirely about social skills and management of anxiety. And, er, some unintentional honesty on their parts at times.

    So it had things on it like “Amanda will initiate and sustain ______ number of interactions with her peers on a daily basis.”

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