Watch your language when talking about autism

Not right for everyone

Recently, together with the National Autistic Society, my colleagues and I asked 3,470 autistic people, parents and their broader support network, about the words they use to describe themselves, their children or the people with whom they work. Did they prefer to use “autistic person”? Or “person with autism”? Or “person who has autism”?

The results clearly showed that people use many terms when talking about autism. The words “autism” and “on the autism spectrum” were clear favourites among all the groups added together. But there was much disagreement on the use of several words and phrases. Professionals preferred to use “person with autism” while autistic adults and family members preferred on the whole to use “is autistic”. They thought that the term allowed them to describe the centrality of autism to their lives.

One autistic woman said:

In describing someone who’s autistic as ‘a person with autism/person who has autism/(or worst of all) person who suffers from autism’ you imply that autism is separate from a person, and behind their autism is a ‘normal’ person.

Agree to disagree

But these preferences were not unanimous, of course. Instead, for autistic people, family members and professionals, the words they used often hinged on what people believed autism to be. Those who felt that autism is one trait of many in a person tended to prefer person-first language. Others, who felt that autism is central to their or their child’s identity, opted to use “autistic”. Others still noted the need to use different words depending on whom one is speaking to.

There is no one way of describing autism on which everyone can agree. There never will be. In order to answer who the question of who gets to decide which terms should be used, first, everyone connected to autism needs to come to accept the fact of disagreement and to respond to it with openness, flexibility and tolerance of divergence of opinion. We should always seek to establish how people wish to be described – by asking them directly, if possible – and not impose external views or guidelines upon them.

Perhaps even more importantly, we need to create the conditions for debate and conversation between all of the people who are touched by autism and work in the field. It is, after all, only when we listen to each other that we discover what individual words are taken to mean and why they often matter so much.

The ConversationAbout the author

Liz Pellicano is Reader in Developmental Cognitive Science at UCL Institute of Education.



This article was originally published on The Conversation. Read the original article.

Autism Daily Newscast has wrestled with this issue of language and still does. Our current position can be found here. 

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  1. Planet Autism says:

    Definitely “autistic” not person with autism. I cannot be separated from my autism, without it I would be someone else. I agree that this PCness has gone mad. Leave us to decide what we prefer, don’t presume to speak for us.