Autism Research as doctor/patient and witness/subject
WARNINGS – Research protocols were followed religiously. I studied my behaviors, dreams, patterns, every breath, every tic 24/7 for more than a quarter century.
Part I – Autism Research I Never Wanted
Autism research certainly wasn’t my first choice in life. I was ambitious in more traditional ways (so I imagined). I wanted to make lots of money, enjoy beautiful women, and live life fully, or so I thought.
I lived in midtown Manhattan and ran a successful finance business. Numbers have always been easy for me. I was making decent progress on my assumed goals: wine, women, and song, despite much unaccountable social awkwardness.
But inside was a very different story: under the surface, I lived with an incredible anxiety that had no name.
I would much later learn I had been living with and adapting to a very strange type of autism: I was a savant with a memory that photographed every single thing seen or heard in the present. My memory was so busy with the present that it left no room to remember the past.
It’s a funny thing. I had no idea for the first four decades of my life that I was a savant. I believed my memorized version of life was the real thing. My disability was for a time an asset for my field of specialty, which was finance. Juggling numbers in an abstract way allowed me to build two successful finance businesses and acquire a surprising amount of capital.
Autism Had No Name
But there was always the unaccountable social awkwardness and incredible anxiety. In addition, there was a pattern of unexplainable accidents and illnesses.
In the late 1980’s, when I was about forty, I had acquired enough money for me to afford devoting all my time and energy to my then unnamed condition of speech and sensory disorders.
At that time, my life was a total mess. I’d been trying to adapt to speech and neurological disorders. They arose not only from my inherited autistic savantism, but also from a brain injury I had sustained when I was born.
Getting started on my journey was a challenge for many reasons. Despite the ability to memorize all things that I see and hear in the present, I couldn’t recall past events. More importantly, I had absolutely no memory of my childhood. Unknown to me, that part of my memory, which concerned the past, had been taken over by everything I had memorized from the present.
For me, every day was a moment to moment challenge. It was all I knew. I was unable to experience the physical world but didn’t know it. My savant brain memorized the entire human dimension and that was what I saw. Reality was my savant brain’s memorized “takes” on reality.
So how did I get around, or survive. I used intuition to navigate the material plane. I avoided most social situations, although there were occasions where I did okay, especially when it involved business finance because only numbers were involved. Numbers I could manage or “understand”.
Most normal human activities consisted of awkward adaptations. Reading was hard since my mind photographed the pages from books. I did not read directly. I read the photographed pages in my mind. I then would use intuition to understand what the meanings were.
Despite my awkward efforts to read, I read books on psychology, Sigmund Freud’s ‘The Interpretation of Dreams’ and others, books on mystical subjects or anything that might give me a lead as to what was wrong with me.
Thus began the autism research that I never wanted.
Part II – Talk Therapy
I investigated and tried talk therapy. I had assumed that whatever bothered me had to do with psychology; something to do with my unconscious mind. Why? I didn’t know. Maybe I felt this way because I lived in New York City where everyone thought that every problem was in your head, psychological.
Maybe I read Freud too early and took him too seriously. I really had faith in Freud’s famous saying, “Dreams are the royal road to the unconscious.” I believed early on that dreams would unlock the key to my anxious states, although like most of my intuitions did not know why.
So my journey began. Despite my robotic, savant-memorized version of human speech, I tried talk therapy. I spent seven years with four very different but highly-regarded NYC talk therapists.
I had one very big question for these shrinks:
“If I’m not here, then where am I?”
But not one of them had an answer. My issues may have been in part psychological, but there were many other non-psychological things that no one considered.
I learned little about my inward state of extreme anxiety. Four shrinks and seven years later, plus tens of thousands of dollars poorer, I still had no idea why I lived in a state of distress nor its name.
What next? I had no choice but to figure this all out by myself.
Dr. Steven Katz
It was about this time that one of my shrinks introduced me to Dr. Steven Katz , a leading psychiatrist and then Commissioner of the New York State Office of Mental Health. He was a very friendly and sociable guy. Over the years I would call once or twice every decade to hear his voice.
In the last year I decided to call Dr. Katz to share my research from the last twenty-five years. He was his usual gracious self. I slowly exposed what I had been doing. He listened and invested a huge amount of personal time as he vetted my research. Dr. Katz has slowly come to agree with my diagnosis of what causes autism and why autistic behavior happens, even if they are contrary to popular and traditional training and orientation.
Part III – Alternative Medicine
I didn’t give up and tried many alternative medicine paths.
I felt disembodied. To solve this, I paid for hundreds of hours of different types of bodywork and very deep tissue massage for years. But even the painful Rolfing technique produced little to no results.
I married a New Age body therapist. We traveled far and wide and attended healing retreats and seminars from all over, from upstate NY and California, to India, Brazil, and more. We tried meditation, psychics, acupuncture, and other forms of alternative medicine. You name it, we tried it.
None of it helped much.
