Do words matter?

I have been writing “A blog about Raising My Autistic Son” for just over a year during which time I have discovered that the title of my blog offends some people.

Someone said they hated it when people used the term autistic to describe their child.

People have suggested that  by using “my autistic son” I am putting his disability before him, making it the main thing about who he is.  I’m failing to use person first langauge.

I was blissfully unaware of the controversy surrounding my use of the term ‘autistic’ to describe my son when I started blogging. Had I known I may have chosen a different title for my blog; I’m not after all trying to cause offence or be disrespectful.  However you have to admit that  “A blog about Raising my son who has autism” is an even less catchy title than the one I plumped for. It was Edward, my teenage autistic son, who chose the name for my blog as he was unhappy with all the name suggestions I had conjured up.

(If you are interested to know about the names he rejected you can read about them here.)

I’ve been trying to figure out why people are so upset by me referring to Edward as “my autistic son”.

I think it comes down to how you view autism and to a large extent how you view autism will depend on how it is affecting the person you know who has it.

Edward does not have any additional learning difficulties, he can communicate using speech and language and he’s generally good company. I know that I’m totally biased but in my opinion he is intelligent, smart, inquisitive, confident, knowledgable as well as being an absolute stickler for rules and routines.  He could win first prize in any pedantry contest hands down. He also has autism.  He cannot separate who he is from his autism and if he tries to imagine a version of himself without autism he can’t because autism is very much part and parcel of his identity. He doesn’t view his autism negatively or positively but rather as something which has given him a particular set of strengths as well as challenges.

If it were possible for him to trade his strengths for his challenges he would not even consider it for a moment.

If there was a cure for autism he would not take it because he would become a less interesting version of who he is now.

This is not to minimise the challenges and the difficulties he has in understanding and navigating social situations nor does it diminish the problems he has had with sensory processing. I have not forgotten all the times when he became stressed and agitated over things that wouldn’t have bothered his peers and siblings, even if they had noticed them. However his strengths exist because his brain is wired the autistic way which for him means that he has the ability to get deeply interested in a particular topic and he can analyse and remember information in a way that most people can only dream of being able to.

I’ve come to the conclusion that the label autistic is only offensive if “autistic” is viewed in an entirley negative way.  Our experience of autism means that we don’t view it like this.

In his ground breaking book, ‘NeuroTribes’, Steve Silberman refers to an autistic man called Jim Sinclair who was involved in the launch of the first autistic run organisation in history,  Autism Network International. Members started to refer to themselves as Autistic in the 1990s instead of saying that they were people with autism. Silberman quotes Sinclair as follows, “Saying ‘person with autism’ suggests that autism is something bad – so bad that it isn’t even consistent with being a person. We talk about left-handed people, not ‘people with left handedness’, and about athletic or musical people, not about ‘people with athleticism’ or ‘people with musicality’.. It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person’.

Whilst many adults like Sinclair would say “I’m autistic” rather than  “I have autism” I’m also aware that some adults would prefer to say “I have autism” rather than “I’m autistic”. To be honest I don’t really mind which term people use  and I think I use both interchangeably in my blog posts (including this one – did you spot  them?) as well as the more all-encompassing and less controversial term, “on the autistic spectrum”. If I know someone prefers not to be referred to as autistic but rather as someone with autism I’ll do my best to use the language that makes them feel comfortable. Likewise I hope that people in the ‘person with autism’ camp can understand and respect my decision to use the label, ‘autistic’.

Nick and I will continue to view Edward’s autism as a celebrated and integral part of who he is and not some dark pathological shadow hovering over his identity.

He is our wonderful and much-loved autistic son.

reference:

NeuroTribes – The Legacy of autism and How to Think Smarter about People who Think Differently, Steve Silberman. 2015. (Chapter 11 – In Autistic Space)

Mother of Teenagers

Spectrum Sunday
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