Whose Planet Is It Anyway?

Sunday, January 03, 2010

Autism Speaks Loses UK Affiliate

Hat tip to Socrates at The New Republic.

This latest misadventure of Autism Speaks has demonstrated, yet again, arrogance and ineptitude on a truly epic scale. When Autism Speaks finally ends up in the history books (where, less than four years ago, it declared its intent to put the world's entire autistic population), the tale of its demise will be one of hubris befitting a classical Greek tragedy.

To briefly sum up the debacle, before releasing the I Am Autism video in September to widespread condemnation from disability rights groups, Autism Speaks had presented its text as a "poem" at a May meeting with British supporters in London, where it was received with about as much enthusiasm as a heap of decomposing Thames flotsam. After that, having apparently concluded that it didn't matter what the Brits thought and that no propaganda was too extreme for the United States, Autism Speaks went ahead and created the video anyway. Not only did it suffer a major media embarrassment as a result, it also lost an international affiliate, as the UK nonprofit group that had been a branch of Autism Speaks has now formally cut its ties with its former parent organization and has renamed itself Autistica.

Although the newly renamed group seems to be just as interested in genetic research as the old one, it seems to have at least enough sense not to openly advocate eugenics. Its mission statement describes its purpose as follows:


Autistica seeks to use biomedical research to bring benefits to individuals and families affected by autism spectrum disorders.

Autistica is dedicated to raising and investing funds to support high-quality peer reviewed research which focuses on determining the causes and biological basis of autism spectrum disorders; improving diagnosis; and advancing and evaluating new treatments and interventions. We are committed to ensuring that increased understanding and new scientific knowledge will improve the quality of life for all those affected.

Autism is one of the most significant but least researched developmental disorders and Autistica has set itself the task of achieving major breakthroughs within ten years.


Nothing in there about prevention, eradication, prenatal screening, or putting autistic people in the history books. Fancy that.

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24 Comments:

  • Quote attributed to Autistica:

    "Autism is one of the most significant but least researched developmental disorders and Autistica has set itself the task of achieving major breakthroughs within ten years."

    What absolute rot this statement is! Autism isn't the most significant developmental disorder by any stretch of the imagination, at least not in a negative way. There are scores of genetic and congenital syndromes out there in the human population that limit the development of the intellect in countless different ways, resulting in people who can't keep a job, people who can't really live independently, can't really make wise decisions about how to lead their lives (but have kids anyway), and who can't stay on the right side of the law, but who often don't qualify for any disability pension because their IQ is above some arbitrary cut-off point. And the vast majority of these troublesome and unfortunate people are NOT AUTISTIC!

    Could we PLEASE start this year by facing up to the fact that autism as a disability is not anything like as important to society as the experts and lobby groups have been claiming all of these years, and there are many other important developmental disabilities that NEED to be researched and supported.

    And what about this nonsense that autism is under-researched? Try doing a PubMed search on the word "autism". I retrieved around 15 thousand papers. A search on the term "Asperger" brought up around 1 and a half thousand papers.

    By Blogger Lili Marlene, at 12:35 AM  

  • "There are scores of genetic and congenital syndromes out there in the human population that limit the development of the intellect in countless different ways, resulting in people who can't keep a job, people who can't really live independently, can't really make wise decisions about how to lead their lives (but have kids anyway), and who can't stay on the right side of the law, but who often don't qualify for any disability pension because their IQ is above some arbitrary cut-off point. And the vast majority of these troublesome and unfortunate people are NOT AUTISTIC!"

    Have to say... I agree. There are syndromes that don't even have a name yet that need researching. This is not to say that the autism spectrum isn't in need of research budgets (it certainly is); but, in relation to the statement that LM is referring to, I an seriously in agreement with LM on this.

    By Blogger David N. Andrews M. Ed., C. P. S. E., at 12:56 AM  

  • Well what is being under researched in Autism is effective education.

    This is not rocket science, but it does not attract the funding, and University departments like my own are under pressure during the recession with a freeze on new posts.

    By Blogger The author, at 4:19 AM  

  • I think we need to differentiate between thorough research, and "backyard" research. To be honest - a lot of the research into Autism (particularly in more recent times) has been of the backyard variety. Now that gives the appearance that the condition is not being researched effectively. So I wouldn't call Autistica's commentary wrong - but rather poorly worded.

