When I learned the answer, I was not at all surprised…

15 minute read

October 10, 2022, 9:20 AM

Recently, a question that I had been wondering about for a long time was answered definitively.  For many years, I had suspected that I had some form of autism spectrum disorder, and over the summer, I took myself in to be evaluated in order to finally get an answer to that question.  And the answer is yes, I have Autism Spectrum Disorder Level 1, which was formerly known as Asperger’s Syndrome.  I kind of knew this all along, but I really didn’t want to self-diagnose and then act based on a self-diagnosis.  I’m not an expert here, after all, and for something like this, I wanted to do it the right way.  I never really discussed it much on here, but just about all of my friends who are autistic had suspected that I was autistic as well.  They knew what they were looking at, and they saw it in me.

It certainly took me long enough to get around to getting diagnosed, though.  I had wondered if I was on the autism spectrum for quite a number of years, and I had found Dr. Kara Goobic, a doctor who diagnosed autism in adults, about three years ago.  I then kind of mentally filed it away for a while, as I had other things going on, though I did ask about other people’s experiences with Dr. Goobic on Reddit one time in a comment and got no response.  Then this past spring, my curiosity about the autism question finally got the best of me, and I began communication with Dr. Goobic via email.  We discussed what the process would entail, we determined that her practice was able to take my insurance, and we scheduled appointments around my work schedule.  The first two sessions discussed my history growing up and as an adult, I completed some questionnaires (Elyse also completed one questionnaire asking about her experience with me), and then the third session was feedback and discussion.  The appointments were great.  Dr. Goobic and I got along quite well, and the various sessions went smoothly.  And in the end, on the third session, which was feedback, I got a lot of different resources and such to check out, and overall, it was a very positive experience.  I went into the sessions with Dr. Goobic with the assumption that I was doing this primarily for my own edification, and that from a functional/practical standpoint, having a diagnosis would change nothing for me other than making me a more informed person, and therefore, I had nothing to lose from it, and everything to gain.

The diagnosis confirmed what a lot of us had already suspected, so my reaction was something along the lines of, “Well, there you go.”  That was exactly the diagnosis that I was expecting, so I was not surprised at all.  A surprise would have been if the process had completed and it had turned out that I wasn’t autistic in some way.  Regardless, it’s good to know what the name of the thing is, because when you know what it’s called, then you can do some research on the thing based on its name, and get a better understanding of what it is.

All of that said, I have many different feelings about this autism diagnosis, especially as I was diagnosed much later in life than many people with autism are.  I’m in my forties, after all, and I want to say that many, if not most, are diagnosed when they are still children.  I don’t harbor resentment over not being diagnosed when I was a child, even though, in hindsight, I was showing all of the signs, and no one ever referred me for further investigation.  My understanding is that autism wasn’t as well understood back then, and people weren’t as aware of it as they are now.  As a result, it wasn’t something that people really looked for and considered back then unless the person was what is now considered a level 2 or level 3.  The higher-functioning cases like mine tended to fly under the radar a lot of the time.  It wasn’t until much later that those level 1 cases got diagnosed with regularity.  Though knowing now that it’s autism, it certainly helps explain a lot of things over the years.

It’s interesting how many times we missed opportunities to find this when I was growing up, when it was practically waving at us and no one ever thought about it.  The earliest instance that I can remember was when I was in kindergarten in Rogers, Arkansas.  I recently learned, after Elyse tipped me off and then doing some research on it, that persistent toe walking was a sign of autism, though the two had not yet been formally linked when I was a child.  I have always been a toe walker, and I got made fun for it in school.  One time, a kid said to me, “You walk like a [homosexual].”  That came off as more than a bit hurtful, because I felt like it was something that I couldn’t help.  Then there was an instance in 2014 where a homeless person at Mount Vernon Square station shouted at me, “You walk like a bitch!” after I wouldn’t give him any money.  That one, Elyse and I both laughed about at the time, and still laugh about from time to time to this day.  In any event, this Journal entry from 2003 shows a very worn pair of shoes, with the wear mostly focused around the balls of my feet.  Look at that wear pattern and see for yourself.  When I was in kindergarten, the school noticed the way that I walked, and, after discussing it with my parents, referred me to the school district’s physical therapist.  I’ve gone on at length about how inept my elementary school was at working with someone like me, and this was no exception, as they tried very ham-handedly to get me to heel-toe it like the other kids were doing.  Right off the bat, no one ever fully explained to me what I was doing and why it was a problem.  It was practically accusatory the way they presented it to me, like I was walking differently than the other kids on purpose just to be bad, and that I just needed to be shown how to walk correctly and then just do it.  As a result, I didn’t have much patience for those visits with the school physical therapist, because they were more or less accusing me of walking “wrong” and then trying to force me do things differently, and I never understood why they were doing what they were doing in the first place.  Their strategy could simply be summed up as, “Why won’t you just comply?”  Eventually, the visits with the school physical therapist just stopped without any real discussion of it.  I suspect that they just gave up, and quietly let the matter drop.  And I was fine with that, as no one had bothered to explain it to me, and the school physical therapist got on my nerves.  I suspect that because they only tried to treat the symptoms, i.e. the toe walking, without looking for a root cause, they were doomed to fail.  And failure is exactly what happened.

