My Autism Self-Diagnosis Story Pt. 1
Autism self-diagnosis is a confusing and often overwhelming process. It’s a time full of many conflicting emotions. There’s some relief clonking around inside you, relieved to have some answers but it’s in there banging against anger and confusion. You’re angry to realize how misunderstood you’ve been and that your life has been more difficult due to being undiagnosed. The imposter syndrome that shadows the diagnosis can leave you feeling even more confused than you were before. That is why I’m telling my story here.
Due to our proneness for clustering, I’ve had multiple friends come to me over the past year asking about my autism diagnosis. Sharing our experiences with one another has been incredibly validating, informative, and helpful. It can also be fairly hilarious when we get to exchanging childhood photos that display some autistic traits. I hope this blog will be an extension of those experiences to those considering their own autism self-diagnosis.
I’m telling this self-diagnosis story in two parts. Partially because I am long-winded but mostly because I see my autism self-diagnosis in two phases. There’s the first part which is jumbled up in the haze of childhood. Memories that are mixed of my own real ones with things people have told me, mashed together for me to pluck the symptoms from. Then there’s the second phase, the one where I’m older. Older and more aware and slowly starting to make sense of those symptoms I plucked out.
Early Hints Leading to Self-Diagnosis
While my autism self-diagnosis occurred when I was 23, that wasn’t the first time autism came up in my life. My mom, a preschool teacher, was educated and experienced with identifying autism. As she told me many times, “I was just sure I was going to find out you were autistic but then you stopped doing [list of autistic habits.]” All I thought every time she said it was that I still did most of the things she listed, I just hid them.
Now I know that I wasn’t hiding things, I was masking. I didn’t stop caring about how my socks were lined up, I just got old enough to put them on myself. My hearing was still sensitive, I could just communicate better or move away more easily if something was too loud. I sometimes wonder if my tendency towards hyper-independence is a result of this. My mom says I’ve always been independent but how much of it is a coping mechanism developed to resolve sensory issues?
Apparently, I was a bit too independent though because come second grade, I ended up in Friendship Club. Now, I did not actually know I was in Friendship Club until I was 27. I was diagnosed with Juvenile Rheumatoid Arthritis the year before which caused me to miss a lot of school. This led to some kids in my class being mean because they thought they could catch something from me. I just remember thinking they were dumb more than I was hurt or upset by it. I’m guessing that’s why I apparently never told my mom a word about it.
From my perspective, Friendship Club was because of my JRA diagnosis. All I remember about it was that some other kids went as well, each week we were allowed to take home a different stuffed animal, and the counselor brought her Wheaten Terrier, Shamos, with her. The fact my mom and I both remember this dog’s name is probably a testament to how much I talked about Shamos. Not sure that was the intended friend I was supposed to make.
However, from the adult perspectives of my mom and teachers, I didn’t really play with other kids. If I did, they had to do what I was doing. If they didn’t do it the way I thought they should, I told them they were doing it wrong. I maintain that they were probably doing it wrong.
Outside Looking In
While the motherly mentions of having thought I would be autistic formed a bit of a trail through the weeds, it still took me a while to find my way through it. Growing up I always felt like I was missing something that everyone else inherently knew. Despite the rough start in Friendship Club, I did go on to make many friends but there was always this feeling of looking in from the outside.
Whenever I think back on this feeling, a particular time comes to mind. That experience was fifth-grade recess. I switched schools that year so I had to start from scratch with the friend-making. The popular girls in the grade were a rather large pack of mini-suburbanites that came in a variety of niceness. I remember spending recesses with them, typically spent packed onto a set of benches while talking about whatever fifth-graders in the nineties talked about.
I remember feeling perplexed by how easily they talked amongst themselves. The way they interacted with one another somehow felt different than the friendships I’d had at my old school. On some level, I often felt like I was doing or saying something wrong. It was like they had been given some mysterious guidebook that never made its way to me. At the time I think I chalked it up to being the only Jew, having divorced parents, and/or but not limited to: a volatile dad who lived two states away. Putting those aside like only an emotionally oblivious person can, I was determined to figure out how to navigate this new social frontier.
In retrospect, those recess sessions are where I really learned to mask. I spent a lot of time observing and absorbing how they interacted with one another. Watching their facial expressions and how they navigated topics, trying to do the same. I never quite made it all the way in with that crowd but I became close with one of them. She always seemed like she really understood the code and I thought she had close, effortless friendships with multiple girls in that group. That person would laugh to hear me admit that because that girl has been my best friend for the last 25 years.
That best friend has also been diagnosed with autism and would admit she definitely did not have the coveted code I envied her for. We often laugh now at the blatantly obvious neurodivergent aspects of our childhood friendship. There was a lot of parallel play. There were a lot of shared special interests. And there were a lot of tater tots.
Not all of my friendships would be so joyfully full of tater-tots. Throughout middle and high school, I continued to feel different in a way I couldn’t quite place. I had friends but still was always a bit on the periphery, unsure how to get all the way in. There were no obvious flags that something was off. I did well in school, played competitive volleyball, and worked a part-time job. I was also in BBYO (Jewish youth group for those not in the know) and volunteered. Do not ask me how I did all of this, I do not know.
Gifted Child Burnout
Perhaps I kept myself so busy because it left me with less time to not be invited places. Maybe it was that in pursuing things I needed to do to get into college, I also got to pour myself into my special interests. Pursuing my special interests put me around other people with those interests which made socializing easier.
The burnout started to creep in my senior year of high school. That year I had a rheumatologist cold turkey me on prednisone which was (quite obviously) a disaster. I was in a lot of pain and honestly was starting to think I could be bipolar before someone bothered to go over the side effects with me. I missed a lot of school and stopped playing volleyball and it was like once I was out of the structured routine, I could never get back into things the same way.
This brings us to a great stopping point for part one. Part one has been the lead-up to my autism self-diagnosis and some of my experiences that brought me to that point. In part two I’ll talk about pursuing therapy, almost failing out of college, how I ultimately arrived at an autism diagnosis, and how beneficial that framework has been for my life.