Sunday, November 24, 2019

Being diagnosed with aspergers at 25

Days before my 25th birthday, I was finally diagnosed with aspergers, a part of autism spectrum disorder. I had no idea I had it until I started seeing a new psychologist when I was 22 - she asked me if I had ever considered it during our second session. I had not, and it absolutely blew my mind, the more I learned about it. Fictional characters I sympathized with (for once) like Lisbeth Salander, Sheldon Cooper and Temperance Brennan all are suggested to have it. But all of this meant I had to get to know myself all over again. How much of ''me'' is autistic traits? I thought I was just an INTJ! I've still got a long way to go, but I've learned a lot about myself, and wanted to be open about this, Girls and women on the spectrum are often missed, just like I was, and we tend to get diagnosed DECADES later in life than boys. So if this can help anyone, that would really make me happy.

I've always known I was different, since I was a small kid. I had no idea why. Was it because I was a nerd, and later because I was alternative or depressed? But even as I got older and lived my life the way I wanted to, there was still something that felt off. Looking back I can now see some of the signs. I'll share everything I can come up with with you, mostly what I still struggle with now.

I didn't like playing with other kids my age that much, I preferred reading. If I socialized, I preferred to discuss different topics. I've always felt like an old soul, and I still do. My friends get older and older, and often I can't relate to people my own age, because of state of mind or life situations.
I didn't learn to smile properly, tie my shoes, ride a bike, roller skate, swim and other sports until very late. I'm still not good at physical things. And when I was supposed to learn most of these things, I would always cry because I felt so pressured by the adults who tried to help me. I ended up learning most of it on my own, at my own pace. I also walk with my toes pointing inwards, and somehow I don't trip all the time (though I'm terrified of it!). Being physically clumsy / uncoordinated seems to be common.

All infographics used are by The Little Black Duck

A big autism trait is to have very sensitive senses. Taste, smells, physical touch, lights and sounds. I can easily become uncomfortable by things other people don't even notice. I have a huge problem with food textures, tastes and smells, which makes me eat like a child (I could eat the same thing every single day for years). Luckily I am in good health, but I know this will probably become a problem for me later in life. It's hard to be 25 and basically never eaten a fruit or vegetable in your entire life. I've tried small pieces, but I usually end up gagging instantly and crying. I can smell much stronger than most people, you can probably imagine how uncomfortable that can become. There are random things I can't stand, like touching velvet the ''wrong way'' or a knife on a wooden chopping board. Light and sound are what I handle the best, but I don't like bright lights (I sometimes have to turn away at concerts while I wonder how other people can stand it) and loud, usually unexpected sounds.

Socializing can be pretty hard for me in general. It's often very exhausting, and I often need days of relaxing peace at home after a few hours of socializing. And yes, after going to festivals I need weeks! When I am tired in general, I tend to go non-verbal.
As a kid I would always come home from school after being quiet all day and nag a hole in the head of my dad. Probably ranting about how stupid the other kids were and whatever I was interested in at the time. Crazy how I seemed to be two different people every day.
I do something called masking, where I basically observe what other people do socially and use that as a template when socializing myself. I had no idea I was doing this. I was aware of some sort of masking a few years ago, but I attributed that to depression. I am still not sure what is me and what is the mask. This is also why my autism wasn't noticed until I was in my 20s. Girls and women are especially good at it too. I imitate people's behavior, speech and vocabulary in general.

I've always had a hard time making friends, and usually I get along with boys better than girls. I guess they tend to be simpler when it comes to friendships, while girls can be complicated and twofaced. Generalizing very hard here, you get the idea!
In a group I usually sit an observe people in conversations, and rarely say anything. Often I have a hard time knowing when to speak, what is appropriate to say, and if what I want to say is correct. And while I contemplate all of this the topic has moved on. Though I still feel I'm ''in'' the conversation. Often I have no idea how to react to something, like if I should be sad or laugh. I don't know what to say either, so I might not say anything at all - that also goes for when I'm not interested in a conversation, especially smalltalk.
And yeah, I have some trouble with "common decency", like saying please and thank you (mostly in person), what to say and do, and what is appropriate, I guess.

I take a lot of things literally, especially jokes. I've gotten quite good at sarcasm though! I also often see things in black and white, and can get offended by what people say, even though it wasn't meant to be offensive or anything. 

I lack empathy and sympathy. I can't picture how someone else might be feeling, or be there for people emotionally. When someone has a problem, I come up with practical solutions, and that's usually not what they want. And when they don't say they only want to rant or just someone to feel sorry for them, I get very frustrated. I can also tend to be pretty narcissistic. I never ask people how they are or certain questions they have asked me back to them. I answer questions about myself, but it doesn't occur to me to ask them the same things. I usually don't care either, lol.

I have a hard time making eye contact. I've been aware of this for years, so I've been working on it, but it's very uncomfortable for me to look straight at someone, especially if they're looking at me too. If I'm sitting right across from someone it's a little easier, but if I'm with friends and they're at my side, I won't look at them at all, maybe their shoes at best.

