Are you Aprilness-aware?

It is, thankfully, nearly the end of another month with Aprilness. Another ‘Autism Awareness Month’ – or as the ever-so-slightly-more enlightened have started to call it, ‘Autism Acceptance Month’. These are not labels chosen by the Autistic community (and here I deliberately use a capital ‘A’).

This month of awareness- or acceptance-raising isn’t something any of us asked for. No, it was foisted upon us against our will, portrayed as being in our best interests (though we had no say in its conception). It is in reality a month-long advertising campaign for a multi-billion-dollar industry that can only survive as long as governments, funders, health professionals, teachers, parents and anyone else ‘affected by autism’ (ugh!) remain convinced that we who are actually Autistic have no real understanding and no real prospect of autonomy.

Dark grey horizontal banner, with a three-dimensional-effect bevelled gold-, red-, magenta- and blue-shaded infinity symbol to the right of centre, and the text beneath it in cyan capitals: ‘Proud to be -hash- Actually Autistic’.
Twitter banner designed by Nikita Engel to show Autistic pride, not just awareness or even acceptance

As long as we are seen as less than fully human, parents will be persuaded (and in the US, even coerced by health insurance companies) to subject their Autistic children to ineffectual and hugely damaging behaviouralist ‘therapies’ such as ABA or PBS. This is especially the case for the marginalised among us: those who are unable to speak (but aren’t given the tools they need to communicate), those with learning disabilities, those who are Black, those who are physically disabled, those born into poverty.

The intention of these so-called ‘therapies’ is to make children less embarrassing for their parents and wider society – to make Autistic people invisible, to make us seem ‘normal’. In the US in particular, it’s understandable that parents of Black and/or disabled Autistic children would want that. After all, deviations from socially mandated norms are severely punished there – far too often by lethal police overreactions.

With autism? Or simply Autistic?

As deeply concerning as the infliction of ABA/PBS on Autistic children is – and those who administer these are a big part of that multi-billion-dollar autism industry – I want to focus just now on language, and language in its relation to power.

Within (English-language) disability activism, there are linguistic divides.

Some are geographical or cultural, as in for instance the general use of ‘people with disabilities’ in the US versus the preferred ‘disabled people’ in the UK. (The English name of the CRPD, which ironically isn’t ratified by the US, is the UN Convention on the Rights of Persons with Disabilities.)

Some are associated with particular disabilities. For instance, although d/Deaf and blind people generally prefer identity-first language, people with learning disabilities (in the UK sense) tend to prefer person-first language.

(Just as it’s respectful when talking to an individual to use whatever terms they use to describe themselves, when talking about a group of people it’s respectful to go with the majority preference of people within the group, or to mix and match if there’s no overwhelming preference. This ought to be obvious.)

Some language variation differentiates professional researchers and clinicians from their experimental subjects and patients. This is the case when it comes to Autistic people.

At this point, the ‘autism professional’, a person who actually works in ‘the field of autism’, usually weighs in to say, somewhat authoritatively, ‘We prefer to say “people with autism”.’

And then a parent of an Autistic boy, having been made aware (!) by the ‘autism professionals’ – and probably never having knowingly spoken to an Autistic adult – chimes in, ‘My son isn’t autistic. He has autism. He’s a person first and foremost. His disability doesn’t define him!’

Yet Autistic people in English-speaking countries overwhelmingly prefer to be called Autistic people (as evidenced by countless online polls, as well as research by autism professionals!). Many of us are proudly Autistic, and see it as so fundamental to who we are that we’d say, in many ways, being Autistic does define us.

In the context of the neurodiversity paradigm, this makes a lot of sense. We have a substantially different neurotype from most other people, but it isn’t intrinsically inferior or deficient. (Indeed much talk of deficits in research about us is premised on the presumed superiority of the ‘neurotypically developed’ brain.)

And, yes, we are disabled in various different ways. But within the social model of disability, this can be viewed largely as something done to us, by our maladjusted environment, rather than as something inherently wrong with us, or something we ought even to be ashamed of.

The cruelty of person-first language

The aforementioned stereotypical ‘autism parent’ (not Autistic parent) insisted, as do some ‘autism professionals’ (not Autistic professionals), that person-first language somehow prevents the child being ‘defined by their disability’ (or ‘by their autism’). Some will also say that person-first language reminds them that Autistic people are people!

I find it astonishing that professionals working with Autistic people – and even parents of Autistic children! – need to be reminded of our personhood. I’d say they have bigger problems than phrasing if that’s their starting point. Alarmingly, for some of them, it probably is their starting point. Ivar Lovaas, a key figure behind both applied behaviour analysis and its sibling, LGBT+ conversion therapy, famously said in a 1974 interview:

‘You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose and a mouth – but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.’ (Interviewed by Paul Chance in Psychology Today, January 1974, p.76.)

