Despite working on his PhD related to autism and education, Chris never considered he was autistic until a question sparked a long diagnostic journey at 25 years old. The now 31-year-old, who works as a Research Fellow with Autism Spectrum Australia, reflects on his neurodivergence and the complications that come with disclosing it.
I was at a social event with other PhD scholars organised through the Autism CRC and one of the autistic students there asked me if I was autistic as well. Before that moment, I had never thought about myself that way, but that question started my long journey. She seemed to notice something about me that nobody else had before, and in such a short amount of time.
I knew close to nothing about autism before starting university because I didn’t learn about it, I didn’t know anyone autistic and I didn’t see it portrayed in what I watched. I was a pretty bright kid, had friends and was happy. There was no reason to consider seeking a diagnosis as my difficulties were typical of somebody by age. Over time I learnt strategies to make my difficulties less noticeable.
Some sensory factors stand out to me on reflection. I was a shirt chewer as a kid, somewhere along the way I managed to stop that behaviour but continued chewing my fingers instead — a slightly better way to manage the need for oral sensory input. I have difficulties sleeping, needing a constant cool temperature, a completely black room and dead silence. As dead silence is often not possible, I have to drown out all possible noises with a fan, aircon, air purifier, earplugs and rain sounds coming from my phone. Those are strategies I implement now and certainly would have been helpful during childhood as my brother’s noise while I was trying to sleep led to frequent arguments. I am a picky eater and have a fairly basic diet. I have difficulties with certain textures and with foods that can be inconsistent from one meal to the next, compared to something packaged that is pretty much the same every time.
I hated — and still do hate — socialising with strangers. New people in every class, forced socialising, ice-breakers, small talk, group assignments — I hated it. I just wanted to learn and go home. I can recall days where I would be on campus and not say a single word to anybody all day. I particularly preferred when classes didn’t have to be face-to-face, like when they were recorded and I could watch and do my work from home. It certainly helped that I was able to do most of my university studies from home, including my PhD.
I then struggled with the transition from studying at home to full-time work in an open-plan office. The lack of privacy, the lighting, the socialisation, the anxiety of phone calls, the smell lingering from the kitchen. It was manageable when I had a task to do for a few hours and I could simply put in my earphones and drown out the distractions. Everything else made it hard.
It was predominantly that anxiety that prompted a near breakdown and I sought out a psychologist. After seeing the psychologist to help manage anxiety over a few sessions, I wanted to explore the autism diagnosis process as the idea had been on the back of my mind for a few years. They didn’t have the expertise but recommended a psychiatrist in the same clinic. I didn’t like the experience with that psychiatrist and they were hesitant to label me as autistic as they thought it would be problematic for me. Luckily I was able to find a different service later that was more neuro-affirming.
I am lucky to be in a position to afford an autism diagnosis as an adult. For many people, it is not possible to invest the money, and that is partly why there are a lot of adults who self-identify as autistic. They know themselves better than any medical or allied health professional could, and that is valid.
Having experienced a not-so-good and much better experience to get diagnosed, I feel like so much of it comes back to the organisation and autism knowledge of the professionals. There are limitations to the diagnostic process but it can make such a difference when the professional actually listens to you, uses affirming language and proves that they actually understand what autism is rather than relying on an outdated understanding.
Sharing that I’m autistic with others is complicated! How I feel about it depends on the situation, the reason, the people. I am fortunate to work in an organisation and connect with professionals where it was easy to share and it was valued, but that isn’t always the case.
I remember applying for jobs with the “autism” label on my CV but basically nobody wanted to interview me, as soon as I removed that label, I seemed to receive interest – funny!?
Our research team has done quite a bit of autism disclosure research and created some guidelines to help both autistic and non-autistic people.
These guidelines also make it clear that sharing being autistic is a personal and private decision.
The main thing that’s helped me since my diagnosis has been connecting with other autistic people, connecting with people who have similar experiences, and similar ways of thinking and communicating.
When questioning whether you are autistic or not, or whether somebody you know is autistic or not, don’t assume it is a ‘bad’ thing. The best way to understand autism is by listening to autistic people and reading things written by autistic people. There is a lot of problematic autism information out in the world and it can be hard to find the right information. The best starting point is to listen to the true experts on autism — autistic people.
