shades of grey on the autistic spectrum.

The discussion at the Guardian on curing autism that I blogged yesterday threw up the old chestnut that we have a severe form of autism where children are non-verbal, prone to self injury and violent tantrums and not even toilet trained. On the other hand we have a mild form, known as Asperger Syndrome, where quirky individuals struggle with social skills but are basically OK. Unlike the severely autistic kids, they don’t need a cure. But because they don’t need it they want to deny it to the kids who do need it.

This argument assumes that we have this clearcut break between the two forms of autism. It also asumes a worse case scenario for all those with severe autism and that life is a peach for the mildly affected asperger types. Reality is, of course, somewhat different. For a start autism is a spectrum disorder. It exists on a continuum with no clear cut dividing lines. Secondly, it is dimensional rather than categorical. People of a certain age [over 50s like myself] will remember the old stereograms with a simple bass/treble control. It was either/or. Then we got music centres with graphic equalizers where you could independently manipulate half a dozen individual variables. This serves as an analogy for autism. Once upon a time we thought it was either/or. Now we know it is a lot more complicated than that.

I get to see this all the time. I teach in one of the five designated special schools in my county. Our special schools are for childen who used to be described as retarded but are now described as having severe and/or complex learning difficulties. Many of them are also autistic. Since September 2004 I have had 43 children in my class. Out of 43 pupils 18 are autistic. My county has a very parsimonious record for funding out of county residential placements; 10 children at the last count. So it is safe to assume that my class records account for most, if not all, of the severely autistic 11 and 12 year olds with learning difficulties in my school’s catchment area.

So what do these guys look like? I did a quick survey, dividing them up into autistic [ASD] and non-autistic [NT]. then I counted up 5 categories of behaviour.

  1. toileting
  2. language
  3. behaviour
  4. self injury
  5. none

Some children feature in more than one category. Those in ‘5. none’ still have severe cognitive impairments.

bar-chart.jpg

Three things strike me from this highly anecdotal ‘research’ of mine.

  1. The behavioural markers that come up so often in popular debate; toileting, speech, tantrums and self injury; are not more prevalent in autistic children than they are in other children with cognitive impairments. [And, curiously, these popular criteria for autism are not the same as the official criteria of DSM-IV and ICD-10.]
  2. A significant minority of kids with ASD and almost half of the kids without autism had no severe problems in the four areas of toileting, speech, behaviour and self injury.
  3. Something that is not obvious from the chart, but some of the most challenging pupils in behavioural terms were also  amongst the least impaired in other areas.

OK. This was a small sample and lacked a control group. If I had done this 5 years ago there would have been more self injury amongst the autistics and less with good languge skills. But I stand by my belief that the negative outcomes that are so vigorously promoted as an inevitable adjunct of autism are just as likely to be related to level of cognitive functioning. Even then, they are are not typical of either autism or of severe mental retardation. There are shades of grey on the autistic spectrum.

Autism … it’s not what you think

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11 thoughts on “shades of grey on the autistic spectrum.

  1. I have been tempted to say, and I think I have said, that it’s not the autism that people want to cure, what seems to make some parents crazy for a cure are things they want to rid the child of that are not intrinsic to autism, like the most extreme cases of head banging and self biting.

    Is it the autism or does the child have a disorder like Lesch-Nyhan that is causing the extreme self-injury. If the kid can’t feel the pain at all, then doesn’t it put self injury into another light? What makes SIB so horrifying, I think, besides the destruction of tissue from hand biting, etc, but that it looks like the person is torturing himself, since people sort of assume that the person biting himself is feeling the same as a normal person would.

    Anyway, high pain tolerance or problems with proprioception are not exactly the same as autism… or are they? I mean our current definition doesn’t include them. None of the autism spectrum people in my extended family are self-injurers, but some of them have a high pain tolerance. I don’t, but I used to head bang, just not the kind of hard head banging that makes people want to use helmets to protect from brain damage.

    I don’t mean that people with Lesch-Nyhan or any particular disorder that includes medical problems need to be booted out of “autism” but that people need to admit that the extra stuff isn’t autism.

    The other thing I have wondered if it’s really low IQ that parents are desperate to cure. I mean among parents of autistic kids, my impression is that parents of non-autistic low IQ kids, is that they aren’t looking for a magic cure for the low IQ in their kids.

    Sure maybe some parents are freaked by having a very quirky ASD kid with a high IQ and a special interest that will make the kid likely to be employable, but usally the really sad, desperate sounding stories are from parents whose children are very vulnerable not just because of autism, but because they have a low IQ. I mean it’s easier to abuse people who don’t realize that there are agencies to protect their rights, and don’t know about such things as lawyers and can’t figure out how to pick up a phone and call one, or maybe they are easily convinced that something is true like “you can’t do this or that because I say so.” I dont’ know. How much of autism includes naivete and gullibility that is there even with high IQ? I know of a situation where a bright ASD girl got sucked into a bad crowd where she was used to carry drugs for her “boyfriend” and other unsavory things. (Again the tragedy of that situation was created by the NTs around the ASD girl).

    I’m thinking of my friend who died. He was profoundly or severely retarded (I don’t know what he was officially, but he was really impaired). Someone thought he might have been sexually molested (at like age 30), but it was just a guess going from his behavior. There wasn’t a really good way to get information like that from him…. or the people in charge of caring for him hadn’t figured it out. Hypothetically, I think I would liked to have given him more intelligence, maybe, not that that is possible. He couldn’t self toilet, apparently, if he had he could have lived here in this town. Instead he had to go to the nearby city where his mom couldn’t visit him and I couldn’t visit him often. Maybe with some magical pill to increase his intelligence he could have learned to go to the bathroom and shower himself. I don’t know. Then we are back to the issue of the Indian movie you discussed (Apna something?) do we know what would happen if we gave someone a pill to increase their IQ (hypothetically). And my big fear the “Flowers for Algernon” effect. Are we willing to possibly kill someone in an attempt to make them smarter?

