My autism diagnosis

Turns out, I'm weirder than I thought.

Earlier this month, I received the written report for my autism assessment. It diagnosed me with autism (social level 1, repetitive behaviors level 1), ADHD (inattentive type), and OCD. I have been meaning to write about my thoughts and reactions to this, but so much as been going on for me generally, and my feelings about this matter are so varied and complicated.

To be clear, the diagnoses were no surprise. In particular, I first wondered if I was autistic when I was in seventh grade. I was having some social struggles and knew from my psychology readings that autism was a possibility. I even mentioned it to a friend (well, acquaintance) in class. “No, of course not,” she replied, reassuringly. I felt miffed and misunderstood. Even then, I had no shame about neurodivergence.

What is surprising to me, however, is how obvious my autistic traits apparently are. I’m basically a magnet for neuroqueerness, and autistic people in particular seem drawn to my utter lack of social camouflage. Yet I assumed, incorrectly, that autistic people who are not diagnosed in early childhood are necessarily those who mask their traits a lot. So when I read through the results of the ADOS-2, a diagnostic test that is often called the “gold standard” for autism, I was intrigued. The assessment generally uses the ADOS-2 in combination with the CAT-Q, a psychometric for how much effort a person uses to socially camouflage, to assess the effectiveness of a person’s camouflage. Some people may, for example, be very preoccupied with camouflaging, yet their camouflage still does not cover up some of their autistic traits.

I scored fairly low on the CAT-Q, below the threshold for autistic camouflaging, and just below the average for neurotypical women (who camouflage the least of all groups; note that nonbinary people are included as a separate category in the study I am referencing, which is important as typically nonbinary people camouflage more than people of other genders). This meant that my behavior in the ADOS-2, which was conducted as an interview, would clearly show whether or not I had significant autistic traits. I easily met all the ADOS-2 criteria for autism, which actually confused me a bit. I usually think of myself as an expressive person (I must be, as a performing artist, yes?), but apparently I used fewer gestures and facial expressions than a neurotypical person would. I thought that I didn’t have a problem with eye contact, but the assessor noted that though I did use eye contact, it was not synchronized with the communication in order to emphasize what I said or to indicate that I was listening. (I didn’t even know this was a consideration!). I also demonstrated significant self-stimulatory behavior, which I did notice in one moment of the interview when I rocked back-and-forth in my chair.

During the interview, the assessor explained that autistic people and neurotypical people differ not just in the amount of gestures and body language they use, but also for what purpose. Neurotypical people align their body language and tone of voice with the social context; for example, they may ask, “How are you?” in a dramatic and melodic manner simply as a social overture, with their expressivity not indicating a genuine concern for the wellbeing of their conversational partner but rather being “just the way they say it.” Whereas autistic people’s body language actually indicates what they are feeling, which can seem unnerving or even rude to those who do not understand. I think this explains why I can be both expressive and not in different moments. When the conversation is primarily informational, I’m likely too focused on the verbal communication to gesture much. But if my emotions are stirred up, then I wear my heart on my sleeve. (This is the first time I used that idiom. It was on one of the autism psychometric tests. It’s very peculiar to me, as many idioms are. My emotions don’t leak out of my sleeve; they emanate from every dancing joint of my body.)

The assessor told me that it is obvious that I am an AuDHDer, a person with autism and ADHD. But if is so obvious, why wasn’t I assessed as a child? This question weighed upon me soon after I was diagnosed. One part of me wanted to deny it, even claim that I must have “lied” in the assessment, even though I was my natural self during the interview. Another part of me was in grief, feeling like I should have been identified sooner and thus given more support as a child. I was always seen as different, but my challenges tended to be seen as side effects of my gifts. This had the positive effect of my barely feeling any shame or stigma to struggling, but the negative effect of people assuming that I could compensate completely with my intelligence and obsession with researching psychology. In my adulthood so far, I have suffered so much from not understanding key social concepts (such as boundaries), having poor executive functioning, and getting easily overwhelmed sensorily and socially. I wish I had been supported and taught requisite skills as a child, when responsibilities did not yet burden my capacities so greatly.

I’m not yet sure how my new diagnoses will change my current mental health treatment. Stimulants are an option for ADHD, but they are riskier with concurrent bipolar and anxiety. I’ve thought of getting a ADHD coach when I start graduate school. OCD tends to come and go for me, and when it’s affecting me more, my therapist is a helpful support. But the biggest problem for me right now is autistic shutdowns. And unfortunately, there is no treatment for that, only prevention: try to avoid overstimulating environments and situations. Which is hard when you’re a person who tends to push themself to their limit.