Diagnosing Autism, Part 4: Self-Identification, Self-Diagnosis, and the Autistic Community
You might want to jump back to Part 1, 2, and 3 to get a little background.
A lot of medical professionals are skeptical of the self-identified/self-diagnosed autistic person. But the autistic community is not.
The What?
Yes, the autistic community.
I'm consistently surprised at how many professionals and experts on autism don't know that there's an autistic community. (Though the fact that I'm forever surprised probably means that I should accept it as fact. But I'm not ready for that level of pessimism quite yet. So I live in hope.) The autistic community exists similarly to the Deaf community. It's a unique socio-linguistic group that shares a common sensory experience and neurology.
The funny thing about the autistic community is how effortlessly it exists. For the most part, there's a common set of social norms, connections, and relationships. Even among its' disagreements and factions, there is a common cultural thread.
And the autistic community is a force to be reckoned with. As autistic people gain access to each other and make these connections, advocacy groups have been created. The autistic community is beginning to define itself, resisting the definitions of outsiders.
The Self-Diagnosed
In its self-definition, the process of self-diagnosis is accepted by most autistic people within the community, much to the consternation of the medical community. To understand this radical inclusion, you have to understand the barriers to medical diagnosis.
As discussed previously (here, here, and here), the medical model of autism is entirely deficit-based and requires a certain amount of visible dysfunction. But there are a lot of people with autistic traits who make it in the world with very little support for long periods of time. Some learn to fake neurotypicality in public. Some are misdiagnosed with other conditions. And some are just overlooked.
Being an overlooked autistic person is largely a function of being part of another minority or under-represented group. The typical image of an autistic person is a young, white male. So if you are anything other than that image, you are less likely to be diagnosed as autistic.
Knowing all of this and embracing the complexity of autism and its many presentations, the autistic community has leaned in the direction of radical acceptance. Within that community, self-diagnosis is valid, meaningful, and accepted as equivalent to, not less than, a formal medical diagnosis.
What Does This Mean For Medical Diagnosticians?
I'm not delusional (enough) to believe that this changes anything in the medical community. Or at least not right now. But there is a reckoning coming. Because there is only so much this community can tolerate before it begins to forcefully rebel against the deficit-based model. And it's already starting. Autistic parents of autistic children are starting to push back against the way the medical community views them and their children. And that progression is going to be something to see.