My journey to being diagnosed with autism as an adult
In March, the World Health Organization declared COVID-19 as a pandemic. At the end of May, Myka Stauffer posted an infamous video on her YouTube channel where Myka and her husband, James, explained they had disrupted the adoption of their autistic son. Although seemingly unrelated, these two events set motion to my 2020.
Over the following weeks, I became obsessed with both these events. I changed my master thesis to cover mental health during the COVID-19 pandemic, and I read every news article and watched every YouTube video about the Myka Stauffer story. Let alone did I know that my fascination might be because I was autistic myself.
I spent most of 2020 at home, working on my master’s thesis. I cared deeply about the topic at hand, and it often didn’t feel like work. Researching scientific articles, reading, and writing are all things I enjoy.
By the end of the year, I accepted an internship in a different city. I’ve done internships before, and they all worked out well. However, adjusting to a new one has always been hard for me. When people explain what I have to do, I struggle with processing those words and turning them into action. I usually go home, write everything I was told, study it, and then come back the next day with every single word carefully studied.
My first week at the new internship was intense. I worked long hours, trying to adjust to a team where everyone else knew what to do and how. Looking back, having spent most of 2020 at home and having little face-to-face interaction with people made it harder for me to go back to a workplace setting — and deal with co-workers every day. To put it simply, I was out of practice. This is only natural since social isolation affects the brain. However, I’ve always struggled with socializing. Living alone during the pandemic and having most of my interactions virtually meant that even a trip to the supermarket could pose a challenge.
One day a huge storm hit the town I was in. Given that my internship was related to marine animals, we got a phone call to assist a young whale (Balaenoptera physalus) who was stranded. The whale was swimming in a shallow area and got stuck when the tide went down; it would be hours until the tide rose again. The animal was on the sand, a five-minute walking distance from the water.
One of the workers told me to get buckets, walk to the water, get water, and cover the whale so she wouldn’t dehydrate. I stopped for a moment, processing what she told me. It was only a few seconds, but it was enough for her to yell: “What?! I don’t understand. What’s your doubt?”
It wasn’t until I read Cynthia Kim’s book “Nerdy, Shy, and Socially Inappropriate: A User Guide to an Asperger Life” that I fully understood this moment. There’s often a difficulty processing language when you’re autistic; a lack of communication between the brain and your motor skills. Unfortunately, this often leads to people thinking you’re dumb.
I don’t know what the experience of someone who’s neurotypical (non-autistic) is like, but while the worker is telling me what to do, I’m listening to the conversations of people around us, to the wind, to the motor of the police boat behind me, and I just can’t filter all of this to focus on what she’s telling me. Also, I struggle with reading facial expressions, so I don’t realize she’s stressed until she yells (which is understandable considering the time-pressured situation).
I felt awful; it was only my first week, and I was already blowing it. I turned around and went to do what she told me. I did it for several hours, even though I was freezing and exhausted. I cared about that whale and wanted to help. Unfortunately, when it comes to marine mammal rescue, the odds are never in the animal’s favor — and we couldn’t save that animal.
That moment, however, made me think I needed to put my finger on what was bothering me about myself, so I could improve my relationship with others — and most importantly with myself.
Since I became so invested in the Myka Stauffer story, YouTube started recommending me videos about autism. I watched a video by Yo Sandy Sam, and I was stunned. I identified with most of what was mentioned. I moved to other videos about women who were diagnosed with autism in adulthood. I read news articles, I read scientific articles, I read books. The more I researched it, the more I realized how much of my life could be explained by being autistic.
Autism explained my sleeping difficulties since kindergarten, my obsession with textures as a child, my hypersensitivities to pain and sound, my constant anxiety, why I hate making eye contact, and why I struggle reading other people’s emotions and giving a proper response. It explained why I’ve always struggled with starting and maintaining relationships, why I have a monotonous voice tone, and why my facial expressions don’t often reflect how I feel. It explained why I spend hours and hours looking for clothes that I can tolerate wearing. It also explained why I obsess over random topics (like the Myka Stauffer story or COVID-19) and forget to sleep or eat until I know everything I can about that subject.
I did several online tests on autism, and all of them returned a similar result:
“You’re very likely neurodiverse/autistic.”
I was terrified of going to a psychologist for an official diagnosis. I was struggling with the idea that I could have spent 27 years without knowing something so fundamental about myself — it just didn’t seem possible. But I also knew I didn’t want to live in this limbo of thinking I was autistic and not knowing for sure.
I contacted a psychologist and made an appointment as soon as I realized it would be online. I knew an online setting would make it easier to talk about all the moments of my childhood, teenage years, and adulthood that, quite frankly, had autism written all over. It was clear on my first appointment that I would get a diagnosis.
As it turns out, my story was not unique. There are countless articles about women being diagnosed in their twenties, thirties, forties, and even later in life. There are a few reasons for this: Females are under-represented in autism research and, therefore, the diagnostic profile is skewed towards males. This doesn’t mean there are female and male profiles for autism; it just means psychologists and psychiatrists have been trying to get a full picture while only looking at a part of the sample. Undiagnosed individuals often learn to mask, which means they learn to behave just like everyone else and cover their autistic traits.
All of this was completely unknown to me before getting a diagnosis. I’ve never even met anyone who was autistic (or at least that I knew was autistic). Nor have I ever thought of myself as possibly being autistic. The idea that someone could be diagnosed as an adult was completely foreign to me. If it wasn’t for the YouTube algorithm, I’d probably still be looking for an answer.