Long is the Road to Recovery: The Odyssey of an Autistic American
I was born at 10:40 a.m. on May 30, 1938, in Akron, Ohio (USA), the first child of an urban, middle class Jewish family. Both of my parents were prominent lawyers and real estate developers born in the United States.
My Tourette’s Syndrome was diagnosed early in the game, when I was about six years old by a local pediatrician. Head, neck, shoulder and arm tics, facial grimaces, growling, biting, copralalia (swearing or blasphemy), and echolalia made this diagnosis quite obvious. Another medical term used to describe conduct like this in those times was “likosism” (derived from the Greek word, “likos”, for wolf), to describe lupine-typical behavior.
At night, I would leave our house so it became necessary for my parents to lock the house on the inside to keep me in. After I figured out how to foil their locks, they acquired a small metal bear cage from our local zoo and kept me in there while they slept. Our lesser-schooled neighbors were concerned about my having the predatory eyes of a wolf, or being either a werewolf cub or demonically “possessed”. Ironically, I did feel like my illness consisted of some kind of separate entity which was living inside of me, taking control of me unexpectedly, particularly when I was stressed, and making me do or say things I would not ordinarily be inclined to do. For years, I would even try to go into myself after it to beat it out of me by flailing myself with a wide leather strap. This was a rather hellish way to live.
In the 1950s while I was in high school, local pediatricians who could read medical literature in German, had already informed our family that I appeared to have another co-morbid, newly discovered, neurobehavioral disorder besides Tourette’s, but that there was no treatment available. They said that Dr. Hans Asperger, who had begun to investigate this new developmental disorder during the Second World War, had survived the conflict and was practicing in Vienna.
One of my physicians suggested peppermint schnapps to take the edge off when things got bad, hoping that the alcoholic content would prove sedating and the flavoring would make it palatable and soothe my tummy. That “schnapps treatment” was eventually to become a fortuitous portent of things to come. What would ordinarily appear to be a path leading to alcoholic catastrophe would paradoxically prove to bring forth the seeds of its own redemption decades later in Alcoholics Anonymous.
As I grew into adulthood my condition was subjected to examination by a plethora of psychiatrists and psychologists who applied multiple futile diagnoses over the next fifty years—“exceptional” child, schizophrenia (the catch-all for everything in those days), manic-depressive or bipolar disorder, borderline personality disorder, endogenous depression, etc. My family and I had long forgotten about the original diagnosis of Asperger’s until 2002 when I was sixty-four, and a nurse heard me relate my case history in an Alcoholics Anonymous meeting. She suggested that I might have been struggling with Asperger’s during my traumatic lifetime.
I then scooted over to our local chapter of the Autism Society of America to find out all I could about Asperger’s. Fortunately by that time I had already begun to avail myself of various alternative/holistic modalities of therapy.
My schooling was no cakewalk. Academically math and any subject requiring mastery of that discipline would be far beyond my ken. I did somewhat better in subjects like social studies, and I was able to perseverate extensively in subjects like geography and history, and did extremely well in those. I produced my own collection of full-color replicas of the national flags of every country in the world, and I can still draw them all for you today. And so I doggedly pursued my education, starting with elementary schools and high school in Akron, Talmud Torah religious classes, and continuing at the University of Michigan at Ann Arbor. The regimen of law studies was more difficult for me, so I dropped out of law school nine times before I could take Ohio’s bar exam, but then succeeded in passing with flying colors. I had trained as a paralegal in the law firm of my parents in high school and college, so extensive knowledge of the law gained thereby pulled me through.
Both of my parents, now deceased, appear in retrospect to have presented elements of high functioning autism spectrum and/or pervasive developmental disorder. Dad had been diagnosed and treated with bipolar disorder and Tourette’s and Mom was considered to have schizophrenia and Tourette’s, although she remained in denial and never accepted treatment.
Both of my parents were highly intelligent and productive in their law practices and real estate development businesses, despite their psychological issues, but our home life was chaotic, despite my father’s Herculean efforts to provide us with a secure, loving home life. My brother fared somewhat better than I. He was able to marry and did conceive three children. He and I were difficult children to rear. We both needed to be kept on leashes on the street before the age of three or we would simply run away from our parents.
If you look at where I would have fallen as a child on the Asperger’s diagnostic testing scale, you will see set out before you the beginnings of disaster. I was a loner. I could not relate to other children. My motor skills were poor, and participation in sports was not feasible. I could not comprehend that social world of other kids. I took no part in it. I lived in my own world of books, hobbies and other interests. I had minimal self-confidence, and I needed a lot of reassurance from my parents.
I could go into a melt-down easily, and my emotions were extreme. Eye contact was sparse, as were conversational skills. I was not interested in what you people had to say, unless I needed information from you. I was regarded to speak with an unusual accent and to walk with an unusual gait, so my nicknames were “Martian” in public schools and “Golem” in Jewish schools. I was no devotee of fairy tales or other fictional balderdash. I was the school’s walking encyclopedia. I had a memory like an elephant, and was considered to be a “far-out” genius of some kind. I always stuck to behavioral routines or rituals, and tolerated no interference with this internal security system of mine. I did have a tendency to rock back and forth or to flap my legs when stressed, and had a low sensitivity to pain. I also had symptoms of ADHD and OCD, but if something really grabbed my interest, I would perseverate on it endlessly.
