Here’s an interesting question: what is the proper subject of autism research?  Or, to rephrase things slightly, who should be the subjects of autism research?

When I use the word “subject” here, I don’t mean a participant in a research study.  I’m talking about a nonliving thing, living being, or class of things or beings that is dealt with by something else (in this case, that is dealt with by autism research).  I’m asking about the proper subject matter for autism research.[1]

So, what should autism research be about?

The traditional, and perhaps most obvious, answer would be “autistic people.”  (Unless you use person-first language, in which case I suppose you would say “people with autism,” but the basic idea is similar.)

Based on the traditional practice of the autism research community, the idea that the subject of “autism” research should include neurotypicals as well as autists appears to extremely counterintuitive.  Indeed, at one point, we didn’t even have a clear term to refer to neurotypicals, to typically-developing people.  Older autism studies – and even some of the newer ones – speak simply of “normal” or “healthy” controls, not “typically-developing” controls.

This traditional idea is wrong.  When neurotypical researchers set themselves up as impartial, objective experts, looking down at autistic people from the lofty heights of an ivory tower, the quality of scholarship about autism suffers.

Autistic people do not exist in splendid isolation from neurotypical people.  On the contrary, many of us go through our lives having little or no contact with other autistics.  We live in a neurotypical world,[2] and the vast majority of the people we interact with are neurotypical.  The social institutions of our societies were built by neurotypicals.  The spaces in which we live are built by neurotypicals.

One could say that autistic people’s lives are dominated by our autism.  We used to call autism “pervasive developmental disorder” for a reason – autism is pervasive!  However, it might be more accurate to say that autistic people’s lives are dominated by the fact of being autistic in a neurotypical society.

As autism researchers, we must see our subject through this lens.  We must define the scope of our subject matter to not only include autistic people, but also the interaction between autistic people and the world around them.

Social Interactions

Perhaps the most obvious example of this is the social interaction.  It’s kind of in the word “interaction.”  By definition, there are always at least two sides to an interaction.

It may indeed be the case that autistic people struggle with social skills, especially in the fluid, complicated, overwhelming real world.  But can we make the claim that autistic people’s so-called “social deficits” are the cause of autistic people’s difficulties with friendships, social isolation, and victimization?

It is true that autistic people are socially odd.  These social oddities can be detected very easily – not only just in short video clips, but even in static, still images from videos!  Sometimes interacting with autistic people can be uncomfortable because of our oddities.  Sometimes we can even be rude.  Some of us can be aggressive.

But in a world where neurotypical people may choose to respond to mere social oddities by ignoring, rejecting, or, often, even bullying autistic people, can we truly leap so easily to the judgement that autistic people’s “social deficits” are at fault for our social challenges?  Are the behaviours of the neurotypicals irrelevant?  Of course not!  To accurately understand autistic people’s social struggles, we cannot ignore the autistic part of the interaction, but nor can we ignore the neurotypical side.

Sensory Processing

However, we don’t just need to take the neurotypical world into account in these interpersonal interactions, but also with things we might tend to think of as internal processes in autistic people’s brains, like sensory processes.

The sensory inputs experienced by autistic people are products of the neurotypical world.  If an autistic person has a negative sensory experience after being exposed to overwhelming, noisy hallways or distracting, flickering lights, is the autistic person’s brain at fault, or is the sensory stimulus the problem?

Furthermore, we have to consider how the neurotypical world can in fact influence how the autistic brain processes sensory stimuli.  Autistic people report that their sensory sensitivities can be affected by internal states – notably through a more distressing sensory experience during periods of stress.  This stress is not necessarily an inevitable product of the autistic brain.  Autistic people may experience stress due to the neurotypical world: due to strong social pressures demanding neurotypical behaviour, due to the unpredictability of the neurotypical world, due to their own poverty and marginalization in the neurotypical world,[3] or, indeed, from previously-experienced sensory stimuli.

What About Nonspeaking Autistics, Co-occurring Intellectual Disabilities, and So Forth?

Of course, whenever we make critical or political claims about autism research, we should consider carefully whether they apply to the entire autism spectrum or just a subset of it.  One might agree that everything I say here applies very well to the sorts of verbal autistic adults I’ve met doing things like studying towards degrees at university, but one might question whether my arguments are relevant to nonspeaking autistic people, or autistic people with co-occurring intellectual disabilities.  One might argue that the internal causes of disability in these populations are so obvious that we don’t need to consider how the neurotypical world might contribute.

