"You're autistic". great, now what?

I was diagnosed autistic when I was 30.

Far from it being this glorious, life affirming moment, it just made me depressed. Then mad and annoyed. Then depressed again.

You read a lot of stories of people getting their diagnosis and suddenly everything falling into place. Alas, this was not the case for me. You might be wondering why on earth I went for an assessment in the first place, what was I expecting?! The truth is I wanted to be told there was something “wrong” with me. I was just hoping that the “wrong” would be easily treatable with a pill that would make me normal again.

It was my therapist in my eating disorder treatment who referred me, and at that point I was willing to undergo any assessment they sent me for. I wanted to be told I had an illness, that there was something wrong with my brain chemistry, not that I had a neurodevelopmental condition that fundamentally made me who I was. That didn’t sound like something a pill would fix.

I might actually have to start accepting who I was, which felt pretty terrifying. 

I’d always felt different, like there was something wrong with me that I needed to hide from the world. I didn’t have a huge amount of friends as a kid. I made a best friend in someone who was outgoing and talkative, who would fill the silences when I didn’t know what to say. She was my anchor in school, and on the rare occasions she was off ill, I was like a rudderless ship, floating around the playground not knowing where or who to land with.

I’d rehearse phone calls before making them, and I remember frantically planning what we would do on a sleepover. My house and home with my parents and sister was my safe place, where I didn’t feel like I had to hide.

I remember not wanting others to come into our world, as when they did, I didn’t know who I was anymore. 

School was fine, great even. I was bright and did well. I loved learning, the structure was comforting and I knew exactly what was expected of me.

Food, however, started to become a coping mechanism. I would binge after school and whenever I felt stressed. I never knew why I was stressed, or even that it was stress. Just that I had big feelings that felt so uncomfortable I needed to get rid of them, quick. And it worked like a dream, initially. Until I slipped into bulimia and then those cycles of binging and purging could last all day. 

When I was in treatment for my bulimia and depression I remember wanting so badly to be told I had some incurable disease. Every blood test and scan I had I would hope for a bad result. Crazy, right? I think the reason I wanted this was because that felt easier to explain to people.

I wanted something physical, tangible, that I could latch onto.

When my therapist raised the idea of an autism assessment I’m not sure I paid much attention to it, other than the fact it was an assessment, and assessments meant someone could tell you what was wrong. Sign me up.

Maybe part of me believed they’d say “you’re not autistic, but you do have x condition which we can treat!”. Obviously they didn’t, and I walked away with pages of writing telling me how I have a brain that works in a different way. A condition which is a fundamental part of who I am and won’t change.

Brilliant.

All I’d ever wanted was to be seen as “normal”, and that dream had just been well and truly crushed. 

I rejected the diagnosis for a long time.

Telling myself that was just one person's opinion, it might not be true. But the longer I sat with it, researched it, and read stories of other people diagnosed late in life, the more I came to terms with it. A lot of my reluctance was down to my own prejudices about autism. Sure I’d read about all the myriad of ways it can present in people, but my brain always went straight to the stereotypical image of a maths genius rocking in the corner. And I didn’t want that to be me. Or more accurately, I didn’t want that to be other peoples perception of me. 

As my difficulties in life and work persisted, my reluctance to look to my autism diagnosis for answers became harder and harder. I could no longer brush off the problems I was experiencing as all down to my job. The idea that the next job would somehow be different was starting to feel like a lie.

If I was in fact autistic, it would explain a hell of a lot.

Like why I was always exhausted after social events, why I struggled to ever know how I was feeling and process my emotions, why masking my real self had become second nature, and why certain environments made my nervous system want to self combust. 

One thing I have come to accept, and prioritise, is rest. The fact that I need more of it than some people. I always resisted this, seeing it as some kind of failure in my ability to cope with life. The truth is my body, or more likely my brain, needs time to recover. Yes, I can appear social, and yes, I even enjoy it (sometimes). But the reality is I then need time to rest, on my own, preferably in the dark. Not doing this is what leads me down the path of burnout, and is why a full time people-facing job is just not something I can maintain. 

Emotions, my own emotions, are like a foreign language to me.

I’m often the last to know how I’m feeling. My body knows, it just doesn’t seem to be able to communicate with my brain. Anxiety can feel like a complete silencing of my brain. Far from getting racing thoughts and worst case scenario thinking, my brain goes quiet. It’s like it goes offline, zoning out and making it impossible to complete even the simplest of tasks.

Meditation has helped with this. The act of sitting, with no expectation, to just observe what’s happening in my weird and wonderful brain. Free writing is also a great way to bypass the thinking brain, and get out on paper what you’re feeling. It’s the act of writing, without any goal or thought. Just seeing what comes up. 

Understanding your own brain is probably a life long task. They are such complex places to explore that we’ll probably only ever scratch the surface. But once you know even a little bit, it enables you to live in a way that supports your own well-being.

And that is a truly magical way to live.