Autistic people aren’t yet well-represented among autism researchers. I’ve been trying to keep track of my fellow autistic autism researchers and, worldwide, I’m currently aware of about four dozen of us, or thereabouts, spread out widely across the sciences, social sciences, and humanities, although from social media groups I think there may be somewhat more. Still, many of us are students, which means that our control over our research is limited. I’m only aware of a tiny handful of research faculty professors and lecturers who are autistic. This is not good representation.

By comparison, based on a running PubMed query, I figure that there are usually 50-100 scholarly articles being published about autism every single week. How many thousands of different people are responsible for this research? Clearly a very large number, and clearly most of them must be neurotypical.

The basic conclusion: right now, almost all autism research is done by well-meaning neurotypicals. Autistic people are not well-represented among autism researchers.

I don’t think this is a healthy situation. Sure, neurotypical people can be allies of autistic people, just like men can be feminists, but that doesn’t necessarily mean that we want to give gender studies departments over to a bunch of old white men.

When we talk about representation, we can make a distinction between two general types, descriptive and substantive.[1]

Descriptive representation is achieved when the representatives represent the characteristics of the represented population. Since autism research is concerned with autistic people, as well as other stakeholders like parents, descriptive representation would be achieved if we randomly selected a bunch of autistic people and their parents and forced them to join autism research.

Substantive representation is where the representatives advance the interests of a given community. Substantive representation would be achieved if autism researchers (regardless of whether they had any personal connection to autism or not) produced research that genuinely reflected the nature and needs of autistic people, as well as other stakeholders in the community.

Obviously, descriptive representation will never be achieved in autism research. The idea of excluding all researchers except those with a personal connection to autism is absurd. Furthermore, not all stakeholders in autism research have the sorts of abilities that are suited for research, let alone the extensive training that is required.

On the other hand, there is a clear connection between descriptive and substantive representation. Intuitively, we recoil against the idea of gender studies performed solely by old white men, because we recognize that, sometimes, a personal connection makes it more likely that research will genuinely represent the group – its true nature and needs – well.

This is by no means a perfect relationship. Indeed, in many contexts, having some distance from the subject matter at hand might make one see things a little more objectivity. In these contexts, a relative lack of descriptive representation may result in improved substantive representation.

However, it is important to note that being neurotypical is not necessarily the same thing as being completely disinterested in autism research: on the contrary, it gives one a bias in favour of seeing the world from a neurotypical perspective. Autistic people don’t exist in a vacuum; we routinely interact with neurotypical people and one can approach the study of these interactions either from an autistic perspective or a neurotypical perspective. Furthermore, there are so few autistic people in research today that I do not think we need worry overmuch about the subjectivity that may come with an excessive personal connection to our subject! No, the challenge we grapple with today is a lack of adequate descriptive representation.

Certainly some of the research done in the present climate is of great value, but far too much of it is based on deeply flawed assumptions about autistic people – assumptions which, I think, could be cleared up if autistic people had a larger presence within the research world. Today, there are autism researchers who have never talked to an autistic advocate.

At risk of sounding self-interested, I think that we need to do more to ensure that community stakeholders, especially autistic people, are involved in the production of autism research.  Even if we can achieve only relatively modest increases in descriptive representation, we may still see dramatic improvements in substantive representation.

Fortunately, I am seeing progress. The number of autistic autism researchers seems to be increasing, perhaps as more and more of the autistic people diagnosed during the recent expansion of the autistic constellation enter adulthood and seek out careers. Moreover, there seems to be an increased recognition among neurotypical researchers that autistic involvement in research is a good thing. For example, I’m delighted by the International Society for Autism Research’s recent move to establish a committee of autistic researchers, which I am co-chairing. I think this move by the world’s largest autism research society speaks to how the presence of autistic autism researchers is becoming far more common and accepted by the mainstream of autism research.

Of course, there’s only so far that we can get by increasing the number of autistic people working in academia, but lots of great people are working on bringing autistic people and other stakeholders from communities into research through community-based participatory research (CBPR) approaches. These community collaborators are equal partners of research teams and are involved in formulating research questions, but they don’t have to be academics. In fact, there might even be advantages to having people from non-academic backgrounds involved in research; as a researcher, even an autistic one, I’m not invulnerable to being captured by abstruse academic questions that may be of little practical importance to communities.

Even if researchers don’t immediately jump to using CBPR (I haven’t, but then again I’m only a graduate student), it is still possible to bring on autistic people and other stakeholders like parents as advisors. These advisors could be a token body that only gets consulted occasionally and not in such a way that they can contribute to substantive decisions, which doesn’t really help anyone, but it is also possible for advisors to play a more significant role if they are given adequate time and information to do so.

As I’ve written elsewhere, I also think there are also good reasons to bring relevant stakeholders into decision-making processes around journal articles and grants.

Ultimately, I think involving autistic people and other stakeholders in autism research should be a win-win for everyone. It would draw different communities together and help them learn from one another. It would help autism research overcome its double-empathy problem and gain a less biased perspective that would, I think, improve the quality of research. And it could help to make research more relevant to the needs of communities.

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[1] I’m totally stealing this idea from work on the politics of representation in parliamentary democracy, but why can’t we apply it to researchers? When we produce research that fails to reflect the needs of the community, is this not a failure of substantive representation? When we produce research that inaccurately characterizes the community we study, is this not also a failure to achieve substantive representation? Ultimately, nobody can claim to produce knowledge objectively; all research is, to a greater or lesser extent, political.