Today I had a particularly unpleasant exchange on Facebook with a  woman who said my use of the term ‘autistics’ was ableist. I responded by saying that many autistic people us the term Autistics to describe our culture, our tribe. Unfortunately it got less pleasant and blocking  wasn involved.… Anyway, the upshot of this is that it is another chapter in the thread of my life involving  difficult interactions with people autism and identity.

Apart from the feeling of being attacked, my issue with the exchange today was the concept of someone who isn’t me telling me how I should identify and how I should described my tribe.

Telling people how they should identify is sadly quite common. To my mind it is on the list of Highly Uncool Things to Say To An Autistic Person. The most common issues is around ‘person first’ versus ‘identity first’ language. Person first means saying ‘person with autism’ and identity first is saying ‘I am autistic / Autistic’.  Autistic people choose to identify in a number of ways. In my mind, however a person chooses to identify themselves is correct. A person’s identity is their own. It is nobody’s right to tell another person how they should see and describe themselves. If I want to use identity first language and you want to use person first, I do not have the right to tell you that how  you choose to identify is ‘wrong.’

In my own experience, my Autistic identity is a hard won thing, so people telling me how to or how not to identity  goes deeper than the simple irritation of it. I feel as though they are questioning my right to be who I am. After spending so many years ‘acting’ and fitting in with different, often harmful groups in order to feel like I ‘belonged’ socially because i hated myself so much. I don’t particularly appreciate being told my identity is ‘wrong’ and I should instead identify how they think I should.

It is like someone saying ‘I don’t think you should be called Jeanette. You should call yourself Brenda.’ It is offensive and ableist and just plain rude to tell an Autistic person how to view their own identity, or anyone from any other group. The only person who should get to decide on how they define themselves is the person themselves.  I honestly can’t understand why anyone would question this.

Oddly enough, in my experience, some of the people that have the most difficulty understanding the need of identity to be defined by the person it relates to are people who care about inclusivity. They often find ‘I am Autistic’ challenging because they were taught about being inclusive and not ‘defining people by their disability’. I have had many conversations in this vein – with varying degrees of agreement and resolution. I would say to people in that situation  – and everyone – to be guided by the persons; own description of their identity even if you don’t like it. It is their ‘them’ not anyone else’s.

I think for me, the main reason I say ‘I am Autistic’ is that autism is an integral part of my character and my being. It would be as difficult to seperate my autism from who I am as separating my love for cats or my creativity. It isn’t even that ‘Jeanette without autism’ would be a different me. She would simply not be me but a seperate person. I have fought for years against ableism and bullying and discrimination and self-hatred and insecurity to become the proud Autistic woman I am today. So please don’t tell me how to identify. It’s my identity, my name, my me.