    I mean heck - with the garbage that had been put out by Messrs Geier, Geier, Wakefield, Haley and Deth (amongst others), can we really call that research?

    As for it being significant - you bet it is! As long as you include the entire Spectrum, and don't forget that most recent CDC figure. How many non Spectrum conditions that also qualify as developmental disorders have such a prevalence, Lili? I'm not trying to put down those other conditions - but it looks to me like you're putting down Autism as a serious issue to address.

    BTW - I get the DSP, and my IQ is fine. I'm an Aspie.

    By Blogger Timelord, at 7:04 AM  

  • "Autistica exists because it believes that autism is the most serious challenge facing medical science today."

    Another statement of absolute rot from Autistica. Talk about a warped perspective...

    By Blogger jypsy, at 11:28 AM  

  • Autism IS a serious challenge, in SOME forms.

    But, is it really a more serious challenge than cancer? Ebola? Diseases that kill?

    By Anonymous Adrianna, at 12:19 PM  

  • "Autism IS a serious challenge, in
    SOME forms."

    Indeed. And this need not mean that being Asperger-autistic is any easier than being Kanner-autistic (as I have been appraised of in a report recently for a vocational rehabilitation evaluation report).

    "But, is it really a more serious challenge than cancer? Ebola? Diseases that kill?"

    What kills in autism is the depression of being placed at the outside of society. As I am being made very deeply aware of late.

    By Blogger David N. Andrews M. Ed., C. P. S. E., at 12:54 PM  

  • At the moment the biggest challenge to me is staying warm.

    Which is as much to say as whatever is the biggest challenge at any time is dependent on the person and the perspective,it's really not an answerable question and certainly not anything to be taken literally.

    It is quite obvious that for an autism charity the biggest challenge has to be by definition autism as that is what gives them the justification for there existance.

    On the other hand for anyone else it is whatever they are facing at the time. For example for me recently the biggest challenge was getting into hospital and getting hooked up to a heart monitor to see if I was about to croak or not, after that, the biggest challenge was being an autistic in an autistic unfriendly environment unexpectedly.

    Neither of those were the biggest challenges to the guy in the next bed, which was breathing. Unfortunately as I have seen in the paper he did not make it, he died on the 27th :(

    His oxygen mask kept me awake all night, but I don't grudge him a single gasp of it.

    By Blogger The author, at 1:27 PM  

  • David, we do have to remember that Autism isn't a disease. It's all about getting the balance right - and I think all of us who are commenting would agree. Balance in research, understanding etc etc.

    By Blogger Timelord, at 5:28 PM  

  • Timelord wrote:

    "As for it being significant - you bet it is! As long as you include the entire Spectrum, and don't forget that most recent CDC figure. How many non Spectrum conditions that also qualify as developmental disorders have such a prevalence, Lili? I'm not trying to put down those other conditions - but it looks to me like you're putting down Autism as a serious issue to address."

    Individually, rare but nasty diseases or developmental disorders are insignificant to society as a whole, but as a group, I am guessing this group would be significant. Also, I'm sure that there are many people who are affected by developmental disorders who aren't diagnosed or labelled officially as such.

    Personally I feel more loyalty to the idea of neurodiversity than to the idea of "autism awareness". I believe we do need to challenge the idea that people are all bascially the same with the same needs, thoughts and motivations. At the same time I'm wary of the hype that overstates the importance of the autistic spectrum as a social problem. I'm wary because I fear this hype leads to people over-including negative things into the category of autism that aren't autism, and I also fear that this may lead some people to believe that in "curing" or preventing autism, they will solve many of the problems of society. I'd rather be overlooked than be seen as an example of a major social problem.

    David agreed with me on a point. I am in shock.

    By Blogger Lili Marlene, at 8:24 AM  

  • Chronic, lung and heart disease is very far from insignificant either.

    Major killers in my family, both of them excacerbated by those major vices in society, smoking and drinking, I am not ill disposed to large amounts of money being spent educating the public about them either.

    Thing is it is going to hit us all in some form eventually as we get older, we get more vulnerable, this winter will be claiming many more victims before it is over.