It is worth noting that my toe walking was addressed again in 2011 when I was seeing a podiatrist, because some of the foot issues that I had been having at that time were related to my calves’ being too tight, which caused problems downstream.  The hip bone’s connected to the thighbone and all of that, and no body part operates in a vacuum.  The podiatrist prescribed stretching, and while that addressed the pain that I’d been having, it ultimately didn’t cure the toe walking, though it did reduce it somewhat.  But since his training was more musculoskeletal in nature, that’s exactly what he addressed – especially since my entire reason for coming to him was, “This hurts, make it not hurt.”  None of us suspected autism as the root cause, because we were treating foot pain, and not walking, per se.  At the time, I assumed that the physical therapist from elementary school was an idiot for not prescribing stretching to get the results that she wanted, rather than just demanding compliance without explaining why it was an issue.  And truth be told, the school physical therapist was indeed an idiot – just not necessarily for that reason.

Meanwhile, I absolutely called it in the Journal entry about my fifth grade experience.  At that time, I wrote, “I imagine that my being the way that I was came from some mild form of high-functioning autism, but this has never been formally diagnosed.”  Fast forward about four years, and now we know that autism is exactly what it was.  Sharon Bradley didn’t know this, thinking instead that I was just a difficult student to deal with, and treated me accordingly.  As such, she was verbally abusive to me, and her whole strategy was to try to verbally beat me into submission.  The entire time at Grimes Elementary, not one person there thought about autism.  But in all fairness, level 1 cases like mine typically flew under the radar back then, and they assumed in those cases that the kid was weird or otherwise just difficult, but that still doesn’t excuse the way that Sharon Bradley, Judith Carmical (principal), Shirley Burns (guidance counselor), or anyone else at that school treated me.  I spent enough time in the guidance counselor’s office that Mrs. Burns, of all people, probably should have figured something out.  Of course, it’s not like the school guidance counselor is a psychologist or otherwise trying to help you improve or otherwise understand your own mental health.  Their job is to be another tool to create obedient workers, and verbally pound you into compliance.  As such, their utility is very limited.

Then there was middle school, where Frank Wade referred me to the guidance counselor because of what he considered to be a lack of social skills.  The guidance counselor there, Jan Lovell, had the potential to be a great help, but squandered it, once again using her counseling skills not to help get to the root cause of the problem and refer for further evaluation to actually figure out what is going on, but instead to treat the symptoms and attempt to verbally pound me into compliance.  In other words, Frank Wade, for as much of a piece of work as he was, might have actually been onto something, albeit for all of the wrong reasons, and then the guidance counselor really dropped the ball.  But such is to be expected.  After all, the guidance counselor works for the school, and her job was ultimately to help the school meet its goals.  Any benefit to me was merely an extra perk.

(Take home lesson for the kids: the school guidance counselor is not your friend, they are not your therapist, and they are not trying to help you on your own merits.  They are not a substitute for a real mental health professional.)

Beyond that, high school presented no further missed opportunities for diagnosis.  Trust me, I still had plenty of issues in high school – just no obvious opportunities to refer for any sort of evaluation.  Then in college, I didn’t do too well during the regular semesters, where I was taking four to six classes that ran about three or four months, but when I took summer classes, where I was taking two classes that ran for four weeks, I did noticeably better, even though we were covering a week’s worth of material every day.  Seriously, I was getting mostly Cs and Ds in the regular semesters, but then I was pulling mostly As in those summer classes.  At the time, I realized that the semester format didn’t work well for me, and that the four-week summer format suited me much better in getting the desired results.  However, in hindsight, I wonder if it was also that I never really learned how to study growing up.  I got good marks and got into college without really having to put in much effort outside of the school day.  It just sort of did.  That didn’t work so well once I got into higher education, but it worked during the summer format.  I imagine that it’s because I could focus on a smaller number of topics, but more deeply on each one.  In any event, I would generally do poorly during the regular semesters and then balance it back out with high performance during the summer sessions, to finish with a C average.  But, hey, Cs get degrees, and it doesn’t matter what the grades were anymore once the degree is conferred.  I am just glad that it’s over with, and I never want to go through something like that again.  In hindsight, though, I do wonder how things might have gone if I had been diagnosed in college and been able to take advantage of whatever support that JMU might have had for autistic students at that time.  Perhaps I might have done better, but who knows – it’s all water under the bridge now.

