So I’m a mutant, then: being diagnosed with autism at the age of 45

 

It was very early on that my parents first realized that something about me was a little askew.

The way my parents told the story, my mom entered the kitchen where I was seated at the table.  She set the mail that she had just retrieved from the mailbox on the kitchen table before me.  I pointed at the envelope on top of the stack and said, “Entex,” the name of the gas company printed on the front of the bill.

I was sitting at the kitchen table in my high chair.  I was perhaps 18 months old.

Initially, my parents chalked it up to me matching up the company name with the logo – “Oh, isn’t he clever!” – but more signs began to surface that were harder to explain away.  As they watched me carefully, they found I was drawn to any sort of written material – books, magazines, newspapers.  Mom wrote out a list of words at random for me, and found that I could read them all.

The upshot: I figured out how to read before I learned to speak.

As can be imagined, I don’t recall learning to read.  I do recall, at a very young age, being asked by my father to show off my mutant ability.  “Watch this, fellas – here, son, read this!”  Yes, he was treating me not unlike a trained monkey, but it’s hard to fault a father for being proud of his son.

However, as any parent of a gifted child will tell you, the teaching of the gifted is itself a form of special education, and in the late 1970s, classes for abnormally bright preschoolers hadn’t quite come into being yet.  As the time neared for me to begin school, my parents had some pretty hard decisions to make.  First up: What, exactly, were they supposed to do with a preschooler capable of reading on at least a third-grade level?  So after visiting with a range of specialists, they enrolled me in a preschool program offered through University of Houston-Clear Lake.

By all accounts, it was a good first step.  It was a reasonably advanced preschool program intended as a vehicle for their education grad students.  I got to spend time around peers closer to my age and level of ability.  But it was also in this class that my parents got a taste of what awaited me socially.

“You just never had friends,” my mom lamented recently.  “It’s like you were here, and all the kids were over there.  And it was so painful for you, simply because you badly wanted to have a friend.”

Before long, I aged out of preschool.  My parents cast about for an option that would be suitable for my peculiar situation.  Finally, they settled upon Catholic school, where teachers would spend reading time with me one on one.  From kindergarten through second grade, I attended Our Lady of Mount Carmel School in Houston.

I retain very fond memories of my time in Catholic school.  Yes, some of the nuns were every bit the stereotypical hardcases you see in the movies, but I actually recall most of the teachers being both rigorous and kind.  The nun who worked with me and a few other children was very sweet and grandmotherly.  Most of all, I recall having some friends.  There was a boy whose home I visited on a couple of occasions.  Being a parochial school probably had a lot to do with it, but overall, I just remember the kids being friendly.

But the time eventually came for me to enter public school.  From third grade onward, I attended a variety of public schools.  And it was at this time – especially starting in sixth grade, after we moved to Pearland – that the harassment really got going.

The bullying…good heavens.  I had been on the receiving end of a bit of it in places like Little League, but for whatever reason, it went into overdrive the very day I walked into school in Pearland, and it didn’t end until the very day I walked out seven years later.  I got into a fight here and there to try to shut it down – that was my father’s answer, and he violently berated me for not fighting more – but for reasons I simply couldn’t understand, it seemed that there was nothing to stop me from being a magnet for taunting and mockery.  And not just in school: at church occasionally, in the Church-run Boy Scout troop more regularly.  My peers routinely made it crystal clear to me that I was not one of them.  As one of them said in high school: “We consider it our mission to make Boots’s life a living hell.”  The moments of peace and respite were precious and few.

Everywhere I went – at school, at church, and at home – I was a thoroughgoing misfit.  I simply didn’t have close friends, not at church and certainly not in school.  By and large, on the off chance that anyone really did try to get close to me socially, either they discovered that they were better off distancing themselves, or I deliberately kept them at arm’s length.  In some ways I felt the need to keep a highly secure firewall between school and ongoing events at home, but even the occasional person who had only the best of intentions found me quite unreceptive to overtures of friendship.

