It’s a pretty harsh world out there for late-identified autistics. You’re trapped in a no-win scenario.
If you self-identify as autistic, you have to deal with friends, family, doctors, and mental health providers questioning the validity of your self assessment. You have to find all of the autistic information on your own and construct your own strategies and systems of support.
If you choose to go for an official diagnosis, you walk a trepidatious path as well. You first have to hope your assessor is educated enough about autism in adults, as well as what it looks like in people who have been masking their whole lives. You then have to wait months, sometimes years to get assessed. Even if you are able to access a neurodivergent assessor, you still may be shoved into the medical model (which is what happened to me and you can read about in my essay No Autistic Should Receive a Diagnosis Letter Like Mine).
Even if you get diagnosed, you still have to deal with dismissive friends, family, doctors, and mental health providers. You still have to find your own support systems and strategies.
There’s no smooth system either way. I know because I’ve walked both paths. I was originally self-identified and was happy to remain in that category. I felt the medical model of autism is flawed and I didn’t want to buy into the system by paying for a diagnosis I didn’t even need.
However, I eventually decided to pursue an official diagnosis because I was considering returning to school for a PhD. I knew I would want accommodations and that meant I would need a diagnosis letter.
So now I have the lived experience of operating as self-identified and then as diagnosed.
The paths aren’t that different. I’d say though that self-identified autistics have to deal with far more critical, questioning people. You have to have far greater self-trust in the face of poorly educated professionals and ignorant people.
Most self-identified autistics know FAR MORE about autism than your average mental health or medical provider (see my essay Autistics Deserve Better From the Mental Health Field). You’ve taken the time to do the research and self-educate on a topic that is deeply personal to you.
So as a diagnosed autistic to my fellow self-identified autistics, I say keep on. Keep trusting yourself. Keep doing the things you need to do to support yourself and structure your life in a way that nourishes you.
In that effort, here are my essays about self-identification. May they uplift you as you walk in the face of poorly informed people and institutions.