Being late diagnosed myself, I feel able to talk about this. I was diagnosed earlier this year at the ripe age of 54. A very concerning age, as the average life span of an autistic male was 54 years. That’s according to an Australian survey. I have since found a UK survey that shows a better outcome for autistic people in the UK. But never the less, the quality of life is vastly reduced for all of us on the spectrum.
I was born in the 70’s, an flashy era of bell-bottom jeans, Disco, and long hair. I only had a few friends right through to adulthood, and only one at a time. I did terrible at school, I barely stayed in class for more than a few minutes before running home. There used to be a joke around my neighbourhood, who’d make it home first, me or my mum.
I would be 25 years old before autism and Asperger’s would be recognised by the DSM, and it would still be another 30 years before I was finally assessed and given the correct diagnosis. During this 30 year period I would suffer terrible depression, lost jobs, quit jobs, and absolutely no romantic involvement or friends. I realised early on the romance was impossible for me, I didn’t know it then, but I have limerance and rejection sensitivity dysphoria. This makes it impossible to have a relationship, even friendship can be challenging with RSD.
One day, I can’t remember when, but around 12 years ago I went to see my GP about depression again! We went through all the anti-depressants I’d tried, I explained that non worked, he the started asking me some personal questions for a few minutes. He then turned around and said, “Darron, you’re autistic”. Have you ever considered autism as a diagnosis?, I told him I didn’t even know what it was. He wanted to submit an application to be assessed, but I asked him to wait until I did some research on it… red flag anyone? Unfortunately that surgery closed soon after and that doctor moved to another area.
I changed GP surgery and started the process of being assessed. It would take a long time and pretty much everything I have to get there, I was rejected several times, and the process would take 6-12 months per attempt. It was down to a psychiatrist I had never met, and probably never met anyone I’ve ever met to constantly say no. During one of my serious bouts of depression I saw the mental health crisis team, I was in there for 5 minutes, I told them briefly my difficulties, friends, relationships, social anxiety etc, and they sent me away saying there’s nothing wrong with me, go read a book, How to talk to anyone, by Liel Lowndes. During this highly fraught, very stressful and deeply undermining experience I made a tiny amount of eye contact. And that was enough to refuse my application for an assessment. Even professional psychiatrists think we can’t make any eye contact at all. Therefore it’s a waste of time and resources to be tested. At best he needs to reevaluate his training, at worst he needs to be looking for another job serving burgers.
But eventually in 2024 the local health authority opened up to self-referral, I tried again, I filled in questionnaires, took phone calls, and waited nearly another year. The day finally came around, I had a 90 minute video call where we discussed my childhood and life to that point. I was asked if I had any questions, I asked one, “am I on the right path?”, the answer was an emphatic YES! Though we can’t diagnose without the observational assessment. That came three days later, and that was hard, it even surprised me at the things it brought up. So much so, when it was over I just wanted to get hammered. I didn’t, I just went home.
6 weeks later and I received the call, oh yes Darron, you are autistic. A further 6 weeks for the written report.
In the intervening time I hit the lowest point I’ve ever known in my life, but it also made me really want to understand myself more. So I started work on this dictionary. The terms and explanations for them have given me an understanding that an autism report can’t.
Late autism diagnosis can help people understand their difficulties in life, it can also crush them, I was in the middle ground.
Ironically I was able to work for most of my life, but that came at a cost, my mental health being one of those costs. But it’s thanks to my family more than anyone for the support I needed to get through it. My parents didn’t live long enough to find out why I was very different. They don’t know I’m autistic. Sadly though I’m now alone. I’m also 7 years into burnout. But for the first time in my life, I understand myself, my strategies for survival, my adaptations, and the cost they have on my mental health. I will never be whole, I never was, but now I know why.
I’ve met some other autistic people who don’t want to get assessed or are afraid to find out. Personally I’ve had it hard and I really really wanted to know no matter the cost.
What was your path to discovery?