As to my academic performance, it pains me to say it, but I was a chronic underachiever.  Yes, I was in advanced classes for English and history, but I routinely procrastinated, failed to complete assignments, skated by with C’s and D’s in classes that I absolutely should have aced.  It certainly didn’t help that I was under siege more or less on a full-time basis, but I just remember looking at my assignments and feeling despondent.  (That changed after I marched one season of drum corps the summer before my senior year – suddenly, all those C’s and D’s turned into A’s and B’s.)

When I escaped graduated from high school in 1993, I felt liberated.  College wasn’t on my immediate horizon, of course – my parents couldn’t afford it, and I certainly didn’t have the grades for any sort of scholarship – but at least I wasn’t perpetually surrounded by people who quite openly loathed my existence.  I was grateful to walk out and not look back.

Not quite one year later, I left for my two-year mission for the LDS Church.  And while I was eager to serve, I quickly discovered an unpleasant truth: my natural magnetism for harassment was still very much a thing.  Specifically at the hands of the other missionaries.  And occasionally, at the hands of other members, and even the occasional investigator.

I was at a loss to explain it, but they just seemed all too eager to poke fun, mock, harass and generally make life unpleasant.  And even when I had a decent companion, they just found me unbearable.  More than one quite manifestly couldn’t wait for a transfer.  (I should add that I remained in regular contact with one of those comps, and was quite heartbroken when he passed away some years ago.)

In time, though, things did change for me, particularly in my last area.  I was fortunate to have tremendous success there.  I had a couple of fantastic companions who I managed to click with.  I’d like to think that the experiences I had had leading up to that point refined me a bit.  As one of those companions said, “Boots, you’re not tense, you’re intense.”  I even earned a nickname: Mad Dog Boots.

I returned home in 1996, married in 1997, continued on stumbling my way through life.  Got into therapy seriously in 2000 when my family of origin issues and various trauma scars really started to intrude on my daily life.  Went through some really rough patches as I addressed all that rubbish, but eventually felt like I got things reasonably sorted out.  Found my way into journalism school, worked hard, did well academically, went into the work force.  But even here, there remained a few constants:

1. I simply didn’t have many close friends. If I ever really got close to anyone, it was through church, and even then, this only happened on very rare occasions.  It’s probably best to say that I had gone for so long without friends that I became accustomed to not having any.
2. While the harassment and mockery mostly went away, being seen as a nerd and a loner never stopped. In places such as the MBA program, I found that classmates seemed to appreciate the intellectualism, but continued to keep me at a distance when they found out there were, shall we say, conditions attached.
3. Holding down a steady job has been a struggle. Check out my LinkedIn and see for yourself: it’s customary for me to move to a new role once every 12-18 months.  The longest I’ve ever held any full-time job has been slightly more than two years.  Part of that can be attributed to my field of choice – digital marketing definitely lends itself to a degree of job hopping – and there were several instances of layoffs (thanks for the memories, Schlumberger), but in some instances, I think I just wore out my welcome.

That’s a reasonable backdrop for the revelation I received this summer.  Shortly after I got laid off in May (I think that was my fourth or fifth layoff?  I lost count), I researched that early condition from my childhood – learning to read at an unusually early age.  I discovered that it has a name: hyperlexia.  But the Wikipedia page mentioned this bit:

Some experts believe that most children with hyperlexia, or perhaps even all of them, lie on the autism spectrum.

Well, that’s interesting, I thought to myself.  I do love a good Google hunt as much as the next SEO, so I dug a bit deeper.  And what I found stopped me dead in my tracks.  That last link – a short quiz for signs of autism in adults – really gave me pause.  I didn’t meet every single criterion, but I probably hit 70% of them.

So I started polling people who I felt knew me well enough to answer this question: “Have I ever manifested any behaviors that led you to speculate that I might be on the spectrum?”

