This is going to be one of my
shorter articles – largely, I imagine, to be posted in reply to those who
“correct” my language when I refer to myself or others as autistic, as opposed
to “having autism”.
First things first, I
understand that the vast majority of the time, the intentions of the person are
good. I too was taught, way back when I started work in special education, that
the correct way of speaking about our students was “person first language”
(e.g. person with autism), and that the phrase “autistic person” (now known as
“identity-first language”) was disrespectful or even offensive.
However, many years in the
autism community have taught me that, in the majority of cases (albeit not
all), the autistic population tends to prefer identity-first language. And in
my experience, the phrase “autistic person” – far from being offensive – often
leads to people without autism* taking offence on my behalf.
(*For the duration of this article, I will be using
the phrase “people without autism” to describe those who are not on the
spectrum. I know I’ve not consulted any people without autism on their language
preferences, but regardless of this I’m encouraged by professionals to believe
that this is the most respectful way of referring to them. And policy-makers know
better than anyone with deeply personalised experience, I guess.)
Sarcasm aside though, the majority
of this article can be summed up by the following two sentences:
It is up to us to decide how we identify. It is not up
to others to decide on our behalf.
Like the saying goes in disability-related
communities: nothing about us without us.
If no autistic person has had any influence in a decision made about autistic
people, then that decision is not valid.
So equally, when it comes to
language choices, the person themselves
should be the one to decide and nobody else gets to overrule them. That means
that if I choose to talk about myself using identity-first language, nobody
without autism has earned the right to correct my language.
The problem with person-first language (PFL)
The most frequent argument in
favour of PFL is that autistic people are “more than their autism”; that one
diagnosis should not summarise the entirety of a person.
It’s a lovely-sounding
argument, which could almost feel empowering if it weren’t misguided – because this
attitude simply isn’t applied across the board. For example, I am a left-handed
white British Christian cisgender male, and I am “more than” each of those
things. However, I have yet to meet someone who calls me a “person with
left-handedness”, a “person with whiteness”, a “person with British citizenship”,
a “person with Christianity” or a “person with a penis”.
So why is the word “autism” supposed
to be thrown to the end of the sentence when these other facts about me aren’t?
In my opinion, it’s
symptomatic of the prevailing attitude that autism must be seen as a negative
attribute above all else. (From the moment I first realised this, I started to
see those who insist upon PFL as having been trained to see autism negatively by default – even if only trained
subconsciously by society – rather than mindful of both the strengths and
struggles autism brings.)
The extra factor is that the argument is often taken too far. Like the people who say “you wouldn’t call someone with cancer a ‘cancerous person’, so why would you call someone with autism an ‘autistic person’?”
If this is you, by the way,
reach right into your brain and remove that argument from your mind, forever.
For the sake of the autistic people you know, the autistic people you don’t know, for the sake of their
dignity and for the sake of public attitudes towards them – from this day until
the end of your life, never, ever, ever
compare being autistic to suffering from cancer ever again.
(And if the opinions of autistic
people don’t persuade you, maybe ask a cancer survivor how they feel about
being used for anti-autism rhetoric.)
More frighteningly, I have
also heard the argument that PFL implies that if someone can be “with” autism,
there’s a possibility that they can be without it too. That if autism is not seen as an intrinsic part of a
person’s being, it can be seen as something that can be separated from the
“real” person hiding beneath the autism.
What I mean is, this attitude
can have dangerous consequences. You won’t find any cure-peddlers, snake oil
merchants or bleachers (yes, they still exist) saying they can cure an autistic
You will, however, see them
claiming they can cure a “person with autism”.
The biggest argument in favour of identity-first
language is simply that the majority of autistic people prefer it.
Theoretically, that alone
should win the debate forever. But unfortunately, autistic people have only
recently started to have any influence in autism awareness circles, and the
world is still playing catch-up with our preferences.
“The language we use is important because it embodies and can therefore help change attitudes towards autism. To reflect the findings of [our] research, the NAS has begun to gradually increase the use of the term ‘autistic’ – particularly when talking about and to adults in that group”.
(Ironically, the NAS frequently get “corrected” in the comments sections of their work by well-meaning followers, as a direct result of them listening to autistic people’s opinions.)
And for the 1.5 million British people who work for the NHS: since posting this article, I’ve also been informed that even our good old NHS uses IFL, as indicated on this page here.
Other poll results include a recent one by Autism Speaks, (who don’t exactly have the most autism-positive history and have generally been seen as acting against the interests of autistic people):
And I have to admit: as far as I’m aware, the largest survey ever performed containing this topic was my own. In summer 2018 I ran a survey which was answered by 11,521 people, 3,431 of whom being confirmed autistic themselves with a further 2,320 suspecting they may be. (If anyone is aware of a larger survey, please do let me know and I’ll correct this paragraph.)
When it came to this
particular question, here were the results: the difference between autistic
respondents and those without autism being quite striking.
I’m aware of the
counter-argument, by the way, that “this survey doesn’t count people with real autism, like those poor non-verbal
people or those with learning difficulties”.
I’m also aware that not everyone will take the time to read the survey and investigate further, so I’ll mention here that yes it did.
One extra thing I really should mention (which sadly isn’t in the survey article, because I only discovered it upon interpreting the data out of curiosity last year), is the positivity difference among autistic people based on what they call themselves.
Plenty of autistic people
agreed or strongly agreed with “if a cure existed I would take it”, as well as
the sentence “autism has taken away from my life rather than added to it.” When
I looked at the data closely, I discovered something surprising.
Those who felt negatively about their autism disproportionately
called themselves “people with autism”. Those who felt positive about their
autism disproportionately called themselves “autistic people”.
Obviously there were
exceptions. In any sizeable data set, there always are. But since I discovered
this pattern, I have come to believe that learning to call yourself “autistic”
rather than “having autism” is an empowering positive step towards
self-acceptance, rather than a mere personal preference.
Repeated surveys have
indicated that the majority of us on the autism spectrum prefer IFL, with a
small but significant minority choosing PFL.
Personally, despite the tone
of this article, I actually don’t mind which I get called as long as the
content of the sentence is respectful. (I’d much rather hear “people with
autism are valuable and valid” than “autistic people need to be locked away”.)
But however I personally feel, the statistics command respect, and totally
warrant a change of behaviour from those who insist on terminology opposed by
the majority of autistic people.
And simultaneously, the substantial
minority with the opposite opinion demonstrate that the individual person
should always be asked. I’m not demanding that 100% of us adhere to IFL – I’m
demanding that 100% of us have our opinions respected by people without autism.
And in conclusion, please enjoy some high-quality
identity-first memes produced for discussions just like this.
I hope this article helps put things into perspective, even if (and especially if) you have found it challenging. As always, anyone reading this is more than welcome to join Autistic Not Weird’s Facebook community. And for those who feel my work is worth supporting, here’s a link to my Patreon page for those who want to help me keep doing my advocacy for a living, in exchange for various rewards.
Underdogs, a near-future dystopia series where the heroes are teenagers with special needs, is a character-driven war story which pitches twelve people against an army of millions, balancing intense action with a deeply developed neurodiverse cast.
Chris Bonnello is a national and international autism speaker, available to lead talks and training sessions from the perspective of an autistic former teacher. For further information please click here (opens in new window). Autistic Not Weird on Facebook