‘It is not a disease, it is a way of life’

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This article is in today’s Guardian. guardian-story.jpgguardian-story.jpgguardian-story.jpg

It provides a useful introduction to the positions of some of the supporters of autism acceptance, including myself and fellow bloggers Kev Leitch and Larry Arnold.

The article begins:

Today, an event run by and for autistic people kicks off in Somerset, the latest act of a burgeoning autism rights movement. Emine Saner reports on the campaign to celebrate difference, rather than cure it.

It contains some really good insights from the people she interviewed. For example, Gareth Nelson (pictured above) of Aspies for Freedom says:

I don’t think you should cure something that isn’t purely negative, It’s the same as black people, who seem to be more at risk of sickle cell disease than white people but you’re not going to attempt to cure ‘blackness’ to cure sickle cell.

The only unfortunate thing about the article is that it does play up the role of Aspies for Freedom (AFF) at the expense of other initiatives. I was surprised to read that:

Nelson, with his wife Amy, who also has AS, is leading the UK’s autism rights movement.

And I am not convinced that AFF has 20000 members when the discussion forum on their webite has less than 6000 members and many of those are from overseas. This is unfortunate as one of the strengths of the emergent movement for autism rights and acceptance for autistic people is that there are many voices and all are free to explore important differences as well as points of agreement. As an example, Larry Arnold and I work together within the structures of the NAS and are in broad agreement on many issues. But we differ sharply in our attitude to the role of scientific research in autism.

I would also have liked to read more about Autscape. This event is unique in Europe. It takes its inspiration from a similar event in America called Autreat. Like the AFF, Autscape began three years ago but it makes no leadership claims. Instead it aims to:

  • Serve as a haven created by autistic people. An autistic space.
  • Provide a venue where the majority of speakers will be autistic.
  • Create possibilities within the conference for autistic people to communicate and socialise with other autistic people on their own terms.
  • Educate and inform on issues arising from within the autistic community.
  • Advocacy and self-advocacy.
  • Promote acceptance of autistic people in their own environments.
  • Enhance the lives of autistic people through empowerment, advocacy, and a nice relaxing time.

But these minor criticisms should not detract from a very valuable article in which the author shows respect for autistic people and accurately reports their views.

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36 thoughts on “‘It is not a disease, it is a way of life’

  1. I think they exaggerated my prominence as well — it’s like they took “these people are well known in certain circles” and inflated that into “these people are the most prominent and/or the leaders”. Sloppiness basically.

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  3. I just read it, and while there are a few inaccuracies, I thought it was excellent in that it presented a diversity of views within the neurodiversity movement. I think it’s fine that they included the views from AFF. Why not? And I liked how they got Larry in there saying that the AFF kids are politically naive. They didn’t present it as if it’s a a cult-like monolithic view. Larry also got to say a thing or two about social constructionism, which was cool. And the Baron-Cohen views, while you could tell they are those of an outsider basically, were not that much in conflict with anything else. It provided the article with validation by a well-known researcher in the field.

  4. Amanda,
    after the success of your YouTube video and the subsequent high profile media attention, you are seen as an leader or at least an authoritative spokesperson by a lot of people in the mainstream. It is not sloppiness. It happens in every sphere. Articulate people in the public eye with something interesting and relevant to say are not that common. I bet it really annoys the sectarian snipers on the fringes of the autism community that your public standing is totally unaffected by their campaign of lies and innuendo.

    Joseph,
    I agree that it is good that the diversity within the movement for neurodiversity is so amply demonstrated in this article. But Aspies For Freedom did get a bit of a free ride. Maybe the journalist was a tad too respectful and did not check their claims too closely.

  5. Yeah still full of media half truth, exageration, sensationalism and bias.

    Probably does not represent AFF fairly at all, and the seperatist, we are not disabled attitude actually pays homage to the medical model, it is cognitively dissonant with the evolved social model which would explain precisely why they are disabled, because mainstream society, lables and treats them so, therefore demonstrating that they have common cause with any other group medicalised into that same lable.

    What they do is insult the disability movement by posturing as nietztian ubermensch.

    Besides the disability movement is well established and powerful, it makes sence to declare solidarity and also by having truck with other stigmatised movements including pysciatric survivors they will learn and gain greater respect in the long run, otherwise they are on a hiding to nothing.

