I love learning about autism at the moment. I can spend many hours relaxing reading blogs, books and research. Occasionally though, I find my special interest can be a source of irritation rather than relaxation. So today I am blogging because I want a bit of a moan.
I try and get to as many conferences as possible and have seen some excellent speakers talking about autism. At my most recent one, I heard a researcher speak about the work they are doing to engage the autism community and how feedback from autistic people had enabled them to make many positive changes to their research design. There is obviously progress, if the involvement of the autism community is sought where it wasn’t before. I don’t think this engagement goes far enough though.
‘Researchers’ and ‘the community’
Frequently, the speaker referred to ‘researchers’ and ‘the community’ but it seemed to be assumed that they are two mutually exclusive groups. The talk seemed very much ‘us and them’ as though autistic people were there to be studied, but not to study. I commented on the fact that autistic people carrying out the research would be an improvement and was told ‘it is hard to find autistic people who are able’. Given how we are disadvantaged both at school and in higher education I am sure it is difficult, but let’s look at this statement in more detail:
Firstly, earlier in the talk there was mention of how the environment was made more autism friendly so that ‘the community’ could come to their offices to be engaged. Flourescent lights turned off, annoying buzzy microphones not used etc. But if researchers need to make changes to their workplace in order to make it accessible to ‘the community’ then that is quite telling. It suggests their everyday workplace is not an accessible environment and so many autistic people may be prevented from getting jobs as researchers. Making workplaces accessible is a work in progress, I know that. But you would think a place that is researching autism would be ahead of the game. If there were a real belief that autistic people are best placed to research autism, surely more would be done to enable this.
Secondly, if existing researchers say publicly that it’s hard to find autistic people who are able enough to become researchers, then that’s going to reduce the likelihood of a) an autistic person believing themselves capable of this achievement and b) disclosure of autism by any autistic person applying for a research post. It sends out a pretty clear message to any one applying for a job – the employer believes non autistic people are more able than autistic people.
My view is that problems with how we identify autistic people (or often don’t) also contribute to difficulties finding researchers who are openly autistic. I believe there are some autistic people who don’t require any support. Some of us have learned to get by, perhaps at great cost to our mental health. I suspect, it is often the more intellectually able who have been able to do this. Seeing as being a researcher is intellectually challenging, we are talking about the people who may be most suited to becoming researchers. This group of intelligent autistic people are often precluded from a diagnosis as they have become so competent at copying the behaviour of non autistic people. Many people have complete faith in the diagnostic criteria and believe you can’t be autistic unless a medical professional can see it. So ironically, the years of research by primarily non autistic people have resulted in diagnostic criteria which may not be appropriate for recognising the autistic people who may make the best researchers. Without that recognition these autistic people may never pay much attention to autism as a field. There is no doubt my interest in the field has been sparked as a direct result of realising my family and I are autistic.
There is another point I would like to make about the representativeness not only of the autistic people you are using in your sample, but also the autistic people you are engaging whilst designing the study. This particular researcher was confident that in one particular area, the sample was representative of autistic people. I would like to say here (as there was no opportunity at the talk) that if you are researching autism, it is in my humble opinion, never possible to say that you have a representative sample. We don’t know who all the autistic people are and I believe the diagnostic criteria are biased. It is based mostly on research done on males for a start, and some say that females present differently. So one can say one’s sample is representative of people with an autism diagnosis but I do not believe people with an autism diagnosis are reprentative of the autistic population.
Anyway, I am glad to get that off my chest. It would be so good to be able to have a proper debate about these issues with those who are doing the research. In the absence of that opportunity, blogging will have to suffice. Please comment if you have any opinions on the matter.