Neuropsychological testing, finally done in 1992 when I was 54 years old, indicated frontal lobe dysfunction and right hemispheric visual/perceptual dysfunction. Although my overall IQ appears to have been preserved in a very high range, there are deficits in specific tests demanding a skilled function of the frontal lobe and in sensory/perceptual areas.
Among the many ways that my frontal lobe dysfunction has affected my behavior is that I have had trouble discontinuing activity. Or I would become bored easily and move on to a new task, leaving previous tasks undone. I would have problems judging the level of social appropriateness, especially in regard to aggressiveness of interaction and problems with maintaining a sense of well being. My frontal lobe would not let me know that I feel alright when I query myself. In the absence of a response indicating a positive feeling I would assume a negative feeling and “freak-out”. This would set me up for chronic anxiety or depression and a feeling that my life would be a living nightmare.
Moreover in terms of perceptual processing these brain dysfunctions would cause me to be visually disoriented and uncoordinated in my movements. I would not be a mechanically oriented person. I would be someone who might get lost, misplace things or lose my balance easily, or be incapable of drawing accurately. And so I would be living in a world perceived to be threatening and depressing, one that I could not expect to function well in.
In 1998 when I had reached the age of 60, a local doctor performed electronic testing, specifically a listening and other sensory testing and qualitative electro-encephalography (QEEG). Findings on the listening test showed a normal, for my age, decline of hearing above 4K Hz, but other testing indicated presence of a great deal of anger, and problems with laterality and balance, and other motor issues. Emotionally it would appear that I would want to relate to people, yet pull back from them. Yet I would persevere. I would also maintain high expectations of myself which I would have much frustration trying to live up to.
The striking thing about the QEEG test was the overriding presence of beta (fast activity) even under conditions of eyes closed as well as eyes open. What this translates into is that my brain was likely to be going too fast and in an undifferentiated manner. Practically it means that I would be likely to have a number of things going on in my head at once, with little in the way of organizing activity. Thus, I would bounce around in my mind, much like a pinball machine.
None of the myriad of doctors who treated me for the five decades of my life after childhood properly diagnosed my Asperger’s or Tourette’s. They doped me up with all kinds of tranquilizers once they came out in the 1960s. Psychiatrists at a nationally acclaimed clinic started me out on highly addictive Serax by day and Seconal by night, both barbiturates, and after those drugs turned me into a zombie, arranged for me to be hospitalized for years at a highly reputed psychiatric hospital.
There the disheveled mental patients were let out to shuffle around a large oval track on the grounds in back of that institution for exercise on nicer days past the doctors’ shiny Rolls Royce and Bentley automobiles parked there. It was like a bizarre scene from such novels then popular as “I Never Promised You a Rose Garden” or “One Flew over the Cuckoo’s Nest.” One of our doctors administered our electro-shock treatments, and we were also bombarded with overwhelming dosages of Thorazine, Mellaril, Stelazine, Haldol, Prolixin, Cogentin, Kemedrin, and other physically debilitating and emotionally paralyzing drugs.
Life in those years passed by for me like some kind of nightmarish, horror movie where one is strapped to one’s seat and cannot leave the theatre. Patients were inevitably released from there, however, when their hospitalization insurance and financial resources finally ran out—“spontaneous and instantaneous cure!” Life was hardly much better, however, after I was released from that hospital. I returned to treatment by psychiatrists in Akron only to be prescribed an endless blanket of habit-forming benzodiazepine drugs.
I had meandered in and out of law school at the Ohio State University and University of Akron about nine times before 1974 in a blur until finally passing the state bar exam. I knew the law backward and forward—Asperger’s patients are hardly stupid—I just had trouble spitting it out under pressure. I worked in the family law office and real estate business until my parents passed away.
I could find no answers as to why I had been so cursed by Divine Providence. Prayer and religious learning over the years were fruitless. Finally, I came to hate God for bringing me into this world to be so sick. Helpless and seemingly hopeless, I wished I could only afflict Him with the same degree of pain with which He afflicted me. I feared the day when my parents would die, and I would thereafter languish in my illness, isolated and rejected, a lone pariah in society or incarcerated in a mental institution. Profound frustration, rage, grief and bottomless depression were fed by then perceived hopelessness and a prognosis of incurability. I was quite selfish, for what little I had of anything would eventually run out. I believed myself to be under siege by a hostile Divinity. And I was always lazy, for what was the use of trying to accomplish anything—that would be like trying to arrange chairs on the deck of the ill-fated steamship Titanic. Most frightening through all this, I was either driven or frustrated by forces I was barely conscious of and which were utterly beyond my control.
