It hurts that countless psychiatrists and other doctors never noticed my autism. They definitely noticed my crazy, my “flat affect,” that I hear voices and have huge moods. But I feel strongly that autism plus crazy is a whole other thing. The combination deeply affects what’s best for us with medication, therapy, and all the ways we move through the world.
I have a theory that many people who are called “severely, chronically mentally ill” as I have been, part of what’s making it hard to help us is that autism is a factor that’s being ignored. I look around at my friends and see autism where it’s undiagnosed–I have my suspicions!
It was a big deal for me to be told by a friend that autism manifests differently in women and non-binary people than in men. And it was a huge deal to admit to Ming the sensory differences that had been making my life very very difficult since childhood. He knew I wore my socks and underwear (and all the clothes I could) inside out. He saw my big social differences every day, and probably noticed my extreme preference for certain foods over others, but he didn’t know why.
To connect the dots and see how the differences were not necessarily just a quirk of who I am or part of my crazy is a big deal. Then I understood the stress of masking, and the way so much emotional pain results from denying who I am for the convenience of others. The world constantly telling me I’m wrong for who I am–my social differences, sensory needs, queerness, fatness, hearing voices–of course I would lose my mind. How could I not?
Ming has a long-time ocd diagnosis, but his ocd looks different from other peoples’. It’s not flicking light switches and oven knobs a certain number of times. There’s a lot of contamination fear, but it’s more extreme rigidity and rule-based functioning that doesn’t always make sense to an outside observer. But it takes a lot of time and energy.
Ming has told me over and over that he didn’t think it was ocd. A big reason is that ocd people know that what they’re doing makes no sense, but they can’t stop. Ming believes what he’s doing makes sense. He was kicked out of at least one ocd treatment program for being so different from the other clients.
Ming also has a learning disability diagnosis–it’s related to language processing. Super rigid about certain things in a rule-based way, plus language differences, and some sensory differences and social differences too… Hmm, does that sound like anything to you? Add the fact that Ming has a kid with autism, and has never been tested for it himself.
The gender thing is the real kicker. Ming is non-binary gender but doesn’t assert it forcefully. He’s considered male when he goes to the doctor–doctors are looking at him like he’s a man. But he’s not a man, so his autism is not showing up in the world as the cliches of a man’s autism. It’s showing up as non-binary autism. So that would make it extra missed.
My friend heard me complain that my autism is missed by every doctor I’ve ever seen. Of course I never properly presented with it as an issue. “Hello–everything about me is wrong. I have to compromise all of my needs, constantly. Can you help me, doctor?” is not a question I would have thought to ask.
I thought everything about me was wrong because I was Bad. I had to compromise all of my needs constantly because I was Wrong. When I was a kid, it never once occurred to me that my differences could be valid. I spent almost every waking moment of my life reading, writing, or trying to perform that I was ok when I wasn’t. That was life.
My friend asked how it would have been different if a doctor had noticed my autism, and what support I would have wanted then and now.
I told her that the autism changes everything with treatment. Sedating the fuck out of me for the convenience of others really wasn’t necessary. It would have been better to give me tools to understand what autism is, how masking is very stressful, help reducing stress, and support around the validity of my differences. Maybe occupational therapy to learn how to navigate sensory differences in a world that totally disrespects them. A therapist who knows autism would have helped a lot too.
I had to figure everything out on my own. Any help would have been wonderful. If I hadn’t had a non-binary autistic friend who talked to me about it, and if I wasn’t as good at googling and smart enough to put the pieces together, I never would have understood. Pretty sad how totally medically untrained, medically uneducated people can see what doctors are paid hundreds of thousands of dollars to see, but fail to see. Medicine is a joke.
One of the big differences in people who have autism plus crazy, rather than just crazy, is how therapy and groups work for us. Having big social differences means the discomfort of being around other people is amplified.
A regular crazy people might be afraid of other people because of social anxiety, general anxiety, paranoia, or being harmed by people in the past. An autism plus crazy person can have all of that too. But also a whole different way of seeing the world socially, all different ways of using language and understanding truth, different conversational rhythms, different sense of humor, differences in how we do and don’t feel safe to speak up, lack of practice talking in groups, lack of understand of what’s pertinent to discuss with allistic people…
my experience with DBT
An example of my difference in groups is when I tried to take a DBT class. DBT is a type of therapy that was developed for people with borderline, but I went to a clinic in Sacramento for a while where everyone was told to take DBT. I had a “bipolar 1 with psychotic features” diagnosis at the time.
So I was in this class, trying to be responsible and care for myself, but it was really painful for me. The light was horrible, the room had no windows, and the air didn’t feel right. I think there was a ventilation issue. The room was way too crowded, the teacher seemed mean, and she would not call me Laura-Marie. She said, “First names only,” with an angry tone. It was confusing how calling me Laura-Marie was too much to ask. Uh…what if my name is two names? Having my very name disrespected was a bad start.
The teacher would talk about her experiences with emotional regulation, but I couldn’t relate to anything she said. She was an angry white woman and had a totally different relationship to authority than I did. I remember a story she told about a negative interaction she had with a cop–I stared at her, mystified.
Still I tried to learn from the course materials. We were doing emotional regulation. I liked the mini-meditation we did. I liked the handouts and lists of strategies.
But there would be a joke in the class–everyone would laugh except for me. It felt really sad, I saw zero humor in what others found funny. Then I thought other things were hilarious that others didn’t find funny at all. I’d stifle my smile. Also I don’t watch movies or tv or follow current events, so cultural references were lost on me.
“Wow, am I really so weird?” I wondered. Everyone there was “severely, chronically mentally ill” like me. But still, I was too crazy to be among the crazy.
One day I came to class and the teacher told me I had to sit in a different spot. She noticed I kept sitting in a certain spot, so I was not allowed to anymore. Wow, the only thing helping me feel safe in this class was the spot I was sitting in. She took that away from me too.
Suddenly different people were behind me, I had a different view of the door, and I think it was soon after that that I stopped coming.
The whole tone of that class was trying to help us find our way back to normal. It was like:
Something happened to divert you from the path of normal. You had a suicide attempt, you were 5150ed, you had a “psychotic break,” or you had so much anxiety you lost your job. Well, we will make our way back to normal, because that’s what everyone wants, and that’s where happiness is. Working full time, having a regular family, and eating hamburgers and french fries while watching tv is normal. We can get you back there.
Of course, I never was normal, don’t want a hamburger, have never worked full time. Getting back to normal isn’t possible for me.
My world view is that normal is destroying Mother Earth and all life forms. I have other things to do than work full time. Parents and children are some of my favorite people, but I’m not having kids either. Radical mental health is about choices other than “getting better” and back to normal life.
radical mental health
So yeah, I think radical mental health can attract more than its fair share of people who have autism plus crazy. We are gifted with the vision that another world is possible, and normal never worked for us in the first place.
“I need to do everything I can to get back to normal so I can be a functional member of society again, which means working full time and having a regular family,” is a totally different mentality from, “My differences are valid and maybe even desirable–we can work with them to co-create a better world.”
Thank you for supporting me in who I am and to the friends who ask inspiring questions. Autism plus crazy is a life I love and will live as well as I can, with all the kindness and patience I can spin out of compassion.