Unlike many, I did not seek a diagnosis. I did not pathologise my "symptoms." I sought answers to questions.
When I was a teen, I had few financial options to support myself after my 18th birthday. In the mid-80's, the college path was entirely more complex than it is today. There wasn't the “free money” for student loans that there is today - parents needed to take out the loans as a teenager had no credit. There was no way that was going to happen for me. So, I applied for and won a Navy ROTC scholarship to go to UCLA.
I got on a bus to San Diego to take my entry physical. I was in great shape - playing basketball and wrestling at the time. I should pass the physical with flying colors.
I got through all of the indignities of the military physical and stepped into the hearing test tank. I put on the headphones and was admonished, “when you hear the tones, press the button.” No problem. I heard tones. I pressed buttons. Then a voice boomed into my head - "STOP F-ING AROUND. We'll try this again." I tried it again. I heard the same tones. I pressed the same button. The voice again - "LISTEN $HITHEAD - STOP F-ING AROUND." A final attempt. Same results. Same booming, profanity-laced tirade in my ears. I failed the hearing test. With that failure, my dreams of being a Naval officer and going to college courtesy of my Uncle Sam were gone. I had no idea why. I had no idea what just happened.
Plan B was football. I was better at wrestling, to be sure, but there weren't any scholarships for me there. Unfortunately, change in the NCAA's rules in my junior year meant having to walk away from 5 Division 1 football scholarship offers and head to Long Beach City College - a football factory by the beach.
Fast forward 10 years.
I didn’t receive an answer as to why I failed the hearing test at the time. I received that answer in the 90's. In the 90's, and DSM IV, new work had been done on the sensory systems of the human body. After some simple screening, a few stressful tests, and a talking to, the doctor diagnosed me with Sensory Processing Disorder, Sensory Integration Disorder and Audio Processing Delay. The answer to the hearing test question - I was hearing the different parts of the tone and processing them separately - harmonic / sub-harmonic - and hitting the button twice instead of once - after my brain took it’s time to figure out what was happening. The test wasn't programmed to receive two presses of the button, just the one, and it wanted that press within a short amount of time. The medic at my entry physical had no way of knowing what was going one, or to explain to me that if I hear two tones really close together, just press the button one time - quickly.
A few years later, another doctor was investigating one of my many medical issues. That doctor referred me to another, who diagnosed me with Asperger's Disorder. I didn't ask for it. It didn't help explain any of the digestive problems that I was having. But, it was in my permanent record.
Fast forward another decade and the release of DSM V. With DSM V, all of the individual brain wiring "disorders" and "syndromes" became Autism. Overnight, with the publication of a new guidebook for doctors, I became autistic.
There are a lot of reasons why the doctors decided to combine all the brain wiring issues into Autism. Some of those reasons, I agree with. Others, I do not. But, I was informed by Kaiser that there was no going back. The old diagnoses were no longer valid. They've been removed. Everything is autism now.
This is where the "epidemic" and "increased prevalence" talk gets its fuel. There wasn't an increase in autism - there was a wholesale shift in diagnoses. Over night, the prevalence went from 1 in 10,000 to 1 in 100. We got there by including people like me.
Whilst I identify with the term as a fit generalization for my wiring scheme, it has caused some problems elsewhere. Doctors simply aren't as up to speed on the many things that make a person autistic. In my case, the sensory issues.
Your entire digestive system is a "sensory organ." My digestion system had been under assault since the day I was born. It was largely ruined and barely functional. I've written about that elsewhere. But, the non-verbal aspects of my autistic brain meant that I couldn't adequately articulate just what level of suck I was feeling, or properly advocate for medical services to properly diagnose the problems. It's only been a bit over a year since that issue was sorted out.
I understand that others come to the topic of diagnosis for reasons that don't apply to me. Because of this, I support their efforts as best as I can. Many need the medical diagnosis to access services. The medical establishment makes the process unduly burdensome as a demand-side restriction - there's not enough supplies of support, so the establishment artificially limits demand. This is sick and sad. I do what I can to help where I can. This is a large part of the reasons for the founding of Towcester Abbey in 2015.
Please remember, everyone's diagnosis story will be different. People choose to get a formal diagnosis in order to access services. Other people choose to get diagnosis to answer questions about themselves. Others, like me, kind of end up with a diagnosis as a way of explaining the myriad of things that are “going wrong” with their system. Some autistic people self-diagnose. One problem with that is that they're locked out of services without that magic slip of paper. Another problem is one of not knowing where alexythemia ends and autism begins - or how the Tendency towards Interpersonal Victimhood (TIV) may colour their self-evaluation.
What I've found out is that autism isn't a result of injury. It's not a result of bad parenting. It isn't something that happened to me as a result of actions by my mother when she was pregnant. It's genetic. It seems to run in both sides of my family. According to actual research - not the eugenics crap - what we call autism has been around since at least the time of the Neanderthals (See Reser’s Solitary Forager Hypothesis of Autism). Many researchers believe that human kind was spared extinction many times in history thanks to members of the group who were rather solitary, intuitive, able to focus intently on a specific problem, etc - the Solitary Forager. Many of the people who pushed out from the group to explore the boundaries of the world would likely be found to be autistic today.
Remember, we can't always see “God's plan.” We can’t know whatever purpose there was / is in creating each and every living being. Eugenics-oriented groups think they can. Many autistics, myself included, reject the diagnosis of Aspergers Disorder and refuse to be called "Aspies." Hans Asperger was a Nazi doctor. His work in categorizing people had to do with their "usefulness." Remember, the Nazi's killed more than just Jews. First, they obliterated disabled children. Eugenics requires productivity - prove your worth. Dr. Asperger, seemingly well-meaning, wanted to categorize a group of disabled kids as productive with his new label. Given it's eugenic roots, and the fact that the Administrative State shouldn't be allowed to judge worth or set a value on one's life, I reject it vehemently. With DSM V, I’m autistic.
With all of this in mind, I have an autistic children. I know that they’re autistic. They know that they’re autistic. But, we have made the choice to not seek a "diagnosis" for them, for now, and let them choose if / when they want to. We'll support them either way. Because we manage the kids' schooling, we didn't need a diagnosis to access services. All of my kids have an individualized educational plan tailored to their specific needs, strengths, and weaknesses.
Yet, DSM-V-TR has come along to further destroy demand. Yes, the system will protect itself first. There simply aren’t enough resources to hand out, so the system has set the bar so high that new diagnoses will be almost impossible for anyone to get. It’s insidious, yet it’s already here. Moving forward, I suspect that self-diagnosis will become the default route to entry into the autistic community - almost like an open act of rebellion against a system that continues to exclude us.
Thus becomes the value of spaces like this. We’ll build the support structures that we need to not only survive, but thrive. With that in mind, thank you for reading this far and for your continued support. If you feel like sharing your journey, please do so in the comments below.
— December 16, 2023 Note —
Some of the materials herein have made it into my book, No Place for Autism? It was released in February 2023 from Lived Places Publishing and is available at Amazon and other major book retailers worldwide.