As AANE celebrates its 25th year, we are highlighting key moments and contributions. In 2017, AANE held the conference Aging with Aspergers, which explored the unique issues those on the spectrum face as they age. At this conference, community member Mark Goodman shared this moving story of growing up in a different time and being diagnosed at age 70.
Now at age 87, Mark is healthy and well, and receiving support through AANE’s LifeNet program.
I was born years before the likes of Aspergers or Autism were even thought of. And it was decades more before these conditions became known beyond a coterie of academics and researchers. My mother, a perceptive parent, took me to the Psychology Department of Stanford University at age eleven in 1944 for an evaluation. Determination was nothing amiss outside of my being high-strung and anxious, conditions I’d outgrow. Except I never did.
As I was to learn decades later, it was more than being high-strung, a good deal more. I came into the world with a number of genetic factors, unknown at the time, later identified and named after their discoverers in some instances. One was Aspergers, after Hans Asperger, an Austrian pediatrician who first described the syndrome in 1944, eleven years after I was born.
I was of course given no counseling or guidance because such didn’t exist, and wouldn’t until half a century later. I was in the meantime buffeted and bruised by a world I barely grasped, miffed too many times to count. Teachers were no help; family was no help, instead branding me as a goof off without ever saying so openly.
Life in the classroom was a nightmarish concatenation of confusion, frequent punishments, steadfastly poor grades, repeating failed courses, bullying, parental scolding and other niceties. I fought back by destroying school property, plus nearly succeeding in setting the school afire one afternoon when nobody else was around. Fortunately the fire burned itself out so nothing untoward happened save a billowing column of telltale smoke, followed by my being grilled. Though I was chief suspect, nothing could be pinned on me as I taken consummate care to conceal my tracks.
Returned test papers looked like Christmas trees for all the red penciling of numerous errors. I’d see my classmates with A’s and B’s gracing theirs, contrasting sharply with the usual oversized C-minus or D scribbled across mine for all to see. The piece de resistance came in my first year of college: grade point average of 0.4. Yes, zero point four, the result of earning three F’s and one D the first semester. The result of all this was a steady and pernicious decline in self-esteem, now in recovery.
I knew something was amiss early on so sought counseling, seeing over time approximately twenty-five therapists be they school counselors, social workers, psychologists, psychiatrists (twice as an inpatient in different hospitals in different states). All for naught.
(This is merely the tip of the proverbial iceberg of repeated failings and travails, too many for detailing without an accompanying large crying towel.)
Turning point came belatedly decades later after time spent either in college barely staying afloat, or holed up with one parent or the other (divorced), until I finally managed to break free and come east in 1988. It was here I was diagnosed with Aspergers, Attention Deficit Hyperactive Disorder (ADHD), High-Functioning Autism and Severe Learning Disability two days following my seventieth birthday in 2003*.
Revelation! Release! After too many years groping my way clueless in the netherworld of indistinct shadows, a veil of darkness was lifted, allowing me to see the world in a new light barely imagined.
Now other issues are banging on my door. The years are piling on at an alarming rate. I recently turned 84, an age widely regarded as well over the hill. It’s been a long, tortuous, uphill grind to where I am now. On looking back I don’t like what I see: empty years of trudging from nowhere to nowhere. Ahead lies the inevitable downward spiral we’re all heir to.
That scares me. Largely owing to my situation I never found a life partner, never married, never went out on a date, never had a close friend of either sex, never visited another country other than a few brief sojourns into Canada.
So what happens if I lose my independence and can’t flee these four oppressive walls any longer, can’t shop for groceries or make it to the bank? How do I get to Trader Joes which is my main food source when local transportation resources for the elderly and disabled don’t go there? How does one deal with cabin fever when cut off from the world at large?
I suppose I could go back to California where my family resides, a locale rich with memories I’d just as soon forget, be a burden to my family whose members and I share little in common.
Some of us on the autistic spectrum see our generation as a lost generation, as I do mine. It can be painful, comparing our lives with those not on the spectrum who typically married well and started families, obtained and held rewarding jobs, live in good neighborhoods in homes one can be proud of. Instead of having to hole up in a noisy, one room apartment courtesy of public housing, little or no chance ever of gaining higher ground.
*When I was diagnosed, at age 70, the diagnostician commented that he wished he could’ve knocked off the zero of my age, dial me back to seven in today’s world, not the world of 1940 when I was seven, sixty-three years earlier.
But I wonder, given my fascination with electricity at the time might I have been mistakenly steered in the direction of trade school? The boredom of such an existence gives me the shivers.
As I was to learn later, Electronics as a career proved a bum choice. Not only my never having gotten the hang of it, I was soon to discover I had no interest or talent whatsoever. Might an earlier diagnosis of Aspergers, coupled with an effective treatment regimen, have led to something more in line with my needs and desires?
In closing, a few positives: first and foremost I not only survived but thrived, particularly when left to my own devices. I eventually managed to eke out a Bachelors Degree in Electrical Engineering, a Masters Degree in English despite failing on the first round, somehow managing to keep my head above water through it all.
Though diagnosed with esophageal cancer in 1997, followed by major surgery, I’ve enjoyed good health since. My surgeon told me if I survived the following two years I’d have a 50-50 chance of making it to five years. That was twenty years ago this month.