Finding people like me online helped me self-diagnose my autism, and now my life is much easier, writes Devon Harris
Self-diagnosis can be a controversial thing, but for me, it was life-saving.
I realised that I was autistic in April 2021 and since then, I have been using my new understanding of my brain to set boundaries, unpack trauma, and ask for the accommodations I need.
My journey started after several particularly hard national lockdowns. I noticed that my brain was not reacting to the pandemic in the same way as my peers: where I was paralysed with fear, unable to sleep, eat, or shower, they felt mildly inconvenienced. My brain felt as if it was going to erupt out of my ears with the stress I was under.
I felt alone in my pain because I just kept thinking, “Why am I the only one reacting like this? Why am I being so weird?”.
In October 2020, I started seeing content on my Instagram feed about how people with ADHD and autism were struggling throughout lockdown because losing essential routines and having anxiety around their health made it difficult for them to self-regulate.
The struggles they shared were things I’d dealt with my whole life but never quite had the vocabulary to describe
Through this content and the #ActuallyAutistic movement, I found creators like Ella Willis, Sarah J Murr, and Paige Layle, who were sharing reels about lesser-known traits of autism, sensory issues they face, and helpful coping strategies. The struggles they shared were things I’d dealt with my whole life but never quite had the vocabulary to describe.
After seeing their content, I dove headfirst into research. I wanted to establish a foundation of traits that I could explore my experience of in order to determine whether I was autistic.
I learned that autism is often accompanied by other co-occurring conditions like ADHD, depression, anxiety, and dyslexia. An autistic diagnosis can be missed when traits of these conditions are present.
In my case, I was diagnosed with anxiety and depression in 2016 and dyslexia (with traits of other learning difficulties) in 2018. It was clear that for me, there was an overlap between traits attributed to mental illness, trauma, and autism.
Research into adult women was limited and often depicted autism as being a problem with someone’s character
Autism is now understood to be a spectrum where each person experiences traits at different levels — think of a pie chart, but all the slices are different lengths.
Academic research helped me to establish a base understanding of autism and how it presents, but because our understanding of autism is still developing, research can quickly become outdated. Plus, research into adult women was limited, and often depicted autism as being a problem with someone’s character rather than a neurodivergence.
This caused a lot of stress for me, so I started searching for more content creators and writers who shared their lived experiences with autism.
One creator is @autieselfcare, a young ambassador for the National Autistic Society, whose infographics help easily break down traits, experiences, and information backed by a nationally recognised autism charity. Another source I found was Tania Marshall, the author of Aspiengirl and Planet Aspien, who created a blog to outline their research into autism in females, including their personal experiences.
I’ve spent the last year unpacking everything with a therapist. We’ve been exploring the impact of not having a diagnosis or understanding of my brain sooner
Using these sources, I developed an understanding of the traits I experience. For example, I have always had difficulty in social situations. I get very anxious when talking to people because I’m conscious of the amount of eye contact I give, accidentally mimicking them or saying something rude, or being unable to read their feelings.
I thrive in routine but also get burnt out easily as I mask (hide neurodiverse traits) a lot, especially in the office. I have intense sensory issues, particularly when it comes to the texture, smell, or sight of food, and thus have a restrictive diet.
However, some traits have less of an impact on my day-to-day, like hyperfixations. I don’t have a brilliant memory or attention span, so I find it difficult to hold a special interest for long. I will cry over how lovely flowers are but I couldn’t tell you a thing about them.
Now that I’m aware of this, I’ve spent the last year unpacking everything with a therapist. I had a difficult time growing up and so we’ve been exploring the impact of not having a diagnosis or understanding of my brain sooner, and how this has resulted in trauma and impacted my relationships with others.
I have been able to set boundaries with my friends and become more confident in the way I interact with people
While I now know why I can react and behave in certain ways, it can still be difficult to respond to certain situations in a “neurotypical” way. If my brain gets overwhelmed, I can’t always consciously manage that, especially as I struggle to know what I’m thinking most of the time. Unmasking is another challenge I will face for a few years.
But there is a bright side to this: I no longer force myself into situations where certain sensory factors would cause harm.
By informing my manager of my self-diagnosis, I am able to have more freedom in how I work, with permission to leave meetings if I get overwhelmed with the noise, having a small plushie to fidget with, and getting instructions written down instead of shared verbally.
These little things have made it easier for me to adapt to office life. I have been able to set boundaries with my friends and become more confident in the way I interact with people. This discovery ushered in another one — that I’m non-binary. Overall, now I’m just more me, and my mental health is all the better for it.
- For general information, the National Autistic Society
- For research papers, Autistica
- For more on the spectrum, Nera Birch’s article on The Mighty
Featured image is an illustration of a person wearing thick-rimmed, stylish black glasses who is looking at their phone and smiling. Illustrative blue shapes are coming out of their phone to give the sense of all the helpful and positive things they’ve discovered online
Page last updated June 2022