My Diagnosis

My Diagnosis

 

I feel like the further from the diagnosis I received about my “high functioning” autism, the less “high functioning” I have become. A few weeks before my diagnosis, and even before the almost month-long process of getting the diagnosis, I started getting more sensitive to light and sound. I thought it was strange, but that was it. I’ve had too many things happen to me for a little thing like light and noise sensitivity to register as something earth-shattering. It could be related to the trauma or the PTSD or the medication or something else. The something else was probably the autism that I ended up receiving a diagnosis for later on.

My husband said “it was like as soon as you received your diagnosis, you started pointing out all these autism videos and it became your whole identity.” I had to explain that no, I had been watching them for weeks and weeks, identifying with what they were saying. The Facebook algorithms had picked up cues weeks before I was diagnosed when other people, including him, were saying “you might be on the spectrum” and sending me reels. I was just too afraid to share them in case I was wrong. I mean, how embarrassing would it be if I shared dozens of autism videos saying how I felt autistic only to be told by professionals that I was not, indeed, autistic at all?

Throughout the process of getting diagnosed, this fear rang through me like a bell that maybe I was, and maybe I wasn’t. I didn’t know which was worse. One of the first questions they asked was why I wanted to be evaluated and how I felt about it, and I said terrified. There were questionnaires filled out by myself and my husband and since I didn’t want my dad to fill out my “person who knew me aged 3-5 years old” one, I just didn’t have one to do that. Two 90 minute interviews starting with those questions just to lay everything bare. I mean, they know autistic people don’t mess around with small talk. It was refreshing not to have to make eye contact or worry about stimming or whatever, or so they said, but they were obviously evaluating based on all those factors as best as they could. Even having the reassurance that I could “be myself,” I still stifled the “you know what I mean,” “does that make sense,” etc for almost the entire interview. I let it slip once followed by a three second pause of dead silence. I think the evaluator could tell at that moment what I had been doing.

I tried answering all the questions to the best of my ability. Fortunately, the assessment interviews were back to back days which almost never happens, but then it took over a week to tally up the scores and get a final piece of information which my brother kindly provided about my childhood. He filled in a lot of missing blanks for the evaluator that I had forgotten because I blocked out a lot of my childhood. I had to schedule everything before the first session. Fortunately it was before my first job. Unfortunately, I lost my mask right after the diagnosis and right before the job was supposed to start.

I learned a lot about myself, and I feel like I’m sliding backwards in skill progression. I’m becoming more sensitive to things. I am becoming closer to outbursts, but because of a near-meltdown, I am getting more support from friends and learning to draw boundaries. I learned that I never learned privacy or boundaries as a child, so I get to learn now. Vulnerability was my way of life, but I don’t have to wear my heart on my sleeve. I get to have emotions, but I also get to leave the room when it’s too overwhelming for me. And I rest. A lot. My husband is letting me, which is very gracious of him. And I am learning to ask for help and lean on him for help, which I haven’t done in the past. I am becoming both more independent and more supported by friends and family. And I keep making mistakes. But now I can say to someone “here’s what happened” and they can say “here’s what really happened” and I can go “OMG really???” That’s what this blog was supposed to be about, but perhaps the next one.