I am a survivor.
As a problem child I did not speak until I was four, spent two chaotic years in Kindergarten, an extra year glued to grade 6. In 1946, when I was twelve, my mother took me to Stanford University for an evaluation. The psychologist who examined me declared nothing was wrong, that I would likely outgrow whatever was troubling me.
Since this was long before Autism and Aspergers came on line so to speak, I lost out. Not only did I not outgrow anything, by age 14 I was heavily into antisocial behavior, as well as being picked on by schoolyard bullies. My increasingly nefarious activities ran the gamut from annoying teachers to intricately fabricated, potentially life-threatening acts of destruction to school property. Sometimes I planned it so that others, bullies in particular, got blamed. In time of course the staff caught on. Punishment was swift and harsh, transforming me into the best-behaved child in the lot albeit not for long. In retrospect it’s a wonder I didn’t wind up in reform school. Or dead.
I read gobs of science-fiction in those turbulent days, finding myself more at home on impossibly remote, imaginary worlds than the alien world I was strapped to.
By high school I was no longer able or willing to communicate my distress through antisocial means. I became invisible and meek in that oversized learning factory, at the same time ostracized by my classmates. And I was picked on by a sadistic teacher. My father intervened, resulting in my being placed in another class the following day and the teacher promptly fired. Grades were mostly C’s along with a jolt of D’s and F’s, necessitating grinding repeats.
Amazingly, I made it into San Jose State College on what was then called second probation, ended my first semester with 3 F’s and one D for a hard semester’s workout, followed by expulsion and a stern letter warning me to stay off campus.
While there I had spent precious hours in the stacks researching the subject of intelligence, desperately seeking a way somehow to waken what little intelligence I had, if any. Imagine my dismay when I discovered that giftedness was not something one can acquire but is obtained courtesy of genes. I felt like crying when I read that; how I envied those who came so equipped. Conclusion: you have it or you don’t and I didn’t, period.
Somewhat daunted, I hied off to San Mateo Junior College twenty-five miles away just in time to begin anew. Dropped out before semester’s end. Attended University of North Dakota two thousand miles away, beyond the reach of incriminating transcripts, barely made it through one semester. Attended more colleges, finally eking out a B.S. in electronic engineering eleven grueling, tortuous years after limping out of high school—in engineering of all fields, math being my weakest subject.
Turned out I was utterly incapable of doing electronic engineering, where, like school, everything became a jumble. The field held no meaning for me whatever—notwithstanding my constructing long-range FM broadcast receivers as a hobby, as well as making my own TV station from parts scrounged from discarded radios and TV’s and a discarded iconoscope. I also put together a high-power ham radio station from scratch in the days before single-sideband.
Went back to college in the 70’s, managed somehow to wrest a M.A. in English Lit—after flunking my exams and having to hobble back for another try.
Through it all I had consulted twenty—twenty five therapists in the form of school counselors, social workers, psychologists, psychiatrists. Growing increasingly desperate I crashed several times, suffered internment in psychiatric wards in faraway cities where I knew no one. Result was my ending up beached on disability, where I have remained since.
Self esteem got squished nearly to the vanishing point, all but invisible except perhaps under an electron microscope. I could not relate to people except, curiously, those who were highly intelligent, well-educated—which puzzled me greatly as I felt nowhere near to being in their league.
Thoughts of suicide became a constant companion through those dark days of unremitting despondency. Unable to make it on my own I eventually returned to California to live with my aging mother, later to serve as her caretaker as she faced the inevitable decline into the twilight of Alzheimers.
Fast-forward to March 2003. During a chance conversation the word autism came up. My curiosity aroused, I typed autism into Google after I got home. Within minutes I ran into a word I’d not heard or seen before: Aspergers.
I downloaded a questionnaire, gave it to my landlady and friend Joan who then administered it to me: Lay diagnosis: Mark has Aspergers. What a feeling of excitement that gave me: maybe what had plagued me all my life had a name, and having a name might be something that could be treated, ameliorated, perhaps even fixed pray tell. It was a seminal moment.