It’s funny, though, some of the things that I did in school that stand out to me.  One thing was that when it came to opportunities to chat it up, I tended to gravitate towards the adult staff rather than the other kids.  I couldn’t relate to the kids, and it was kind of hurtful when I would try to chat it up with a teacher on recess duty, and they would dismiss me, telling me to “go play”.  I’m like, I am having fun.  This is like play to me.  Likewise, all the way back in elementary school, the fire alarm system fascinated me.  I explored this interest a bit in first grade, where the school staff took the time to show me how the magnets on the fire doors worked, but then after first grade, I kept that interest to myself for the next 12 or so years.  I guess that I was a little self-conscious about it, and worried that people would find it weird, so I hid it.

I think that’s probably about the only time that I really ever masked as far as autistic tendencies went.  One thing that Dr. Goobic remarked on, and that I have to agree with, is that I do not mask when it comes to such things.  I stopped hiding my interest in fire alarms back in 2000 or so, and I think that the Internet really helped with that, as it has connected people with similar interests all around the world, no matter how obscure the interest might be.  I like to think that I was the one to initially plant the seeds of what is now a healthy fire alarm enthusiast community, much like Andrew Reams has done with elevator enthusiasts.  Really, there’s nothing wrong with having an obscure interest, and it’s healthy to connect with other people who share that interest.  No, you’re not a weirdo for finding fire alarms, elevators, or whatever else to be quite interesting, and wanting.  It’s perfectly fine, even if it’s a less common interest than, say, tennis or philately.  In any event, the attitude shift was more or less rooted in the idea that you only live once, so you might as well enjoy.

I believe that this diagnosis also explains my desire for structure.  I’ve always done well in structured environments, and I tend not to do as well in an unstructured setting.  I’ve always liked things to be nice and predictable.  I was the kid who had their watch synchronized with the school master clock, and could tell you exactly when the bell was going to ring, as in, 3, 2, 1, and there’s the bell.  I suppose that this is also why fire drills caused me such anxiety in school: because the fire alarm was unstructured.  It really was the only unstructured thing in an otherwise very structured environment.  It did not operate on the same timer like the regular bell did, so I couldn’t precisely predict it, plus it was a really big noise.  It was one thing when they told us when it would be, and knowing that it was coming and fidgeting waiting for the loud jolt, but not knowing when one might occur as in the case of surprise fire drills made every day a bit hellish.  You get through one day without a fire drill, and then the anxiety begins anew the next morning with a new day with about five different times when the school liked to have fire drills, usually at the beginning and end of first and second block, and the beginning of fourth block at the end of the day.  Let’s not even talk about days when the fire marshal was there doing their walkthrough, because then you knew that there would definitely be a fire drill at some point that day, and it didn’t come at the usual times of day.  Whenever the fire marshal finished their inspection, that’s when they did the fire drill, regardless of when in the day that was, with no advance warning to building occupants.  A surprise fire drill could happen at any moment.  Let’s just say that I was a lot more at ease in school on days when it was raining or really cold out, because I knew that they wouldn’t have a fire drill that day.  Seriously, I used to hate warm, sunny days at school because I knew that the likelihood of a fire drill was higher.  I remember one time in seventh grade when we were in Phys. Ed class and out on the track, and everyone started pouring out of the building for a fire drill.  Since we were well away from everything, we were able to ignore the fire drill and just continue doing our thing.  I was quite pleased to have missed a fire drill like that.  After all, I knew that we were good for the rest of that month, with the specter of a surprise fire drill off the table for a while, plus it was a freebie for me, since I wasn’t jolted out of my concentration for once.

That desire for structure carries into the workplace as well.  The jobs that I’ve really thrived in are the ones where the roadmap is set and then it’s just a matter of execution.  That’s one reason that I liked working for CFW Information Services back in the day.  That was a completely structured environment.  You came to work, and your entire day was already laid out.  You plugged in when it was time to start, you unplugged at the time listed for your break, and returned when it was over.  And if they needed to change your break for business reasons, they notified you well in advance, which allowed us to adjust.  I thrived there, and I imagine that if they had not closed in 2002, I might have been there for a while longer, and would have never gone to work at Walmart, i.e. the worst job I ever had.

