Getting an adult autism diagnosis by Kay Kerr

It is hard not to romanticise my autism diagnosis. When a lifetime of seemingly random and unrelated struggles is contextualised with one key piece of information, there is much to be thankful for.

Knowing this about myself, that I am autistic and my brain works in a different way to other people’s brains, has given me the understanding to make big changes, to build a life that works for me instead of struggling against my own nature.

But to go back and think about how I actually felt around that time, is difficult. As a 27-year-old undiagnosed autistic woman who hit burnout and could not figure out why I couldn’t cope with my own life anymore, it was a time full of uncertainty, shame, anxiety, and exhaustion.

In telling this story, to start at my diagnosis would be like opening a book halfway and trying to make sense of the story. Autistic burnout is a turning point for many people who seek diagnosis in their adult years, and it can take a lot to get there.

For me, it took years of overdoing it at work, of over-committing on weekends, of masking my way through more outings in a month than I now have in a year. It was a growing collection of shameful social missteps, sewn together like a patchwork coat, slowing me down a little more with each new addition. It was more than a decade of dulling sensory input and overwhelming anxiety with alcohol, disengaging with my own emotions in order to be able to bear them, and giving less in my relationships than I wished to give. For me, burnout was the point where all of that stuff won out. It was an inevitable endpoint to an unsustainable way of being. I could no longer work, sleep, socialise, or function as I did before. After a holiday in New York brought home how little I was coping, I started my Google journey. Searches such as ‘sensory overload’, ‘light and noise sensitivity’, and ‘sensory fatigue’ eventually led me to some first-hand accounts from autistic women. Their stories helped me to find the thread that was woven through my sensory, social, and processing issues.

If only I had known to search for ‘adult autism diagnosis’ from the start. That was the thing though—my understanding, even as someone with a history of working in classrooms and respite homes with autistic children, was limited. But once I started reading more from autistic adults, I knew. There was a disconnect with the way autism can be described in medical terms, and my own experiences. Autistic adults bridged that gap, and gave me a fuller understanding of how a list of symptoms can look in real life, of the ways in which my autistic traits can differ day to day, and what a spectrum actually is.

The next step was finding a psychologist who specialised in diagnosing autism in adults. I got the sense, when I was dismissed by a GP because I could make eye contact, that I would have to become a strong self-advocate if I wanted answers. It should not require the emotional toll it did, and I hope the process is easier now.

I was lucky enough to find a psychologist who was relatively local, with a three-month waitlist. The price tag was just shy of $2000, which I understand covers a lot of specialised work, and feel should be fully Government subsidised.

The assessment day was one of the most intense of my life. Suppressed emotions reverberated through my body until I physically shook, and once I started crying I found it hard to stop. There were questionnaires, interviews, with me and my partner, rehashing of my hardest moments, and more questionnaires. It took about four hours, and I left feeling like a husk. I slept for days afterwards, needing my doona to act as a barrier between me and the harshness of the outside world. I was raw, vulnerable, and deeply fatigued.

The report that came through on email didn’t tangibly change anything in my life, but it changed the way in which I live it. What could have otherwise felt like an extremely isolating experience was made easier by connecting with the autistic community online, and I know more support is needed around diagnosis for many people.

So without romanticising anything, it is fair to say I now know my strengths, plan around my support needs, and grant myself rest and forgiveness on the days when things are too much.

If you would like more information on assessment and diagnosis, contact the Amaze Autism Connect advisors on 1300 308 699, email [email protected] or use the webchat on this site.

About Kay Kerr

Kay Kerr is an autistic author and freelance writer, based on the Sunshine Coast. Her book, Please Don’t Hug Me, is out now. You can find her work at kaykerr.com