    By Blogger The author, at 12:07 PM  

  • "I believe we do need to challenge the idea that people are all bascially the same with the same needs, thoughts and motivations. At the same time I'm wary of the hype that overstates the importance of the autistic spectrum as a social problem. I'm wary because I fear this hype leads to people over-including negative things into the category of autism that aren't autism, and I also fear that this may lead some people to believe that in "curing" or preventing autism, they will solve many of the problems of society. I'd rather be overlooked than be seen as an example of a major social problem."

    Lili, as long as we don't lose sight of the fact that Autism is as genetic as skin colour, gender and so on - the issue you talk about won't arise. Or if it does it's blatant cultural bigotry. All that's needed is proper DXing and proper education. Until that's done then we DO have a major social problem. We have one now, and the curebies are at the core of it - along with the idiots like those over on Encyclopedia Dramatica who mock the condition.

    By Blogger Timelord, at 5:59 PM  

  • @ Phil:

    "David, we do have to remember that Autism isn't a disease. It's all about getting the balance right - and I think all of us who are commenting would agree. Balance in research, understanding etc etc."

    Absolutely. Autism is not a disease and never has been, which is what pisses me off about so much of the 'medicalised' research into it, as if it's a disease that needs a cure. In essence, I think that this medicalisation of autism is one of the major factors in why things have not moved on as far as they could have (w. r. t., for example, the development of appropriate social policies that would guarantee appropriate developmental support for autistic people across the whole lifespan). The whole thing about balance in research, particularly, I agree with... and the research has definitely been out of balance for many decades now.

    @ LM:

    "David agreed with me on a point. I am in shock."

    Don't be.

    When you're not pursuing your hate campaign against Tony Attwood, you actually make some bloody good points. For example:

    "I believe we do need to challenge the idea that people are all basically the same with the same needs, thoughts and motivations."

    That statement is absolutely accurate! That idea of uniformity is such a pervasive one in society that it actually damages people at all levels, and it is really nothing more than a very fucked up attributional style that argues by analogy but in too abstract a way. Its conclusions are not tenable because the abstraction has gone too far. Even in the psychology of individual differences, the tendency has always been to find out the things that make us similar, without attending to those aspects of being human that actually give us our individual differences.

    "At the same time I'm wary of the hype that overstates the importance of the autistic spectrum as a social problem. I'm wary because I fear this hype leads to people over-including negative things into the category of autism that aren't autism, and I also fear that this may lead some people to believe that in 'curing' or preventing autism, they will solve many of the problems of society."

    My italics; and that italicised part is the big thing in that quote, for me at least.... that has been very much the trend, and the hype is responsible for that. Social amplification of risk happens because people prefer the sound-bite approach when they make decisions: emotions are allowed to guide decision-making when it should be a matter of cognitive functions - like the use of logical thinking - that influences decision-making. This emotionalised response thing is - in fact - maladaptive, and yet it is the way that most people make their decisions.

    What's wrong with agreeing with you? Like I say, you make some bloody excellent points. And existing theory actually supports the points you make. Why sacrifice your credibility on those points by attacking Attwood? All it does is make you look like JBJr, and the fact that he exists means there's already at least one too many like him in the world... we certainly don't need another one.

    "I'd rather be overlooked than be seen as an example of a major social problem."

    I'd rather that it wasn't such a dichotomous issue, but this is what society seems to put in from of us.

    "Also, I'm sure that there are many people who are affected by developmental disorders who aren't diagnosed or labelled officially as such."

    Some recent research has kinda supported that notion too.

    By Blogger David N. Andrews M. Ed., C. P. S. E., at 3:19 AM  

  • "All it does is make you look like JBJr, and the fact that he exists means there's already at least one too many like him in the world... we certainly don't need another one."

    David, This is why I had to shut my blog down. I let my passionate intensity overtake me. In my hatred for JBJr I almost became like him. Strange is it not?

    By Blogger Cube Demon, at 12:16 PM  

  • David, ABFH, Timelord and others you all have more experience than me in reigning in your passionate anger and controling it. I apparently do not.

    Timelord has helped me alot with alot of my problems and I appreciate that. I wish I had someone like Timelord or any one of you here to help guide me through things.

    By Blogger Cube Demon, at 12:20 PM  

  • I'll tell you what - anyone here (David and ABFH in particular) can help Cube Demon a lot by joining my forum (where most of the help has been given).

    http://tlpg.proboards.com

    The more the merrier.

