My life as one of the many belatedly-diagnosed autistic older people

For as long as I can remember, I’ve always known I was an oddball.

For most of my life, it never occurred to me that there would eventually be an official name for my general unusualness. I assumed it was just coincidence that I was an oddball in so many different ways.

Had I been born in the 1990’s or later, I almost certainly would have been diagnosed, as a child, with autism or maybe PDD-NOS.  But, growing up in the 1960’s and 1970’s, I was just a weirdo.

Growing up as a namelessly weird child

As a child I had no friends other than my parents.  There were children who played with me, but they all regarded me as a freak, for reasons that were never clear to me.  The kids in the neighborhood who played with me were mostly two-to-four years younger than me.  Kids my age didn’t like me at all.

Besides my social difficulties, I also had various odds and ends of neurological quirks, such as unusual food aversions and the left side of my body being more sensitive to heat than the right side of my body.

But, on the bright side, my parents were proud of me for doing very well academically, and for my musical ability.

My academic performance and my musical ability must have been a huge relief to my parents, because, earlier, they had worried that I was “retarded.” I was slow to learn to walk and slow to learn to talk.

At around the same time I finally started talking, at around age four, I also figured out how to play the piano by ear — one-finger melodies at first, then chords.

In kindergarten, I was always the bad kid, although I don’t remember very many specifics of what I did wrong. Eventually my kindergarten teacher told my parents that I needed either to repeat kindergarten or to attend a non-public school with smaller classes.  (There was no Special Ed back then.) My mother let me know, at the time, that the reason for this was that I was socially under-developed.

My parents enrolled me in a small Lutheran parochial school. After the first few months or so, I began doing very well academically, thanks in part to excellent tutoring by my parents.

I was VERY lucky in this regard, because my academic skills and musical ability, and my parents’ pride in these things, enabled me to feel basically good about myself even though other kids saw me as a freak and often teased me.

But I wished I could have friends.

Finding fellow oddballs

Unlike many undiagnosed autistic girls, I didn’t respond to my isolation by trying harder and harder to figure out how to fit in.  Nor, fortunately, did my parents pressure me to try harder and harder to fit in.  Thus, for the most part, I was spared what I eventually learned is one of the main sources of depression and anxiety for “high functioning” autistic children, especially girls:  the stress of what is now called “masking.”

Instead, by my mid-teens, I concluded that the only way I was ever going to find friends was by seeking out fellow oddballs. The kinds of oddballs I sought out were (1) people who shared one or more unusual interests of mine and (2) people who shared at least some of my disagreements with mainstream culture. For example,I was a gay rights activist for a while in college, way back in the late 1970’s, long before what eventually became known as the LGBT community became at all respectable.  (I’m bisexual.)

During my twenties through my forties, I got involved in a variety of oddball subcultures.  Several times I was a founder or co-founder of a small group, either in-person or (in my early twenties) a pen-pal network or (in my forties) online as well as in-person.  I discovered that I was better at leading small groups than at participating in groups led by others.  There were usually at least a few people who, as far as I could tell, genuinely appreciated what I was doing.

Learning about and coping with my difficulties, as an adult

Though I managed to be reasonably good at starting and leading small groups, I knew that my social skills were uneven at best.  In particular, I knew that I was lousy at picking up on subtle hints.  Luckily, in the early 1980’s, there were a lot of popular magazine articles on “assertiveness training” — how to be assertive without being aggressive.  Also at around that time, a friend gave me a book on how to give and receive constructive criticism.  I found those articles and the book very helpful, not just as a guide to my own behavior but also, and even more importantly, as a guide to helping me figure out who I could trust as a friend.  I realized that I needed my friends to be assertive with me and not rely on subtle hints.

When I was in my mid-twenties, one of my friends brought to my attention the fact that one of the reasons why I came across as weird was the behavior of my eyes.  I made very little eye contact, and my eyes wandered strangely when I talked to people.

To autistic people brought up in subsequent decades, it may sound very odd that no one confronted me about my lack of eye contact before.  When I was in grade school, “Look into my eyes” was something said by vampires on the TV serial “Dark Shadows.”  My mother sometimes said “Look at me” when she was talking to me, but she wasn’t fussy about what part of her face I looked at, and she wasn’t even particularly strict about me looking at her at all, as long as I showed at least some sign that I was paying attention.

In my mid-twenties, at around the same time I learned about eye contact and my lack thereof, I also became aware that most people pay a lot more attention to body language than I do during a conversation.  I became aware that most people feel that they can learn a lot more about another person in an in-person conversation than over the phone — whereas, for me, there isn’t a whole lot of difference between an in-person conversation and a phone call.

I soon realized that both my lack of eye contact and my lack of attention to body language were aspects of a single larger problem, namely, my much worse-than-normal difficulties with multi-tasking and and with shifting my attention from one thing to another.  In particular, I have extreme difficulty focusing on a conversation and focusing on any visual stimuli whatsoever at the same time — unless the visual stimulus is, itself, the topic of the conversation.  (For example, I would have no trouble looking into someone’s eyes if the topic of conversation happened to be the physical appearance of that person’s eyes.)

