Personal Accounts of Being a University Student with HFA/AS

Phil Schwarz (, diagnosed with mild AS:

"Shoulds" can definitely lead you to make wrong choices, or stay in an environment more painful than necessary. Be careful of them. Be careful of when your kids try harder to do what they think their parents want them to do, than to do what is necessarily best for them.

I am still fighting off the "shoulds", though to some extent, understanding the role of AS in my life has made it easier.

I am the "family dropout" -- my father's a retired English professor, my brother-in-law's an active English professor (both of them PhDs of course), and my wife and my sister both have master's degrees in healthcare administration.

Plenty of "should" material there, regarding college and career aspirations.

I graduated 3rd in my high school class, applied to Harvard, MIT, Chicago, and Michigan, and was accepted at all but Harvard.

I went to Chicago because I thought that's where my parents, especially my father, would have wanted me to go.

Chicago flattered me with a University Scholarship, a merit scholarship not very big financially, but yet another "should". Put me in a group of a dozen or so really outstanding fellow students. Required maintaining a B average to retain from year to year. I really struggled to do so.

College, especially Chicago, was so different from high school. In high school, I could get into a field of knowledge gradually, at my own pace. In college, gradations of difficulty were unpredictable: the week's problem sets in math and physics sometimes contained a question or two that were the stuff of a master's thesis. I had no sense of how to navigate and organize my time and my work and write off what I couldn't tackle in the time I realistically had available.

I skipped classes when I couldn't turn in the problem sets, at first. That only got me further behind. It never occurred to me to ask others for help, until fellow physics students in my sophomore dorm corralled me into doing problem sets together with them. Even then it was only the environment; when I moved out to an apartment I found it just as hard as ever to initiate getting together with someone to work on assignments.

Chicago would have been an excellent place to initiate and grow the kinds of student-professor relationships that lead to real advancement, at least in academia, recommendations into graduate school and careers. I had no clue how to do this and plenty of fear and inhibition about it. That aspect of what makes Chicago a great place for truly gifted students was utterly lost on me, and it's one very real regret I have.

That's what I'd been labeled, as a kid, gifted. Allowed to be odd (at least by parents and teachers) because I was gifted. And I certainly had that expectation of giftedness upon me going into Chicago, as a University Scholar.

But then I found out that there were students way more brilliant than me who weren't odd. Being odd was apparently _not_ "part of the deal" for being gifted. My self-esteem crumpled under the weight of all this.

And failing at all the "shoulds" (or almost failing, hanging on by the skin of my teeth) just accelerated the downward spiral.

I went into freefall in my junior year of college -- skated around the edges of a nervous breakdown -- but had by then, through all my frantic "should"-driven energy, trying to maintain that average -- built up enough coasting velocity to graduate with general honors and a bachelor's of science in math, by shedding any really challenging courses my senior year -- which is what I did. But that represented even more failed "shoulds".

The experience left me pretty much wasted in terms of contemplating going on to graduate school. Just too painful by then. And the parental pressure had at least consciously stopped once my parents realized how badly I was hurting inside.

(My fragile emotional state marked the beginning of my 17-year slog through talking therapy for depression and dysthymia that lasted until our son Jeremy's atypical development (leading to a dx of high-functioning autism, or, technically, according to the American DSM-IV, PDD-NOS) caused us to discover that there were high functioning forms of autism and that "mild" AS described what was going on with me better than anything I'd seen in 17 almost-nonstop years of therapy. There is a God, and Xe is what we call here in New England a wicked good practical joker.)

I took a programming job (still possible for pure math majors in 1978) and labored under the delusion that one of these years Real Soon Now I was gonna go back to graduate school. I never did.

Now, when dealing with people who like to trail scads of initials after their names, I mention that "BS" is the only abbreviation after my name, and that like former Justice Potter Stewart (who was actually referring to pornography, but who's quibbling), "I know it when I see it".

