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Interesting blog about standards in autism research.

Trogluddite

On a late-night (early-morning?) internet trawling sessions the other day, I came across a blog I hadn't seen before (link at the foot of the post), which those of you interested in the ethics and other standards behind research into autism may find interesting.

It is written by an autistic Canadian woman, who despite not being formally qualified as a researcher, has been getting up to her elbows in the topic, and in particular the way that research into autism seems to be held to less stringent academic standards than other areas of psychology research - notably when new interventions are introduced which make wild claims, often before they have been properly validated, so tainting the research into them.

I have yet to read all of it myself, and am unsure that I agree with everything, but it raises some very worrying points about the quality of autism research. Unfortunately, most of the referenced papers are behind paywalls, which is rather a shame. Also note that when she talks about "autism advocates", she usually doesn't mean grass roots advocates, but organisations such as Autism Speaks; which rather confused me at first.

The Autism Crisis (Michelle Dawson)

Parents

  • This is an interesting and alarming read. Debates about approriate involvement and recognition of autistic people are going to intensify. I am trying to remember the ladders of participation model from years ago. Basically it starts off with people having stuff done to them and ends up with them in charge. There's an extensive literature on co-production which seems quite a positive way of working, if done well.

    Seeing that a signatory of the letter quoted in The Autism Crisis was from Edinburgh University reminded me that Cameron Maitland is doing some research exploring how important group connections are for mental health. He's on twitter as @c_a_maitland and it seems like he's pretty ethically sound in his approach to research. I'm sure the findings are going to demonstrate the importance of connectedness (is that a word?!) but will anything practical come of it, like ensuring people actually have internet access if they want it.

  • in reply to Sunflower

    Thanks for the pointers there, I shall look into those too when I've digested the rest of the blog.

    Something which particularly concerned me about it is the inroads being made into UK healthcare by large US corporations, as noted in the shocking posts recently about autistic people being detained in secure units. They are the very corporations most likely to introduce some of the controversial autism interventions favoured in the USA, and of course, if the tainted research into them has already been accepted over there, it would be very convenient for the government or NHS to accept the results at face value.

    Those interventions seem to me based on stripping autistic people of their autistic identity, and even of connections between each other;  a model that's the polar opposite of the co-operative one that you're suggesting, and potentially very harmful not just to individuals, but also to collective self-advocacy.

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  • in reply to Sunflower

    Thanks for the pointers there, I shall look into those too when I've digested the rest of the blog.

    Something which particularly concerned me about it is the inroads being made into UK healthcare by large US corporations, as noted in the shocking posts recently about autistic people being detained in secure units. They are the very corporations most likely to introduce some of the controversial autism interventions favoured in the USA, and of course, if the tainted research into them has already been accepted over there, it would be very convenient for the government or NHS to accept the results at face value.

    Those interventions seem to me based on stripping autistic people of their autistic identity, and even of connections between each other;  a model that's the polar opposite of the co-operative one that you're suggesting, and potentially very harmful not just to individuals, but also to collective self-advocacy.

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