IACC Strategic Plan: Good for us?

6 Mar

By ‘us’ I mean my idea of what the neurodiversity community is.

The IACC released their strategic plan for the future direction of autism research yesterday. This is the basic plan that will form the basis of US (and probably world) autism research for the next 10-20 years. It sets out what it thinks the problems are, what should happen to address those problems and what specific research targets should be set to help address those problems.

So, is it good for us?

On one hand it is. In some places the document makes a clear distinction between the need to address the disabling issues that autism can bring and leaves aside cure language:

It is critical for research to identify the methods and approaches that can be used to prevent the challenges and disabilities of ASD.

Cool. Fine by me. And yet later on in that same paragraph:

Having sound research on the risk factors and the environmental triggers for ASD ultimately may allow us to achieve the goal of prevention: preventing the development of the disorder in some people at risk or reducing the degree of severity in those affected.

Hmmm. Possibly less good. I don’t even really quibble at the ‘reducing the degree of severity’ phrase but prevention? Even researchers as established and august as Simon Baron-Cohen and Tony Attwood have suggested this is not such a great idea. I also don’t believe its a great (or necessary) idea.

There’s lots of good talk about support and education for adults and the need to recognise that autism is not a childhood condition. Amazing that such talk is needed when adults clearly make up the larger percentage of the autism population.

I’m not sure this is a cure-based document. I do think its a define-autism-as-a-medical-condition document which is again not such an accurate idea.

And so we turn to the ‘v’ word. Vaccines are given fairly short shrift in the plan. I didn’t think so at first. When I read this paragraph I was dismayed:

To address public concerns regarding a possible vaccine/ASD link, it
will be important over the next year for the IACC to engage the
National Vaccine Advisory Committee (NVAC) in mutually informative
dialogues. The NVAC is a Federal advisory committee chartered to
advise and make recommendations regarding the National Vaccine
Program. Communication between the IACC and NVAC will permit each
group to be informed by the expertise of the other, enhance
coordination and foster more effective use of research resources on
topics of mutual interest. Examples of such topics include: studies of
the possible role of vaccines, vaccine components, and multiple
vaccine administration in ASD causation and severity through a variety
of approaches; and assessing the feasibility and design of an
epidemiological study to determine whether health outcomes, including
ASD, differ among populations with vaccinated, unvaccinated, and
alternatively vaccinated groups.

This is in section III under the heading ‘what needs to happen’. As I say at first I thought this was terrible. But then I read it again and noticed that what the plan is actually saying is that the IACC and NVAC should talk about these things. They’re not committing money to them.

Vaccines in fact feature nowhere as a short or long term objective in the whole plan and are mentioned again once as a possible research opportunity for people to keep an eye on any developing science.

Overall its a mixed bag. Good on vaccine stuff, good on recognition of need for services, good for recognition of adults but ambiguous at best on its intent for the idea of curing autism.

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13 Responses to “IACC Strategic Plan: Good for us?”

  1. RAJ March 6, 2009 at 14:08 #

    The development of an effective rubella vaccine has resulted in prevention of autism. So has withdrawal of Thalidomide for use in treating morning sickness in pregnant women.

    If prevention is ‘not so good’ why then is the ND crowd so preoccupied with a pro vaccine agenda. The virtual elimination of congenital rubella as a cause of autism has lost thousands of people who otherwise would
    have had a lifetime living the wonderful life of autism and relegated them to the misery of normal lives.

    http://www.springerlink.com/content/j25pqu8546115m47/

  2. passionlessDrone March 6, 2009 at 15:13 #

    Hi Sullivan –

    I do think its a define-autism-as-a-medical-condition document which is again not such an accurate idea.

    I feel completely the opposite, but I am interested in getting a clearer understanding of what drives our difference of opinion on this.

    Would you be willing to define a ‘medical condition’ in your context, and give some indication why you don’t think autism fits within that definition?

    – pD

  3. Jeannie March 6, 2009 at 15:26 #

    So I just have to say, I don’t think my son (6 year old with autism) needs to be “cured” of anything.

    Do I welcome research? Absolutely. But why prevention? My son is who he is and thinks how he thinks; its what makes him unique.

    Think of all the wonderful things the world would miss out on if autism were prevented. Isn’t it suspected that many of the worlds greatest thinkers, creaters, scientists, researchers, and discoverers were on the spectrum?

