Uncomfortable Shoes


I don’t remember the exact age, but when I was very young, I realized that I was different. Not different in the way that you discover your individuality, (e.g., “I like blue and Sally likes purple”).
This Difference was something much more profound. I was an observer of this world, a reluctant resident, but wanting so badly to learn the customs and fit in. I felt like an alien. I remember my mom joking about me being adopted and somehow it did not feel like such a negative thing to me. Perhaps, I would then find out the secret to why I have to try so hard to do things that others find easy.
When I was 4, I was diagnosed with Epilepsy. This seemed to explain my unusual behavior. My zoning out, my preference for naps rather than playing with other children. Most of my seizures were auras or simple partials that affected my emotions, causing sudden fear, anxiety and nervousness. I also had visual hallucinations, waking at night screaming because I saw things crawling on me. Yup, this made me especially weird. I remember a particular time falling asleep at a friend’s house and waking up screaming for her to get a huge spider off of me.
When I was 14, it seemed my seizures had calmed down quite a bit and I would be able to discontinue medication and even start doing some regular things. I got a job my first real job at Wendy’s when I was 15. But, my first job bliss died on day one. My manager would bark orders at us and we had to remember what he said. I remember feeling so overwhelmed having to remember what he said and the order of things and also keep up with orders that were scrolling on the monitor from the drive through. Once I finally got the hang of things with making sandwiches, they switched me to cleaning the dining area. The change in routine caused my anxiety level to go up and eventually my school work started to suffer. I think I lasted less than 5 months.
In the ensuing years, I would have many job experiences like that one. It made for a sketchy work record and an overall anxiety about working. Several times during my young adulthood I fell into utter despair. I would escape through daydreaming, imagining myself competent with friends, travelling the world.
Writing was another escape. i filled journals with annals of my teenage life, when I read it now, it looks more like a journalistic account.
However, my poetry was much more expressive. Words were things that were malleable in my mind. Somehow, I could use them to create symbolism that perfectly reflected my entangled feelings.
Later on in life, I would return to writing again and again as a way to work through problems or convey the reams of information I would tear through with a newfound interest.

Why should you care about these details? I am sharing in hopes that you might see yourself in some of these experiences. I know, reading blog posts written by Aspie women has helped me to see myself. After I started to understand what being on the spectrum meant, I have had more than a few ah-ha moments. I am sure I am not the only one who has done a survey of her life examining moments that once were confusing or even traumatizing and seeing it through the lense of an Autistic person. It can be powerful to redefine those moments, helping to redefine your self-identity
For much of my life , I knew nothing about High Functioning Autism. I had heard of Aspergers because my younger sister had been tested and found to not have it. I associated Aspergers with ADHD and I didn’t “believe” in either. In my mind, it was something that doctors made up to explain away weird behavior. Why couldn’t they just let people people be?
But, I did know a little about regular Autism, the non-verbal kind. My cousin exhibited  all of the typical symptoms. He walked on his toes, said only a few words as a toddler and struggled to make eye contact. In my mind, this was Autism.
It wasn’t until I wound up down a rabbit hole to solve someone else’s problem that I discovered my own Autistic traits.
My husband had been suffering with anxiety and depression and unable to get quality help. I was frustrated. I knew something was off and there was something that was not being uncovered. Somehow, I am not sure how, Aspergers popped into my mind. I had come across it I think a year earlier and discussed it with him and he said, “That’s definitely not me”. This time, I dug and dug and dug and even took an online questionnaire in his behalf. The more I saw, the more I knew this was my husband. Once I showed him the information I found, he took some time to look through it. When I asked what he thought he said, “If this is me, then it is also a lot of other people I know and it is you too”
I actually got irritated and a little angry because I thought this was about fixing him, not me. However, once he showed me the traits of Asperger females, I could not deny it, even to myself. I knew that I was Autistic and I was 39 years old.
My first reaction was sadness. All this time, I had been a mission to fix myself, to fit in, to talk myself out of feeling so afraid and weird and anxious all the time. I don’t know if I said it out loud, but it the midst of tears, it was loud and clear, “I can’t fix this!” There was also sadness when I thought about how I this information would have been so much more helpful to me when I was 16!
That grief lasted for a few weeks, then I started to settle into my new role as Aspie Advocate, eventually converting my younger sister who had previously received a negative diagnosis. However, there were days, many days, when I just wanted to not struggle so much. My ingrained tendency to fix problems reared its ugly head again, leading to more despair. It was almost as if I had been grieving a death. The death of the person I would not become. It had never been possible. It is like saving all your money to buy tickets to a concert that was never scheduled.
I would like to say that now I am over the sadness, but it crops up every once in a while. Perhaps it will, even with an official diagnosis. I had convinced myself that it didn’t matter whether or not I got one, but it would be nice to have the confirmation of what I know in my heart of hearts, but still have some trouble accepting.
Are you still undiagnosed? Does your diagnosis status affect how you live your life?

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