    Larry posting from autscape

  6. Mike

    Could you explain it to me clearly – like i am a 7 year old ( to quote denzil washington in ‘Philadelphia’) – is AS the same as autism? And can these two terms be interchanged in usage. If not why the obfuscation? Are the aspies riding piggyback on the autism bandwagon? Does calling it a spectrum absolve them of the need to clearly spell the differences? Doesn’t it mock at the disabilities of the autistic people. Are they pretending to be something they are not?
    Coz my son has nothing of what you guys call as ‘autism’ . his difficulties are far far far more serious to be termed ‘autistic’ ( as per all your writings). But the doctors and special educators here say he is; i am confused. HELP!

  7. ajai:

    Most people think of it in a particularly oversimplified way that still might be useful.

    I am very nearsighted. This can be entirely corrected by glasses. Thus, in the society where I live, I am not affected at all by being nearsighted except in a few specific situations. (Somewhere where glasses don’t exist, I’d be pretty extremely limited in many ways.)

    Other people are very nearsighted too, but so nearsighted that it cannot be corrected by glasses, or cannot be fully corrected by glasses. Some such people are so nearsighted as to be considered blind. They have to use different strategies for getting around, such as possibly white canes and guide dogs and such, that are far less accepted by the society we happen to live in.

    Calling both sorts of people nearsighted does not mock or belittle anyone. It happens to be the truth.

    Autism is more complicated than that, though. The idea of a continuum running from mild to severe, the way there is for nearsightedness, is inaccurate when applied to autism.

    Autism would be better compared to something like visual disabilities as a whole.

    Because then you get people who are nearsighted and farsighted to various degrees, people who are both, people who have astigmatism, and people whose brains for whatever reason have trouble processing visual information in a whole number of ways (different kinds of visual agnosia, etc). You also get people with eye injuries of various kinds, people without eyes altogether, people whose eyes have various functional differences, people who are blind in one eye, people who can only use one eye at once, people whose eyes shake when they try to move, people whose eyelids involuntarily spasm shut, etc.

    And again there is no insult going on to say that all of these are vision-related.

    With autistic people, there is a very specific set of reasons everyone’s considered autistic.

    That is that people who look much like your son as young children can grow up to look more subtly different. But those subtle differences have very distinct qualities to them, they’re not random differences, there’s a pattern. And some people are even born with those subtle differences. (I should note they’re often only “subtle” vs. “obvious” because of what people have been trained to look for.) So people who are born with that particular set of subtle differences common to those who only eventually might grow into those subtle differences, are said to have the same thing going on.

    Just to make things more complicated, people can be subtly different at some point (whether they were more obviously different at another point or not), and then become more obviously different as time goes on. This can be for a number of reasons. One of them is increased or prolonged stress or expectations they can’t meet as they get older. Another is the gap between them and the non-autistic people of the same age, widening with age. So you can have people who were only ever subtly different as children turning into looking and functioning as very different, as older children, teens, or even well into adulthood.

    Of course, there’s more to autism than just degrees of different-looking-ness. There’s also combinations of difficulties and abilities, and those can come in many combinations.

    For instance, there are those who hold jobs and at least pass socially as either non-autistic or only subtly different, who nonetheless have extreme problems with self-care and the like. Joel Smith is one such person. (He was diagnosed with autism in early childhood, in fact.)

    My own combinations of difficulties and abilities have shifted around a good deal, such that there are things I used to be able to do and can’t now, and things I can do that I never could do before. And I look more obviously different now than I did as a child, although I’ve always been autistic (but some of that is purely because social expectations changed a good deal, and some of it is due to acquiring additional conditions unrelated to autism, but all of it combines for me to look more stereotypically autistic than I did at some other points in my life).

    And so on and so forth.

    But, basically, no. People don’t need to invent new terms for this, it’s all autism, and even the rigid barriers between kinds of people that I’m sure you imagine exist, are probably less rigid than you think.

  8. In terms of existing research, it looks like all or most Asperger autistic children are simply ‘autistic’. See this for example.

