I’ve written before about autism as a disability: how important it is to recognise that it qualifies as one, however positive we want to be about neurodiversity, and how even the best things about it can be disabling. I think it’s fair to say that in the context of a society that’s not built for us, most autistic people are disabled at least to some degree. So are most other people who are diagnosably neurodivergent: the neurodiversity movement is largely a movement of disabled people, and it has much to learn from the wider disability rights movement. Even so, for all the barriers autistic people face, disability is not inherent to autism*. Autism is still autism, however little it disables someone in practice.
Diagnosis and distress
This is a problem for the psychiatric approach, which really only recognises diseases or syndromes; and since psychiatry is considered the ultimate authority on this sort of thing, that’s a problem for our understanding of autism more broadly. In psychiatry it’s considered unethical to give something a label unless it causes significant impairment or distress, so neurological and cognitive differences are only recognised through the lens of pathology. In other words, if it’s not a disorder, they don’t want to talk about it.
That might be fine for something like depression, where suffering is built into the whole idea of what it is. With something like autism, it means that people are only identified as autistic if they fit the diagnostic criteria and their autism is causing significant problems: the DSM requires that ‘symptoms are present from early childhood and limit or impair everyday functioning’. But the value of diagnosis is not just to deal with pre-existing problems; there are a wide range of reasons why it can be helpful for people to understand that they are autistic. It can help a person make sense of their life, connect with others with similar experiences, and prepare for any future problems. Strictly speaking a formal diagnosis is not required for any of these, but being denied one can certainly undermine them. There is also a broader problem here: because autism is usually only diagnosed when people are facing related barriers or distress, almost all the research we have on autism is restricted to such people.
The problem with only looking at problems
We can read that only 16% of autistic people have full-time jobs, for example, or that autistic adults are more than three times as likely to be depressed, but it’s impossible to know how representative these statistics are. If people were only diagnosed with a love of football when it caused clinically significant levels of suffering or social impairment we’d probably find that football-lovers are much more likely to be unemployed and depressed, too.
This is not to suggest that depression and joblessness are not problems for autistic people — they definitely are — it’s just that we have no way of guessing how many people are equally autistic, but are basically doing fine. This is important. For one thing, it affects how hopeful we should be about the future of people being identified as autistic now: not only are things slowly improving as more people start to understand what it takes to help autistics to thrive, but many autistic people are already thriving, they’re just under-represented in the statistics. We also need to consider that working a full-time job is not necessarily a good thing for everyone (or anyone) and many autistic people work and thrive in other ways.
As Ann Memmott briefly mentions here, the true employment figures are likely to be quite a lot higher than we know. A recent survey of programmers found 2.6% know they’re autistic, for example, but many who’ve worked in the field suspect the real number is much higher than that. Given improvements in understanding and awareness, many more of them would be identified as autistic if they were growing up now. That means that even if nothing improved for autistic people, we should expect employment stats to show a steady upward trend.
Eccentricity vs abnormality
Changing societal attitudes to difference are another reason why it matters that not all autistic people are really disabled in practice. There have almost certainly been autistic people for at least as long as there have been humans. How many of them were lucky enough to just be seen as eccentrics at worst, maybe not quite fitting in like other people but with something valuable to offer? How many were seen as idiots, and out of those, how many still had a place in society? How many had unusual and highly valued skills?
Society has changed in many ways over the last century or so, for better and worse. People are pushed through schools and into jobs (largely in offices) that assume a wide range of competencies that not everyone possesses. To get and keep jobs in the 21st century, we are usually required first to pass interviews dominated by first impressions and surface-level social skills, and then to work around many other people in environments we have little control over, while socialising in expected ways. Employment has not always been like this, and in many jobs these demands have little to do with the actual work. As conformity has been institutionalised in schools and workplaces, we have also seen the rise of the idea that there are ways of being that are normal, and ways that are abnormal and wrong — going way beyond the rather hazy ideas people used to have about ‘madness’.
The medicalisation of human variation can help people to identify and treat genuine problems, but there is no getting away from its role in suppressing different ways of thinking. There is just no scientific basis for declaring some types of mind as being okay, while others are disordered, even if life is harder for people with some neurotypes than others in any given society. Perhaps recognising this fact, psychiatrists have resorted to talking about ‘clinically significant distress or impairment’ alongside more specific diagnostic criteria. But being gay in a homophobic society often causes distress, and that’s more a problem with society than with homosexuality. Thankfully most professionals have moved on from seeing homosexuality as a mental disorder, and it has been taken out of diagnostic manuals. Being autistic tends to come with significant distress too, and impairments in some areas, but that is not, in itself, evidence that it is a disorder. There are many advantages to different people having different ways of seeing the world and different areas of high and low ability. We could be moving towards a society which recognises that, and works with cognitive diversity rather than against it.
So while I take issue with people asserting that autism is not a disability, we miss the bigger picture if we assume that all autistic people are disabled, disordered or distressed. This is an unfortunate consequence of seeing autism through a medical lens, and one of the reasons for moving towards the neurodiversity perspective on it, and away from medical gatekeeping. Until we have completed that move, we will be excluding people from the label of ‘autism’ simply because they are seen to be doing too well — however much that label might benefit their self-understanding, and however much our collective understanding of autism is undermined by leaving them out.
Robert Chapman’s ‘Did gender norms “cause” the autism epidemic?’ is a fascinating take on the cultural history of autism, and his chapter on ‘Neurodiversity Theory and its Discontents’ in The Bloomsbury Companion to Philosophy of Psychiatry is highly recommended.
Janine Booth’s poem ‘We Had To Let Them Go’ gets to the heart of how autistic people are excluded from jobs they may actually be very good at, and her book ‘Autism Equality in the Workplace’ is a brilliant guide to making workplaces less disabling for autistic people.
I haven’t read much Michel Foucault, but Abnormal is good on the role of psychiatry in the formation of modern ideas of normality and abnormality.
*A quick note on terminology: arguably, under the social model of disability, nothing is inherently a disability at all; after all, blind people are only seen as disabled because the rest of the population can see. I should emphasise that disability is not necessarily a bad thing, but it does mean that someone is stopped from doing things they could otherwise do. Some prefer to discard the notion of things being disabilities at all, given that they’re only disabling in some contexts, but I find it useful to be able to talk about disabilities, and describing autism in terms of ‘impairments’ is probably worse. Luke Beardon makes a case in ‘Autism and Asperger Syndrome in Adults’ for talking in terms of the broader context of ‘disadvantage’:
it is absolutely clear that there are individuals, clearly autistic, who do not regard themselves in any way as disordered or impaired — or even disabled. One term that I think valuable within this context is ‘disadvantage’. It is clear that most people with autism are at a distinct disadvantage directly as a result of being autistic within a society that does not readily understand them.