When I was 48, I was diagnosed with Autism. When I was 49, I accepted my diagnosis, then raged against it. I am now 50 and I’m still dealing with the aftermath.
In 2018, my doctor announced that I have “Asperger’s Syndrome” with the same gravitas as telling me that I have a skin tag.
I didn’t have any kind of denial or anything. I mean, I’ve been me my whole life (with the various evolutions one hopefully goes through with growing.) My medical record was originally marked with “Aspergers” and later amended to “Autism” because Hans Asperger had no problems with killing children for the Nazis.1
I believed that my diagnosis didn’t change any aspect of me. I merely had a name for the weirdness I always had. My weirdness included but was not limited to:
- Performing repetitive movements
- Developing rituals or routines that can’t be disrupted
- Resistance to touching
- Echolalia (repeating words or phrases)
- Echolalia (repeating words or phrases)
- Speech problems or unusual speech patterns
- The odd huge meltdown now and then and here and there
- Difficulty following simple directions
- Inability to recognize social cues or predict someone’s response or reaction
- Short attention span
- Echolalia (repeating words or phrases)
- Problems understanding feelings or talking about them
- Extreme sensitivity to sensations like light, sound, or smells
- Being extremely fascinated with a particular subject matter, fact, or detail
- The inability to look at or listen to people…
And the list goes on. Imagine people’s surprise when they found out that I am Autistic and not merely an asshole!
So my doctor granted me the title “Autistic” without so much as a sword tapping on each shoulder, the way it should happen. I went home thinking “well, this explains things, but this is closing the barn door after the cows have escaped. This won’t make any impact on my life.” Then I forgot about it.
Please start the dramatic burst of music.
Eleven Months Later
A lot changes in a year. I met my best friend, later to become my partner. I moved to a new residence. I was hired full-time for a job I had previously been contracting for. I turned forty-nine. Things were wobbling upwards.
In October 2019, my partner and I took a trip to Vermont to watch the leaves change. We stayed at a lovely little condo in the mountains and spend a lot of quality time together. While there on a rainy day, we watched a documentary on Amazon named “Too Sane For This World.” This documentary interviewed twelve people with Autism, each with a wildly different perspective on their condition.
This documentary shook me ragged. There’s no tragic bent in the documentary itself. It is very respectful to the Autistic people in the film. It just brought up all of the issues that I had with being Autistic. I had a new view on my entire self.
I wish I could say this view was optimistic.
I saw the abuse, terror, loneliness, anguish, and constant grief in a new way. I thought, “I hadn’t a chance when I was young. I was an easy target. This thing, this Autism in my head, made me a target for the Neurotypicals. I hadn’t a chance to fight back.” I didn’t have the wherewithal to stand up for myself until much later in life, and even then results varied.
The funny (NOT ha-ha) thing about physical abuse is one tends to assume that the beating was in some way deserved and it takes ages to work through that issue. For decades I had worked out that it was in no way my fault. These kids acted out because of their own terrible issues, most likely abuse at home.
But it turned out I wasn’t just the “weird kid.” I had a “disorder.” There was something wrong with my brain, and trying to think your way out is like trying to jump out of your skin. My weirdness went from something I can do about to nothing I can do about, all because my mind is hardwired that way. Of course I was an easy target.
I felt like self-help was now impossible because no matter what, I would always be Autistic. I felt robbed of the ability to improve myself.
I felt like my agency was taken away. I was a big believer in self-help but that was now gone. I felt that attempting change was nothing but wasted calories because no matter what, I would be facing everything with a “broken brain.” I was Autistic, and there is nothing that will ever change that. There is nothing that can bring back the wasted potential and happiness I could have had if I hadn’t been hobbled by my own syndrome. I was robbed of peace, happiness, and accomplishment because my mind was doomed from the start.
Once, my partner asked me about what it was like discovering I am Autistic. I told her, “knowing the name of my prison doesn’t free me from it.”
Sorry, fellow Autists2. That’s how I felt.
My Personal, Heartfelt Caveat
I feel the need to say here that I have never been an “Autism hater” or whatever the term may be. My daughter is Autistic and I can’t bear thinking of her being any other way. She is one of the sweetest beings I’ve ever met and her Autism is a large part of that. Her mind is beautiful.
I have chatted with many Autistic people since my diagnosis and it is amazing the amount of support, love, and understanding they give each other. I am totally supportive of Autistic people and love them as they are.
But I despised my own Autism.
It Gets Interesteringer!
My partner, being a good person, started reading everything she could about Autism once I accepted my diagnosis. She wanted to know more so she could interact with me and my daughter in ways that are comfortable for us. She used to be a special education teacher so she had a great grounding, but she left the business years ago and was out of step with the latest research.
As she gained more information, she discovered that Autism manifests itself differently in women than in men. Furthermore, she discovered she matched almost all of the diagnostic criteria for Autism.
So I am in a house full of Autistic people.
Which is great! I love them both and would change nothing about either of them. In both cases, their minds are wonderful, creative, loving, and fun.
Yet half of my forty-ninth year was spent seething at the chance and genetics that made me Autistic.
Time Marches On! Usually, It Marches On You
I had yet another birthday this year, as is common with every other person who ever is or will be. I turned fifty, which to some people is a seminal event but for me was just another day spent inside, avoiding COVID like a literal plague and working from home.
The rage I had about Autism is dying a heat death. I am exactly as I am at the moment I am in and that is about the most sense I can make of it all.
I went through a lot of this purposefully alone, because John do what John do. I let my partner know what was happening but left most of the pain percolating underneath. It was just a shimmery trace of toxic radiation leaking out of a pleasant smile.
Time heals all wounds and wounds all heals. My anger about Autism ebbed and flowed. I read about it, I mused, ruminated, and at times expertly dodged the whole thing to play video games.
It would be wonderful to end this article with catharsis. I would love to say that now I am a hundred percent at peace with my Autism and that I am tranquil.
But life doesn’t work like articles or blogs. There isn’t a final sentence until there is THE final sentence and chances are I will continue to be exactly as confused about things as nearly every person on this planet.
But my Autism is MY Autism. I no longer believe it is a prison or a wall preventing my evolution as a person. In fact, it does explain why every New Year’s Eve resolution I’ve ever made was abandoned an average of ten minutes after I made them. There is a kinda-sorta hope in that.
I can potentially hack my own brain. I can wander the trackless fields of my thoughts and search out creative ways to create change in me. There are benefits to Autism. Among them are:
- Attention to detail
- Deep focus
- Novel approaches
- Tenacity and resilience
- Acceptance of differences
- Honesty and integrity
- The ability to spot patterns
- Being analytical
- The ability to absorb and retain facts
In my grief, I overlooked those aspects. There are many things I can do that my Neurotypical friends can’t, and vice versa. I am weird. As a child, that difference can be dangerous. As an adult, it can be positively world-changing.
1 “In a Different Key: The Story of Autism” John Donvan and Caren Zucker Crown (2016)
2 “Autist” is a new term that is gaining traction seeking to replace the term “Aspie,” being short for Aspergers. Since, again, Hans Aspergers killed children, it was generally felt that the community shouldn’t use his name.