    Of course, not all autistic people are going to be the same in every way, as not all non-autistic people are going to be the same in every way. To split the spectrum there should be a good reason to do so, e.g. some therapy that really works for one group but not the rest. No such thing has ever been demonstrated.

  9. I am not sure I expressed myself most clearly last night, the beer, the lack of sleep any excuse available. But what I meant to say was that I think that AFF are alienating “us” from the solidarity that can be gained by a sort of false consciousness that is gaining some sort of self esteem at the expence of further distancing and stigmatising people who have experienced the same kinds of discrimination, who also do not conceptualise as less whole simply because of an “impairment”

    Whatever, tonight I think things are moving in th e right direction and I hope for a much more equitable autistic movement that is not afraid of alliances, which does not advocate only for the safe acceptable splinter of the autistic spectrum .

  10. Hi

    Thank you for your post.
    My example for autism and aspergers would also be something like the vision thing. Except that being blind is not even nearly the same as having to wear bifocals. The sooner we clear things up the faster we can deal with ameliorating the difficulties faced by people with autism. I rest my case.

    Ajai

  11. “Except that being blind is not even nearly the same as having to wear bifocals. ”

    Poor analogy. Blindness and short- or long-sightedness (which Mike used in his analogy) are a different matter form being blind, and I see (as an autistic person AND as a psychologist) no correlate in human behavioural terms between autism and blindness (if we’re thinking purely on the spectrum of difficulties with social functioning and sight respectively)… except maybe being dead.

  12. Answering the questions:

    > is AS the same as autism?

    In terms of dimensions along which developmental trajectories can be plotted, yes.

    >And can these two terms be interchanged in usage.

    No.

    >If not why the obfuscation?

    No obfuscation. Think set theory: AS can be seen as a set of autistic mental states existing as a proper subset of states that would fall under the label of ‘autism’.

    So, in set theoretical terms, Asperger syndrome is a proper subset on autism: that is, it is included within the spectrum of autistic states, but is by no means the whole set.

    >Are the aspies riding piggyback on the autism bandwagon?

    Hell, no!

    >Does calling it a spectrum absolve them of the need to clearly spell the differences?

    No.

    >Doesn’t it mock at the disabilities of the autistic people.

    No. I have seen someone with a diagnosis of Kanner syndrome who has fewer difficulties than a mutual friend who has Asperger syndrome.

    >Are they pretending to be something they are not?

    No.

  13. I’ve read about the ‘blindness’ vs. ‘blindness spectrum’ argument before. I believe it’s originally by Thomas Sowell (an African American conservative economist who thinks some non-verbal autistic children are not actually autistic, and who apparently has an autistic adult son).

    The argument says that it doesn’t make sense to state that children with myopia are on the ‘blindness spectrum’ because blindness is a serious disability and it would only serve to scare parents of children with myopia. It sounds to me like an argument about semantics and social constructionism, though.

    Either way, it’s not clear that this argument applies to autism. If by ‘blindness’ he means not being able to see at all, what is the equivalent of that in the autism spectrum? Not having any functioning at all? Unless an autistic person is in a comma (truly a different condition) I don’t think you can say an autistic person has no functioning at all. All autistic people have some level of functioning, and if you look at Michelle Dawson’s recently published paper, some autistic people who are considered to have a near-zero IQ actually turn out to be very capable cognitively.

  14. Actually, the reason that I used the example of blindness is that being sufficiently near-sighted to the point where it can’t be corrected past a certain point even with glasses is considered a form of blindness. And that form of blindness is a form of near-sightedness, just as there are forms of near-sightedness that can be fully corrected. And neither one of them is “not really real near-sightedness” just because the adaptations the people use, and the amount that it affects their lives, vary so greatly.

  15. Being criticised from more than one side, being called two mutually insupportable things by two sides of an extreme, guess that is progress, guess that means I am worrying people.

    Anyway the blindness argument, not put well here.

    Is David Blunkett (never mind his morals or his politics) blind enough? he has been a cabinet minister.

    Evelyn Glennie, is she deaf enough to pass, is her musicianship an insult to people no less deaf than her?

    to whom is my autism an insult, to AFF I suppose, who are probably a damn sight more assimilated than me in there everyday lives.

