Autism as a Disability
Autism is, or at least can be, a disability. That’s a legal fact, and it’s a hugely important one in pushing for our needs to be recognised and respected, but it’s something that many on the spectrum are not entirely comfortable with. To understand why, let’s dig down a bit into what ‘disability’ means, and how that relates to autism.
The Meaning of Disability
The World Health Organisation defines ‘disability’ as ‘any restriction or lack (resulting from any impairment) of ability to perform an activity in the manner or within the range considered normal for a human being’. There are two bits of that definition which I think are particularly interesting: one, ‘resulting from any impairment’; two, ‘normal for a human being’. The first implies that disability is a direct consequence of an impairment, while the second takes for granted that ‘normalcy’ is both meaningful and desirable. Many involved in Disability Studies activism reject the first, while the second is incompatible with recognition of neurodiversity. We’ll come back to this a bit later.
As one Disability Studies scholar puts it: ‘disability is not a characteristic that exists in the person or a problem of the person that must be “fixed” or “cured.” Instead, disability is a construct that finds its meaning within a social and cultural context’.
In other words, the medical model of disability is already problematic when talking about physical impairments like blindness, deafness or reduced mobility; all of these can be more disabling, or less so, depending on the ways they are accommodated by society and the expectations we have of people. In this sense, disabled people are disabled at least partly by society, not simply by their own impairments. A society that prioritises accessibility and inclusion allows people with differences usually understood as impairments to take part in many activities that would otherwise be made impossible for them. This is the essence of the social model of disability.
With something like autism, where so many of the impairments that are supposed to characterise the condition are specifically social, it’s doubly clear that the medical model is not an adequate lens for understanding how disability arises. Still, in legal and medical contexts, autism is defined by a series of impairments. It seems clear the so-called ‘triad of impairments’ in all of its many formulations misses important features of autism, and arguably it misunderstands others. Still, it’s not a bad starting place for understanding why autism is seen as a disability (as well as why this isn’t the full story).
Social Communication
It’s certainly true that communication difficulties often occur between autistic and non-autistic people. Body language often passes us by, along with context that other people would take for granted, including things that make it easier to understand when people aren’t exactly saying what they mean. This is often disabling. Most of us spend most of our time in social contexts full of non-autistic people, and misunderstandings are common in both directions. In autistic spaces, many of these difficulties evaporate, although we are all so used to neurotypical-dominated spaces that the transition is not automatic.
Social Imagination
Closely related to communication difficulties, autistic people often have trouble imagining how other people will react to or experience a given situation. This is sometimes thought of as a deficit of empathy or imagination, which seems to me to entirely misunderstand what is happening.
Empathising with people who seem very different from ourselves, whose experience of the world if not like our own, is always harder. This is part of the reason why privilege is a problem, and why people feel able to oppress and dehumanise other people. Autistic people don’t lack empathy, any more than other people lack empathy for autistics, but it is hard to know where to direct your empathy if you can’t really understand someone else’s experiences in the first place. As you’ll know if you’ve ever met someone with very different neurology from your own, that can be tough. The communication barriers are relevant here, too — we’re liable to miss the body language that other people use to let each other know how they’re feeling. On the other hand, if we do pick it up, we sometimes experience empathy so intensely that we really need to tune it out.