I have to disagree – quite strongly.  It is true that these people may have serious challenges, but I would argue that this simply makes the neurotypical world more, not less, important in their lives.

Consider: what would happen if we started treating these autistic people just as we would treat any random neurotypical person?  Would that be helpful?  Obviously not!

If we define disability as some sort of gap between a person and the world around them, nonspeaking autistics would be “more” disabled than speaking autistics in a world where they were all treated alike.  The gap between these people, and what the neurotypical world typically expects of people, is very large.  There may be ways nonspeaking autistic people can – for better or worse – learn to meet more of the demands of the neurotypical world, but realistically, the largest share of the burden of change inevitably falls on the neurotypical world: it is the neurotypical world that must do most of the changing to adapt to nonspeaking autistic people.

To a large extent, our actual behaviour recognizes this reality, as do the institutions of our society.  Autistic adults with intellectual disabilities can often access expensive systems of support, perhaps even including residential supports such as community living group homes.  In practice, we recognize that the structure of our world is important and we modify it to accommodate these autists.

However, it is crucial that we continue to explore how our society and its institutions affect the lives of nonspeaking autists or autists with intellectual disabilities.  The subject matter of research regarding these people should not only include these people, but the world around them – as it should for research about any group of autistic people, or even any group of neurodivergent or disabled people.

Concluding Thoughts

I think we could make a good argument that the greatest single achievement of the autistic advocacy movement to date has been to draw attention to the existence of neurotypical people as a group: as a neurotype like any other.  When we don’t properly have a concept of a group’s existence, it’s hard to make that group a subject of inquiry.  How could we study neurotypicals in autism research when we had no concept of the neurotypical?

But when autistic people began writing parodic diagnostic criteria for “Neurotypic Disorder,” “Neurotypical Spectrum Disorder,” and other variants thereon,[4] they demonstrated that neurotypical people existed as a category.  More than that, they showed that the pathological language used in research was not objective, and that neurotypical people can not only be imperfect, but might play a causal role in some of autistic people’s challenges.

The autism research world has historically been dominated by neurotypical academics, and it probably is easier to see the flaws in others than in one’s self or one’s own neurotype.  Sadly, the postmodernists are right when they say that we, as humans, will never truly be completely objective or purely rational.  We’re imperfect beings.  But I believe the project of Enlightenment modernism, the struggle towards greater rationality and objectivity, should still be our goal.  Sometimes, seeing things from a new perspective can bring one a little closer to objectivity, and illuminate aspects of problems we hadn’t previously considered.  This is why the present situation in the autism world, where different groups mix so little, is so troubling to me.  All of us – researchers, autistic people, and others like parents and professionals – have much to learn from one another.

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[1] You can see how this meaning of “subject” differs from “research participant” when you consider the idea of a control group.  Sometimes, participants in a control group will be “subjects” in the sense that they participate in research, but not the “subject” in the sense of the subject matter of the research.  For example, if I were to formulate the hypothesis that red-haired people are smarter than everyone else, and if I were to recruit a control group of black-haired, brown-haired, and blond people to test this hypothesis, the subject matter of my study would be red-haired people (or more specifically, the intelligence of red-haired people).  The controls are incidental.  They may be participants, but they are not the subject of the research.

[2] I don’t mean to ignore the many and varied contributions of autistic people to our modern world, of course.  Notably, these likely include the great humanistic moral philosophies of the Enlightenment – both Bentham’s utilitarianism and Kant’s deontological ethics – that began to displace older ideas of morality anchored on authority, honour, vengeance, superstition, and the like.  Autistic people also probably gave us Newtonian mechanics, possibly gave us Einstein’s relativity, and certainly gave us a host of other scientific ideas.  However, these outstanding figures aside, autistic people in general are often marginalized and disempowered.  This, combined with our small numbers, has ensured that social customs, social spaces, and societies in general have mostly been built by neurotypicals.

[3] We probably have a strong bias to considering psychological or neurological explanations for autistic people’s behaviour – autistic people are, after all, the traditional subject of our autism research, and we know that autism is a product of the brain and the mind –  but the poverty and unemployment or under-employment of autistic adults is far from irrelevant.  A fascinating book by Michael Marmot, The Health Gap, discusses the impact of inequality on health.  In large part, these poor physical health outcomes are probably related to the psychological stresses of being on the lower levels of an unequal society.

[4] For examples, see http://erikengdahl.se/autism/isnt/, https://emmashopebook.com/2013/02/11/the-signs-of-neurotypical-spectrum-disorder/, https://fysh.org/~zefram/allism/allism_intro.txt, etc.