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It's Okay To Say Autistic

It's Okay To Say Autistic

Image: Nick Cummins

This is not a post debating the merits of identity-first vs person-first language. Plenty of other people have done that, some very eloquently (here, here, here and here). This post is simply to say that, regardless of the words you personally choose to describe autism, it’s okay for people to use the word autistic.

It seems ridiculous to me that I should have to write a post like this. But I do, and here’s why.

This week I received the latest in a long line of requests to change the word autistic to the “more correct, less offensive person-first language”. This isn’t the first time I’ve received such a request, and unfortunately nor will it be the last. And I’m not the only one to hear this, many of the people I know who also use and identify with the word autistic have been asked this at some point.

Almost every person who has requested this change has done so not to admonish but to educate me, just in case I wasn’t aware that “identity-first language is insensitive”. Putting aside my feelings about being told that my choice of word to describe myself is offensive, I do understand where this intent to educate is coming from. If I had been taught that a particular word was disrespectful to the people it described, then I too would want to educate those who used it.

And that’s where much of the problem lies, education.

There is continued across-the-board insistence that person-first is the only respectful way to refer to people with any disability. This is simply not true, despite it continuing to pop up in the curriculum and policies of most education, government and non-profit agencies.

These policies need to be updated to reflect that there are exceptions to these person-first guidelines. That people who choose to use the word autistic are not being ignorant, offensive, politically incorrect, disrespectful or insensitive. That even if you personally don’t want to use the word, other people do. People who have the right to choose the words they use to refer to themselves and their community.

Despite the abundance of personal accounts by people with disabilities using and preferring identity-first language, there remains the insistence on person-first language when writing for the public record - research reports, text books, government policy and curriculum. Although intended as an instrument of respect, this rigid adherence to the use of person-first language is in effect denying some people on the autism spectrum the right to talk about themselves and their experience in words of their own choosing.

A friend recently had a university assignment automatically failed for her use of the word autistic. Another was told she had to remove it from a research report about autism service provision. The latest request for me to change my preferred terminology came from a non-profit agency who very much wanted to use something that I had written, but whose hands were tied by the person-first policy of a government department from which they received funding.

The net result of being pressured to use person-first language in this way is that people who prefer the word autistic are being asked to change the way in which they describe themselves and their experiences in order to be listened to, supported and understood.

The only way that these policies will change is by acknowledging those people with disabilities who say that not only are they okay with identity-first language but in many cases prefer it... but this can’t happen if the things that they write are automatically being shut out by their choice of words.

And this is the part that frustrates me the most. If we’re not free to use identity-first language in the things we write for education, government or non-profit agencies because it goes against out-dated policies, how do we ever correct those policies? How do we stop this cycle of misinformation about what people with disabilities prefer? How do we teach speech therapists and psychologists and doctors and teachers that autistic is not a negative word? 

So this is me, an incredibly frustrated autistic person and parent to autistic people, saying that I prefer the word autistic and will continue to use it in everything that I write out of respect for the many people who have expressed this same preference.

And just for the record, the fact that I have to keep explaining this isn’t just annoying to me. It’s exhausting, humiliating and heart-breaking.

This article was first published in June 2013.

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