This blog post originated from a second reply sent to Myranda Uselton to her Art of Autism post about being a self-diagnosed Autistic. In my first reply to her, I was proud to be self-diagnosed, and in the second, I described why I changed my mind. Debra Muzikar (editor of the Art of Autism blog) asked me privately if this could be extended into a blog post. So here it is.
By David Goren
Just recently, at age 59, I was formally diagnosed with ASD.
I knew long ago that I have Autism, and people I know often told me that I am different. For example, my wife Ayala, a psychotherapist, said to me that she thought I was Autistic soon after we met but still decided to marry me. When we first met, it was the first time in my life I went to a dating group. During the first meeting, I declared: “I love the spiritual world.” Everyone looked at me, and she liked that. I then asked her if she wanted to read a book together. She later told me that it was highly inappropriate for the situation. During the years, she helped me to cope with the neurotypical world.
Throughout my life, I was against formal diagnosis for two reasons:
The first was that my father was much against it since he did not trust psychologists in general. He thought that an official diagnosis would be a stigma, plus it would reduce my effort to adapt. The one good thing he did was to believe I would succeed in my own way. He always told me that I must be strong. The second reason was that I was against the idea of any authority telling me who or what I am. I definitely knew I was different from day one (as a toddler). I later understood that I am Autistic, but the main thing to me was to accept myself as I truly am without any labeling. I felt distrust towards “the world.” Who are they to tell me who I am?
“Perhaps I was able to accomplish more by going the hard way without discounts, but not sure if this is what I recommend anyone else on the spectrum to do.”
What changed my mind?
Believe it or not, it was forums like “The Art of Autism” and other Autistic forums in which I participated. People on the Autistic spectrum repeatedly said there that a formal diagnosis helped them for the better.
So I eventually tried. It was undoubtedly expensive, and indeed there are very few psychiatrists in Israel who can diagnose adults. I found the best one in Israel (I think), and he asked me to bring family relatives who knew me from infancy plus my wife. I met him three times, 90 or 120 minutes each time. He studied me from birth till today in extreme detail and depth. I learned much from this comprehensive study of myself in any case. I made a detailed summary, reflections, and points to discuss towards our meetings.
During the first meeting, he said that I talked too much and not in response to his questions. This is why we needed the third meeting. The psychiatrist who diagnosed me was amazed at the long path I made from my initial situation when I was one year of age and what I was able to accomplish later in life.
At the beginning of my mother’s pregnancy, early in the first period of three months, she had rubella. The doctors were rightly afraid of Congenital Rubella Syndrome. They recommended that she perform an abortion, but my parents were highly against that. I was lucky to be born without visible physical defects.
However, when I was one year old, I banged my head on the bed frame most of the day. I refused to eat for hours while rotating my palms, humming, and rocking sideways. I was not looking at my mother and father and swinging my head backward while looking up most of the day.
Later on, I survived chronic bacterial meningitis at age 5, during which I was hospitalized in solitude for over a month. I STILL rock my head backward this same way even today when alone, a significant part of the day. I am doing this right now between writing sentences in this blog. When I felt I needed to do that when not alone, I would go to the restroom and rock my head there until I relaxed. I still remember today the terror I felt when first brought to a kindergarten. The kindergarten teacher soon told my parents that I would not adapt. My father never gave up and sent me to a different kindergarten, doing it repeatedly until I could finally sit quietly in class. When the children went out to play, I would always stay inside the room to relax. It was not much different later in school; I learned to be transparent. I never had any friends throughout school and later on. I feared anyone my age.
I was so lucky that at home, my parents allowed me to do and behave whatever I liked.
What I was able to accomplish later was a doctoral degree in electrical engineering and physics from the Technion, and working 17 years full time as a senior research staff member in IBM research labs worldwide. I won IBM “Outstanding Innovation Award” (also called Outstanding Research Accomplishment). I have been lecturing (graduate and undergraduate levels) in the Technion and technical colleges for 25 years. I published 43 scientific papers (IEEE and physics journals/conferences) and have 20 patents. I am married and have two healthy and happy children who are highly successful today.
So here I am, three months after the diagnosis.
I can tell now with certainty that the diagnosis does make me feel better.
It helps me to accept myself.
I am much less critical of myself because of many other failings in the past.
The best wording to what I feel today is this:
I now fully realize how BRAVE I was. What I did in my life was so much above and beyond the average potential of my initial condition at birth.
However, this extremely hard coping had its high price throughout the years. My diagnosis was a triple one: Autism spectrum disorder, Major Depressive Disorder, and Unspecified Anxiety Disorder. The first clinical depressions started after having my second son when everything looked as if I made it to “successful normality.” My unconscious mind let me release the enormous stress by entering into depression. It was the first time I had to take medications. I then had a crisis at work, which forced me to travel with my family to New York to work for two years in IBM’s leading research lab at Yorktown Heights. You can imagine how this added objective stress dragged me into another depression. Finally, I became suicidal and had to go back to Israel, not before solving the new research challenge given to me in New York.
Medications were not enough to help me anymore. What saved my life was traveling alone to a Zen Buddhist monastery for a serious three months practice. I decided to write a book on Buddhism there, which took me five years to write, including during an additional one year of life in a Tibetan Buddhist monastery in India. The depression episodes continued, although never during my life in the monasteries.
I visited my psychiatrist many times, even later. I now feel that the diagnosis helped me relax and live better with myself.
Bottom line: Based on my experience now, I encourage self-diagnosed people on the Autism spectrum to seek a formal diagnosis.
However,every case is different, and I support anyone who wishes to avoid a formal diagnosis for any reason. Perhaps I was able to accomplish more by going the hard way without discounts, but not sure if this is what I recommend anyone else on the spectrum to do.
Dr. David Goren (D.Sc.) is a keen research person in the broadest sense; equally loved physics and far eastern philosophy ever since high school. Physics became a profession while India and the east went underground.
David earned the Technion’s Doctor of Science (Electrical engineering and Physics) degree. He Worked 17 years at IBM research labs worldwide (Israel and the US) as a Research Staff Member. Won IBM “Outstanding Innovation Award” (Outstanding Research Accomplishment). David Has been lecturing (graduate and undergraduate levels) in the Technion and technical colleges for 25 years. He has 43 scientific papers (IEEE and physics journals/conferences) and 20 patents.
Inheriting some money from his late father, plus a personal crisis, enabled him to return to his true love in 2015 by going to 90 days deep practice in a Zen Buddhist monastery. He started writing a book about Buddha’s life, which continued while living and practicing for one year in a Tibetan Buddhist monastery. David regards himself JewBu, practicing Buddhism and reform Judaism and advocating the path of practiced interfaith in general.