My Autism Self-Diagnosis Part 2

If you missed the first part of my autism self-diagnosis journey, you can find part one here.

The second phase of my autism self-diagnosis process started about the time I graduated high school in 2006. Autism still hadn’t really come to mind but I knew there was something about me that just wasn’t clicking. I started needing immense amounts of downtime and became more of a homebody. I also was becoming increasingly aware of the way I struggled with relationships, especially romantic ones.

When it came to romantic relationships, I was struggling with what I actually felt versus how I came off. To boys I liked or dated but didn’t feel particularly strongly about, I could come off as intense and overly-attached. Looking back, on that behavior I see it for the autistic movie-talk that it was.

The intense behavior wasn’t because I actually felt that way. What I was doing was parroting the behaviors I had seen in movies and TV shows because I thought that was how you were supposed to act in real life. I even remember assuming other people learned how to act toward other people by watching shows and movies.

I have since discovered some of my friends also did this growing up. Shocking to probably none of you: all of these friends are neurodivergent.

Missed Connections

Circling back to romantic relationships, when I truly liked someone, a frequent complaint was they couldn’t tell how I felt. If things felt good but then de-railed in a way I couldn’t understand, I’d have a hard time not trying to problem-solve it back together. I could feel something wasn’t quite right in how I was handling these connections and I pursued therapy.

Of course, I masked the hell out of these appointments. I babbled my head off and kind of hinted there were some issues with my dad. Largely, I flurried the room with my long-winded rambles that expertly avoided the concerns that brought me there. It wasn’t even a conscious decision. I remember sitting there and thinking “why can’t I just tell her why I’m here and how I’m feeling?”

You may not know this about autistic people but many of us struggle with alexithymia. Alexithymia is the inability to identify and describe the emotions one experiences. My inability to express how I was really feeling and what I was actually concerned about was a symptom. But it wasn’t seen that way. Instead, it meant that the therapist I went to for help told me I seemed perfectly fine. She told me she didn’t know how to help me and implied I shouldn’t take up more of her time.

College Gets Confusing

That fall I started college and was very much not fine. I went from a mostly straight-A student to barely able to go to class. It wasn’t that I felt down or depressed, I just couldn’t get myself to physically go. I would mentally prepare at night, thinking and re-thinking what my schedule was for the next day. I’d lay there picturing the buildings I needed to go to and the routes I should take to get there. I’d obsess over what time I needed to leave and what time I needed to get up.

And then the time would come to get up and I just…couldn’t. I was stuck. Stuck worrying about how to dress so I didn’t stand out. Stuck thinking about how many people would be crammed in around me at tiny desks. I was simply stuck worrying about how many things I had to remember just to get to class in the first place. When I did make it to class, I knew it would be just to sit there, miserable. Professors just talked at you with very little other engagement. My spicy brain just could not stay present in a room with 300 other people. I remember wondering if everyone else also felt perpetually on edge in classes the way I did

Now I know more about my own brain and recognize these issues for what they were. I was desperately trying to build scripts in a new environment that had very little routine. I was overwhelmed by sensory decisions like how to dress to walk through rainy Seattle while still being comfortable in class. My ADHD was also undiagnosed at the time so I truly had no framework for my lack of executive dysfunction.

Scraping By

I ended up on academic probation but somehow (really a magical somehow, I have no idea how) I managed to scrape my way through. During this time I again pursued therapy only to again be told I seemed fine and they didn’t know what I needed help with. I can’t give you some magical neurodivergent recipe as to how I finished college but I credit it to four factors:

1. My mom telling me that time off wasn’t an option unless I wanted to be on my own and support myself (I didn’t.)
2. I went back to playing volleyball and joined our club team. This forced more of a structure on my schedule that helped me prioritize schoolwork as well.
3. I made good friends who were cool and liked to party while also caring about their grades. Pretty sure I just masked off this behavior which helped me get a bit more balance than I had in the beginning.
4. I put effort into working a more routine class schedule with classes that allowed for more reading than good attendance habits.

Special-Interesting Through Senior Year

This got me through to my senior year when I took a nonverbal communications class and my world opened up. I was so excited to learn you could study nonverbal communication that it was an instant special interest. I read everything I could get my hands on, became a sudden Paul Ekman collector, and I began watching people differently trying to look for cues previously hidden from me. This special interest ultimately was what started the autism ball rolling through my brain.

I found myself identifying with autism information I came across while special-interesting. I did some general research on it which gave me the courage to ask my mom about the early suspicions she had and talk to her about how I still did many of the things she thought I had grown out of. At this point, the imposter syndrome got the better of me for a bit longer while I graduated in the spring of 2011, got my first grown-up job, and ultimately, moved to Israel.

Wait, what? That’s really its own story but throughout the first year I spent here, I realized that I liked spending an unusual amount of time alone compared to everyone I was packed in a program with. I still didn’t like the way other people did things and was perpetually overstimulated. I’d randomly hit my limits and just leave the program for a week to go hide out at my then-boyfriend’s [family] home, really dense to my level of welcomeness at any given time or for prolonged periods.

Super [Self-Diagnosis] Nanny

After that year, I was home for the summer before returning to get my Israeli citizenship in the fall. By random chance, I ended up nannying for a family with a five-year-old son who was very much on the autism spectrum. Only his parents were in denial. The “we read Psychology and Gut to treat our child but won’t admit he needs help to engage socially” kind of denial. The dad also had some latent antisemitic views so I wasn’t the most comfortable expressing my concerns in that house.

I wanted to do what I could in the time I was with the child and consulted a family friend. She was an occupational therapist who specialized in working with autistic children. To my surprise, she provided me with resources that not only helped me understand this child better but suddenly I was understanding myself better.

Diagnostic Bias

From there it was a process and it continues to be so. A formal diagnosis for an autistic woman, especially one with ADHD, is difficult to get because there are so many biases and misunderstandings. The last time I tried to seek a diagnosis, I worked myself up for months to go and discuss it. The therapist told me I couldn’t be autistic because I have friends. “You have a job, you have friends. What do you want me to do for you?” I don’t know, recognize how much harder it is for me to keep that job and those friends?

There are still times the imposter syndrome creeps in and I think maybe I just have some intense presentation of ADHD and Jewish intergenerational trauma. When that happens, I remind myself of the one thing in this process I know to have been true: that since having the autism framework, my life has improved. My relationships are better; romantically and with my family and friends. I have been able to better understand issues I had working in office environments and make career decisions that suit me better and cause less anxiety.

And that’s why I’m telling my story. I’m not particularly interested in being vulnerable on the internet. But I am interested in helping others to have an easier time than I did. Too many doctors are concerned with the increase in autistic women being diagnosed for the wrong reasons. They dismiss it as some trend for attention with complete disregard for the fact that having the framework significantly improves our lives. It’s very triggering for the autistic sense of justice.

Seeking Solutions

The last time I was disappointed in therapy was in 2019 and I’ve been trying to build myself up to it again. Knowing my tendency to mask or freeze in such situations, I know I need to be better prepared this time. To better prepare, I built a self-diagnosis worksheet to fill out and bring with me.

It includes each of the standard self-diagnosis questionnaires, their threshold scores, and a place to put your own scores. It also includes tests for co-occurring conditions that can impact autism test results. These tests can help you and your doctor build a bigger picture of your symptoms and how they may be impacted by things such as ADHD, alexithymia, and other conditions.

I’m hopeful that bringing my scores with me the next time I try to speak with my doctor allows them to see past my involuntary masking and recognize my experiences and struggles.

What about you? What do you wish you knew about approaching doctors with an Autism Self-Diagnosis? Tell me your stories in the comments!