I haven’t made a post about Autism Awareness Day in the past, mainly because I wasn’t diagnosed until the end of last year when I found out I had autism and ADHD. The autism wasn’t a massive surprise but the ADHD was, although that’s a post for another day!
I can remember doing an online test that went round Facebook a few years ago and seeing all these people scoring quite low and mine was up in the area of potentially being autistic, but maybe not much. I was shocked, but didn’t know anything about autism except for what’s portrayed on TV or in films – which is mainly people who are incredibly intelligent but not great socially. Or kids having enormous meltdowns.
I didn’t think that applied to me as although I knew I was fairly intelligent, I wasn’t on the gifted side and I’ve always had friends so wasn’t unsocial. But it did niggle at me a bit and at the time I was being treated for depression so saw my GP fairly regularly and decided to ask her about it at one of our appointments.
Her answer was that “we don’t diagnose autism in adults”. I assumed that was the end of it and went about my life. The niggle was still there but I just ignored it and assumed it was only something that was treated if it was obvious as a child and anything else didn’t really matter. After all, I’d gone through my life so far without it being a problem.
Fast forward to 2019 when I went to another GP to talk about me binge eating. He referred me to the eating disorders service and in October last year I started therapy. After the first session, she asked me to do a rough timeline of when I’d had issues in the past and that I could just write it on a bit of paper.
Cue me doing a spreadsheet with a line each for relationships, jobs, education, other incidents, health and probably some other things. It spanned several years and was split into 6 monthly chunks (I could easily have made this more detailed too 😂. I sent it to her before our session and apologised because I hadn’t finished it and one of her first questions was “has anyone spoken to you about autism?”. I laughed and relayed the incident with the FB test and talking to my GP.
She got me to fill in some questionnaires (which included testing for ADHD) and I waited very impatiently for the results. It turned out that I was definitely within the referral scoring but as it hadn’t really shown when I was a child, I didn’t get a referral.
But that’s ok. I don’t feel like I need to spend NHS money with extra services. I’m 44 and I’ve got this far - there are people who need them far more than I do.
I’ve done some research since then and strangely enough, TikTok has been a great source of information for me! I know, I’m far too old to be on TikTok and I also know that the majority of people I see aren’t doctors but I’ve learnt a lot.
I’ve learnt that when people talk about a spectrum, they don’t mean a line that at one end has no symptoms and at the other is full-on, really difficult symptoms and we all land somewhere on that line. The spectrum is defined as looking like a colour wheel and somewhere in that is each person with autism who has a different combination of things that affect them.
One of the most important things I’ve learnt is that women with autism are often missed because the symptoms show differently. When we have special interests, they’re more likely to be mainstream things like makeup or reading. We’re also really, really good at masking. We watch what other people are doing and copy them.
I’ve realised just how much I have done this over my lifetime, especially as a teenager and in my twenties and that contributed to anxiety and depression. I’ve let it slip a little more as an adult and I’m starting to consciously let things go now.
Another issue that affects me is having problems regulating my emotions. All the people who have known me for a while will know that I usually turn up with whatever emotion is affecting me at the time – whether it’s joy, sadness, calm, anger or whatever else. I find it REALLY difficult to deal with my heightened emotions, let alone trying to regulate them. I’ve discovered in the last few years that there are things I can do to help myself with this.
For me, I’ve learnt that all the times I saw people looking sideways at me like I was really odd or all the times I felt like I was different from those around me, now made sense. I was actually a bit odd to them and I was different from those around me. And now I accept that. I accepted it a little before I found out about autism but now I’m starting to embrace it.
The more I learn about autism, the more I understand myself, some of my experiences and reactions and the more comfortable I am with myself. Hopefully this will translate into some of my relationships and make them more comfortable too.
I’m clearly no expert and everyone with autism has a different combination of factors that affect them. Just like people who aren’t autistic. We all have a different combination of experiences, emotions and drivers that affect how we see the world.
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