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.