I talk a lot about my mental health, but I don’t often talk about what my actual diagnoses are, getting diagnosed or how they affect my day-to-day life. I’ve decided to go in chronological order of when they first appeared, and so part one is autism.
Autism is genetic, and so will have been something I’ve had since I was born. However, because I’m female, and fairly intelligent, I wasn’t actually diagnosed until last month (aged 24). This is a common theme – those with higher intelligence, women, and people of colour do not get diagnosed at the same rates as white boys with average or lower intelligence, for a multitude of reasons. Despite my brother being officially diagnosed as a child, and my dad self-diagnosing around the same time, it was assumed in my family for a long time that any traits I had were picked up from living with two other autistic people. It wasn’t until my community mental health team suggested autism that I took it more seriously and started actively pursuing a diagnosis. I was diagnosed much quicker than most other adults because usually you have to wait to see an autism specialist – who are underfunded and oversubscribed. My psychiatrist, who I was seeing for other reasons, diagnosed me himself with resources from the autism centre because they refused to take me when I already had someone who was capable of giving me an official diagnosis.
Here are some of the symptoms that affect me:
Executive dysfunction: Executive functions affect (but are not limited to) things like goal formation, planning, staying on task, self-monitoring, memory, and attention. This is probably my biggest struggle. My main problems lie in planning, following routines, staying on task and short-term memory. In terms of planning things, I have to say the steps out loud in the order I’m going to do them, and usually for a couple of minutes before I can even start. I have to continue saying the steps as I do them because otherwise I will get confused and do them in the wrong order, or miss something out. This also counts for routines. You’d think that after almost 25 years I’d have learned, but if I don’t follow the exact same morning routine every day I miss something out – like brushing my teeth or putting on shoes. On really bad days I have to set alarms to remind me to eat and go to bed because otherwise I’ll just forget that food and sleep are necessary functions for survival. Staying on task can be hard because I get really easily distracted, like in the middle of a conversation I’ll forget I’m talking and just walk off, or I’ll lose my train of thought because there was a noise outside or the sun went behind a cloud. To help me stay on task I have to hyperfocus on it, which I’ll get into later. Memory is a thing that’s got worse as I’ve got older, and I’ll often ask the same questions over and over again, or forget information that’s just been told to me. As that’s recently worsened, I don’t have many strategies beyond just writing it down.
Stimming: A stim is a – usually repetitive – action that relates to an emotion. So even as an adult, I suck my thumb to calm or settle myself, especially at night, although I’m trying to replace this with a chewable necklace since recently I’ve been biting my thumb in my sleep to the point of breaking the skin. I don’t know how to explain it, but sucking my thumb brings such an immediate and overwhelming sense of comfort and relief. Fidgeting is something I do when I’m nervous to calm myself down, and I especially like to plait or twist pieces of material, or slowly spin my fidget spinner. When I’m panicking, I shake my head and flap my hands, and when I’m really happy or excited I bounce on my toes and “buzz” – small shaking movements in my upper body, like when someone gets electrocuted in a cartoon. When I feel these emotions, I will make these actions, but at the same time I can make myself feel more calm or more happy by doing these actions.
Hyperfocus and special interests: Hyperfocus is what I call when I have to really concentrate on something. It probably has a proper name that is something different, but it just means that I zone out of everything except the thing I’m currently doing. This means I won’t notice things happening around me – like that gif of Stan Lee sorting records while Spiderman fights in the background, I will be completely oblivious to my surroundings. This links in with special interests – sometimes when I’m doing something related to my special interests I will hyperfocus on it without meaning to. Special interests are just things that autistic people latch on to and try to do the thing or learn about it as much as possible. Current special interests of mine include reading, certain youtubers, and names. I read at least 50,000 words a day whether on news sites or fiction, I will try to learn as much as I can about the youtubers I like and I can spend literal hours on baby name websites seeing what names mean, what variations in spelling there are, what’s popular, or what names are related, and I find all of these things really fun and relaxing. This is different than my non-special interests such as music and politics, which I just enjoy doing or discussing but not on the same level, and I would never hyperfocus while doing these.
Sensory: Similar to stimming, certain external stimuli can overwhelm me or make me feel better. So touching soft things, or putting my hands in still water, makes me feel calm and happy, while even the thought of touching velvet makes me want to rip my hair out and throw up. Some of my physical senses are more sensitive than the average person, and some are way less sensitive, like smell. I can’t really smell stuff unless it’s very strong, or very close to my nose. It’s only recently occurred to me that maybe baths smell when you put bath bombs and that nice bubble stuff in them. To me, I can smell a bath bomb if I hold it to my nose, but not once it’s dissolved. I can also get sensory overload because my brain can’t filter things – so if I’m in a busy restaurant I can hear the music, the chairs and the cutlery scraping, the traffic outside, and every single conversation happening around me at the same volume. Or if I’m already nervous or frustrated and there’s a light breeze, it feels like the wind is touching me as solidly as a person. This can be a lot for my brain to cope with, and if I get sensory overload I will sometimes shut down slightly and stop talking or moving in order to try and limit the things that are happening.
Scripted speech: I was considered pretty good at customer service in previous jobs, and I’ll be honest it’s entirely down to scripted speech. This is where someone asks the same questions or has the same topic of conversation every time within a certain context – for example, the famous “would you like fries with that?” Once I’ve learned you’re into cars, you can expect that topic to dominate a lot of our conversations because that’s been added to the script I use when I talk to you as a topic that gets positive reactions.
Those are probably the top five symptoms I have, although there are others. My experience with autism is not the same as everyone else’s, and some autistic people may have completely different symptoms, or different expressions of the same ones. I hope this has been helpful in understanding how autism affects my everyday life and makes my experiences different to those of someone who is allistic (not autistic).