August 17, 2015

Optimized-autismThe language of autism is an extremely complex one. For example, does my son ‘have autism‘, or is he ‘autistic‘? What is the correct answer?

Is there a correct answer?

Well, to be honest I don’t think that it does matter, but there are many people out there with a strong opinion on which one should be used. From my own experiences, I have found that when chatting to parents they prefer ‘with autism‘ while individuals on the spectrum prefer ‘autistic‘.

My interest in this use of language debate, was sparked by the findings of a recent National Autistic Society (NAS) survey: New research into how people describe autism published‘.

The research carried out by the NAS, the Royal College of GPs and the UCL Institute of Education looked at the preferences of people on the autism spectrum, their families, friends and professionals.

3,470 individuals responded to the survey. 502 of whom were autistic adults and 2,207 were parents of children/adult children who are on the autism spectrum.

The results not surprisingly found no single preferred term. However, some preferred terms were consistently found. They included; ‘on the autism spectrum’, with autistic adults preferring identity first language such as ‘autistic‘ and ‘Aspie‘. An abstract of the research can be read here.

I have to admit to preferring the term ‘autistic‘, I have an autistic son. I do not find this term offensive. However many other parents do, as I have found out when writing for Autism Daily Newscast. Many parents have asked that I use the term ‘with autism‘ rather than ‘autistic‘, as they feel that they are ‘labeling‘ their child. I do not see it in that way. No matter if you say ‘autistic‘ or ‘with autism‘, or even ‘on the spectrum‘, ultimately they all mean the same thing, well they do to me anyway.

But how we use language to describe autism is extremely personal and emotive. I also know that many people I meet, when talking about my son, stray away from using the word ‘autistic‘ and many have added the word, ‘sorry‘ as in, ‘I am so sorry he is autistic‘. Maybe this is the root of the problem. That the word autistic is seen as a definition, that the child is autistic and therefore that is what defines them. They are not anything else, as it consumes them. I don’t see it that way. Yes, ‘autistic‘ defines my son’s disability (again another discussion- is it a disability or a different ability?) but that is all. He is so much more than autism, as is anyone with any disability. That is I feel why many prefer the term ‘with autism‘, it sounds gentler, less intrusive, but I prefer ‘autistic‘. My son does not live ‘with’ autism, it is part of him, intertwined into his very being.

But I digress. How an individual wishes to be defined should be left up to the individual. Sometimes I feel that we can over obsess about such issues. At the end of the day, does it really matter what language we use to describe being on the spectrum, as long as the individual in question is treated with respect and dignity? Probably not.

A version of this article originally appeared in the print edition of the Lancaster Guardian.

Originally posted on the Huffington Post Uk website.

Editor’s Note: From our Editorial Policy – In an effort to be respectful to all, Autism Daily Newscast alternates between the use of the terms “autistic”, “person with autism” and “individual with an ASD”. Our preference is to use Identity First Language as “autistic” however we defer to the individual person on how they prefer to be identified. With regards to children, we tend to alternate.

About the author 

Jo Worgan

Jo Worgan is a published author, writer and blogger. She has a degree in English Literature. She writes about life with her youngest son who is on the autistic spectrum. Jo tweets (@mummyworgan) and is also a freelance columnist for the Lancaster Guardian. ‘My Life with Tom, Living With Autism‘ is her second book and a culmination of her blog posts, and available on Kindle now, along with her first book, Life on the Spectrum. The Preschool years.

  • Show me the people who have been harmed by either usage. Show me the data from the studies that show one usage is better than the other. I have yet to seen this from people who insist on person first usage. Until then, I remain indifferent to the suggestion, which by the way, is rude since it is only based on style and mere assertion. If I am going to rudely suggest people change their style, I need proof that it is or is not better or harmful. Until then, I don’t need to add made up problems to the pile of autism.

  • Good comment from Lenny there. The problem with parents is that they have a concept of how their child “should have been”, going to uni, lots of friends, getting a glam job etc. So their autistic child is perceived as “having” something “wrong” with them. Well actually in most cases they have mercury poisoning from non-gamma-2 dental amalgams wrong with them. So they’re not entirely mistaken. Except in many cases it’s just “too many” genes for high IQ which is what’s “wrong”, in which case that is simply their very genotype, the exact who they are anyway.
    The person-first teminology is actually the most offensive, because you’d never hear about “persons with degrees” or “persons with professorships”. It’s only ever “persons with [something by implication bad that a surgeon can hopefully chop off someday]”.
    The bottom line is that that terminology is utterly false in scientific terms. No-one has ever shown any way of objectively dividing people into those “with” and those “without” autism. There IS no such distinction. The adjective autistic is the only defensible terminology. Autism is complicated enough to explain to people without adding to the difficulty by using false, utterly false language of being “with” or “having” or “on the spectrum”.

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