It’s been a big week at Aisling HQ! Well, a week is probably not accurate. I guess it’s been 35 years in the making. And closer to 2 years of more intensive soul searching. But I finally did it – I had an assessment and have been diagnosed as autistic.
I’m calling it the worst kept secret of the last 35 years because all the signs were there. But for some reason not enough people put 2 and 2 together. There are obvious issues with diagnosing women. There’s also just the fact that diagnosing something usually only follows struggle, and not all of my specific brand of autism is hardship.
It became more apparent to me during lockdown. I went from spending so much time in offices, having to interact with people every day. In retrospect, this is the reason I was sick so often – it’s clear that my body was getting run down from fighting against the aspects of autism that classify it as a disability. I was exhausted, constantly burnt out, and struggling to stay afloat.
It was really tough when working for companies with quite restrictive sick leave policies. I have coeliac disease, so I could occasionally come in contact with gluten. I have issues with my mental health, which sometimes makes getting up and out of bed impossible (and is probably compounded by the autism), and then I get sick just like everyone else. It can all add up.
Then lockdown happened and suddenly I was alone for most of the day. I was furloughed for 6 months, so I could create my own schedule and work on my own projects. I started to notice more of myself coming to the surface. It’s easier to notice when you’re over or under stimulated when you’re able to feel the times that you’re not.
Nearly 2 years ago, I started working with a counsellor fortnightly and gradually opened up about my concerns and that I felt I might be autistic. I went around the houses, sometimes thinking I was fine without a diagnosis – after all, I’m not a child, what difference would it make? Then I’d just be interested in knowing once and for all. Eventually I thought it would be nice to know as a bit of an extension of myself and my career as a designer – if I could embrace my own neurodiversity, I could show that people of different abilities are at the centre of the design process for so many services people use every day.
I looked into private assessment, but it’s pricey, and while I could afford it, it also felt a bit silly to pay for it, considering I saw it as more of an optional piece of information about myself. Luckily, neurodiversity has become such a buzz word, and companies have began to pick up on it. Shortly after being promoted at work, to a level that made me eligible for the medical plan as part of my standard benefits, the company announced a new neurodiversity benefit that would pay for these private assessments.
It was a no brainer. I signed up right away, expecting a long wait. But within 3 months, I have a diagnosis. Take that, 5+ year NHS waitlist!
The assessments were interesting. Mostly because the assessors also saw ADHD flags in my answers. So it shifted a bit from “am I autistic” to “am I autistic? Do I have ADHD? What if I have both?” (Spoilers: it looks likely that it’s both at this point, but that’s an assessment for another day, probably early next year.)
I’m not sure I’ve felt more autistic than during the assessment. It WORE ME DOWN. It was 4 hours of talking about myself with only a 10 minute break between (I wanted to power through and get it done). I felt so “On” like I could not relax for a second. And when it was all over, I crashed. Hard. I slept right until it was time to find out the results. I showed up to that call a shell of my former bubbly self, and the assessor could tell.
She told me I am very engaging and personable, that I have fine-tuned my public persona, polishing it over time to make sure it was as perfect as it could be. She told me that others might not notice it, but because she was a professional she could feel how exhausting it was for me to keep up that facade, and that level of energy.
Honestly, as I sat there completely worn out and full of the emotions I am so bad at controlling, I felt so seen. It was the first time I really understood what it means to be seen.
The week (and 2 days!) since then has been a whirlwind. I’d read that people often become “more autistic” after diagnosis, and this has been the case for me. It’s like after years of running to keep ahead, I felt my whole self relax. On Sunday, I went to a store, spotted a stuffed animal – a Jellycat turtle with a grumpy face and lots of nice textures on him, and I bought it. We’ve been inseparable since then, and I realise it’s because it gives me comfort to hold something, especially when I sleep. I love the softness. I love the slight weight. I’m done denying myself these simple things that make me feel better, even if it’s a bit childish or silly.
The assessor said something similar to me when running through my diagnosis and how I met up to the DSM-V (Another spoiler: the criteria is to meet all the points in section A, and 2 from section B. Overachiever that I am, I met all the criteria in both sections). I was waxing poetic about how much I love fairy lights and she asked if I had a lot of fairy lights at home. I don’t! Only at Christmas. And just like that she blew my mind, saying that if I know they make me feel better, why don’t I surround myself with them.
Brilliant. Genius. Inspired. So obvious.
I’ve also been dealing with the expected grief following diagnosis. Wondering why I didn’t get the help I needed when I was younger, and wondering what I’d be like now if I had. Feeling very sad for my young self who I can now see was bullied for being different, and she didn’t even realise it at the time. And also just feeling loss for the fact that I now know that no matter what I do, no matter how many new notebooks I buy, or routines I try to follow, or how much I try to hype myself before a social event, I’m always going to be fighting against something. My life is always going to be exhausting. That sucks.
And I’ve been celebrating what I have done! At the end of the day, I took a childhood special interest, turned it into my career, and have excelled in that area. I feel like this is also opening doors around my own working habits, and that I might be able to apply what I learn to create a better working environment for myself.
It’s still early days, and I only have my first therapy session since getting the news tomorrow. But I’m glad I’ve gone through with it, and I’m looking forward to seeing what happens next.