When my son was at school he used the word “gay” to describe anything or anybody he didn't like and vehemently denied that this was in anyway homophobic. There was an abrupt turnaround in this attitude when I started using his name in this way; he became quite uncomfortable when anything negative was labelled “Samuel ” *.
So it is with autism; the stigma around the condition has led to the word having negative connotations. I think the solution here is not to change the word but to address the stigma as it is cultural phenomenon that drives attitudes. For example negative attitudes to gay people gave rise in the 1980s to Section 28 an anti-gay provision, thankfully subseqeuently repealed. In my lifetime we have gone from homosexual acts being illegal to it being illegal to discriminate against people on the basis of their sexuality.
This is a seismic shift our culture – exactly what we need to happen in relation to autism. I think using appropriate language is a good start.
So what is appropriate language? I think it is quite simple really - call autistic people autistic people -ditch the prefixes high-functioning/low functioning and “mild” and don’t initiate use of the outdated term Asperger’s syndrome to describe an autistic person who you find intelligent. Unfortunately all these qualifiers and the ugly phrase “people with autism” are often used to describe autistic people, and (to my mind rubbing salt into the wound) they are usually regarded by those using them as positive - a softening of the dread term “autism”. Actually the majority of autistic people prefer to be referred to simply as autistic people. This information has been available for some time, for example Jim Sinclair wrote about this in 1999, but it seems to have passed some major autism charities** and legislation drafting officials by.
Unfortunately autism is often seen as totally negative. When I was interviewed by the Mail on Sunday for an article about my work, the reporter told me she could not mention my suspicion that my ex-partner might also be autistic because that could be libellous. Even medical professionals are not immune to this attitude – a woman who recently went to her GP seeking a diagnosis was asked “Why would a nice lady like you want a diagnosis like that?”.
Given the prevalence of such attitudes it's easy to see how an alternative term for one of its trajectories (Asperger’s Syndrome) or a statement that the person is actually good for something (high functioning) could be considered positive - ways to soften the blow of autism. However autism is not negative - it is a neurological atypicality which brings with it both strengths and challenges. It is more like a constellation than a spectrum. It does not move along one line going from low to high, it circles in many spheres, and one of its many facets is a tendency to extremes, leading to the same individual being ‘high functioning’ in some areas and ‘low functioning’ in others.
Asperger’s Syndrome is not included the current edition of the DSM, the psychiatrists’ bible, and when it was the diagnostic criteria separating it from other forms of autism was the age of speaking, which is not a predictor of anything much (Einstein spoke at 4) but most people, even many health professionals are unaware of this. I think it is fine for people who have a diagnosis of Asperger’s to stick with this when describing themselves, but for new diagnoses we don’t need to continue with the spurious division between slightly different autistic trajectories.
(Why autism should even be in the DSM, when it is not a psychiatric condition, is another whole debate which I won't go into here)
I find it sad that many people feel obliged to say “people with autism”even though it doesn’t come naturally as an expression; I was particularly struck by a mother explaining how she had to stop herself from talking about her autistic daughter and remember to say “my daughter with autism”. Nobody says “my son with homosexuality” or “my friend with Judaism”. To me it makes sense to refer to people in the way they wish to be referred to – if some autistic people prefer to call themselves and be called “people with autism” that is their prerogative – but referring to the rest of us as autistic people, and accepting autism as a neurology that adds to the richness of human diversity will help create a more accepting culture, which can only be good for everyone.
*Not his real name – he’s shy – true story though.
** Since writing this the National Autistic Society has done a survey on language confirming that autistic people prefer to be called autistic people, and is in the process of updating its language use.