I soon realized, also, that my difficulties with multi-tasking and attention-shifting were affecting many other aspects of my life besides just my social life.  I concluded that (1) I would never be able to drive a car safely and (2) I would never be capable of the responsibilities of being a parent.

Making a living

From the mid-1980’s to the early 1990’s, I managed to hold down a steady full-time job as an electronic engineer.  This was back in the days when geeks were geeky.  Engineers were not yet expected to have “excellent interpersonal skills,” and the workplace was not a social club.  This was also back in the days of cubicles, before today’s “open office” fad.

Alas, my job disappeared when pretty much the entire consumer electronics industry moved to Asia.

Luckily I had a friend who happened to work for the New York State Employment Service.  He informed me about the 599 program, which allows a person to receive extended unemployment benefits while attending school fulltime, in a program that can be finished within two years, instead of looking for another job.  This program is drastically under-funded, hence not advertised at the unemployment office, and hence is available only to people who just happen to be lucky enough to find out about it.

So I seized the opportunity to get a master’s degree in computer science.

But I never got a fulltime in-person programming job.  I now work mostly from home, as part of a two-person team, making a lot less money than I could if I worked in a corporate office.

Beginning to learn about autism

In late 2008, I met the man who eventually became my business partner and then my boyfriend.  At the time, he and I both began working, at very low pay, for a start-up that ended up going out of business a few years later.

Soon after we first met, he told me that he had been diagnosed with something called “Asperger’s syndrome,” which I had never heard of before.  I looked it up and the description sounded kind of like me as well.

At around that same time, my niece’s daughter was diagnosed with autism.  When my niece asked relatives who else in the family might be autistic, various people thought of me.

I didn’t pursue the idea of “Asperger’s syndrome” or “autism” further at that time, because I was not under the impression that there were any useful services for adults, and it seemed to me that the whole process of seeking a diagnosis would just be a big distraction from getting work done.  Also at that time, I was not yet fully aware of just how many aspects of my personality could be labeled as “autistic” traits.

The beginnings of my hopes for the autistic community

I’ve long been very aware of the great things that can be achieved by a sufficiently well-organized oddball subculture.  In particular, the LGBT rights movement has succeeded beyond my wildest dreams.  When I was a gay rights activist back in my college days, I expected there would be some progress, or else I wouldn’t have bothered, but I never dared to imagine that same-sex marriage would one day become legal within my lifetime.

But not until January 2018 did I put two and two together and start wondering about the possibilities for an autistic subculture — and how it might be able to benefit my life by making it easier for small teams of programmers, like my boyfriend and myself, to find clients.

So I began doing lots of online reading about both autism itself and the “autism community,” which consists of only a very small adult autistic subculture plus a much larger organized subculture of (mostly NT) parents and professionals, focused mainly on kids.

A couple of months later, I began attending ASD support groups in Manhattan, both professional-led and peer-led, and I got on the very long waiting list for a diagnosis at a price I could afford (by a psychology student “extern” working under a fully qualified psychotherapist).  I finally got my diagnosis in May 2019.

During the long wait for my official diagnosis, I continued to do a lot more online reading about both autism itself and the “autism community,” and I continued attending the Manhattan support groups.  Also during the long wait, I began participating on Wrong Planet.  (My WP intro thread: Hello from NYC, begun October 2018.)

Meanwhile, during the spring and summer of 2018, a young man attending one of the Manhattan support groups organized a weekly telephone conference call, which I participated in for a while.  He then organized, with some help from me, a small peer support / self-help group that met monthly in Queens.  Soon afterward, he moved to Brooklyn and was no longer able to attend.

When he left, I took over the Queens group, because I was the only attendee with experience leading groups of any kind.  But I felt uncomfortable leading it, because I hadn’t yet been officially diagnosed, although, by that point, I was 99% sure I fit the definition of “ASD.”  So, after a few more meetings, I put the group on hiatus until I finally got my official diagnosis in May 2019.

Throughout the time that I’ve been attending support groups and reading up on both autism itself and the “autism community,” I’ve also been thinking a lot about what a well-organized autistic community/subculture might look like and how it could be built.

I’ll share my thoughts on this matter. in future blog posts.  [Edit, January 12, 2020:  See Longterm visions for the autistic community on my main informational website that I began creating in December 2019.]

The neurodiversity paradigm and me

When I first heard of “Asperger’s syndrome” back in 2008 and then looked it up on the web, I noticed one thing right away:   One of the DSM IV’s optional diagnostic criteria was:  “Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus.”  In other words, what is commonly called “special interests.”