By the time I was in my fifties both of my parents had died, there was no one left to take care of me, and I would have become a homeless, friendless derelict or a lifetime inmate in a mental institution if I would not have been introduced by a neighbor to local Alcoholics Anonymous (AA) meetings to wean myself off that habituating cocktail of alcohol and prescribed drugs I had been administered since childhood. Releasing those chemical crutches, I somehow began to trudge forward on the road to a happier destiny with the help of new-found friends in that fellowship. I still felt crazier than a “hoot owl”, but I was somehow functioning at least at some basic level, and I no longer felt alone. I was “volunteered” to help maintain the property and receive AA guests from around the country and overseas, so I no longer felt useless. I would find actual purpose in life—new promises would take hold.
Eventually I would recover enough to re-establish the family’s law practice and real estate business, resume the observance of my religious beliefs, and sit on the board of our local chapter of the Autism Society of America. I can finally say that I have been guided through highly perilous waters by a Supreme Navigator who now has me living a fruitful and fulfilling life far beyond any of my previous expectations. I now tell folks, “There is no such thing as a hopeless case. Never quit before the miracle happens!”
Also as early as the 1970s I was beginning to explore the possibilities of using vitamin and mineral supplements and dietary measures to control my problems. By the 1980s I learned that our AA co-founder had begun using tomato juice, “Karo” syrup, and sauerkraut to nourish the early recovering alcoholics in his care, and subsequently switched to vitamin tablets and mineral salts, so I needed only to pick up his trail. P5P, a form of vitamin B-6, magnesium, zinc and omega-3 essential fatty acids seemed to help me considerably. I found that I needed to avoid oatmeal and whole grain wheat. The more gluten there was in a food, the more it seemed to bother me, as did foods high in serine and argenine. I also began to rotate different foods in my diet to reduce allergic propensities.
Hope dawned in 1996, a few years before I reached the age of sixty, when a historian at the AA museum, recalled that a cofounder of AA knew a specialist in homeopathy, who worked with him on alcoholics who were dually diagnosed with behavioral and other disorders during the 1930s and 1940s. I located a physician in town who had studied homeopathy in Germany and conventional medicine at Ohio State, and who had done his residency at St. Thomas Hospital, the first alcoholism and addictions treatment program in the world. Would this doctor be able to properly diagnose and treat me after so many others had failed over the previous six decades?
Much to my surprise, he told me that no specific medical diagnosis of my case would be necessary. He informed me that homeopaths do not diagnose or treat disease entities as such—they prescribe highly diluted, attenuated, or titrated remedies of a substance which would cause given symptoms to neutralize those same symptoms. The long forgotten diagnosis of my disease entity would not be re-established for over four more years until common knowledge of Asperger’s would reach American physicians after the year 2000.
It was my good fortune to reap the benefits of being treated by many diverse homeopathic practitioners. Layer by layer, my hitherto implacable strata of Asperger’s and Tourette’s symptoms were inexorably forced to yield before the irresistible juggernaut of homeopathy.
For fine tuning of my recovery program I also use flower essences.
Romance and love life can comprise a particularly difficult gauntlet for the recovering Asperger’s patient to negotiate. We live in our own tightly controlled worlds. The concept of opening one’s self up for total and irrevocable merging with the body, mind, and soul of another human being is scarier than Hell—the mother of all phobias. Yet there is nothing we crave more than the ultimate relief for the mother of all pain, the futile yearning for a mate. And so we have the mother of all frustrations. In the course of recovery, that alone a hitherto unimaginable concept for us, I would place mating at my farthest frontier.
Two early relationships failed, one in college and another during law school. Subsequently there were furtive, futile and love-starved relationships with over a dozen women who were just as messed-up as me or worse. Ironically an accomplished psychiatric social worker had actually fallen deeply and profoundly in love with me, but I could not permit myself to respond to her adoration because I did not feel at that time that I could ever meet all of her expectations for us. I just never dreamed that I could ever achieve my present level of recovery.
I frequently think about all the future challenges which will be faced by young people with autism who will be inevitably thrust by the passage of time and the inexorabilities of their biological makeup through puberty and sexual maturity. They shall be tormented by the craving for love and demand for sexual release which they shall have overwhelming difficulty coping with, and this challenge boggles the mind. And the feasibility of marriage would always be questionable. This is a real time bomb. This will be their worst hurdle in life, their most formidable gauntlet. May God have mercy upon their souls. I was able to become involved in the lives of my brother’s children and to become part of raising them. This was at least a partial substitute for having lost the opportunity to have married and have children of my own.
In addition to the modalities of therapy I have used, the support groups I attend have saved my life. Without them, suicide would have been inevitable, once my parents passed away, and I faced long-term hospitalization in mental institutions.
As important as it might be to establish what the deleterious symptoms of Asperger’s may be, it is absolutely necessary to know about all the advantages and strong points which an Asperger’s survivor can look forward to. All parents and professionals studying Asperger’s and all survivors, should study as much as possible the encouraging biographies of prominent figures in world history suspected to be “Aspies”, including Amadeus Mozart and Albert Einstein. This will tell one how far any patient can go, with adequate support and his or her own determination.
James K. Feldman, JD
A modified version of Mr. Feldman’s story aired on AutismOne radio on December 7, 2006.
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.