Every now and then I see a conversation in which someone (usually not autistic, but occasionally autistic) says that self diagnosis of autism is not okay. I’ve never dived into the conversation publicly before, because it’s a tough one to have and, to be honest, it’s exhausting defending yourself to people who’ve already made up their mind and don’t want to listen. But I do have some pretty strong thoughts about this, and I’m going to share them here.
There are a few things about self identification that I suspect a lot of people don’t realise.
It’s actually really scary to self identify. Coming out as autistic is a big thing. Autistic people are often treated poorly in our society and intentionally choosing to experience that without the back up of the societally expected approval by a professional is not easy and not something that self identified autistics take lightly or jump into on a whim. I have seen people go through this process, I have supported people to go through this process, I have gone through this process myself. It is harder than you can probably imagine and I have never seen it done without much intense deliberation.
The people I know who are self identified autistic took a long time to be confident in their conclusion. They researched, they read, they talked to people, they thought about it so much they felt overwhelmed, they stressed, they denied, they went back to the start and did it all again….. until they had to admit to themselves that there was no other option than to conclude they are autistic. And then they had to go through the process of telling other people, knowing that they would be criticised for it. You don’t go through that unless you are sure.
So, I have no problem with self identification of autism. I know many professionally diagnosed autistic people who also have no problem with it. The wider autistic community itself is overwhelmingly accepting of self identification. The autistic communities I am part of have been unquestioningly accepting of me and unwavering in their support of me both as I explored the possibility of being autistic and as I gained confidence to claim the identity as my own. I won’t attempt to speak for all of us, but I would like to share my personal reasons for avoiding a professional diagnosis.
Reason 1: The diagnostic process is expensive. For many adults it is unattainable financially with no benefit unless they intend to apply for funding or disability support
Reason 2: The diagnostic process is flawed. The DSM diagnostic criteria for autism are no less subjective, once you consider who wrote them, who applies them to peoples lives and the context in which they are applied, than a well researched well thought through self identification is. They are also no more reliable or accurate.
Reason 3: The diagnostic process can be harmful. It requires a person to make themselves vulnerable to a stranger whose sole intent is to categorise you as a series of deficits and deficiencies- every professionally diagnosed autistic adult I know who went through that process says it was awful.
Reason 4: I am protecting myself. I am not prepared to subject myself to the scrutiny and subjective interpretation of my life by a non autistic “autism expert” for validation of what I know to be true and what has been confirmed to me multiple times from within the autistic community.
Reason 5: I am being defiant. I am opposed to the medicalisation of an entire communities way of being. There is nothing inherently wrong with being autistic. We are not broken or indeed of fixing. Our lives are not a series of imperfections. We are disabled, yes, but we are also a diverse, innovative, strong, and capable group of people, and we are more than capable of understanding ourselves without the need for validation and approval from non autistic “experts.” And for me personally, if I need an endorsement for my own peace of mind…. well, I would rather take the acceptance of the autistic community over the bureaucratic approval of a professional any day.
Now, I’m not saying it is wrong to seek a professional diagnosis. There are many reasons to do so. One common reason is the need for support in situations where the person or organisation who will provide the support requires a diagnosis. I am not criticising people who take this path. I’m just saying self identification is valid too, for as many reasons as people seek formal diagnosis. I love that the majority of the autistic community is so welcoming and inclusive of all autistic people, no matter how they came to identify as autistic.