Don’t let autism define you

I have witnessed many people say that autism shouldn’t define us. I think it’s up to us to decide what defines us. Here’s my own take on this. Autism does not define me but being Autistic certainly does.

Autism is a medical condition created to explain human differences without any real investigation into those differences. I am certainly not defined by that. However I am Autistic and that means I have Autistic neurology. That means that everything I do is pretty much Autistic. How I interact with the world is Autistic. The way I sense the world is Autistic. My thinking is Autistic and my emotional responses are Autistic. My learning is Autistic.

I also communicate Autistically. I am sensitive to the world in an Autistic way. How could being Autistic not define me? It makes me who I am.

This image shows a person's neurology. We are defined by our neurology so being autistic defines us

What I hear when people say “don’t let autism define you”…

Often people will argue with me and say “Don’t let autism define you, you are a person first.” When people say this they give away more of their own bias and attitude than I think they realise. Here’s what I hear when people tell me this:

  1. If they’re telling me I’m a person first and not an Autistic then they must think that Autistics aren’t people. An Autistic is a person. Saying I shouldn’t call myself Autistic but a person with autism is telling me that they don’t see Autistics as people in our own right.
  2. Telling me that my neurology doesn’t define me is saying that how I sense, feel and think doesn’t define me.
  3. When I tell people I’m a woman they don’t respond by saying “Don’t let that define you, you are a person first and then a woman”. They say this because they recognise that a woman is a person. (Unlike an Autistic being a person). And they also say this because they see being Autistic as a negative thing. If I say I’m a mom or that I’m self-employed, people don’t react with concern and tell me that those things don’t define me and that I am a person first. Why? Because they see those identities as acceptable but they do not see being Autistic in the same light, unfortunately.
  4. They are defining autism as a huge negative . They are looking at autism through that very narrow and negative medical lens. Of course I’m not defined by deficits. Those deficits don’t exist in the first place. Also autism defines people by what they are not, or perceived not to be, rather than who we are. Often they are talking about their own perception of autism.
  5. When people say “you are a person first” they are often unknowingly saying that non-autistic people are people and then there are people with a terrible thing called autism. I am not a non-autistic person with autism. I am an Autistic person.

Autism and being Autistic are not the same thing.

I wouldn’t talk about autism at all except then other people wouldn’t know what I was talking about! Instead I focus more on what it means to be Autistic.

When people tell me that autism doesn’t define me they often mean “don’t let autism limit you”. But then that’s because they perceive the Autistic way of being as something that limits someone rather than what it actually is.

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