    But even in the case of my friend. If we had a society that didn’t try to get off with doing the least for everyone (there’s no legitimate reason he couldn’t have lived in the same city with his mother) then would it matter if a portion of the society was profoundly or severely mentally disabled? No, it wouldn’t.

    It’s only fear of predators and harsh people that makes me fear for my ASD kid’s future. My kid isn’t sobbing and depressed for some lack of IQ points. My kid isn’t sobbing for lack of anything.

    Xe’s quite happy being who xe is.

    A way to select against genes that cause bullying and selfishness would be a significant cure for the problems of autistics, but no one wants to “go there.”

  2. Thanks Kristina. Yes, I was trying to be ironic about eliminating genes for bullying (I think the source of bullying is easier to fix than chasing a hundred genes for bullying but still very difficult). We need to have messages about valuing the disabled, in my opinion. Not that bullying could be eliminated entirely with them, but seems like it could help. I learned a lot about racism being bad from school textbooks and specific television programs aimed at promoting tolerance, etc. Those things aren’t cures for intolerance, but I think they help.

    There was a special tv program with Mickey Rooney where he played, Bill, a “retarded” man who was shown to be a very interesting and lovable man. More shows like that would help. That was made in 1980.
    http://movies.nytimes.com/movie/5538/Bill/overview

  3. I’m diagnosed Aspergers. The difficulties with social/small talk are just one small aspect of my difficulties. I find it very difficult to express my wants and needs, that means telling someone if I need something (eg drink, food, if I’m in pain or if I’m getting stressed by too much noise and too many things around me). I frequently have words in my mind but can’t get them. When I do talk nine times out of ten it’s about something events rather than people and rarely about myself. I have poor reflexes, reactions and co-ordination that mean I often don’t react to things I should react to, or I can’t let go of something I’m trying to throw. I have selfinjured (rarely do it now) and for no other reason thatn I was compelled to scratch my skin off. I’ve had toileting accidents until my mid to late teens as I’ve been unable to move or tell people I need to go. I have been told by my husband that my motto should be “I wasn’t aware” or “I didn’t think” as I often miss what appears blatantly obvious to others (I’ve missed hearing large shouting arguments a few yards away before now for instance). My personal selfhelp skills are appalling, though with my children my earlier obsession with childcare ensured I learnt so much stuff (and I still get loads of help and advice from others) that that, combined with some inbuilt instinct meant they are well looked after.
    I’m lucky enough to have help from my husband and to have skills and attributes that have benefitted me. I have a mild obsession with time and being punctual. I am a very quick reader and have a good long term memory. I keep as much as I can to familiar routines and often do things ahead of time when I remember.
    It does annoy me when people think that Aspergers is purely down to difficulties in social situations. It’s not. Personally it’s the least of my difficulties.

  4. And I have known a ton of people who’d otherwise be considered “very high functioning Asperger’s” who had major problems with toileting and/or behavior and/or self-injury. And people considered “low-functioning autistic” who had none or very few of these problems.

  5. These are my opinions about how I see different aspects of the ASD spectrum.

    I see autism as two separate issues. There is the neuroanatomy which is (mostly) determined in utero and early childhood. That is really what determines if you are autistic or not. The different neuroanatomy of mirror neurons is the aspect of ASDs that is most objectionable to “curebies”. This aspect of autism (mostly) cannot be changed once neurodevelopment has stopped.

    Then there is the acute state that one is in. This determines whether you are “high functioning” or not (at that moment). During a “melt-down”, no one is “high functioning”. A “melt-down” is an acute state, but if you are in that acute state for too long, (I think) there are compensatory mechanisms that become activated which degrades one’s ability to function all the time. I think this is the real danger of bullying, it causes actual degradation in how people can function (and that degradation is not limited to people with ASDs).

    I think that NO is what mediates both of these. Stress is a low NO state and if that low NO state is prolonged, the body activates compensatory pathways to deal with that state. I think in the case of a “melt-down”, the compensatory pathways are activated too much, sort of the way anaphylaxis occurs when the immune system is activated too much.

  6. Ms C,
    Some SIBs lead to open avenue for infection, like scratching the bumps and scabs off my skin.

    Stims or Tics, on the other hand, should probably not be squelched (IMO) as even they can release tension and or endorphins.

    So where does one draw the line? I can’t really answer, as I still have stims that are close to SIBs. And I still have some tics too, though they usually dont look like SIBs.

  7. Alot of parents ignorantly think this too. It’s like, “No I’m not trying to keep your child from being “cured”. I’m trying to keep you from forcing your child to be Neurotypical. Who says they want to be?” Especially after all the heck Neurotypicals have put us through. I think a good deal of those on the spectrum would perfer not to be them, they are so very judgemental.

  8. Sometimes I wish that instead of curing autistics, we could somehow make the world more autistic-friendly. That would then lead to a lot less of the tantrums, meltdowns and self-injurious behaviour that autistics have. If we weren’t being constantly bombarded with too much noise, too much light, too much touch, too many smells, then we wouldn’t melt down so often. If people weren’t demanding that we “fit in” with our so-called peers, demanding that we conform to social “rules” that seem quite arbitrary to us, if they weren’t demanding that we be what they consider “normal,” then maybe we wouldn’t hate ourselves and hate what we are so much.

    I often wish that there were a way to teach autistic and Aspie kids how to function in an autism-unfriendly world without trying to squelch their unique autistic characteristics or teaching them that what they are is wrong and that they must behave like neurotypicals in order to be accepted and loved, rather than being accepted and loved for who we are.

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