    By Blogger Timelord, at 4:58 PM  

  • This comment has been removed by the author.

    By Blogger Cube Demon, at 7:15 PM  

  • Yes, please join. If there is anyway I can help you all out in the future when I can I will if you all help me out.

    By Blogger Cube Demon, at 7:16 PM  

  • Timelord, I don't do much with forums these days because I've gotten busy, and sometimes it's hard just keeping up with the blogs I read. But thanks for the invitation anyway.

    By Blogger abfh, at 7:38 PM  

  • What we need is non-biased and practical education that is neither pro-or-anti cure. We need parents make decisions for their children without being pressured by outsiders (anti-vax nuts) or feel threaten by ND supporters.

    So much information on Autism is so unbalanced and incorrect.

    By Blogger Nightstorm, at 12:55 AM  

  • Nightstorm, you have to understand that there are parents out there who won't stand for anything less than a cure. As long as we have that you'll never get balance. The education required goes far deeper than just providing information about Autism.

    We have to deprogram society about the idea of "normal" and more importantly stopping the idea of penalties for those who go against that societal mould.

    Understood, ABFH - it was a general invite to participants who would like to help Cube Demon.

    By Blogger Timelord, at 6:35 AM  

  • No one has any hope of providing sound information about "autism" while the term "autism" is applied to such an absurdly heterogenous range of different conditions, many of which are poorly understood by science. It's this idiotic and negligent lumping together that is holding back research, so the whole situation is a vicious cycle. I've made this point many times before and I'll keep on making it.

    I would never object to a cure for Hannah Poling (unlikely as it may be), but she has been identified as autistic by many people (who have obvious agendas). Dr Paul Offit has written a good and readable rebuttal to the idea that her case represents something relevant to autism. Have any of you lot done the same?

    I try to avoid spending too much time on the anti-vaccine controversies, as I see it as a depressing waste of time, but I do realise that such nutty ideas are widely influential and need to be opposed. I don't read a lot of the neurodiversity movement's responses to this stuff, but what I do read seems to me to be concerned with political, legal and scientific correctness at the classy end, and childish belligerence at the low end. It seems to miss the guts of the problem. When was the last that you told a parent of a supposedly autistic child who claims their kid was brain damaged by vaccines to f@#$ off and go get their child a proper medical diagnosis if they truly believe their kid has sustained brain damage? When was the last time that you told a parent that they may be wrong to accept autism as the label for their child, and that they should be concerned that they might be failing as their child's advocate within the medical system? When was the last time that you advised such parents to go start or join a support group for parents of children who have brain damage or rare genetic syndromes, and stop interfering with institutions that are set up for autism and autistic people? When was the last time that you contacted an autism researcher or autism expert and demanded more research into biological, genetic, anatomical or medicial-based diagnosis of autistic conditions, rather than this absurd diagnostic mess that we currently have which is based on ridiculously vague categories, which requires no investigation into the real world of the subjective experience of the patient, but which does accept as evidence the subjective interpretations of observations of behaviour? Have you expressed your disgust at the proposal that the DSM change its categorization of the autistic spectrum to be even more vague rather than more specific? Have you spoken out about factilitated communication or warned others about it? Have you thought about the possible negative influence of this fraudulent nonsense on the politics of autism?

    I think I'm done now.

    By Blogger Lili Marlene, at 4:57 AM  

  • No one has any hope of providing sound information about "autism" while the term "autism" is applied to such an absurdly heterogenous range of different conditions, many of which are poorly understood by science. It's this idiotic and negligent lumping together that is holding back research, so the whole situation is a vicious cycle. I've made this point many times before and I'll keep on making it.

    And I for one will keep arguing with you, because the whole Spectrum is the same thing at the root. That has to be recognised first, otherwise research will just come off in bits and pieces - and that will never help anyone, especilly in the current climate.

    I take it you are not happy with the rumoured change in the DSM-V?

    By Blogger Timelord, at 6:13 AM  

  • When choosing the name "Autistica" I bet they forgot about the Ian Dury and the Blockheads song "Spasticus Autisticus"...

    By Anonymous bargedweller, at 5:41 PM  

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