It’s hard to know where to start this post.
Do I start it as a child where I knew I wasn’t quite the same as my peers? Do I start it as a new parent where things suddenly started to become apparent that I’d not noticed before? Do I start it at the point where hilarious internet memes stopped becoming funny and relatable and started becoming spookily, almost offensively relevant? Or do I start it in September when I had a meltdown and impulsively sent nearly £2,000 of my tax bill money to a private local autism diagnosis service because I was at breaking point, and knew something had to change before I hit rock bottom? (Again.)
A private assessment happens quite quickly, as it turns out. (I love the NHS but crikey, it’s not fast.) Within a day of payment, I had appointments for an ADI-R, ADOS-2 and final feedback – all within 6 weeks. The latter could have happened sooner, had I not been away in Liverpool. The appointments themselves were completed partly over video conferencing and partly in person, and by two different qualified professionals to national guidance i.e. as they would be done via the NHS.
I was concerned that, despite my issues in various areas, my learned ability to socialise and my high-energy chatting would make it more difficult for the assessors to uncover the more subtle symptoms I feel I carry. Both reassured me that there are plenty of people who receive an autism diagnosis regardless of where they sit “socially” on the spectrum.
And that brings us to the feedback, which I received morning of October 29th. It was agreed by the assessors that I met the diagnostic criteria for autism. Both also strongly recommend I get a separate ADHD assessment, which I can get either privately or via the NHS.
Hindsight is a wonderful thing, and if I sit here and think about it, I can give you stories as far back as my memory will take me on the ways in which I didn’t quite fit in. I can tell you of ‘behaviours’ that I’ve always done without a second thought, from the minor (cutting labels out of clothes, adjusting socks and tights so the seams don’t run across my toes) to the more dysfunctional (lack of understanding of social taboos including a proclivity for taking my clothes off in inappropriate situations). My very career stems from a teenage ‘special interest’ that saw me spending 16hrs+ a day at a computer soaking up as much info as I could process. I wouldn’t have to go very far back in my blog post history to point you towards things I’ve said which seem like reasonable truths to me but others take as offensive, harsh, or unnecessarily blunt. I have obsessions and issues that I mask and hide because it feels safer to do so. I struggle with scenarios that other people find easy. But that’s just my personality, right? We all have our foibles.
Apparently not so much.
I don’t feel the title of this post is hyperbolic. I already feel ‘different’ for knowing. The diagnosis isn’t a surprise, I have been fairly certain that I am autistic for some time. What is a surprise is how big of an impact hearing those words would have. To have years of questions and uncertainty validated and explained in a moment. I cried. I cried for the time I have lost to wondering, and I cried for the gains that I will make knowing who I am.
The possibility of ADHD is a bigger shock; it’s only something that entered my mind very recently. It makes sense, SO MUCH sense, but I think I need to come to terms with my first diagnosis before sticking another one on top. (I retain the right to change my mind on that.)
I won’t receive the written report for a few weeks or so, but the results are clear: I am autistic. And I’m OK with that.
Lead photo by Simon Maage. A sunrise seemed appropriate.
08 Dec at 5:35 pm
I am nearly 31, and just got an accurate diagnosis a couple of years ago. I’d been slapped with anxiety, bipolar disorder, depression, flat out just being called a ditzy weirdo (by my family nonetheless) for so many years that I basically just constantly spent my whole life thinking “Why cant I just be fucking normal?” It took until this year for me to start realizing that just because some people like myself are “different” does not mean there is a single thing wrong with that. I may not think “like normal people” and that’s okay. Though I will say it’s annoying to be perceived as someone with no emotion or social skills constantly. That’s probably the most annoying stereotype.
I am not anti-social. I WANT to be social. I just have trouble fitting in. I don’t enjoy constantly having few friendships, but I don’t align with a lot of society. I DO have feelings, and no I don’t mean to hurt other people’s feelings by not seeming to care. I care, and I care a lot.
Don’t let it get to you too much, it’s a learning curve on how to navigate a fast paced modern world with autism, but there’s a lot of great stuff about it too. You see a lot of beauty in situations others dont, and you find some fun stuff that others overlook!
Congrats on the diagnosis. And I say congrats because now you have that relief and almost validation that has plagued you so long. You’re free to be you, and that’s a very special thing Jem!
03 Feb at 10:19 am
Thanks for sharing your experience Shanae. Your comment rings true on so many levels!
30 Dec at 2:18 am
This is such a late comment, but I just saw it, and I can’t imagine everything you’ve been through, and that’s including your childhood. As someone on the spectrum myself, it’s hard to hear how “different” you are, or how you’re “a weird kid”, and you yourself do not see it this way. We only know how our brains work; it did not, and will never, occur to us that we ourselves were different, we just did things differently. Different is good, and I will never not believe that.
I adore you (platonically? Professionally? Acquaintance-like?), and I hope you know that this will not change people’s perceptions of you, not the people who truly know you. We see YOU as a human with emotions and feelings and joy. You could be diagnosed with gout tomorrow, and your true friends, family, and peers would not bat an eye.
All the luck to you, and here’s a glass to you getting answers. *raises a glass of Sprite Zero bc I don’t drink either*
03 Jan at 12:04 pm
Thanks Tess, I appreciate your kind words.
03 Feb at 4:35 am
A lot of autistic people are getting diagnosed later in life, and I’m glad for it. Having had the answer to so many questions in my early teen years was helpful, but I’ve only been able to properly articulate my experience as an autistic individual about 1-2 years after things that happened; I just lack the words in that time when they’re happening, mostly.
I honestly always thought you might be autistic, especially given some things you’ve done (including to me), but I didn’t bring it up (and honestly hoped it wasn’t true…) because your Panty Awards, for which I hated you with the same fury I put into the person who was a special interest of mine, were the complete opposite of the innate sense of justice a lot of autistic people have (but then if you’re an HD autistic, it does make sense 😅 TikTok creators share that their ADHD and autism fight all the time).
Anyway, just wanted to say congrats.
03 Feb at 10:18 am
I think the pants awards came from a place of “this is the one right way to do web dev and if you disagree you are wrong”, so quite typical if you think about it. I think it was also reflective of the situation my life was in at the time. With the benefit of hindsight, age, a completely different set of circumstances, inner peace, acceptance and all that jazz – I acknowledge that I should have and could have approached it differently and helped more people.
Thank you for sharing your experience.
14 Jun at 9:22 pm
I also recommended you for the Autism Observer, a directory of blogs by autistic people. They tend to find you even if you’re not recommended, if you so much as mention your autism once. It’s kind of cool and brings together the community a bit.
Not required, though, as there is an option to opt out.