I’ve known for a long time that I have much more intense interests than most people do — and I’ve always thought of this as one of my good traits.  For me, pursuing knowledge of some intensely fascinating topic is what makes life worth living.  And, were it not for the existence of a sufficient number of other people who feel the same way, there obviously would never have a birth of science or any other scholarly endeavor.  I also wondered:  How on Earth did the authors of the DSM ever manage to get through grad school without this trait?

Another of the optional diagnostic criteria was “Persistent preoccupation with parts of objects.”  I wondered:  Uhm, isn’t that, too, a trait you pretty much have to have in order to be a scientist or engineer?

So, while some aspects of “Asperger’s disorder,” as described in the DSM IV, were clearly disabling, other aspects seemed to me to be good or neutral.  My immediate reaction was anger that the psychiatric establishment seemed to be pathologizing good or neutral traits of mine, much like the way homosexuality had been considered pathological back when I was younger.

Later, when I began reading up on autism in earnest in early 2018, I found that just about every aspect of my personality — good, bad, or neutral — is considered to be either an “autistic trait” or, at the very least, a trait much more common among autistic people than among NT’s. Even my talents are in the latter category. Thus, if all my “autistic” characteristics were somehow to be excised, I would literally be a completely different person.

I also found that there were other people out there who shared my positive view of some “autistic traits.” I soon ran into the famous Hans Asperger quote: “It seems that for success in science or art, a dash of autism is essential” — a remark very similar to my own initial reaction to the DSM IV diagnostic criteria. I would expect the majority of successful scientists, scholars, and artists to be people who at least fit the “broad autistic phenotype” (BAP), although probably only a minority would fit the criteria for full-fledged ASD — at least in today’s world. In earlier eras, when these fields may have been less competitive, I suspect there would have been a much higher proportion of scientists and artists who, by today’s standards, would be classified as having ASD.

So I’m wary of the idea of a total, radical “cure” for autism. I don’t have an issue with the idea of treatments for specific disabling aspects of autism. I also don’t have an issue with attempts to cure degenerative conditions like Rett’s Syndrome and Childhood Disintegrative Disorder. I also would advocate that a much higher percentage of treatment-oriented research be focused on the more severely-disabling kinds of autism (currently under-represented in autism research funding). But, for reasons I’ll explain in more detail in future posts, I have major objections to the goal of completely eradicating “autism” in general.

Instead, those of us who are work-capable need autistic-friendly workplaces where our sensory needs are accommodated and where we can focus on our work without needing to spend our limited energy on trying to conform to highly unnatural (for many of us) social norms of eye contact, body language, chit chat, etc. (We would still need to learn a smaller, more manageable set of what I call “autistic-friendly social skills” to enable us to get along with each other and with autistic-friendly NT’s. More about this in future posts.)

What I think needs to be done

It’s unlikely a complete radical “cure” for autism in general could be developed in the foreseeable future anyway, especially given how many (at least hundreds, maybe thousands, of) different kinds of autism there apparently are, many of which seem to have a complex mix of causes. Perhaps a more attainable goal for the autism research establishment might be for as many as possible of the more severely disabled autistic people to become less severely disabled — at which point many of them would need autistic-friendly workplaces too.

To spark the creation of more (and better-paying) autistic-friendly workplaces than now exist, the autistic community will need to become a lot better organized than it is now, as I’ll detail in future posts.

Another concern:  There’s probably a lot of room for improvement in the kinds of therapy and education that are given to young autistic children these days.  The most common such therapy is Applied Behavioral Analysis (ABA), whose original goal was to make autistic children “indistinguishable from their peers,” i.e., make them behave exactly like NT kids.  Many autistic bloggers have said that they were traumatized by being subjected to ABA as kids.

I see a parallel between ABA-induced trauma and the extreme stress of “masking” reported by many late-diagnosed autistic adults who did not receive any therapy as a child, but who were likewise under a lot of pressure to conform to NT norms of eye contact, body language, etc., and to suppress odd but harmless stims.

IMO, any therapy for autistic kids needs to keep the following principles in mind:  (1) Too much social conformity is bad for autistic people — bad, as in traumatic, at least for many of us.  (2) The best thing that can be done for an autistic child is to discover and encourage the child’s particular strengths.

Thanks to my parents noticing and encouraging my strengths and not worrying too much about eye contact, body language, etc., I had a much better childhood than many autistic kids (diagnosed or undiagnosed) have apparently had, despite my social isolation.  And, as Dr. Stephen Shore has said, you can’t build a career from remediated weaknesses.

However, in order for many parents (and childhood autism therapists, and autism researchers) to even remotely consider the idea that conformity to NT norms might be anything less than an unalloyed good, and to consider a strengths-based approach instead, there will need to exist lots of autistic-friendly workplaces where their kids could make a decent living without needing to be “indistinguishable from their peers,” if/when they ever grow up to be work-capable.  And that’s yet another reason why we absolutely need to build a community that can spark the creation of more and more autistic-friendly workplaces.

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