Further searching landed me on the Aspergers Association of New England site. On submitting an inquiry I received a prompt email suggesting I make an appointment to come in for an interview. I spent at least an hour there, plying Dania with a bevy of questions. She gave me a list of nearby psychiatrists to contact, as I had decided in earnest to seek a formal evaluation. On the way home I wondered what I was getting into; turning back was unthinkable.
I called a handful of these psychiatrists, which proved discouraging since several did not return my calls and those who did said they didn’t do evaluations for someone my age. Then I scored: Dr. Daniel Rosenn was receptive to my call. But I was taken aback when he told me his waiting list was eighteen months.
When I explained that I was only a few months in front of my 70th birthday, he said he would see what he could do. Got a call a few days later informing me my appointment was to be four months hence, July 9th, 2003, two days after my birthday. Super! This allowed me ample time to write a detailed summary of my life, as well as cull through other writings I’d done earlier about my childhood. A month before D-day I mailed off a 50-page packet.
Upshot was a diagnosis of both Aspergers and high-functioning autism, giving me a solid foot in each camp. Dr. Rosenn said two things that stuck: one, he wished he could’ve knocked the zero off my age of 70, and two, that I was in the 99th percentile in intelligence in some areas. Me, that intelligent? Oh, my.
Soon after, I was informed that a support group made up of other Aspies was being formed at AANE; would I like to join? I jumped for the opportunity, especially since I would not have to depend on others for transportation.
Turns out this has been phenomenal in the budding reconstruction of my life, now underway. Here I was, receiving positive feedback from a group of highly intelligent people for the first time in my life, feedback that proved both consistent and unassailable. I didn’t know what to make of it at first, wondered how the others felt toward me and if I could stay the course. To my amazement I found myself capable of holding up my own end.
I’ve begun to gather the shards of my long-ago shattered self-esteem, seeing if I can fit them back together. It’s been slow going, but going nevertheless.
It has become clear that had I had a proper diagnosis early on followed by the right kind of guidance, I would surely have fared better in my trek through life. I did not fall through the cracks because there were no cracks to fall though—it was free-fall from the start. I had no mentor, no one to champion me through difficult times, no one to show me the way or illuminate the darkness.
My emerging transformation this past year could not have taken place were it not for AANE and Dr. Rosenn. It was like coming ashore after a life of bobbing up and down in a sea that seemed to stretch to infinity in all directions, a vast repository of hopelessness and despair. Unaccountably I never went under, never abandoned the struggle despite persistent and overwhelming odds.
My situation shows so clearly why organizations like AANE are important—nay, vital. As Ben Franklin quipped during the Revolutionary War, we hang together or we hang separately. Aspies without support hang separately; take it from me. Pick a hundred Aspies at random and you have a hundred Aspies. But link these individuals in a coherent, synergistic pattern with proper guidance and something remarkable begins to happen: a budding gestalt arises. Similar to the way life amounts to more than the sum of its carbon chains, proteins and DNA, consciousness is more than a mere tangle of neurons and synapses and neurotransmitters. Mundane somehow gets transformed into magic.
I’ve encountered a piece of this magic through AANE, for what it has given me and continues to give, something that nobody or anything else has come close to pulling off. Psychotherapy came to naught, school savaged me, various social programs fell short of what I needed, my upbringing left me clueless how to proceed or where to turn next. The outcome was a life of isolation and an improbable career choice that went nowhere.
It’s a four-hour, ten-mile walk from Needham to and from AANE every Friday morning. To date I missed only one meeting in the past half-year owing to dangerously cold weather. I’d walk twice as far if I had to and I could too. To put it straight I feel I have received more from AANE in the last six months than from everything else in my life combined.
Yes, this long-overdue journey comes late, some would say very late, perhaps too late worth fussing over, at a time when most my age think of retirement and the fabled golden years. While I have lost out on much, it is gratifying to know I can still surge forward, still break out of a decades-old, rusting iron mask of repeated setbacks. But—and I can’t stress this enough—I could not have done it alone.
I need AANE, you need AANE, and AANE needs all the support it can get from all of us—and anyone else we can catch.