I can joke like that, but I still have worries about my career (the current phase of which, a job as an internal software-architecture consultant, I can summarize as "stating the obvious about technology", which then begs the question of why they're paying me such good money to state the obvious... and for all the good solidly middle-class money still is pretty pedestrian in terms of what real _value_ I'm producing, when I look in the alumni directory, in comparison with the academic and professional and managerial things my former college peers are doing...).

(Actually, it's an interesting phenomenon. I am well aware -- intellectually -- that what I do at work is not obvious to our clients and my management, else they wouldn't turn to me for it or pay me. But I haven't convinced my gut of that. At a gut level, there's a theory-of-mind lapse: if something is obvious to me, why isn't it obvious to anyone who's reasonably intelligent? Intellectually I know that is faulty reasoning, but my gut cannot be convinced of it. Evidently my gut is not as advanced in ToM skills as my head. And self-doubts of this kind, unfortunately, have gotten mis-interpreted pretty routinely in my journey through psychotherapy as self-hatred or self-dislike or, at minimum, persistent self-esteem problems of unknown origin.)

And I still have a flashback that sticks in my craw. I struggled with coursework and never got the hang of developing relationships with professors that would be rewarding in terms of advanced study and career, but I did pursue (with the same frenetic energy) my own fixated Aspie passion of getting a decent permanent location for the tiny little ham radio club station we had at Chicago. I sought out and arranged meetings with a bunch of administrators in charge of space planning and such, over the course of my sophomore year, and I gather that word of this got back to the dean of students in the College. This must have amused her greatly, this blind-yet-driven Aspie obsession, because the only words she had for me, a full two years later at my graduation, were "Hello, Phil, how's your radio?".

The Great Expectations that started with my early reading back at age 4 when my parents used to call me "Pip" (yeah, it's a bummer being an English professor's kid sometimes), and continued through an honors-track public school career and a merit scholarship at Chicago, had come to this, as representative of the lasting impression I'd left behind. How's my radio.

That still sticks in my craw, 20 years later. But now I understand where it came from. I hope she ultimately discovered what AS is, and how better to understand Aspies, and would no longer write Aspie students off like that by making dismissive fun of their ways. I've often, after flashing back on this scene, muttered to myself a wish that she rot in Hell -- but I think I really only wish that if she were presented with the clear opportunity to learn, and to develop respect, and rejected it.

It wouldn't be for another 16 years that I'd learn of AS as the correct name for what was going on with me, and even though my parents actively sought to reassure me that I was doing well with my own place and a software engineering career, I was perpetually haunted by the "shoulds".

Recognition of the role AS plays in who I am was paradoxically liberating. It helped explain the "shoulds". But I had to really wrestle with the psychiatrist I'd been referred to after my eval, because he couldn't accept that my acceptance of the AS label _wasn't_ just another form of self-devaluation born of persistent low self-esteem. And I had to really walk on eggshells to find my own place on the continuum, since I was identifying as AS, yet AS is supposed to be a disability, and surely _I_, who'd gotten a check-mark in most if not all of the Check-Boxes of Adult Life -- steady job history (check), car (check), house (check), spouse (check), kids (check) -- wasn't _disabled_, now, was I?

That raised a whole different set of "shoulds" -- should I be identifying this way or that way -- no longer centered around pleasing parents and teachers and so on, but still all caught up in catering to the expectations of others in order to gain acceptance -- or not to lose it.

And realizing that -- that the "shoulds" represent an inordinate amount of power for the expectations of others to have over me -- seems to be one key to dissolving them.

That kind of "should" can now get replaced by more pragmatic kinds of "should": how much, and to whom, should I "out" myself at work? Or within our synagogue community (where I still feel simultaneously drawn closer intellectually and culturally, and paralyzed socially)? This kind of "should" does merit careful thought, but it doesn't seem to produce the kind of worthless anguish that the old kind of "shoulds" did (and do, but less and less).

What a long strange trip it's been.

-- Phil, who once saw a T-shirt with that Jerry Garcia lyric in Hebrew, with a small Grateful Dead logo at the bottom, and who really really wants one, even though he's not a Dead fan.

Oh -- it's "Ezeh tiyyul rahok u-muzar zeh hayah", at least in transliteration :-) .

Phil Schwarz

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