Similarly, it’s no wonder that autistic people can struggle to imagine how other people will react if their heads just don’t work the same way. That doesn’t imply a lack of imagination — even social imagination — it just means that a much greater imaginative leap is required. Difficulty imagining what the people around you will think and do can certainly be disabling, whatever the cause. People thrown suddenly into cultures very different from their own have similar problems. Many autistic people have vivid imaginations for various sorts of things, and some even have rich social imaginations, allowing them to be actors, prolific writers of fiction and so on. On the other hand, some of us just find humans less interesting than a lot of other things. Which brings us on to…
Restricted Interests
This is a fun one. It’s not obvious why restricted interests would be an impairment, for a start. We know that some extremely successful people are obsessively interested in a small number of things. If impairments are supposed to be things that stop us from performing activities, I suppose it’s technically accurate to say that having no interest in that activity is an impairment, but it seems a little odd. It actually makes more sense than it sounds, once you start to think about autistic inertia — I’ll get back to that later. The main problem, though, seems to be more with having little interest in things that other people think are important, and passionate, abiding enthusiasm for things that other people don’t get. Many of us become passionate about different things at different times, too, so to me the idea that autistic interests are specifically restricted as such seems to be a confusion. ‘Focused interests’ is a much more accurate and less stigmatising term. For my part, I’m very interested in almost everything. Apart from sport, which would of course be far more socially acceptable. Perhaps it is unusual for autistic people to have quite such eclectic interests, but it’s certainly not unique.
Usually the most disabling things about this supposed impairment are being seen as odd (can confirm, I am odd) and the pain of being pulled away from things we are passionately interested in. Sometimes, though, people will get so stuck in their interests that it gets in the way of doing other things. We’ll return to the problem of stuckness later; it doesn’t always have to do with intense interests, but it can be disabling whatever the cause.
So much for the triad of impairments. They are sufficient to qualify autism as a genuine disability in many social contexts, but it’s helpful to realise just how much their disabling nature comes down to how different autistic people are from the average person. In a majority-autistic world, it seems likely that for the large part, it would be the rest of you who are seen as disabled. Having said that, there’s a huge amount of variation within the autistic spectrum (or the autistic constellation), so that difficulties with communication and social imagination are still likely to arise at times between those who experience autism quite differently — and one person often experiences it very differently at different times. In the world we live in now, many autistic people have huge difficulties relating to social interaction.
But the triad of impairments is woefully inadequate for understanding autism. Many of the problems autistic people experience have little to do with any of those, though you will sometimes see some of them shoehorned into one or another of them. Let’s look at some common autistic experiences which don’t fit under those headings.
Inertia
Inertia is best understood as resistance to a change in state. That can mean trouble getting going, but it can also mean trouble changing tracks, or stopping once you’ve started. Any of those can manifest as getting stuck, and this can be a hugely disabling thing for many autists. This happens when we’re supposed to be doing something that’s of no interest to us, especially when we can’t even understand the point of it. It also happens when we’re supposed to be doing something really interesting, but can’t quite build up the momentum to get started with it.
This is often talked about in terms ‘executive dysfunction’, which I’ve always felt is a bit of a grab-bag of a term, but basically amounts to difficulty getting things done, owing to things like being unable to switch attention from one task to another.
As with so many of these features, there are upsides to this: when we’re really into a thing, we can often hyperfocus on it productively and at length, in a way that is out of reach of most who aren’t autistic. I believe that autistic inertia is down to the different way autistic people distribute attention (or cognitive resources). It’s far more of an all-or-nothing thing than it is for the allistic population — like a spotlight rather than a lantern, or a spear rather than a net. This style of thinking, known as monotropism, has many advantages and disadvantages. When we commit our attention to something, we really commit it, at the expense of other interests which other people would still have bubbling away in the background. Because there’s so much investment in what we’re focusing on, switching focus is hard and sometimes extremely uncomfortable — especially if someone else comes along and tries to rip us out of our attention tunnel. But intense focus is great for thinking deeply, memorising items of particular interest and working methodically, for all the disadvantages it comes with. Another of which is…
Context-blindness
We tend not to be tuned in to things that other people assume are obvious context. This is at the root of many of the communication difficulties we experience, as I mentioned earlier. The tendency to miss out on body language is closely related: multi-channel communication is made difficult by our cognitive style. I think this is also part of the reason why many of us are uncomfortable with eye contact, particularly while trying to listen to what someone is saying.