With Food & Water Watch, meanwhile, I’m honestly surprised that I lasted as long as I did before being de facto forced to quit.  It was the ultimate in unstructured environments, as there were no processes or procedures for anything, pretty much by design, as the organization itself was formed when a group of renegade employees at Public Citizen split off to form their own organization because they didn’t like the structure and process that Public Citizen operated with.  In other words, “we hate structure” was ingrained into the organizational culture as a de facto founding value.  And as such, they resisted efforts to introduce structure to the organization at every turn.  Even simple things like “all purchasing will occur on Fridays” and “all purchasing requests must be submitted to this email address for processing” and “the deadline for purchasing requests is 10 AM on Fridays” were met with lots of resistance.  That fighting against structure made my job more difficult and less efficient, and that lack of efficiency cost the organization money in reduced productivity when I would get pulled eight different ways at once for everyone’s alleged “emergencies” that, more often than not, were because they had failed to plan.  Way to be good stewards of your donors’ money.  But it fit the character, as a lot of those employees behaved like petulant little children, who were all, “I want it, and I want it now!” and would complain to the management when I prioritized their requests lower than they might have wanted.  Then when we would have these little office “happy hours” every other Friday, I tended to find myself being in a conversation, and then find myself kind of squeezed out of it, partly because of background noise and partly because some people just didn’t want to interact with me when they didn’t have to.  So those little happy hours weren’t always so happy for me, and were often awkward, lonely affairs because I was not necessarily as socially adept as some of my colleagues.  Likewise, in hindsight, I feel like I was subtly being made fun of in a lot of ways for my various eccentricities by certain staff, though I didn’t realize it at the time.  Let’s just say that I’m glad to be away from such a toxic and dysfunctional workplace.

Meanwhile, I love my current workplace because of how structured it is.  We pick schedules every few months, and that’s what we do until it’s time to pick again.  Our day is predetermined based on those schedules, and we get a manifest every day that tells us exactly what we are doing, where we are doing it, when we are doing it, and in some cases, how we are doing it (e.g. if we’re supposed to run a trip empty rather than in passenger service, or if we’re doing the last train of the night and have to follow special procedures related to that).  I excel in my job because I know what’s going on for my entire day, and can allot my energy accordingly, and execute things as they are given to me.  Deviation from that manifest, such as during a service delay, tires me out because I don’t know what’s going on anymore, and can’t plan accordingly.  It’s why I like to say that in my line of work, I want a nice, boring day, because it means that everything will follow that manifest exactly.

In thinking about my diagnosis, I also had a bit of a realization: I don’t actually know what “neurotypical” is.  Since I was not diagnosed as a child like many autistic people are due to the way that the condition was understood back then, I grew up thinking that I was just really smart and somewhat eccentric, like a lot of smart people are.  I didn’t grow up knowing that I was autistic, and so I just sort of did me.  Very little masking, if any.  As such, I know what’s going on in my own head, but I have no idea how a non-autistic brain operates.  It’s kind of weird to think about.  Additionally, with no diagnosis of autism, no one really tried to train me in what “neurotypical” was because everyone thought that I already was.  It was only when I met Elyse and others later on that I learned about the ham-handed efforts to “treat” children who were diagnosed with autism early in life, such as applied behavior analysis, which Elyse and a few others who experienced that sort of treatment as children have very strong negative opinions about, but which I never experienced myself (which I suspect is probably a good thing).

That same idea about this diagnosis’ having come in middle age also affects the way I interact with the autism community.  I didn’t grow up with it at all, and as an adult, it was only after I met Elyse and others that I learned about any community-type aspects of it, and then, it was only tangential involvement, since Elyse was in a few Facebook groups and would share stuff from those to me, but I was a relative outsider.  I learned about Autism Speaks and why they’re a crappy organization mostly from Elyse, but since I didn’t grow up with a diagnosis, I didn’t give it all much thought, right along with “light it up blue” or “light it up red” efforts to raise awareness for autism, and the puzzle piece vs. the rainbow infinity symbol.  Now, I feel as though I’m technically part of that community, but still very much an outsider mainly because I was diagnosed later in life, and as such lack a certain amount of shared experience.  But that’s okay, because I don’t have to go all-in on everything.

So there you go, I suppose.  I imagine that my thoughts on this will continue to evolve, especially considering that I get to spend a lot of time alone with my thoughts on days when I’m working.  But it’s good to know that it’s autism, because now I can work with it and continue to be awesome, rather than be stymied by or be puzzled by something that we don’t know about.