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Being Autistic vs. Having Autism

Have you ever had someone try to explain something to you when you know full well that you are more of an expert on the subject than they are?


It can be really annoying; even if the person’s intentions were good.


Now since I started writing for the autism awareness blog where I work there has been a slow but steady increase in the number of people who know of me by name (in terms of being autistic). I have also given a few ‘presentations’ about autism awareness and understanding in the workplace, and was humbled by being shortlisted for a Diverse Cumbria Award in May this year; both of these have increased the number of people who now know me by sight and know of my association with autism.


This is still increasing still since the start of this public blog, however there are still a lot of people who don’t know who I am (which is great, don’t misunderstand and think I’m complaining), and who don’t even suspect that I am autistic.


This allows me to have a little fun every now and then, with a game I like to call ‘make the neurotypical person squirm’.


The most recent incident occurred back in April when I found myself in a conversation with a couple of people who seemed to know each other but who had never met me. It was one of those random workplace small talk conversations that I hate, but then the fact that it was Autism Awareness month came up. For context, at the start of the month there had been an internal communications brief about it being Autism Awareness month, including information about the Site Autism Support Network (SASN).


Now either these two people had missed the brief or had just not taken it in fully, because both were wondering aloud why our employer wanted to acknowledge Autism Awareness month when it didn’t impact the workforce.


I didn’t get on my soapbox, but I did feel the need to correct them, so I pointed out that aside from there being many parents of autistic children in the workforce, there were also plenty of autistic adults working here who would benefit from more awareness and understanding in the workplace.


That’s when it happened.


They looked aghast and told me in a poor imitation of a stage whisper that “you can’t call them that”. They correctly read the confusion on my face and went on to explain to me that you have to use people-first language when talking about people with disabilities.


Now I don’t disagree with this in principle; a blind person is more than their lack of sight, and should be referred to as ‘a person who is blind’ (unless you actually know their name, in which case calling them ‘a person who is blind’ is just weird). And I believe that this holds true for other aspects of a person, be it race, religion, or sexuality; they are a person first and shouldn’t be defined by a single aspect.


But for me, autism isn’t a single aspect. Autism is a neurological condition; it is pervasive and affects every single aspect of my existence; from how I interact with others to how I like my dilute juice. There is no me without autism. You cannot remove autism from me; I literally wouldn’t be the same person without it.

You might have noticed that I tend to I refer to myself as being autistic.


So for me personally, when it comes to talking about autism, I do tend to refer to people as being autistic; unless they ask me to do otherwise for them as an individual. If they asked me to refer to them as a lampshade I’d do that too, because I believe that once a person tells you how they like to be referred to it’s just plain human decency and respect to use that term.


I tried to explain this to the people I was in conversation with without letting them know that I am autistic. I wanted to try to get them to see the point I was making about maybe letting the actual person decide how they would like to be referred to and respecting that choice, rather than trying to enforce a ‘politically correct’ term on them.


They weren’t having it. They argued that it always had to be person-first language in order to be politically correct, and that anyone it impacted would obviously feel the same way.


That’s when I decided to make them squirm a little. They had set it up so perfectly, it was low hanging fruit and I just couldn’t resist.


I told them that I am autistic, and that I find hearing people refer to me as ‘having autism’ is almost insulting and shows a lack of understanding.


I still smile when I remember the looks on their faces.


And as tempting as it was to walk away from the conversation after that mic drop moment, I couldn’t bring myself to be that cruel. So I elaborated; I said that it was my preferred way of being referred to, but that others might prefer ‘person with autism’; I suggested treating it like you would a person’s preferred pronoun when it comes to gender.


Ask the individual, and each individual, what language they would prefer you to use when talking about their gender/sexuality/disability/etc.


Obviously there are some words and terms that are just plain offensive and insulting, but shouldn’t it really be up to each individual how they would like to be referred?


#autismawareness #autisticadultinthewild

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