The 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. http://m.aut.sagepub.com/content/early/2015/06/10/1362361315588200.full.pdf.
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.