Why I no longer support research into autism

By Caroline Hearst

May 14, 2018

When I initially discovered I’m autistic I became an enthusiastic informal student of autism  As well as reading all there was to read (you could do that then!) going to talks and conferences and meeting other autistic people  I became a serial volunteer as a subject of research studies, because I believed that research would benefit autistic people.

Gradually my perception of the territory changed and I came to suspect that autism is seen as much (if not more) as a commercial opportunity as a part of human neurodiversity.
So in terms of research, I answered questionnaires where there were multiple choices posing unanswerable questions (Q would I prefer to go to a library or a party? real A  it depends what mood I’m in and if I want research a topic or to meet people, but there was nowhere to add put the real answers).  

I also took part in activities so mind numbingly boring that I felt forced to add in my own little variations thus either skewing the results or wasting hours of both my and the researcher’s time, never mind the expensive equipment I was hooked up to.
The information sent out before I took part told in one of these projects me told me that an initial interview would take no more than two hours.  When I told them I needed to leave after two and a half hours they were surprised.  When I later complained that they had taken longer than promised I was told that was because I was too chatty. They told me the experiment was about autistic people peoples response to lying.  However, the experiment only involved me  interacting with a machine (True I had been told there was someone else in another room operating another machine, but this was an untruth). Surely it should be obvious that lying to a computer (even if one is told there is a human at the other end) is likely to involve different stresses than lying to the face of another human being who is present.  Apparently not.

I began to lose faith in research, I was also struck by the fact that in autistic groups I met at least the same number of women and men, and yet the experts insisted that there are at least four times as many autistic men as women.  We now have the interesting spectacle of the very experts who told us autism affects more men than women and is in fact related to extreme male brain, acknowledging that women are under-diagnosed and jumping on a bandwagon to blame women for this. (“Women aren’t diagnosed because they mask”).  

Then I started hearing of people who were initially told by experts they could not be autistic because they crossed the road in a different place each day, or they were holding a coherent conversation with the expert, or even because they were an attractive woman.
The drip drip of these experiences led me to believe that research is about the interests of researchers, or the commercial interests of funders, and that those being researched are often just regarded as vehicles to satisfy these interests

It is known that autism is not a single thing (people are now talking about “the autisms” and as Martijn Dekker quoted in his 2016 Autscape talk “The ASD diagnosis lacks biological and construct validity”*.  In fact the definition of autism keeps changing because it is actually contextual, it is neurological atypicality, which can only be measured in relation to typicality.

I have had quite a few “NT” autism professionals and therapists confide in me that they know they are autistic, but they don’t feel they could “come out” as it would impact negatively on their credibility. As I’ve met more than one person who’s lost their job after coming out autistic I’m not in a position to contradict this.  

In autism research we have a cohort of people who don’t identify as autistic and confer upon themselves the ability to state categorically that they “are not autistic” studying another group of people who they define as autistic. So, they are arbitrarily placing people in a category that they define the boundaries of and then using those people as research subjects in ways of their choosing.  This looks to me like a game where the odds are heavily stacked. In fact it seems to be a game between the experts where the autistic people are the pawns.

This ability to define autism then enables experts to do research that further entrenches the hidden assumption that typicality is necessarily good and atypicality bad.  We could even get to the point where they are no longer searching for the elusive “cure” for autism but trying to prevent it altogether by identifying it before birth and encouraging abortion for women carrying a foetus deemed to be “at risk” of this condition.

But we, the autistic community, want better lives for autistic people and that is where we are currently trying to steer research, so am I suggesting throwing the baby out with the bathwater?  No, I’m looking at the baby from a different angle and suggesting that we study neurology and that what is currently called autism will be covered in various ways by various aspects of this.  It is already recognised that all autistic traits are human traits, and that having one specific autistic trait does not make you autistic, and the line between autistic and non-autistic is blurred rather than fixed.

I have often compared the situation of autistic people now to the situation of gay people 50 or so years ago.  There has been a massive cultural shift in relation to sexuality and gender, and what has also happened is the field has opened up, instead of a gay movement dominated by gay men  with lesbians hardly believed to even exist in some quarters (remind you of anything in the autism field?) now there is the LGBQTI+ community with Facebook apparently offering 71 gender options.  

When a sexual divergence a norm of heterosexuality was initially recognised it was first acknowledged in men and stigmatised and regarded as extremely rare. When it because less stigmatised it turned out not to be so rare and to also occur in women this led to the recognition of more complex and multifaceted identities than initially imagined. I am suggesting this could also happen with autism.

With all the emphasis on scientific objectivity it seems strange to insist on separating off the study of a group that is not even scientifically identifiable. My point here is that we no longer need a separate autism research, we need neurology research which has the capacity to enrich the lives of human beings across the neurodiversity constellation.

*Waterhouse, L., London, E. & Gillberg, C. Rev J Autism Dev Disord (2016). doi:10.1007/s40489-016-0085-x