Context-blindness is a misleading way of looking at it, though. What happens is that we build our own context around what we’re focusing on, which is usually different from other people’s. Maybe we miss social cues and connections that seem clear to others, but we’re busy making our own connections — often ones that other people miss. This is a big part of the value of neurodiversity, and for that matter, diversity more generally: different perspectives, and different ways of thinking about things, lend themselves to different kinds of solutions, sometimes to problems nobody would even be thinking about otherwise.
Sensory Differences
Just as we tend to focus our attention much more tightly than most people, we tend to experience sensory input much more intensely, or else hardly at all. This can be ovewhelming, and sensory overload often plays a part in autistic meltdowns. Sometimes smells and sounds that other people don’t even register can be intolerable, making certain spaces extremely unpleasant to navigate, if not completely inaccessible.
Yet again, though, there are upsides — sensory experiences can be overwhelmingly pleasant, too, and acute senses have all sorts of uses, in music, cooking, art, sensing danger and so on. Low levels of sensitivity have their value too, and sometimes autistic people can be much better than others at putting up with things like cold and pain. Still, whether or not you think autistic senses are impaired as such, they can certainly be disabling, especially in environments designed with little regard for the dangers of visual and auditory stress.
Anxiety
Not everyone on the spectrum experiences high levels of anxiety, and it would be a mistake to think it’s exactly a feature of autism. However, it is extremely common, which is not at all surprising when you consider how many confusing and unpleasant social situations the average autistic person will have experienced by the time they reach adulthood. To some extent, anxiety is an adaptive response: better for anxiety to hold you back than to plunge into interactions that are going to be upsetting for everyone, right? Better to be prepared for a nasty shock than to let it come out of nowhere.
It might have its uses, but anxiety is exhausting, stressful, and sometimes downright crippling. The confusion of childhood (not to mention adulthood) leaves many autists with anxiety levels ramped way up beyond constructive levels. Often anxiety interacts with autistic tendencies to get stuck in loops of worry. Many of the stereotypes of autism have to do with anxiety going into overdrive — constant stimming behaviours are used to help regulate anxiety levels (among other things), repeatedly asking questions can be a symptom of anxiety, anxiety is one of the biggest triggers for meltdowns.
When stress levels are lower, and energy levels are high enough, it is much easier not to do things that are going to strike anyone as weird. Unfortunately, the effort involved in doing so — in passing as ‘normal’, if you like — can take a huge toll on us. Sometimes when we finally get to let our guards down, we don’t have much left for anything else.
Autism can be a disability, then, to differing degrees for different people, at different times, and in different contexts. It can be far less disabling in environments that don’t cause sensory overload, where things are made clear, where we are free of unreasonable expectations. When it disables, it is often by making things much harder and more depleting, rather than making them impossible. Much of the time, for many of us, it is not a disability at all, but we need to recognise the times when it is in order to push for support and reasonable accommodations in education, the workplace and elsewhere.
Particularly for those of us who are identified as autistic late in life, it can feel like a leap to tick that box saying ‘Do you consider yourself to have a disability?’ and to ask for the help we need. This is all the more of a problem when nobody’s actually offering us any support up-front, when we have to fight for it and when we’ve been sort of coping in life up to now. I mean, we’re still alive, right? So it can’t be that bad, can it? It can be though, and it’s usually better for everyone if we can all manage to get all the help we need to function at our best — whether that means the removal of barriers to workplace accessibility, guidance in understanding what makes us different and what that means, or support with managing day-to-day activities.
To understand autism as a disability the social model is indispensable, but despite what the diagnostic criteria focus on, many of the ways it disables are not specifically social. It makes many things far, far harder for autistic people than they are for others; but it can make other things easier, and when you look closely at most of the things that are classed as ‘impairments’ in autism, it becomes clear that this is not the whole story.
The author is an autistic science teacher, not a disability studies scholar, psychologist or sociologist, so that’s something to bear in mind. With thanks to Sonny Hallett, Dinah Murray, all at Autscape, and the Autistic-Led Late-Identification Group at Number 6.
