Why I'm Seeking an Autism Diagnosis as an Adult
Autism for those with significant struggles is usually diagnosed at a relatively early age. But what happens when you’re on the opposite end of the spectrum and not diagnosed until your mid-20s? I’m here to share my experience!
I didn’t know what autism was until I was 20. I knew about ADHD, anxiety and depression and how they ran in my family to some extent. I grew up in a single parent household where my parent didn’t believe in mental health issues and labeled me “lazy,” and “stupid.” I was told if I just “got off my ass and tried harder” my life would be better. I learned to hide my struggles or I would face constant psychological and physical abuse, and if there was any sort of acting out — don’t get me started.
I never fit in. I tried pretending to fit into groups of kids I had nothing in common with time and time again, but never had true friends or relationships. When my mother was around, she put me into sports and groups so I could burn off energy and try to socialize, but it was often my mother who had set up play dates and would invite the other kids over because I didn’t have the skills to do so myself. At a young age it didn’t really bother me too much. I enjoyed what I had, including my fixations — animals, sports, video games, climbing in trees and being alone.
I made my way through junior high and high school playing sport after sport, which kept me busy and out of the house fulfilling my need for social engagement, but I still didn’t really have close friendships. I stuck to spending time in classrooms at lunch time with my favorite teachers and that was enough for me. I didn’t need or at that point want more than that.
It was when I finally ventured out of my “nest,” my “comfort zone” of my single parent household that things shifted and my struggles began. When I got to university I had the opportunity to have a social life that wasn’t tainted by an abusive, controlling parent, but I was in unfamiliar territory. I knew I was awkward, I knew I lacked confidence and I knew people were wondering what was “wrong” with me — and so was I. I was able to have conversations and felt I had made progress with building a social life, however I lacked the understanding of others which lead to me losing my closest friends the people I considered my best friends. I had no understanding why and what I had done for them to just give up and walk out on me.
My trust in people began to diminish, and I started to see a counselor to try and understand myself better. At first it was mostly to manage my severe social anxiety and traumatic past. After a few years of self-discovery and working through my now-diagnosed PTSD, I had found myself. I no longer had to wear a mask, and I actually liked who I was. However, that came with a cost. I was no longer in a survival mode, constantly in a fight and flight mindset. This was when Autism became an even bigger part of my life.
As someone who works in the disabilities field, I denied the answer that was right in front of me because of the fear of my coworkers judging me. I couldn’t be an autistic behavior specialist working primarily with kids with autism — or so I thought. When I allowed myself to accept my autism, I realized why I was so good at my job. I could honestly relate to the kids I was helping. I had been there and felt that.
As I began pursuing a diagnosis, it was hard. I shed the mask and began having frequent meltdowns from being emotionally exhausted, extreme sensory processing issues and my biggest trigger — myself. Anytime I began to judge myself, I would get wrapped up in a cycle of frustration and self hate, constantly questioning why I was doing this and just wanting to quit and revert back to the mask.
Why did I want a diagnosis? My psychiatrist, doctors and therapist all asked me this. In their offices, I had no answer. In my head, I knew exactly why.
Without an answer to give the people around me, I am seen as rude, awkward, a loner, unwilling to change, a control freak — the list goes on. I have been the target of workplace bullying and still am to this day, which contributes to misunderstandings, sensory overload, and exploding at the end of the day into aggressive meltdowns. Having an answer to these behaviors and struggles would hopefully encourage those around me to have a little bit more compassion, but mostly it’s for myself. I don’t want to think I’m “losing it” day after day. I want a factual and logical answer — something my brain thoroughly gets excited about.
I don’t want to keep having my heart broken by “friends” who don’t understand I have significant struggles with social interaction and just up and leave because I am too much for them. A diagnosis gives me an opportunity to be able to share why I struggle and feel less crummy about myself, because I can’t help it — but I can work on it.
As of December 2018, I am continuing my pursuit of a diagnosis. Receiving a late diagnosis is a hard process. There aren’t enough professionals trained in diagnosing adults, and in many circumstances psychiatrists don’t like to be challenged. I am doing this for me, because I am worth it, and so are you. If you are in the same place, don’t let the frustration stop you. Just keep fighting — it will be worth it!
Getty image by Katarzyna Bialasiewicz.