Thursday, April 12, 2012
Autistic in the UK
Before I forget how to blog again, some excerpts from a live Q & A I did in the UK recently, while at the Centre for Research in Autism and Education in London. I've corrected one typo. It was very hard to do but the questions were excellent.
Was research something you always felt you had been quite good at, statistics, numbers etc? And what support network did you have to start this job?
No, I ran into research by accident--as I was trying to sort out legal issues. Then suddenly I had information I could really work with. Before that I had been totally discouraged from even looking at research--I was told that autistics could not understand research.
I haven't really had support, I just leveled a lot of criticism at a research group I took seriously and they offered me an affiliation.
Hi Michelle, really interesting to hear your answers to the last questions. What sort of advice would you give to autistic people here in the UK who would like to get into research?
My main advice is--read a lot of papers! Find out what you're interested in and what you can do well. You need a lot of critical thinking and it helps to not decide ahead of time what you should find.
I also suggest reading the scientific literature involving the typical population to get an idea of the often higher standards there--and then use these higher standards to interpret the autism literature.
It is hard for me to give advice at the usual levels because I haven't ever been to university as a student. Still I hope I've shown that even an uneducated autistic can be useful in research, given the opportunity.
What do you think about the links between research and government policy? I think we struggle to get government to fund support and interventions for children partly because they're not convinced of the benefits. What should we do about that?
The problem has been the poor quality of autism intervention research, resulting in arguments based on a few studies of questionable quality. In my view, the solution is to ensure that only good quality--as this is defined for the typical population--intervention research is funded.
We should at this point know much more than we do, about how to help and how not to harm autistics. We should have 10 or more large, well-designed, multi-site RCTs like the one Jonathan Green has conducted in the UK. But we don't. So policy and so on is determined according to who is loudest and so on, rather than according to what might help autistics.
If you had the power to fund one new area of research what would it be and why?
I've been asked that question many times in the UK and my answer is always that I would throw funding into Jonathan Green's work, simply because he is applying much higher standards to autistics in autism intervention research than has previously been the case.
This may seem like an odd choice, but the poor quality of the autism intervention literature is in my view a major problem that doesn't stay confined to how decisions are made about interventions, which is important enough in itself.
We don't know yet how far better quality research will go in making things better for autistics, and to what degree it will solve the problems so to speak, but it is something we must try. The effort to lower standards for autistics has been dominant and it is hard to imagine a better way to signal that autistics are worth less than nonautistics.
It is very fortunate that Jonathan Green and others, like Catherine Aldred, have not gone along with this trend, and instead are viewing autistics as deserving of the same standards as everyone else. And we know that these standards work for autistics. So this is why I would send them more funding if I could.
How do we support more autistics to become leading academics / scientists rather than purely the subject of research? What needs to change and are there any examples of where you think this is working well?
First I think we have to stop discouraging autistics from being interested in research. I've been discouraged by pretty much every major advocacy group, for example, on every political "side."
Also, there has been a tendency to segregate autistics from science as usual--of saying that science doesn't really work on autistics so we must have some special model or we must have autism-specific standards.
In my view, there is no evidence to support this longstanding trend--instead the problem has been that via advocacy, autistics have been segregated from the standards and so on that we know must exist to protect and benefit nonautistics.
So currently there is the idea that while autistics can participate in research, we can only do so under certain models, which are, for example, far too sophisticated and elaborate for me.
The group in Montreal seems to work well because there is no such elaborate model. We just do science, and this is something that some autistics are really good at. Autistics and nonautistics work together as equals and it is no big deal. There is no need to adhere to some elaborate ideological model about how autistics and academics should work together.
Do you think autism researchers and autism advocates could and should worker closer together?
Since 1970 or before, advocacy (of various kinds) has been decisive in influencing the course of autism research. The question is whether this has been good for autistics. In many cases, I believe it hasn't been.
In part the responsibility lies on researchers who have used advocacy to prop up less than scientific (and less than ethical) views, theories, and practices.
I think it's very important that scientific and ethical standards not be lowered or discarded for autistics, and sadly there are a lot of demands via advocacy (from every direction) that this must happen.
I am really hoping for advocacy which demands higher standards of science and ethics for autistics, but this hasn't happened yet. Feel free to step in!
Do you think the politics of the autism community gets in the way of progress sometimes?
I think there is very strong evidence of how autism politics (on every "side") has harmed autistics.
The political process and political methods are important and they work, even if they look messy, but in autism they have dominated at the expense of scientific and ethical standards, and this has in my view harmed autistics, as it would for any other group.
There is more at the link. The photo above was taken by Thomas Henderson on an iPad, also the one below, both in Manchester. A lot of London, including the taxis, looked familiar due to Stephen Wiltshire's work. My experience in the UK was excellent. That was entirely due to those many who bravely welcomed and helped me out, who were extraordinarily forgiving of my many limitations, and who provided a lot of productive discussion.