2024: The year I broke The Code
Coming out, for a second time
I’m beginning to write this on a cold, summer’s night, and in all honesty, I don’t quite know where it will end up. But life isn’t meant to be a straightforward road, is it?
I’m Dave. I’m 32. I’m bisexual. And… I’m autistic.
It’s been a long journey to get to the point where I am able, and feel comfortable saying that I am autistic. I’m not ashamed of it. I’m proud of it. Because it represents me.
In some ways though, this does feel scarier than coming out as bisexual at 23.
So, why now?
Part of this is understanding myself better as a person. I’ve thought about autism a long time, on and off, stemming all the way back to my school years, with events in the intervening years bringing the thoughts occasionally to the surface.
It’s the word that I didn’t want to face head on, as if it was a ‘trigger’ word associated with bad things, and bad things only.
But during the COVID pandemic, the thoughts came back. New experiences, such as dating, leading a team at work, and online gaming, made me think about autism ever more. I confided in a friend, which encouraged me to discuss it with a therapist in early 2023.
Suffice to say the therapist wasn’t exactly surprised when I mentioned neurodiversity to them! What followed were some assessments to check for both autism and ADHD.
The process
The AQ50 test consists of a list of statements in which you label each on a scale of ‘definitely agree’ to ‘definitely disagree’.
“I find making up stories easily” - not me. (definitely disagree)
“I am fascinated by numbers” - oh, really? (slightly agree)
“I am often the last to understand the point of a joke.” - wait, I was meant to laugh in response? (definitely agree)
“I like to carefully plan any activities I participate in.” - my ability to memorise directions baffles people. (slightly agree)
Across the whole population, the average score is 17 out of 50, and anyone that scores 26 or more suggests that you may be on the spectrum.
I scored 34 out of 50. A significant indicator, if I needed one, that I may be on the spectrum.
I completed the tests in June 2023. Armed with the AQ50 test, I went through the NHS Right to Choose process, with my GP formally referring me to an NHS provider. That process began just before Christmas, with lots of form filling on my side.
Once the forms were complete, it was a waiting game to find out when my assessment would be.
That day came, on July 1st, 2024, a fantastic way to spend the morning of my 32nd birthday, I can assure you. A near 90-minute call went through the assessment forms, before coming to an initial conclusion.
Six weeks later, on August 16th, 2024, I had it confirmed in writing: I am on the autistic spectrum. It was the outcome I wanted, and I’m happy (even if emotional) that I can finally say that.
The outcome
Level 1, which is what I am currently, is the mildest of the three levels as defined in DSM-5. What does level 1 mean?
Level 1 ASD describes people who do not need a lot of support. People with level 1 ASD may have a hard time communicating with neurotypical people, including their peers. For example, they may not say the right thing at the right time or be able to read social cues and body language.
A person labelled with ASD level 1 is usually able to communicate in full sentences most of the time, but may have trouble engaging in extended, back-and-forth communication with neurotypical people. They are likely to have social anxiety and may experience burnout from long term masking, or acting neurotypical.
They may also have trouble moving from one activity to another or trying new things. Additionally, they may have problems with organization and planning, and independence for them may differ from neurotypical expectations for people their age. (Source)
This isn’t a complete list, but it gives an idea. It is important to add as well that the three levels act as a guideline rather than a firm set of rules, it’s one of the many tools in the autism space used for diagnosis.
There’s other things I struggle with that are not covered above, for example, it doesn’t take much for me to become irritated and frustrated with something.
On the whole though, I relate to the paragraphs above. If you’re someone reading this who knows me in the outside world, you may see some of me above. Which is cool and okay.
While autistic people do struggle in some areas compared to neurotypical people, we have strengths (almost super-human) in other areas: our attention to the small details, our kindness and loyalty, our inquisitive nature.
Receiving the report and formal diagnosis hit hard, and seeing it written with my name next to it made it real. Reading statements that I have recognised in myself for years felt weird, but not unexpected.
I’m thankful to have a close support network around me, all of whom have been supportive recently. The news that I am autistic is not a surprise to me, but offers me clarity that I did not have before.
I said earlier that this is about me understanding myself better. It’s also about helping others to understand me better.
“Oh, it’s Dave being Dave.”
No, it’s not “Dave being Dave.”
It’s “Dave being Dave, because he’s autistic.”
It’s not an excuse. It’s a reason.
It’s not me being awkward for the sake of being awkward.
I couldn’t say those words before I had a diagnosis. Now, I can approach life with a new found sense of knowledge.
To those who have supported and helped me in recent years directly or indirectly, I cannot thank you enough.
If you noticed years ago that I might be autistic, and made reasonable adjustments to include me from that point forward, I’ll always remember that. And if you didn’t notice, that is okay, because we are all different, with different lived experiences.
There will be challenges ahead (there always are), but that’s for another day.
So, to quote this year’s Eurovision winner Nemo, yes, I have broke The Code*. My own code.
And I’m proud to finally say that.
PS - Why the Nemo references? Nemo’s song The Code relates to their own internal struggles with non-binary identity before, in their words, breaking the code. I relate to that, albeit from a neurodiversity perspective. Their song is something I’ve listened to a lot since they won Eurovision.
