Still we need to say it. Again and again we need to say it. Over and over we have to say it. It’s something that should not be. It should not be that how one chooses to identify oneself, has to be justified, has to be explained, and to those who claim to be allies, supporters, friends, therapists and doctors. It’s just not Okay to take what I call myself and tell me it’s wrong, it’s offensive and I need to change it. Autistic is not just a word it’s an identity.
I have written about this issue before Identity First Please and Language Matters. I feel somewhat like it’s a case of me ranting on again about my pet issue. That’s true to an extent, I suppose. It is. However, it is the reality that to make change the message has to be repeated again and again. It’s truly unfortunate but it seems the case that this is an issue that falls into this category.
I am autistic. I do not have autism, I am not with autism, I am not suffering with autism, I am not those things I am autistic. Proudly so. When I hear the phrase “person with autism” I imagine someone carrying around a bag with autism in it. When I hear “a person who has autism” I imagine someone holding something in their hand like it’s a possession. When I hear “struggling with autism” I imagine someone walking around with a giant ball and chain attached to their ankle.
I am autistic. It is a defining integral aspect of my identity. Everything I do, I do as an autistic. Everything I think I think as an autistic. Everything I feel I feel as an autistic. It is a pervasive part of me. It can not be separated from me. I do not have it, I am not with it, it is me. Not all of me, but yes me. Me Autistic me. Autistic, autistic father, autistic Christian, autistic thinker, autistic runner, autistic writer. Everything I am is an autistic thing.
The thing is that autistics generally have chosen to identify as autistic, rather than as person with/has autism. It is not autistics generally that are advocating to not use this language. It is the helping professionals, the parents and siblings, the therapists, the disability rights movement. The thing is this is a problem because on the one hand these people claim to support and help, but on the other hand sideline and silence the voice declaring the preference of the autistic moniker. This is a problem. A huge one. How can it be that it’s okay to not listen to the declarations of the people you supposedly help and are allies of.
Yes I do go on about this. I know. But I believe it is important and essential. I long for a time where autism professionals, autistic allies and autistics can all listen respectfully to each other. That all the voices can be heard, a conversation occur and that autistic self-determination can be real and not need to be a fight.
It must be faced by we autistics, that, families, parents, therapists, etc, are generally speaking wanting the best for us. It must also be faced by families, parents, therapists etc, that, autistics have a lived experience insight into their reality, that is unequalled, special and must have primacy in the determination of life choices for autistics.
All the perspectives can go into the mix. The lived experience of the autistic can be informed by the professional experience of the therapists, the love expressed by families and allies, and of course the insight of parents. It goes without saying that these inputs are important and valuable, however, they will never be respected as long as the autistic voice, the lived experience of the autistics is discounted, sidelined and minimised.
It is possible and vital that the autism and autistic communities work together to seek the very best outcomes in all aspects of life for autistic people. I believe that an important first step that the autism communities can take is to respect the choice of the autistic community and give honour to the use of identity first language.
By referring to us as autistic. To call us autistic, to describe us as autistic are in fact things that go a long way in communicating that you do indeed respect us, respect our voice, respect our wishes and truly seek the best possible life we can have.
Person with autism is justified at times with the statement that the person must be seen first. I get where this is coming from, but, in reality if it requires language use to see me as a person then I am not being seen as a person at all.
I am a proud autistic, please respect my choice to identify as such.