From Self-Diagnosis to Self-Realization

Autistic people own the right to define who we are.

A person with their back to the camera, standing atop a cliff overlooking a beautiful, wild landscape. Their arms are raised in triumph. Photo by Jake Ingle on Unsplash

In spaces for Autistic adults, the topic of self-diagnosis can sometimes create a bit of controversy. People tend to fall under one of two camps: either you believe that a person must have a formal assessment and diagnosis of Autism in order to say they’re Autistic, or you support a person’s right to self-diagnose.

That first position looks very respectable to allistic (non-Autistic) society. When Autistic people submit to the diagnostic rules and categories that were created by allistic people, we are being well-behaved, predictable, and obedient. We are letting outsiders define us. When we do this, we’re admitting that neurotypical people know us better than we know ourselves. Sometimes formally diagnosed Autistic people will even lash out and question the legitimacy of self-diagnosed Autistics, helping to maintain and enforce a status quo that allistic people created for us.

Then there’s the latter camp, the one that accepts self-diagnosed Autistic people. This camp is growing in size every day, just as the number of self-diagnosed Autistic people continues to expand. However, many people who support self-diagnosis do so in a tentative, apologetic way. They’ll talk about how difficult it is for some people to get access to an official assessment. They’ll concede that if you don’t have medical insurance, you can self-diagnose, but that you really should seek out an assessment if you ever get the chance. The root assumption of many people — even the ones who support self-diagnosis — is that formal diagnosis is superior.

And many self-diagnosed Autistic people are very apologetic about their status. They’ll say that they “think” they “might be” Autistic. They’ll ask if they have a right to be in the support group, or to occupy the meeting space. And they’ll explain, nervously, that they’ve read every diagnostic test they could get their hands on, and they asked all their loved ones to fill them out, too, and each one of them came up positive, so they’re pretty sure that if they could get diagnosed, they would be, but they can’t yet. Many of them aspire to one day get assessed, so that they can finally validate what years of self-knowledge has told them.