Why Autism Research Isn’t For Autistic People

In the US, you can’t be an autism researcher in most labs without accepting the pathological model of autism. You must reference old research, mostly done by white cisgender male researchers on white cisgender autistic boys. You must talk about the deficits of theory of mind and the difficulties in social communication. I’ve seen at least 6 or 7 talks about autism, and almost all of them started off the same.

  1. “They have difficulty communicating and interacting socially.”
  2. “They have poor theory of mind and struggle to understand other people.”
  3. “These deficits..” [insert research here]

This post isn’t about debunking these myths. Plenty of people have already done this, and even new research is focusing on this as well (i.e., the double empathy problem). Even if autism researchers don’t necessarily endorse these views personally, they must include this old research in order to be seen as “legitimate” within the field. If you only use recent research papers which include less neurotypical bias and show true differences rather than deficits, you are seen as being biased. If you are an autistic person doing autism research, you are seen as biasing your research. Why is this not so for allistic people who do autism research? How are they not biased? Why does it only go one way? Unfortunately, it’s probably because of the assumption that autistic people have “poor theory of mind,” still perpetuated by allistic people today.

Things that inherently devalue one’s work to other researchers:

  • Including positive language about autism (sensory processing benefits/differences, such as a better auditory working memory), instead of interpreting autistic strengths as neurotypical deficits.
  • Including neutral language about autism, such as “differences” instead of “deficits.”
  • Mentioning that neurotypical people have their own problems with interpreting autistic people.
  • Using identity-first language (and not saying that children “suffer from autism” and not talking about autism “severity”).

Because autism researchers may not use the terms neurotypical and autistic, but instead use “people with ASD” and “control” (or worse, “people with ASD” and “normal”), even people outside of the field who don’t know the proper terminology will use “normal” instead of neurotypical. I had to email a professor in my department because they were unaware of what terminology to use, and used the world “normal” (in an unsure way) twice during a Q-and-A after an autism research talk, when referring to neurotypical children. He appreciated that I let him know the appropriate terms. However, it should be up to researchers themselves to stop perpetuating harmful phrases that dehumanize us. It should be up to researchers to learn about the group they study, to respect that group’s terminology, and to not assume that difference equals a deficit. And they shouldn’t perpetuate harmful stereotypes just to be seen as a more legitimate researcher, or to make a larger point about how “important” autism research is. This is based off of the idea that autistic people have problems, and researchers must help them, through research. But researchers shouldn’t have to focus solely on autistic people’s weaknesses or “deficits” through a neurotypical lens in order to get their grant proposal funded. Yes, autistic people have problems (mental health issues from neurotypical bias and bullying/high suicide rates/co-morbid problems such as sleep, epilepsy) but researchers are often focusing on autistic people, and their “deficits,” as being the problem themselves.

Working From The Inside

Herein lies the problem of autism research. In order to be seen as a legitimate researcher, especially as a graduate student, you must give in to the pathologized medical model of “Autism Spectrum Disorder.” Because if you don’t, your work will not be taken seriously. This is a Catch-22, even for autistic people who are doing autism research. It is very difficult to work within a system that automatically devalues autistic thinking and the autistic perspective, no matter the objective measurements. It will take some truly rebellious and persistent researchers to change the autism research field into something that won’t make autistic people feel Less Than, Othered, and Deficient. It also requires reviewers of grants to support neurodiversity and to also reject the pathologized model of autism. And to be honest, I’m not sure it’s currently possible to change this thinking within the system. We autistic people are whole human beings, not just two lines in a textbook. We are not “communication difficulties,” “repetitive behaviors,” or “poor theory of minds.” We are people. The more that allistic people see that, the better chance we have of changing their minds.

[Just to clarify – I am not an autism researcher.]

4 thoughts on “Why Autism Research Isn’t For Autistic People

  1. I wonder if, as autistic people, our “theory of mind” (TOM) isn’t broken at all? What if we base our TOM on the way **our** minds work? Given that our minds work differently from NT minds, this would give the impression to the NT world that our TOM being compromised not because we are broken but because we are significantly different.

    Liked by 1 person

    1. This is something that is actually starting to be held up by research. Look into the work of Damian Milton and Catherine Crompton, especially, whose research has found in various ways that autistic people understand each other better than non-autistic people understand us, and that we tend to have far fewer social communication problems when communicating with other autistic people.

      Liked by 2 people

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