And of course I have a lot of (social) anxiety, lol. I'm terrified of phone calls, the doorbell, talking to strangers, physical stores, and public transport. This also ties into having to plan and visualize everything before I go somewhere, cause something unexpected gives me so much anxiety.

Other things... I can't fantasize / visualize very well. Writing stories, playing as a child, stuff like that. I need to plan everything, nothing can be random. This is why I can't make small and insignificant choices as well, that stresses me out. I need to make planned, fact-based decisions!
Trouble sleeping seems to be a common problem for people on the spectrum, which is something I've always struggled with. I probably have some sort of sleeping disorder, I'm just not sure what. I tend to be wide awake in the evening / night, no matter how tired I was during the day. I need 10-12 hours of sleep, sometimes more, but sometimes I can have a lot of energy and be awake for 24 hours without being tired. And almost no matter how tired I am, I still can't fall asleep for hours. I usually need to listen to a documentary or podcast and focus on that so I can drift off.

Nowadays I'm trying to figure out how much I am able to work. For most of my adult life I've worked a lot of shorter periods, but the circumstances have always been different. I was always so exhausted and often even depressed. I get tired so much easier than other people, because of.. well everything mentioned in this post, lol. So I end up exhausted by something a normal person would barely notice. Since I didn't know I have ASD, I of course didn't know that could affect my ability to work either. I hope that I can find some sort of balance.

I also have OCD and dermatillomania. The former has gotten better since I was a kid, or I'm comfortable with my compulsions, but the latter hasn't. I can't even stop after the blood is pouring, and even when it's infected and weeping.

But being an aspie isn't all bad. You might have heard of autistic savants, people who for example cannot speak, but are amazing at a certain thing. I have a few talents, but for some reason I don't really like to talk about them. So these might come as a surprise to a bunch of people: I can sing in perfect pitch and often imitate singers' voices without knowing anything about music theory (not sure about my range, but around from higher male voices to soprano),  and speak 8 (almost 9) languages without an accent (and not knowing much about grammar). I can also read over 700 words per minute on screens and around 1000 on paper.
I have a pretty good memory, especially when it comes to facts. I still remember the full names and maybe even birthdays of everyone in my year in first grade. If I am interested in something, I usually get pretty obsessed and have to know everything about it. I will read entire webpages, wikipedia pages, books, etc. just for fun. I love to learn about things I'm interested in. If I'm not, I don't care at all.
I am a multitasker, I love doing several things at once (preferably three), or else I get bored. I need a lot of mental stimulation, but this can also backfire and leave me tired cause I've been so intensely active mentally for hours all of a sudden.
I am also incredibly organized. I mentioned earlier that I plan absolutely everything and that I have OCD, so I have mental systems for most things, and can't really function if it's not done my way. I do a lot of research, make lists and all that. People loved being in a group project with me during school, but it was frustrating for me. I did all the work, but at the same time I wouldn't trust other people to do it either. I'm lucky to have my fiancé in that he's so chill, he lets me be myself without interfering, supports me and helps me with the things I struggle with.

Now, all of this is just MY story. Every person on the spectrum is different. Even people who aren't autistic can have traits, but it's when you have a bunch of them and it affects your life it might be ASD. In boys these traits are usually noticed pretty early, even as early as a few months old, because of the stereotype that boys aren't supposed to be quiet, calm and smart, but girls are. I hate it. I even have a friend who was raised a boy who was tested for it, but she wasn't. Surprise, she was really a girl! That's what I mean. Since girls are raised the way we are, and since we tend to be a little better at socializing, autism in us goes unnoticed. If I can make people more aware of ASD by telling my story, I will have made a difference. While there is no ''cure'' for it and not very much treatment, just knowing that you have it, why you are the way you are and do the things you do can be incredibly comforting. And of course you can reach out to others who have similar experiences! If you're on the spectrum and are reading this, feel free to share your experiences in the comments. If you think you or someone you know has it, read up on it and reach out to a professional. Thank you so much for reading!


  1. If anything, Carolyn, this diagnosis has helped you to understand yourself better, even if it opens up new questions. What's important, however, is that you have skills and are a very unique person. That you stand out, makes you exceptional. That's a good thing.

    To be honest, I never would have considered you to have social anxieties. That's because you seem to do so much and seem to have so many friends. So, you manage to conquer some of your tendencies better than I do. I just pretty much accept mine these days. Oh? You're having a party tonight? Thanks for the invitation but I'm going to stay home and watch a horror film.

    Thank you for sharing your story. And oh, I hope you find a few vegetables that you like. lol

    1. Thank you so much!

      I definitely feel much more at ease in the goth scene, and even the huge festivals have been very enjoyable for me. But all in moderation! I definitely need a lot of time alone to cool down after every social interaction, including work. Just taking the bus leaves me exhausted! And I definitely can't do spontaneous stuff - very rarely I might be able to do it.

      Hahaha thank you, I hope so too!

  2. I have autism, too, and it can be both exhausting and great, from my perspective.

    Theres no shame in it, though ❤


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