A couple of weeks ago, I attended an EDI talk given by one of my profs entitled Autistic in Academia. Her talk was about being diagnosed as autistic late in life and what it’s like being autistic in the world of academica. Back in my post Self-Help (a.k.a If I Had a Million Dollars) I mentioned my own diagnoses I received as an adult of autism and ADHD, aand now I think is the time to share how that came about. Before I get too far into this, I want to make a couple of disclaimers:

1. I am not an expert in neurodivergence, nor am I here to offer any medical advice or mental health advice. Please seek out a professional for these questions, I can only offer my own experience.
2. For sources on autism facts and awareness, please look for organizations that promote content and symbology by autistic voices and avoid harmful ones, like Austism Speaks and the puzzle piece symbol. My post title “The Equation I Never Solved” is in no way associated with the idea that we are puzzles to be solved, the context for the title is further in the post.
3. There is a huge discourse right now within the autism community about person-first (person with autism) vs. identity first (autistic person) language – I don’t particularly care, I use them interchangeably. Some people do care, and which one they prefer varies from person to person. No one autistic person speaks for the entire autistic community, myself included.

Before I launched this website, I was drafting my About Me page and I came to the line where I wrote “a neurodivergent person” and I paused. I thought to myself “Is this something I want to publicly disclose?” I had a similar pause when I talked about it in the post I linked above (Self Help). And when I attended my professor’s talk, I asked her what she recommended about students disclosing their neurodivergence to prof and others in the field. There is still such a stigma surrounding both autism and ADHD. Neurodivergent people are often labeled as difficult, stubborn, hard to work with, more effort than we’re worth, less capable, the list goes on and on. It’s a knee-jerk reaction. And the thing about publicly disclosing it as a student is that I am disclosing it to potential grad school supervisors and eventually future employers. Do I really want to slap myself with that label right from the beginning?

When I asked my prof, her response was quite honest. I can’t remember it word for word, but she agreed that it was a tricky thing and an individual choice. She had received her diagnosis when she was already tenured. But then she followed up with (I am paraphrasing, I wish I wrote down what she said):

Ideally, it’s up to those of us who are already here to break those barriers and pave the way for those who come behind us.

When she said that, I realized that was the exact reason I made this site in the first place: to provide a voice and guidance for those who are following a similar tricky pathway to my own. Obviously even before this talk I had made the decision to be public about it, since it does exist on my About Me page and in the post I mentioned. Ultimately I decided that in order for any progress to be made in terms of breaking down these barriers and changing that knee-jerk reaction, it’s important to be open and transparent. And if a person/place doesn’t want to hire me because I’m neurodivergent (illegal, yes, but it happens), then why on earth would I want to work with someone who can’t accept me as a person who is both a scientist and autistic? If they want my best work, they need my complete brain, spiciness and all.

When I was a kid, I spent a lot of time on my own mostly due to circumstances. I grew up as the only kid in the house, and in a very small town. I had some friends, but I always felt like an outsider. I was bullied quite a bit, even once by a teacher. My closest friends growing up were my younger cousins. But my favourite thing to do was to “play” by myself. I would spend hours simply arranging my toys, playing the piano/keyboard, or making complex geometric shapes out of Legos. Or I would read a novel in a day. Looking back now, it’s seems pretty obvious, but back then (in the 90’s) people simply weren’t looking for autism in girls. Most of the research was based around how it presented in boys, which was different than how it presented in girls.

My dad used to travel quite a bit for work, and every time he left I would have massive panic attacks that were bad enough to land me in the hospital. At first we thought they were asthma attacks (I had chronic asthma as a child that I thankfully grew out of). Then one doctor suggested I was simply doing it for attention. Unfortunately some people in my life believed this, which definitely put a strain on some of the relationships in my life. Then one of my dad’s coworkers thought that maybe a distraction would help, and dropped off her dog the next time he went away. I played with that dog every second I could. No panic attacks. As an adult looking back, I can recognize now that the panic attacks were autistic meltdowns.

And you may wonder why I couldn’t tell the difference between an asthma attack and a panic attack/meltdown. That’s because of the particular subtype my autism presents with: alexithymia. That is basically a fancy word that means I struggle with recognizing and describing my emotions. It comes from having overall poor interoception skills, meaning it’s pretty much always tough to know what’s going on in my body. I never know if I’m hungry until I’m starving, or too hot until I’m approaching heat stroke, or if I have to go to the bathroom until it’s super urgent. So I had no idea that disruptions in my routine, like my dad going on a trip, was triggering enough anxiety in me to cause a meltdown.

As an adult, I have spent years of my life masking these traits, meaning I’ve been suppressing them so I can appear more neurotypical and fit in. This takes a huge mental and emotional toll, and the result of that is these meltdowns become internalized and turn into shutdowns instead. That’s when I experience what looks like a deep depression and burnout. This swinging between the apparent anxiety and depression (combined with a family history) is what led the university doctors in my first program to misdiagnose me with bipolar, and give me medication that simply made me sleep all day. Unfortunately this is a common occurence with autistic women.

Around when I was deciding I would like to go back to school, there was a sort of renaissance happening online of women discovering themselves in adulthood as being neurodivergent. There was new research coming to light about how it presents in girls and women, and they were starting to share their stories and their day-to-day struggles on social media. Reading these stories were like reading about my own life. I always had this feeling that I’m missing something that makes me fully “human,” or like I’m playing a video game on hard mode that everyone except for me got the instructions for and all the while people are insisting that it’s an easy game. I would go through periods of being completely fine and then, seemingly with no warning, I would hit burnout and be barely able to function for long periods. It turns out this was from existing in a world built for neurotypical people with no accommodations in my life for my needs, and not being able to read the internal signals in my body that I’m approaching the end of my capabilities.

After doing tons of research, I decided to get assessed. Some adults choose not to because there are very few resources and supports available for adults unless they are at the point of needing actual one-on-one care, but since I was aiming to go back to school I decided it was important. I signed up for a publicly funded assessment because private ones are several thousand dollars, but the waitlist for that is over three years long in Canada (for adults). After going through my first semester with no accommodations and really struggling, I decided I couldn’t wait and went ahead with the private option. It still took over a year, and cost me several thousand dollars. The ADHD diagnosis on top of the autism was a surprise to me, it was not something I had considered, but now that I am on ADHD medication, I can absolutely tell the difference. I have accommodations set up at school now, and things are certainly much better.

But… that’s not the end of the story. It never will be the end of the story. That’s why the title of this post is “The Equation I Never Solved.” Not only because it took the stories from other people and the attention from a doctor to figure it out, but because this is going to be a continous point of struggle for me. It will never be solved. I will forever exist in a world build for neurotypical people. Even the programs designed to help accommodate me can fail. I have spent most of this semester struggling with the people who facilitate accommodated exams at my school because they have been failing spectacularly to provide the environment I need to succeed. As a person who is burdened with a different type of brain wiring, it seems unfair that I have to automatically be burdened with advocacy as well, but that is how it goes. The people who need to spend the extra energy just to function and exist in the world also have to spend even more on top of it to fight for the tools and enviromments that will help us do so. The system is broken, and it shouldn’t be. It’s 2025.

So here I am, publicly declaring my neurodivergence, and claiming my role as an advocate for myself and others like me. If you recognize yourself at all in these words, and want some more information, feel free to leave a comment, or to Contact Me, or to check out https://embrace-autism.com/ which has a ton of great resources and is where I received my assessment.