TO BE OR NOT TO BE…
In one of my most recent posts I officially “came out” as autistic. I told you that I “got” my diagnosis at the age of thirty five, but what I didn’t tell you, is that I was self diagnosed first.
This may not seem like a big deal, but it is. And maybe not for the reasons that you think.
The goal posts of Autism Spectrum Disorder have been changing so rapidly over the last thirty years or so, and they were constantly changing before that.
First, they thought that Autism was a form of childhood schizophrenia, that was caused by the coolness of bad mothers. I am not kidding. It was called the “Refrigerator Mother Theory“. There is actually a heart wrenching scene in the HBO biopic Temple Grandin involving her mother and the psychologist diagnosing her daughter. This theory lasted from 1940 to 1960. Twenty years of blaming mothers and institutionalizing autistic people. Side note- Temple Grandin and her mother, Eustacia Cutler, are two of my heroes. Both strong women, in a time where strong women were seen as the problem.
Then things became a little more “progressive.” They started keeping Autistic children at home instead of in institutions. But the diagnostic parameters were still extremely narrow, leaving out a majority of the spectrum. Somewhere in between “progressive” and the early 2000’s, we got Rain Man, which came with its own unintended baggage. And the puzzle piece.
(Some love the puzzle piece, some hate it. Read more about that in this Autism Society of America facebook post from 2015. Trigger warning on some of those comments: Extremely offensive ideas and conjecture about autistic people, diagnostics, and the origin of Autism. Hopefully we’ve come a long way in the last five years. Personally I prefer the rainbow infinity symbol or wreath that the Autistic Self Advocacy Network uses.)
Then came Autism Speaks. Huh. What to say about Autism Speaks… There is too much. In fact, I will save Autism Speaks for its own day. (It’s taken up enough of our lives as it is, what’s one more day?) Suffice to say, Autism Speaks was founded in 2005 and they did a lot to bring about Awareness for “children with autism.” But this did not really change Autism, diagnostically, or as far as I know, it did not. I know that they were for early intervention and diagnostics, so that is good, I suppose.
But I will say, this is where things start to go sideways for some of us under the spectrum umbrella, especially women. I misspoke- this is where I tell you about how it is to get diagnosed as a woman. It was technically always a little sideways for us. To put it simply, the diagnostic criteria for Autism is hopelessly slanted towards men and boys, specifically white men. (But the race issue is worth its own post at a later time, right now we are talking about gender bias.)
Women present with Autism Spectrum Disorder in a very different way than men, especially as girls, when these “decisions” are being made. Girls tend to have more “socially acceptable” interests and repetitive behaviors. For instance, my obsessive interests were books, movies, and dolls/stuffed animals. Totally acceptable, right? Sure, I was obsessive in my pursuit but because it wasn’t something like trains or dinosaurs or insects, like it usually is with boys, for some reason, this would be dismissed, even though I was playing with dolls for much longer than would be considered age appropriate (honestly, my family home burnt down when I was still young. Had my collection not gone up in smoke I’m sure I would have gone on for longer.)
Now, this doesn’t mean that an Autistic girl can’t have more “masculine” traits. Just like a neurotypical girl can be interested in trains or dinosaurs or insects. It just means that those more typical “boy indicators” shouldn’t be the only markers that children are measured against.
Another difference is that Autistic girls are usually better at navigating social situations. My belief is that for a lot of girls, this falls under the category of interest. We get interested in the way other girls behave and so we make a study of them. Soon, we are masking their behavior completely. Again, an autistic man can be guilty of masking. I know of many men on the spectrum that do this, as well. I don’t think I would be upsetting him to say that my husband masks, A LOT. It can create a fair amount of burnout for him. It also meant that he didn’t get diagnosed until he was almost forty.
My point I am getting to is the diagnostic criteria still leaves something to be desired, as do the majority of psychiatrists and psychologists doing the diagnosing. In my quest to regain stability in my mental health, I had to bring my own research to my doctor’s appointments and convince them to even think about it, instead of dismissing it out of hand. Once I demanded it, my psychiatrist did finally start asking me real diagnostic questions. And honestly, I think it’s still a question for him. He’s very old school.
I had mentioned ASD for almost six months worth of visits before that. It was only after he saw my ADHD medication start to work that he was willing to stop treatment on bipolar and listen to what I had to say. We had also literally exhausted all bipolar treatments short of electroshock. But that’s not even the worst part. There were two other counseling therapists and physicians I saw that refused to even listen and tried to diagnose me with several other disorders, including Borderline Personality Disorder. One of the most common misdiagnoses for women on the spectrum.
So what do you do? Should you keep fighting for a diagnosis or not even bother? It depends on what you want to do with the rest of your life. If you are wanting help from other Autistics, a lot of Autistic community members think self diagnosis is a perfectly acceptable form of diagnosis and will require nothing more from you. For others, they want the legitimacy of a psychiatrist before they will consider you part of the flock. (Personally, I find anyone that needs a doctor’s note to legitimize someone else’s diagnosis … well, that seems like a problem with rigidity and needs to be addressed on its own. I can say that because I had problems with that myself.) If you want insurance to cover anything, I would suggest you get the diagnosis.
Or until you are ready to make that decision for yourself, you can be a NeuroLurker. Do yourself a favor, if you don’t know that term, click on the link. The article by Terra Vance really helped me to decide to first accept my self diagnosis, and then demand my doctors help for more information, just to cover all my bases. Accepting my own analysis first was incredibly important to asserting my own identity, so don’t forget that step. She also wrote a piece called, Very Grand Emotions: How Autistics and Neurotypicals experience emotions differently. The article went viral last year and helped a lot of people address their own misconceptions about autism.
My final word on Self Diagnosis. You are the supreme expert on you. There is no one superior in the field of studying you. So examine your behavior, your thoughts, your research, and demand the legitimacy of other experts. They may know psychiatry, but you know you. Speak your truth with persistence and resolve, the rest will fall into place.