Carl G. Jung
One thing did help. I read the books of Carl G. Jung, the eminent Swiss shrink and one of the founders of modern psychology. His ideas helped me understand myself in ways no one else had. I learned my Psychological Type, which was introverted and intuitive thinking, with absolutely no sensations or feelings.
This insight would be crucial over the next twenty-five years as I discover them completely. It felt as if I was reborn into new skin.
When I read Jung’s descriptions of what he called archetypes, I recognized the inner states of anxiety that I had lived with forever. He was describing a dimension that he called the collective unconscious.
Part IV – Scientific Method – My Way
The areas covered by my research study included my unremembered life. It would be reasonable for you to ask how I can research what I can’t even recall. I might be able to answer, I will do whatever it takes. The research also covered thousands of dreams, mostly over the period from 1987 to 1991, plus an improbable and awkward mindfulness practice to watch and study how my mind and behaviors worked.
I had no clue where I was headed. My working hypotheses would be revealed after the facts; once revealed, I could then test it, draw conclusions from it, and communicate the results.
I began to develop my own scientific methods based on my assumption: Normal Perception Must Go – I will go wherever I must inwardly and do whatever it takes and costs outwardly. After all, whatever doesn’t kill you makes you stronger.
I started from the late 1980’s, but I knew my mind wouldn’t help me. So I systematically destroyed the conscious part of it. I must trust my intuition. After all, it made me money in business. And based on my reading of Jung’s Psychological Types, I had no sensation and no feeling, so that was out.
My roads less traveled included:
- Ecstasy (MDMA) – Starting 1987, my Buddhist wife fed me the psychoactive drug Ecstasy. I used it initially to reduce my physical anxieties, then to slowly but surely implode my conscious mind since my accustomed ways of seeing weren’t helping;
- Dreaming – I kept myself awake with a night lamp on to generate and record thousands of dreams between 1987 and 1991;
- Other dimensions revealed by dreams, plus a desperate courage to confront whatever came up, which proved to be an entrance to another reality;
- Mindfulness / meditation (whatever the name was for my version) done 24/7 for a quarter of a century, enhanced by my savant brain’s selective and prodigious memory and intuitive pattern recognition.
And so began my inward journey relying on an ad hoc scientific method. My memory allowed me to accumulate and remember all sorts of data. My intuition allowed me to recognize patterns that correlated with my dream images, alongside the behaviors which I had learned to see dispassionately from a mindful non-attachment. No shame. No denial.
Obviously there were limits as to what and how I could learn. My first problem was the fact that I had a lack of normal sensory perception.
Part V – Dreams & Whatever It Takes
I had decided that I was going to find out what was wrong with me, no matter what it took. I was willing to die to find out.
Books, shrinks, and alternative medicine had all struck out. I needed another way.
My first Ecstasy experience relaxed my body and mind as I’d never experienced before. I started taking it one weekend a month to find out why this was the case.
Ecstasy literally allowed thousands of dreams to emerge. It allowed me to access another hidden mind.
The dreams evolved over time. First, dreams emerged from daily life, and then larger and more complicated dreams with unfamiliar images started coming out as well. Some dreams were followed by spoken messages, commenting on the dreams and forcing me to see them from a different perspective.
Finally, a number of dream messages were dictated to me, one letter at a time. They required that I use calculations to convert number sequences into letters, which, when put together, spelled out words. That was how I got my first no nonsense diagnosis.
”A U T I S M” was spelled out. I was in shock. I had no idea what it was. I looked it up. It included lack of speech, but this sounded wrong to me.
I decided to dig deeper into my family history. I remembered my Uncle Morris, my dad’s older brother, who has always been hidden away. He was a real sad creature. He barely spoke. He never left home. He was for sure a classic autistic. Lights went off in my head. I suddenly knew why I rarely saw him. My youngest brother’s son, a good looking 10-year old, had no speech or body control at all.
My father and I were less obvious. We both had a unique form of savant autism. We were both somewhat like the Rain Man. Instead of memorizing telephone books and statistical information like the famous Dustin Hoffman character in the movie, our brains memorized the speech and behavior of whatever was seen and heard.
We then internalized it and acted it out, often making us appear human-like, except in situations that demanded real two-way communication and empathy.
The way I learned that my voice was not my real voice, but a memorized one, was an extraordinary experience in a California retreat. During an exercise where those in a group had to find emotionally powerful past events, I remembered my grandfather holding my hand as he took me out to buy a Bar Mitzvah suit on a cold day. I spoke and was shocked by what came out of my mouth. It turned out to be my real non-savant voice, which I heard for the first time.
Part VI – Real Church
One of my talking dreams said: “Learn to see yourself without flinching. You are the only thing that you need to study. That’s the real church.”
So I have spent the last quarter of a century in a church where I saw myself.
My research consisted of my unremembered life, thousands of dreams, and a mindfulness practice to watch how my mind and behaviors worked; my working hypothesis would be revealed after the facts; once revealed I could then test it, draw conclusions from it, and communicate the results.
This is what I shared with Dr. Katz, which I’m now sharing with you. My question from day one may now be approached from within – “If I am not here, then where am I?”