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Finding Out

SunsetBrush

I figured I'd tell my story and see if anyone's gone through similar?

I first found out I had Aspergers when I was 13. I've had it since early childhood, but it wasn't through anyone telling me - I found out through the black and white writing of a school letter I wasn't supposed to see.

A bit of background, I'd always been the quiet kid, lost in my own head and feeling I could only communicate through creativity. I knew there was something different about me as I had a helper in school and the other kids didn't. Finding out I had Aspergers cleared some of that confusion up but I was also angry I had to find out this way. I wasn't supposed to see the letter, which makes me question when my parents were planning on telling me. I got into a bit of a dispute with my Mum over this and her response was that I wouldn't have understood as a child. I get that, to an extent, but I felt I was at the part of life when a helper felt unnecessary and I wanted independence. I was capable enough.

My family has always sucked at communicating things like this to me. For the longest time I didn't feel I could talk to them at all - it was always a criticism of the amount of time I spent online, petty arguments or feeling they didn't get me. We've become closer over the years and it's gotten better, but my teenage years were some of my worst. Crippling self doubt and a shell that I would only sink further into. A lot of this is my responsibility, I was a tough kid and teen to deal with, but it still hurts.

I think the bitterness I felt towards it was a big contributing factor for me choosing to end the support. "There's nothing wrong with me" I thought. "I'm shy, insecure and struggle a bit socially but I don't want to be grouped in with the incapable". I guess it was wanting to seem normal to my school friends too. I don't regret striving for independence but maybe I should've kept that door open to answer my own questions. It's been a confusing decade trying to figure out what Aspergers is and how much of it is me. "What's wrong with me?" was asked a lot.

I'm at a point in life now where the line seems blurred... Anyone who learns I have the condition says they couldn't tell. Any quirks the condition has on me just seems to blur into my personality type. I've found positive attributes such as attention to detail and focusing on passions, but I'm still not sure how much negative weight it holds. There was almost the feeling that I've "grown out" of it - maybe I've found coping mechanisms and gained social confidence through experience.

But I'm here to reach out properly and see other people's experiences. I hope learning about it will help me reflect on myself too. Thank you for reading this ramble, I'm sorry it's so lengthy, I guess I had a lot to vent out. I hope you're having a lovely day <3

Parents

  • Hi, Sunset :-).  It's Mask City (me) and denial (Mom), here.  I grew up in a very conservative, nonconfrontational family and my mom (bless the wonderful woman) had some blinder issues when it came to "disabilities" for either of her children.  I have Dandy Walker malformation, which we didn't find out about until I was 17 when I had a CT scan for headaches.  Doctors had told my pregnant mom a part of my brain hadn't developed and that was it.  I was born in the '80s and DWM isn't super common; even less so back then.  I've never even seen a DWM specialist!  My mom never understood how I could lack balance, coordination, and motor skills, but manage to use a foot pedal and keyboard at the same time for work.  She just couldn't see my limitations outside of being "clumsy." 

    I didn't set out to get an official diagnosis until after she died because I lived with her my entire life and she was my caretaker until she died when I was 32.  Now, I'm completely lost without her and think I would benefit from available resources and support while trying to maintain a 2-person home and pay bills and taxes by myself.  Mom never found out I was on the spectrum and have ADHD, and I have a feeling she would have been in denial then, too.  My brother was diagnosed with ADHD in adulthood as well.  

  • in reply to amandariley

    Oh gosh Amanda, I'm so sorry to hear what you've been through. I'm glad you were able to get a diagnosis though, and I really hope there's support out there for you - disability benefits, a carer? Aspergers seems mild compared to physical limitations. But please be proud of how far you've come already, and don't put yourself down excessively. All the best, I'm here if you ever need someone to talk to.

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  • in reply to amandariley

    Oh gosh Amanda, I'm so sorry to hear what you've been through. I'm glad you were able to get a diagnosis though, and I really hope there's support out there for you - disability benefits, a carer? Aspergers seems mild compared to physical limitations. But please be proud of how far you've come already, and don't put yourself down excessively. All the best, I'm here if you ever need someone to talk to.

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