Since I’ve become public about my autism diagnosis, I’ve had A LOT of people ask me if I’d recommend diagnosis for them or a loved one. My initial response to this is—how can I possibly know if that would be beneficial? But my second response is to say, this is a good question and all I can offer is my own experience. I went to get a diagnosis for two reasons. 1) I hoped it would save my marriage. 2) I hoped it would help others I knew who I believed were autistic to see that the diagnosis wasn’t anything to fear. These were both total disasters.
What diagnosis gave me was simply knowledge of myself. Especially the first year, but continuing into the present, I would have constant “ah-ha” moments where I understood what had been going on behind the scenes my entire life. I don’t know if anyone can understand what it is like to NOT understand yourself for almost fifty years, and then suddenly to see who you are. It had been there all along, all the pieces and I never got it.
I thought I was “normal.” I tried so hard to be neurotypical because that’s what you’re supposed to be. I was so afraid that I would lose all respect for myself if I couldn’t make myself be normal, and honestly, that was a realistic fear because what happened in addition to understanding myself after my diagnosis was a loss of my pride in who I was. All my accomplishments are linked to my autism, as well, and somehow that made them less valuable. I’m still working my through this reality, and that is part of the reason I don’t necessarily leap to telling people they should get diagnosed or get a loved one diagnosed. I say that the gift of the diagnosis was knowing who I was but the consequence of the diagnosis was also losing who I had always been before.
I thought going to autism therapy would “fix” my problems. I thought it would help me understand how to read faces or pick up subtle cues or understand body language. I thought it would fix the broken relationships that were all over the place in my life. I thought it would help me be more normal, so I could be even better at everything. I thought it would be part of my quest to conquer the world.
What happened instead was that my therapist listened to me describe problems socially and ended up saying that I had already done behavioral therapy ABA stuff on myself for years as a child, teen, and then adult. I had taught myself how to read faces as well as I was going to be able to. I’d taught myself scripts to use in just about every situation. It was just that there were limits to these kinds of things. That is to say, I was always going to be autistic. I was never going to be able to interact with the world in a neurotypical way. I could only mimic it, which was what I’d already been doing. And it had always made me angry, and it has just made me more angry as I’ve understood myself and the world better.
Getting a diagnosis is life-changing. I suppose I have a certain privilege because I am able to hold up a piece of paper that says, I am officially autistic. But this is of dubious value when half the people you tell this to immediately respond with, well, everyone is getting diagnoses with that and I don’t believe it. Or, your therapist was probably just giving you what you wanted. That is, a diagnosis doesn’t convince anyone of anything. You still have to have long, embarrassing conversations to try to prove to people that you are autistic. And then what? Some people are great and listen. But a lot of people then go on to say great, now you can learn to be normal.
No, that is not what diagnosis does. It isn’t what being autistic is about. I don’t want pity. I want people to be willing to spend a few minutes seeing the world from an autistic perspective without pity or any attempts at curing or fixing me. I want to be, well, witnessed as I am. I want to learn how to see myself and love myself as autistic. And someday, I hope others can do the same.
Lanita Grice, I haven't responded to every comment but thank you so much! You are on fire with your responses here and make me feel very seen.
Perhaps because I gave up long ago hoping that people would accept me and see me as I am, I find identifying as autistic to be freeing. It explains so much about how other people react to me being myself and assures me that I am not the whole problem. But I do get that you are angry. I'm angry too -- but not because I'm not "normal" -- I never thought I was. I'm angry because the world is designed for only a select number to succeed, and for the rest to struggle. Perhaps some day, there will be true equity for all so that no one will ever again have to accept the label "disabled' -- because there will be room in society to accomodate her support needs. It infuriates me that every time we take a step or two in the direction of equity for a portion of society that has been marginalized, some group of "normals" tries to makes society regress.