YouTube video on autism and language

“The language we use around autism matters”

I’ve started making YouTube videos of myself talking about autism – eek! (also see this video on “why talking is hard” – forthcoming)

The first video I’ve made is about autism and language. Here it is:

It is not about the ways in which autistic people are (presumed to be) “disordered” in language usage. Rather, it is about the ways in which a lot of nonautistic society is (truly) disordered in their language use around autism.

I wrote a script to help me remember what I wanted to say in the video. In some ways the script helps, in other ways it really does not (see above mentioned “why talking is hard” video for more on why this is). Since I went to the trouble of writing a script I thought I may as well include it here. In case some of what I said in the video isn’t that clear, you can refer to the script. What I’ve written below also ended up expanding on the original script, so there’s more detail for those who are interested. I think it’s also useful to have a list of the terms I mentioned, since there were a lot.

There are perhaps 3 principles that should guide our language use:

  1. What autistic people want (most important)

  2. What is empowering and helpful to autistic people (also important)

  3. What is scientifically accurate (least important, partly because this only reflects subjective value judgement anyway)

1

Language use around autism is a controversial issue. I’m not really sure why this is (well, actually it’s because of prejudice, ignorance and ableism…), because to me it is quite simple. The people who we are talking about – in this case autistic people – should have the first and last say in the language that is being used to describe them. It is the opinion of the autistic community that matters, nobody else’s. Of course, the autistic community is not a monolithic entity and every individual within it is going to have their opinion. But polls and anecdotal evidence consistently demonstrate that autistics generally prefer the more neutral, positive and progressive language, as opposed to a lot of the more traditional deficit-based terms that are still very much in circulation. For example, the majority of autistics state that they prefer identity-first language over person-first language. This means, I think, that wider society (namely, allistic people) should be using identity-first language in order to respect the preference of the autistic majority (whilst using person-first on a case by case basis with autistics who express this as their preference). Autistic people can use whatever language they please because it is their own neurology being talked about. You can refer to another post I wrote recently on this very topic.

2

It is the case that certain terms (leaving aside for a moment how scientifically “accurate” they are) are more positive and progressive and thus hold the potential to be more helpful and empowering to those they are describing. This should matter. It should be a strong reason for us to be opting for the more progressive language. There is no benefit to using deficit-model type thinking and language for autistic people. Some of us may simply not care or be affected by the language, which is fair enough. But a lot of autistics do feel offended and negatively impacted. Even if we don’t realise it, words and the attitudes they convey can plant (even quite subtle) thoughts and feelings within us about autistic people somehow being lesser or broken. It can and does lead to negative self-perception and self-esteem issues that have real life consequences for autistic people. And beyond the individual, negative language is only going to create and further perpetuate a negative atmosphere around autism in the general culture. All of this helps no-one except for those people with a vested interest in “curing” or other vanquishing autism out of existence, and those who are generally invested in trying to convince everyone how bad autism is. Framing autism in a negative way certainly helps with these things. And this is precisely the major reason why we should care about using more progressive language.

3

Some people (namely researchers) are going to argue that we need to use terms that are scientifically accurate and that autism is rightfully and truthfully classified as a “disorder” or as a “condition”, or whatever it may be. For example, Simon-Baron Cohen has done work around trying to prove that autism can not in fact be rightfully thought of as a “disorder”, and has used his scientific findings to back up an argument for using “condition” instead. This is a step in the right direction (although, personally, I still don’t like “condition”), but I think the whole thing is rather beyond the point. This is because the scientific terms we use – like all words – are socially constructed and essentially reflect what are only subjective value judgments. As a society we can and should be able to choose the terms we use. Science doesn’t decide for us. Humans have created language (language is not a naturally-occurring thing), and thus humans have the power to control and change language according to our own criteria.

With all this being said, below are some lists of terms and phrases that I – along with plenty of other autistics – think it would be good if everyone could stop using (especially nonautistics, who shouldn’t get to have a say in this). I’ve also listed a few terms that would be good to use as alternatives.

Terms to avoid using in relation to autism

  • Disorder / ASD

  • Condition / ASC

  • Syndrome

  • High and low functioning

  • Severe and mild

  • Impaired, triad of impairments

  • Deficit, dysfunction

  • Disease (even more concerning, I’ve also seen sickness and illness!)

  • Tragedy

  • Epidemic or wave

  • Burden

  • Problem

  • Challenging

  • Autism as a fate

  • Thief, prison, monster, being “trapped”

  • Suffer from

  • Afflicted by, touched by, affected by (though this latter one is being quite “sensitive” I’ll admit)

  • Autism as other, not human, alien

  • Robot or machine metaphors

  • Autism as a puzzle, or as somehow involving missing pieces or parts

  • Autism as being “in one’s own world”

Nice words to use instead  🙂

  • Autism – quite simple (and much shorter than many of the above!)

  • Autistic

  • Asperger’s (ideally I’d say drop the syndrome)

  • Different

  • Disabled

  • Neurodivergent / neurodivergence

  • Neurodifference

  • On the spectrum (although I think we could be a bit critical of the spectrum metaphor)

  • Aspie, autie (although some find these a bit “cutesy” and perhaps childish)

  • Neuroqueer

Phrases not to say to an autistic person

These tend to apply most often when you are meeting a new person who is autistic or if someone you already know is disclosing to you. The following phrases imply one or more of the following, that: a) autism is an inherently negative thing (which, unsurprisingly, is an inherently offensive thing to hear), b) that you really don’t understand autism (which is fair enough, but you can avoid exposing your lack of knowledge by taking time to listen and learn from the person instead!), and c) that you don’t think being autistic is a thing that really matters (to that person, to yourself, or to wider society).

  • I’m sorry

  • That must be so hard

  • You must be high-functioning?

  • You don’t look autistic!

  • You can’t be autistic!

  • You’re not that bad!

  • You can’t tell / You seem so normal

  • Have you tried xyz?

  • But you can do xyz…!

  • We’re all a bit autistic

  • We’re all different

  • Isn’t that over-diagnosed these days?

  • Don’t worry, it doesn’t matter, I treat everyone the same!

  • You’re not like x autistic person I know – especially not good if refering to a child

  • Where are you on the spectrum?

  • What’s your special talent?

  • Autism doesn’t define you

  • Why do you want to label yourself?

  • But you’re so nice/friendly/outgoing/empathetic!?

  • Equally, a non-response can be a bit off-putting…

A good alternative might be something along the lines of “wow, interesting, so what is that like for you?” Or perhaps asking more specific questions about that person’s experience.

Let me know in the comments if there’s anything I’ve missed, and I’ll add it to the list!

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