I am a member of the Disability Leadership Institute, which is an excellent organisation. I attend a regular Zoom meeting of the group which always generates interesting discussion. Yesterday we were talking about the issue of people’s disability being used to define their identity. Others in the group – who are not autistic – said that it was quite fraught to identify someone according to their disability but I had a different approach. I said that autism actually does define me to a large extent and that this is the experience of many other autistics. Many of us see our autism as an integral part of what makes us who we are.
There is a famous debate around person first and identity first in autism. Do I say ‘I am a person with autism’ or ‘I have autism’ or do I say ‘I am Autistic’? And what does each option mean? I use identity first language (‘I am Autistic’) because I see autism as being a major part of who I am. If I was a person with autism I would presumably be able to put my autism outside the door and collect it on my way out! Most other diversity groups use identity first language to describe themselves. Someone is transgender, not a ‘person with transgender’. Similarly someone is not a ‘person with gay’. The same goes for cultural groups. And to an autistic person their autistic identity is likely to be a deeply held thing and important to their sense of who they are.
Some autistic people do use person first language though, for a number of reasons. While some in the autistic advocacy community think that is a bad thing and that everyone should use identity first language, I tend to think that the way someone chooses to identity is correct for them. I don’t like people telling me that I should identify as a person with autism though. This happens a lot and usually from well-intentioned people with little exposure to the autistic community. There are few things more infuriating than someone telling me how I should identify myself! When people do this to me they usually get a bit of a lecture which hopefully means they don’t do the same thing to someone else.
All this is bound up in discussions around disability. Is autism a disability? Many would argue that it isn’t. For me I view autism as a disability through the lens of the social model of disability. This means that we are disabled by the attitudes and acts of others. While this isn’t true for everyone, I do not feel particularly disabled by my autism itself but the attitudes of others are very disabling. However I am aware that there are others who see this differently. There are also identity considerations around disability. Some people use ‘Disabled person’ (note the capital D) and others use ‘person with disability’. These are often used interchangeably,
I feel that positive autistic identity is part of autistic pride and as such is a political thing. Autistic people are oppressed and anything which gives us a sense of pride is something of an act of rebellion. It took me many years to get to the place of pride I currently occupy. I was in denial about my autism for seven years and even when I did accept my autism I was pretty doubtful and ashamed about the whole thing. It took me writing my autobiography in 2005 and its subsequent publication to embrace my autistic identity and feel a sense of pride. I am now very much out loud and proud. I see autism as a key part of what makes me who I am and I like and value my autistic identity.