“It Was a Long and Costly Process”: What It’s Like Getting an Autism Diagnosis as an Adult
For outside observers, my autism diagnosis at age 27 appeared to have come out of the blue. Perhaps they understood me as anxious, awkward, blunt, weird, highly-strung, sensitive, rude, overwhelmed, exhausted, odd, erratic, intense, stuck up, or strange… but autistic? No, surely not.
I know plenty of autistic people can relate to this, the ‘you don’t look autistic’, and ‘you must be very high-functioning’ kind of comments that can come along with disclosure — particularly for anyone who does not fit the ‘young white male’ mould on which autism diagnostic criteria was built.
This is because culturally, the understanding of autism is still quite limited — partly because of the legacy of that mould, and also because of how autism is most often portrayed in media — all meltdowns and maths geniuses, and nothing in between.
People comprehend autism through the lens of a small number of behavioural characteristics — certain outward presentations that capture a fraction of what the experiences of being autistic might be like.
Autism is also very much still considered a childhood condition, as though we disappear when we turn 18, and so ‘you are not like this autistic child I know’ can be another common reaction. I don’t know many non-autistic adults who resemble non-autistic children in their behaviours, but that does not seem to be of consequence to sceptics.
For me, being autistic is a bit like this: my sensory experience of the world is dialled all the way up, which means there is a tsunami of information to be processed at any given moment, and my brain can have a hard time with that — especially with insufficient time to rest.
My nervous system is often activated in a heightened way, stuck in ‘fight or flight’ for extended periods of time. This is further heightened with extremes such as loud or layered noises, bright lights, intense heat and humidity, large groups of people (or anything more than a couple of people at a time), unexpected changes to routines and plans, emotional distress, and certain times in my menstrual cycle.
This prolonged stress manifests in many ways, from chronic tension pain such as tension migraines, jaw pain, back and shoulder pain — to anxiety, trichotillomania, digestion issues, experiences with disordered eating, insomnia, exhaustion, fatigue, emotional flooding, shutdowns, and meltdowns. I also have auditory processing challenges and executive functioning challenges which deeply impact my life.
I believe that there are also heaps of strengths I have because of how my brain works, however, my strengths were not what led to my seeking diagnosis. Therefore, I do not see my diagnosis as random — I see it as an inevitability.
My coping mechanisms and strategies worked (barely) until they didn’t, and I was in a privileged enough position to seek professional insight. It was a long and costly process, taking many months and costing more than $2,000, and it did not leave me with any further support.
The benefit, for me, was the self-understanding that came from learning this key piece of information about myself, and the ways in which I could change my life to accommodate my needs moving forward. It goes without saying that more structural support is needed for autistic adults (and children, and families).
Now, I follow this with the caveat that no autistic person owes anyone their diagnosis, their psychologist’s report, their list of traits, their life history, or their hardest moments. I share because I want to, because to actually grasp what it is to be autistic is not to look at the outward presentations and draw your own conclusions about how much support a person might need, or ‘how autistic’ you think they might be. It is to listen to autistic people, including those who are non-speaking, when they tell you their experiences of moving through the world.
The more people you learn from, the deeper your understanding grows–layer upon layer upon layer. You will be a better friend, family member, co-worker, and ally.
There are, of course, autistic people with higher support needs than me. But having worked in classrooms, respite homes, and support services with young people with high support needs — and now as a parent and carer to an autistic child — I do not see this as an ‘us vs them’ situation. A broader understanding of autism benefits us all.
It also needs to be understood that the sobering statistics we see around autistic people — that 70 percent experience mental health conditions such as depression and anxiety, that autistic people are three times more likely to experience suicidality, that autistic people experience eating disorders at much higher rates, as well as sexual assault. These also apply to autistic people who have families or friends or jobs or TikTok accounts or whatever erroneous metric people might point to as proof that someone could not really be autistic. And that lack of understanding is not on autistic people — it is not our deficit to remedy.
For those wanting to support autistic people in their lives and communities, my advice is this:
Research shows that protective factors for autistic people, so, things that will help or minimise the risks of outcomes such as poor mental health and suicidal thoughts and behaviours, are social supports. That is — feeling understood, accepted, cared for, loved, and being a member of a larger social network. So, this Autism Acceptance Month, listen to autistic people. True inclusion starts there.
Kay Kerr is an autistic author and freelance writer. Her book Love & Autism is out now.