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Does language affect our attitudes to autism?

8/1/2015

11 Comments

 
I was delighted by Ann Coffey’s stance in a Guardian article seeking to remove the term “child prostitute” from legislation to remove the implication that sexually exploited children are complicit in the abuse they suffer. This seems to me to be a necessary step in clearly defining what is actually happening and who is responsible for it.  Language is important – it both displays and helps us define our attitudes to that which it describes.

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thankfully subsequently repealed.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 Ditch the prefixes "high-functioning/low functioning" and “mild” and don’t initiate use of the outdated term Asperger’s syndrome to describe an autistic person who you find intelligent.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.


11 Comments
Sharon
11/1/2015 09:37:55 am

Caroline, I love the way you have described autism as a constellation rather than a spectrum and that autistic people can be high functioning in so e areas and low in others. When I set a small charity with other visually impaired people back in the 80's we felt we were being positive in saying "people with visual impairment' , emphasising we were people above everything else and our visual impairment did not define us

Reply
Heather
11/1/2015 12:49:15 pm

Thank you for the interesting and thought-provoking blog post which, for me, raised two issues.

First, I agree wholeheartedly about removing the stigma associated with this condition. Just about every time I have heard this term used by a neurotypical, there is an undertone of contempt. I have had friends (who don't know that I am on the spectrum) say about a third person (who was not present at the conversation) "oh, X has terrible social skills. They are a poster child for autism." In other words, autism has been reduced to the sole issue of social skills and anyone who is seen at being poor at socialising has been both pathologised and spoken of with contempt. By contrast, I have never heard an NT say "Gosh! X knows so much about a subject, they must be on the spectrum!"

The other issue is a more controversial one of description: I have Asperger's (diagnosed at the Autism Research Centre in Cambridge) and don't mind using the term "Asperger''s" to describe myself or to say where I am on the spectrum. I don't have a particular view on the "person first" view of language, which holds that a person should be described as "a person with dyslexia" rather than "a dyslexic person". To me - and I know that others feel differently - there is no appreciable difference in the pragmatics of this expression. My only real feeling on the subject is that "autistic person" is less clumsy than "person with autism" and is thus preferable.

Reply
Caroline Hearst link
12/1/2015 10:32:15 am

Thanks for your comments Sharon and Heather.. I think that it is of paramount importance that people get referred to in the way they feel most comfortable with.

However, having said that, it seems worth considering the implications of some terms that are currently used. I feel that prefixing autism with “high-functioning”, implies that the norm is low functioning, while putting “person with” in front of autism implies autism is a bit or baggage that a person brings along with them. The idea that everyone needs to say “person” first to demonstrate that they realise the autistic person is more than just their autism suggests to we might otherwise assume autism could exist by itself or be part of an entity that was not a person.

Reply
Frauke
13/1/2015 01:59:52 am

As a parent I was constantly ‘drilled’ to say I have a child with autism rather than an autistic child, yet it always felt cumbersome to say it that way. Your blog was spot on, and I’ve been retraining myself!

Reply
Flo link
27/1/2015 08:49:33 am

Language is a huge influence in our perception, and is a tool which deserves to be treated with respect for that reason. It is very useful to hear what is and isn't preferable from an autistic person herself - thank you Caroline for clarifying something I wasn't sure of until now.

As an aside, 'neurotypical' is a new term to me, I take it to mean non-autistic person, is this correct? If the point is that labels can be harmful I have to wonder why we need it at all. In my mind, all of these terms create distance when we should be less occupied with what makes us different, but with what connects us. Autistic or not, I am different from you, and yet we share so much more by virtue of being human. We just need to look for that more.

Reply
Caroline Hearst
28/1/2015 02:11:55 am

Thanks for your comment Flo, in answer to your question in the autism ccommunity neurotypical or NT is used as a synonym for non-autistic. Autism is a neurological atypicality – so technically there will be some non- autistics who are not neurotypical, but the term is used as a sort of shorthand.
I understand your point about labels - inappropriate labels can be harmful.

For many autistic people though, autism is much more than a label, it is an intrinsic part of identity, and understanding autism (which requires naming it) helps us understand ourselves and others. The mother of a 7 year old girl told me that her daughter’s diagnosis of autism “has done wonders to repair her self-esteem. She suddenly knew why she was different and has come to appreciate the good parts and learn strategies for the bad.” An adult wrote “I’m relieved to finally have an answer for why I am the way that I am”.

Reply
Peter
27/1/2015 09:05:51 am

I would probably be classed as a "high functioning person with mild autism", but that is a self diagnosis and I have had no formal diagnosis. When I did some autism training with Caroline Hearst, I found over 10 features where I had characteristics of autism. I have found it helpful and comforting to understand myself better.

However, I am never quite sure how to describe myself to others. If I said I was "autistic", I think many people would not believe me or would make wild assumptions about what that meant about me. I could say I was "a high functioning self diagnosed mildly autistic person" but that would be very ponderous. Maybe "mildly autistic" would be a reasonable compromise!

The problem is here that there is an autistic spectrum, but also an NT spectrum, and of course NT and AS are parts of the spectrum of humanity. We do need terms to help describe people's characteristics but these terms have to be: a) simple to say, b) convey useful information, c) not be open to misinterpretation (i.e. not lead to unwarranted assumptions in the mind of those who hear them), and d) not be perjorative.

I agree with Caroline's aim but I think it will take time for the term "autistic" to lose its stigma. For the time being, I will probably end up saying that "I have some characteristics of autism".

Reply
Caroline Hearst
28/1/2015 02:15:11 am

I guess change will not happen by itself, it needs a driver. And as an autistic person who feels that I have benefitted tremendously from understanding autism, and would have benefited even more if I had this understanding earlier in my life I am motivated to help drive a change to create a society where people are respected for who they are, and differences including neuro-diversity are understood and celebrated.

I believe one way to help dissolve the stigma of autism is for happy, self-accepting autistics to “come out”. I admit I found it difficult at first to tell people I am autistic, because I felt empathy for their embarrassment and awkwardness (sometimes they had assumed I was non-autistic when I told them I was an autism trainer and made negative comments about autism). With experience I have found if I treat this as a perfectly normal neutral piece of information it is accepted as such.

Reply
Caroline Hearst
6/2/2015 10:24:06 pm

I have thought a bit more about this and would like to echo the words of Kabie Brook of ARGH (Autistic Rights Group Highland) who says in the current issue of the NAS membership magazine "Your Autism" "I would never suggest that people should feel any pressure or resonsibility to disclose their status if this may harm them" I would add to this, to describe themselves in ways they feel unfortable with. I think change is slow and what we feel is appropriate will change over time.

Reply
Rosemary
2/2/2015 12:16:22 pm

Our adult family member is fast repairing her self esteem,socialising with otherswho say as she does, "I am autistic". Before the diagnosis, she had been abused. Now she is learning strategies ,eg to understand body language. It was valuable for me to know how she felt when breakfast , catching the bus etc were whirling round her mind.

Reply
Kris
19/5/2015 09:26:16 am

If I am Autistic, I do not have diagnosis. My wife believes I am. When I actually asked that to my Psychologist, he asked me back "what difference would that make. It would not change anything." I don't know if he is right, but I do know that my work would probably view me differently (not necessary better or worse, but different).
My son has autism. He was diagnosed with Asperger's when he was 6. I see autism as a characteristic, not being. My son is a boy with brown eyes, dirty blond hair, and mild autism. I love him dearly.

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