    From my position I argue for total inclusion, there ain’t nobody that is not capable of making a choice. To treat what the world calls “low funtioning” autistics as too impaired and intellectually unable to make a contribution to deciding anything about there own lives is the biggest insult of all and that is where some of the more prominent vocalisers of AFF and the curebies are actually standing on the same ground. They hate each other because they are so alike, only they cannot see that, it’s easier to construct pantomime arguments on the web “oh yes it is, oh no it isn’t” than actually engage in anything constructive or instructive

    Kev ought to hate me too, because my appearance in the article gives the lie to his accusations that I never got in touch with “his” journalist.

    I’ll tell you all, “you ain’t seen nothing yet”, so far as what a pan autistic movement is and can be!

  16. Hi Larry
    I hope you enjoyed Autscape. I agree that we need total inclusion. The ‘good’ aspie versus the ‘bad’ autie has already been aired in the USA with GRASP’s understanding with Autism Speaks. Basically they are saying leave us high functioning aspies alone and concentrate on curing the low functioning ones.

  17. Indeed it is, don’t you know it is,
    To me right falloori laddie, well indeed it is.

    As I say a pan disablement movement is powerful and solidarity will carry the day.

    As I said at autscape whilst defending that viewpoint

    “Do you bloody well think autistics are the only non verbal people?”

    By engaging other movements we are not only gaining strenght but we are teaching them about autism and neurodiversity just as the pan disabled movement had to adapt to all manner of different and conflicting access needs not to mention cognitive styles.

    Am I less of a person because I have physical “impairments” ?

    We all come from the same well spring of empowerment vs oppression.

  18. “Joseph // Aug 9th 2007 at 12:30 am

    Here’s the corresponding thread at AFF:

    http://www.aspiesforfreedom.com/showthread.php?tid=10055

    They are very happy about it. Why wouldn’t they be when they are the leaders of neurodiversity in the UK :)

    I was surpised to read what Timelord says in this thread compared to what he allegedly said over at Kev’s blog.”

    Don’t be. It is not alleged either. This is a direct link to where he made the allegation
    https://www.blogger.com/comment.g?blogID=4258607848100409149&postID=694347201638418806
    July 15, 2007 3:45 PM

    He just ratifies and confirms his biase over the next few pages of this thread starting from #171

    Of course he will suck up to anyone with importance in the Autism Hub he wants credibility. I think though you guys are all clever enough to see through this and him though?

  19. This whole LFA/HFA division is meaningless. What are the criteria? IQ? Independent living skills? Language?

    Identifying needs in order to meet them is one thing But it is invidious to suggest that people have to meet certain criteria in order to be eligible for full human rights.

  20. Yes Mike this is certainly true.
    Distinction of that division is certainly fraught with difficulties: Elitism within Aspie/HFA ranks is an example of such.
    However not having a division also brings up problems. Funding and allowances for therapy are examples. Also public awareness is an issue. If in talking about my boy or myself as HFA means I have to hear another person say “Yeah so he/you have a talent that other people can’t do…savant?” – or similar remark (Yes their sole exposure to autism is the “Rainman movie) I will strangle them! No I am not serious but the issue of public awareness of autism and all it’s forms and traits is something that needs that distinction.
    What I will not argue is that Needs-based therapy is an absolute must. Education of the condition, unified approach to treatment and a heavy hand against media misinformation is also paramount in importance.
    Human Rights for autistics is essential.
    I do look hopefully to fellow autistics and informed advocates and educators for that universal support and drive. I am more than a little disappointed when I see even amoungst these “Autism-friendly” affiliates the occasional bias, bigotry or striking out against the community they belong to (hence my previous posts here).
    I does encourage me though to see that you and most others in this community seem to have a reasonable, rational and respectful attitude and this is only to the benefit of the autistic community as a whole

