10th September, 2022

A self discovery at 30

As I'm sat here writing this post, I'm having a hard time deciding how much to share with the entire world, although let's be real, there's only a handful of folks who read this. It may change your perception of me as a person, and I think that has been a blocker for me talking about this more openly. I'm worried friends will see me differently. There's also feelings of fraud and sadness but also relief and acceptance.

I don't really know the purpose of sharing this, but I feel like it's something I need to write. If you've read some of my previous posts, you'll know I've suffered from burn out and massive social anxiety, leading to therapy to try and process it all. I've always felt a bit different, but like I can somehow adapt and change myself to fit into most situations. I just assumed it was my childhood, particularly ages 10-18 or so, where I developed those traits. There was a lot of trauma at that age.

It was only since I was no longer working, and starting looking more inwardly that I thought there might be something else going on. I was scrolling through TikTok one morning and a video came up that really stuck out to me. You always get these videos that suggest you might have certain conditions like "5 signs you might have ADHD" where the creator lists out things like forgetting your keys. I tend to just ignore them even though a bunch of what they talk about often applies to me in some way. However this video was different. I hadn't realised my own misconceptions about autism before. I felt like every single thing they spoke about applied to me very deeply. They also spoke about Embrace Autism, a website with a bunch of tests to see if you might be on the spectrum.

I hurried to the site and took the first test, the Autism Spectrum Quotient test. I scored a 34. 80% of autistic people score 32 or higher with 26 being the threshold that you might be autistic. I wasn't sure how to feel, so I took it again just in case I'd gone too fast and skipped over something. The score remained 34. I thought I should take the others to see if it was a fluke. Every test I took, I scored well within the range of "highly likely to be autistic". I watched some YouTube videos on the topic, and one of the creators said "autistic people tend to take all of them" which was funny and comforting.

However I wondered how could this be? Could I really be autistic? How have I gone through 30 years of life completely unaware that there might be something neurologically different about me? How did no one see this sooner? What could they have done? Would I have been different for knowing sooner? So many questions.

The test for masking (RAADS-R) really illuminated things for me. 130 is the mean score of autistic people, and 160 is very strong evidence of autism. 227 is the maximum score from the seminal paper. I scored a 174, so pretty high! It made sense since I never felt like I could be myself when I'm not alone. I was always changing my behaviour to fit in around people, and it was the thing that was causing me so much anxiety. I would always be watching how other people were behaving, and try to mirror that. If someone touches their face, or the way they laugh at jokes, or even hold eye contact. I just thought this was normal and everyone did that to a certain degree. It hadn't crossed my mind that I don't really know how to read people, and have a hard time processing when people don't say how they feel literally.

I text my Mum, and asked what I was like as a kid. She always said I was shy and quiet but I wanted her to expand on that. How did I behave? How did I interact with others? I didn't tell her what it was yet. She said I would freak out if I got anything in my shoes. I would cry to her to help me, she would shake them out, and there would be a grain of sand inside. She told me if I ate a sugar doughnut, I would hate having the sugar on my fingers. Most children would just lick the sugar off. My brother would make mud pies with his hands, but I would use sticks, or just stay back and watch, not wanting to get dirty. I loved being read to quietly, and being cuddled up. I loved going to my Nan's house because she would do puzzles with me, take me on walks to feed the ducks, and let me nap.

My nursery called my Mum and asked if it was ok to put me in a group for children with learning difficulties. This worried her, but the nursery said I was more than intelligent enough to be with the other children, I just worked better in a smaller and quieter group. I would hate my Mum leaving me at nursery. I'd hang onto her leg. At this group called Tumble Tots I would know all the words to the songs because I would sing them in the privacy of the car, but as soon as I got there, I would just sit on my mums lap, not participate with the other kids, and not sing along. I always wanted to go on rides at theme parks, but then have such a serious look on my face like I hated it. As soon as the ride was over, I didn't want to get off. We'd have to go on it at least three times. I was always a quiet kid. When my younger brother was born, I was a bit louder but not a lot. If we both went to the shop together, I would look after the money since I was the eldest, but my brother would be the one to ask the shopkeeper for what we both wanted.

It was very emotional hearing all of this stuff about me as a kid since I don't remember a whole lot of it. I just sat in bed and cried while I read her messages. I told her I might be autistic, and a lot of what she told me kind of confirmed it in my mind. Thinking about this little boy that was clearly struggling with the world at such a young age, but finding comfort in being in quiet spaces with interesting things in front of me. Not too different to the current day! It felt like my whole life was a lie somehow. I was looking at those experiences through the new lens of autism. It was like I was grieving for my younger self—the quiet little boy.

Once I got past that, the feeling of fraud came. Because it hadn't been confirmed by a medical professional (and still hasn't) could I really say "I'm autistic"? I don't know if seeking a formal diagnosis will help me in any way. The NHS waiting lists are stupidly long, and going private isn't much better. Part of me thinks it will help confirm my feelings, but part of me doesn't want to label anything. For now, self diagnosis is enough for me.

I want people to know so they can understand if I'm a bit blunt, or need them to be more direct with me, but at the same time I don't want my friends to see me as a different person, and I don't want any special treatment. There's a real risk for autistic people that they lose some of the safety that masking affords them when they behave more authentically. There's still a lot of stigma and stereotyping, and if I told people up front that I'm autistic, they might have negative preconceptions about me. Masking is ok for me but it takes so much energy to keep it up, and I hate that I can never be my true self around others. I would love to drop it completely, but I'm not sure it will ever be possible.

All of this happened at the beginning of June so it's been a few months. I've been more aware of my behaviours and certain things I do that might be attributed to being autistic. I didn't realise how much I stim (self-stimulating behaviour). I touch my chin when I ask for something from a stranger. I always pick at or bite my hands when I'm feeling anxious. My eye contact is atrocious. I get completely absorbed in my interests such as photography, coding, designing, so much so that I forget to eat certain meals, or I suddenly realise it's 4am and I should have gone to bed hours ago. It's made me wonder how much other people have noticed my quirks over the years, and it's kinda funny knowing they probably just thought I was an asshole for ignoring them or being too blunt.

I'm not going to lie, it's been hard processing all of these feelings. Even writing this has been kinda tough, watery eyes and all that. I feel like starting therapy again could help, but I'm lucky that I have such a supportive partner who has encouraged me to get to know myself on a deeper level. It's made dealing with this new discovery a lot easier.

I don't really know where I was going with this, and I don't really know how to sign it off. Hopefully reading this hasn't negatively impacted your perception of me. I appreciate this was a longer and deeper read than normal, so thanks for reading to the end!

If anyone has gone through something similar, then I would love to chat about how you've dealt with it!

Sam