There is nothing inherently respectful about person-first language when you’re talking about Autistic people, or disabled people in general. It doesn’t seem to remind the people we encounter that we are people too, with the same rights as they have, including bodily autonomy. If anything, some academics and clinicians use person-first language as a euphemistic power-play, designed to put us firmly in our place, pathologising our natural way of being and patronising us at the same time.

The stigma of ‘autism’

Why is there this reluctance to let someone just ‘be Autistic’? Why do some people jump in and say, ‘don’t let it define you!’?

Well, some people come straight out with it, and compare being Autistic to having something like cancer. (Yes, people really do say that to justify their use of language: ‘You wouldn’t call someone “a cancerous person”, would you?’). These are usually the same people looking for a ‘cure’ for autism. (That’s another big money-spinner in the autism industry, alongside trying to make sure people like us are never born. Eugenics went out of fashion with the Nazis, but now it’s back – and so are they.)

So it basically boils down to the thought that being Autistic is somehow a tragedy or a curse, something that should be spoken of, if at all, in the hushedest of hushed tones. And in a take every bit as bad as Lovaas’s opinion that we’re not born as people, far too many parents of Autistic children imagine that there’s a ‘normal’ child trapped inside by this terrible thing called ‘autism’. You might think I’m exaggerating, but as recently as 2009, a well-known and very well-funded US autism charity (almost universally reviled by Autistic people) produced an absolutely horrific TV ad promoting this view – ⚠️ massive content warning for ableism and much else! Read the transcript if you wish, but I won’t link directly to the terrifying ad.

People naturally want to distance themselves (and their loved ones) from terrible things, and in English, person-first language is one strategy for doing that for things that people suffer from. We do in fact talk about people who have cancer, and talk about them battling it, despite the fact that it’s actually just their bodies developing in an undesirable way thanks to a chance mutation. But even cancer-sufferers can usually distance themselves from the affected parts of their bodies – and indeed wish to be without those parts. They don’t normally think that they’d be somehow less themselves without them.

On the other hand, there’s no part of my body that I can point to and say, ‘There it is! There’s my autism!’ It’s an intrinsic part of who I am. It’s the way my brain developed, and probably (given the co-occurrence of various physical conditions) the way much of the rest of me developed too. Without getting deeply into philosophical arguments about the nature of personhood, I think I can safely say that if I wasn’t Autistic, I wouldn’t be me. It’s my way of being in the world.

So I’m not sure what this thing is that I’m supposed to have, but clearly it’s supposed to be bad, something to be suppressed, or even removed from my system if possible, something I’d have been better off not having had in the first place. What people like those from the US autism charity are hiding behind with their person-first euphemisms is that they see me as bad, they think I should act more like them, or even be changed into one of them, they think it would have been better if I hadn’t been born.

The thing is, I am very happy with who I am. I don’t want to be anyone else. Yes, I consider being Autistic in an environment tailored to neurotypical people’s needs to be disabling at times. Aside from that, I have weaknesses and strengths just like anyone else. And I am a human being, and I have the right to be me, regardless of how badly I might fit into the cookie-cutter capitalist machine.

We need to stop talking about ‘autism’

The world’s problems can’t be solved just by tweaking the language we use to talk about things. But language that frames things unhelpfully can be a barrier to seeing a way forward. As long as we talk about autism awareness or autism acceptance or autism anything, our language obscures what we’re talking about, which is actually Autistic people (or Autistics, or Autists). Funny how person-first language can make you forget that!

The problem is that ‘autism’ is an abstraction away from Autistic people to something that we seemingly have in common (though we are quite diverse too).

Abstractions can be useful, but in everyday speech we usually prefer concreteness. A Black feminist academic may develop a thesis turning on the social idea of Blackness, which is clearly an abstraction away from the idea of being Black. But Black people in everyday speech don’t talk about themselves as having Blackness, or even about their Blackness affecting how they’re treated in a racialised context. That level of abstraction isn’t usually the easiest way to think about things.

Part of the problem here (linguistically) is that while abstract nouns like Blackness, femaleness, ethnicity and womanhood are clearly derived from adjectives (Black, female and ethnic) or concrete nouns (woman), the noun autism appears to fall in the class of (less obviously derived) -ism nouns denoting pathological conditions – rheumatism, alcoholism and so on – which have derived adjective/noun forms ending in -ic (autistic, rheumatic, alcoholic). (There are also derived -ism words, but most of these denote ideologies and ideology-like concepts: capitalism, Marxism, colonialism and so on.)

If we as Autistic people want full acceptance as a neurominority with the same worth, rights and dignity as any other group, I propose we stop using the name of the so-called condition we’re all supposed to have, ‘autism’. When someone talks about ‘autism awareness’, let’s not push for ‘autism acceptance’ or ‘autism understanding’. No, we are Autistic. And if someone wants to write a sociological paper on the shared understanding of Autistic people, let them coin a new term, one that is clearly derived from the adjective (or concrete noun) we use to describe ourselves: Autisticness or Autisticity perhaps? Let’s be proud of our way of being in the world. Don’t let others define us!

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