  21. Mike

    I beg to disagree with your statement that the LFA/HFA debate is irrelevent. It is irrelevent only to the HFA people. But to LFA’s who cannot communicate their needs and have acute sensory issues etc, it is important that we acknowledge that it is a different kettle of fish, and take into consideration what their caregivers ( or other autistics who can communicate to them – i read in one blog that autistics can communicate to autistics !) have to say. I also would like to mention that nobody talks about mental retardation in these blogs, as if it is not associated with autism, and that it is only due to a skewed NT inspired IQ test regime that they are termed mentally retarded. But MRI and other scans have shown differences in brain structure in specific areas that coincide with the behaviour shown. For example my son has delayed mylenation in some parts of his brain. The symptoms shown covers all the 16 odd ( no pun) parameters that define autism. I have never done an IQ test for him with the intent of finding out how intelligent he is coz i know it is NT designed, and that it does not define who he is. But i also refuse ( no i am not in denial -phuleese read the whole sentence) to define him as autistic just because he shows the symptoms. He is so much more than the sum of his symptoms.

    ajai

  22. This is odd: “I have never done an IQ test for him with the intent of finding out how intelligent he is coz i know it is NT designed…”

    Firstly, unless you are a psychologist, you cannot do an IQ test that has any serious meaningful result. Test users need training in how to understand the results of tests as well as how to administer them.

    Secondly, to my knowledge, all IQ tests may have been designed by so-called NTs… I so not know, and I do not care. The tests are designed to tap into spaceific aspects of intellectual functioning, and there are some aspects that a Wechsler test will not touch that the Kaufman tests will, and vice versa. Tests are chosen on the basis of what aspects of intellectual ability a psychologist is attempting to assess, and often – with regard to the Wechsler (for example) – it isn’t even the FSIQ score that is being examined… it may wall be (and usually is, in my experience) the patterns of performance in the subtest profile that give the best idea of how someone is functioning intellectually. IQ – for the general population – will reasonable reliably predict success in academics; but the tests have limited ranges of convenience, just like the contructs they assess. And this has to be borne in mind when talking about tests of intellectual ability.

    Just my two-penn’erth as an autistic psychologist.

  23. David

    1. There is such a thing as stimulus overselectivity; you need to get a hold of yourself ( or go to bed) :-) .

    2. read my post – the question is not about my qualifications ( i am, by association of profession, a rocket scientist – and i read ecelectically, from the Albert’s “Myth of Sisyphus” to Woody’s “side effects” ( which, one could argue, is one and the same :-) )

    3. I was talking about inflicting my child with an IQ test designed by NTs for the NT spectrum ( not doing one on him myself – though i believe it is not rocket science)

    4. It is always a pity ( and a bit tedious) when one has to constantly dot the i’s and cross the t’s, but i shall bear that in mind in my posts to the forum in the future.

    I remain
    sincerely yours
    Ajai

  24. “I was talking about inflicting my child with an IQ test designed by NTs for the NT spectrum (not doing one on him myself – though i believe it is not rocket science)”

    You missed my point entirely.

    The tests are not designed for any NT-spectrum, although it may seem so. They are designed according to what the current thinking in cognitive psychology suggests are essential skills for academic progress, and they are developed as a means to assess individual aspects of ability as they related to educational success. Since rocket science is mostly Newtonian mechanics, you are right to think that test development is not rocket science: it is somewhat more complicated than Newtonian physics (diss my science, I’ll diss yours, okay?). My point is that tests aren’t designed for any particular set of people, but that the Wechsler will pick up more sensitively than the Raven (as will most multidimensional tests, when compared to those with one dimension of measurement that is highly ‘g’-saturated).

  25. A Word From Our Sponsors

    I have just deleted a couple of comments because I thought the discussion was in danger of degenerating into personal insults.

    Please remember that autistic people writing here are sometimes going to appear pedantic, “crossing the i’s and dotting the t’s“.

    By the same token, those of us who are familiar with the idioms of UK or US English ought to remember that, for some contributors, English may not be their first language. In such cicumstances, “crossing the i’s and dotting the t’s” of their contributions may not be the right way to take the debate forward.

    Carry on.

  26. Sorry Mike… he got my goat. I’m trying my best to exlain the stuff about tests, and how it’s likely to be an artefact of the test that the discrepancy in IQ scores come about, and I get treated to that stuff.

    I live in a country where people’s first language is not English, and I know when insults are being slung by non-native speakers.

  27. Mike

    Thanks for being so understanding and controlling the debate. I would like it to be always about the child/adult and autism.

    You are right, i live in India, where English is my third langauge ( after my native tongue, and C++ ( hey, its India you know! :-) ))

    Regards

    Ajai

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