  4. Ivar TJ March 6, 2009 at 16:18 #

    I really don’t see how preventing autism can be in the interests of those who are living with autism.

  5. Joseph March 6, 2009 at 16:34 #

    Preventing autism is something that people outside of the autism communities see as a positive. It does nothing for those of us in the autism communities. I’m sure even the anti-vaxers don’t care a whole lot about prevention. For those of us in the autistic community it’s even somewhat offensive.

    Of course no one would oppose prevention of viral-cased or chemically-caused brain damage with a phenotype that presents as autism, as RAJ’s strawman attempts to suggest. I am, however, completely opposed to any type of “prevention” that involves genetic screening and abortion.

  6. HCN March 6, 2009 at 16:49 #

    RAJ said “So has withdrawal of Thalidomide for use in treating morning sickness in pregnant women.”

    Since the IACC is American, can you tell me exactly how many American women took Thalidomide and why?

    (hint: the reason was born in Canada)

  7. Joseph March 6, 2009 at 16:58 #

    Would you be willing to define a ‘medical condition’ in your context, and give some indication why you don’t think autism fits within that definition?

    I can try to answer that. I would define a medical condition as something that needs to be addressed using a medical model because doing otherwise means the patient has a likelihood of dying or suffering, independently of any social conditions.

    Cancer – clearly a medical condition.

    It gets tricky, though. For example, an autistic person might have epilepsy. Epilepsy is a medical condition. It’s treatable medically, and it can kill you.

    A condition that is not medical might have “comorbidities” that are medical. Left-handedness is a good example. But even homosexuality, being black, Jewish, male and so forth fall in that category.

    Down Syndrome is a genetic mutation. I don’t think it’s a medical condition, and most DS associations agree on this point. Yet, it’s associated with several medical conditions that need to be treated medically.

  8. alyric March 6, 2009 at 19:08 #

    What a monumental piece of stupidity this is

    “If prevention is ‘not so good’ why then is the ND crowd so preoccupied with a pro vaccine agenda. The virtual elimination of congenital rubella as a cause of autism has lost thousands of people who otherwise would
    have had a lifetime living the wonderful life of autism and relegated them to the misery of normal lives.”

    RAJ you’ve been commenting on this blog long enough to know that no one around here believes in the junk you’re writing here. So why the nasty spite? You should maybe go somewhere else where your problems might be seen as a low form of wit.

  9. Kev March 6, 2009 at 20:07 #

    Wow RAJ, confused much?

    Who said a non-autistic life was a misery? In fact who said that autism automatically and only confers a wonderful life?

    Lastly, are you really seriously suggesting not tackling something that can cause people to miscarry?

    Look beyond your infantile pre-conceptions RAJ.

  10. Kev March 6, 2009 at 20:09 #

    pD – that was me 😉

    I said it as it reads very much like a medical text to me. I’m not suggesting that this is anything more substantial than my opinion.

  11. Sullivan March 7, 2009 at 00:28 #

    The virtual elimination of congenital rubella as a cause of autism has lost thousands of people who otherwise would have had a lifetime living the wonderful life of autism and relegated them to the misery of normal lives.

    How crass. If you wish to play the disingenuous “Neurodiverse believe that autism has no challenges” game, please don’t be so rude about it.

    Congenital Rubella Syndrome, as you very well know, often causes profound intellectual disability. Those are, as Kev alludes to, the ones who actually survive. It isn’t something to joke about.

    You are trolling. Very badly, very obviously.

  12. dr treg March 7, 2009 at 01:03 #

    Unfortunately like it or not autism could be found to be another inflammatory brain disease secondary to immunogen exposure in predisposed individuals and as with the recent discovery of juvenile diabetes mellitus being related to enterococcus infection, autism ironically may be preventable by vaccination in the future.

  13. passionlessDrone March 7, 2009 at 19:11 #

    Hi Joseph –

    I appreciate the definition you provided. I’m not sure I agree with it one hundred percent, but it is well crafted for your position. I suppose the problems I see are our ability to decouple comorbid conditions from autism proper and the fact that we seem to goto doctors to get medicines, or other treatments, for things that wouldn’t necessarily fit into your model.

    Either ways, I’m not here to start an argument for once. Thank you.

    – pD

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