This led to yet more revelations:

• One friend, probably one of my best friends at this point in my life: “Absolutely. You have your tics.  Sometimes I question where you learned your social cues, if you learned them at all.”
• A former coworker: “I’d be surprised if you weren’t autistic.”
• A former branch president, who called me as his second counselor several years ago: “Probably.”
• Sometime back I decided to surprise my wife at her high school for her birthday. One of her colleagues who works with special needs students met me briefly in passing.  A few days later, she approached Shirly privately and asked, “So is your husband on the spectrum?”  “No,” Shirly responded, “he’s just weird.”
• My mother-in-law – who I know for a fact loves me dearly – said to Shirly when told that I was getting tested for autism, “Well, that makes a lot of sense. He lacks social skills.”
• If you’re a kid, getting tested for autism is easy. If you’re an adult, getting tested for autism is a good deal more challenging.  The recommended approach is to reach out to a pediatric neurologist who is willing to work with adults.  So I asked a woman of my acquaintance who had an autistic son if she could provide me with the contact information for her son’s doctor.  She did so graciously, and then commented: “Honestly, I had thought you were autistic.  You remind me a lot of my little boy.”

That particular doctor wouldn’t work with me, but I found a clinic that would.  Last week, the official diagnosis came back:

In sum, Ryan meets the diagnostic criteria for 299.00 (F84.0) Autism Spectrum Disorder, without accompanying intellectual impairment and with accompanying language impairment. A Level 1 severity level, requiring support, is noted. The language impairment is in pragmatic language.

“Basically, this would have been considered Asperger’s about seven or eight years ago?” I asked.  Pretty much, confirmed the psychologist.

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So here I am, freshly diagnosed with autism at the tender age of 45.  Yes, I’m a high-functioning autistic, but I’m still autistic.

As I’ve shared the news with family and close friends, I’ve been asked how I feel about the diagnosis.  Initially, I was kind of despondent.  A bit sorrowful.  And there’s still a tinge of that, deep down.  Some of the stigma around autism has faded, but it’s still very present.  I had long been accustomed to being a misfit, but to learn that I’m autistic – well, that’s taking the oddball game and going pro, isn’t it?

But Shirly mentioned this: “You know, unlike the infertility, at least here there’s a root cause.”  And that is truly reassuring.  When I look at the range of experiences I’ve had throughout my life through the prism of autism, a whole lot of stuff – the harassment, the isolation, the general social incompatibility – makes a lot more sense than it ever did.  And it goes beyond the bullying and harassment.  I was the subject of more than a few interventions – some on my mission! – by generally well-meaning individuals who were genuinely trying to show me how to form friendships.  These fell into that list of attempts to befriend me that ultimately went nowhere.  It wasn’t for lack of effort, but for lack of capacity: I’m good with languages, but what they were trying to articulate just came off as gibberish.

I’m still sorting this out, but I think I’m far enough along that I can characterize what I’ve come to understand about being autistic, or at least what it amounts to for me.  Simple version: I have social and psychological blind spots.  I spend a ridiculous amount of time inside my own head, and it’s so hard for me to get outside of my head and connect with others emotionally that my level of connection is almost always purely intellectual.  I can rattle off facts and figures all day long, but engaging with a person at an emotional level is a thoroughly foreign concept.  So I generally fall back to what is comfortable for me, which is staying so firmly and snugly inside my head that I fail to observe personal behaviors that violate unspoken social norms.

I have a rhythm and cadence to my daily routine.  I don’t think it’s as extreme as other autistics, but consider:

• From my mission until sometime in 2012, I ate two types of cereal for breakfast: Honey Bunches of Oats and Frosted Mini-Wheats. I rotated between the two of them to keep from getting burned out on a single flavor.  Then a doctor once recommended a protein-rich diet to keep the triglycerides at bay.  Since then, my daily breakfast for the last seven years has been egg whites and light yogurt.  Again, I rotate between two different flavors of yogurt to avoid burnout.  #protip
  • Shirly pointed out: “It’s worse than that. You have to eat the eggs and yogurt in that order.  If the eggs are still cooking, you refuse to eat the yogurt first!  Drives me UP THE WALL.”
• When I was at Schlumberger, one of my coworkers noted, with an apparent mix of amusement and annoyance, that I rotated among the same three or four meals for lunch all. the. time.
• As many of my Facebook peeps are aware: I LOVE TACOS and I would happily consume them daily if I could. I simply must have my fix at least once a week.  Again, part of it is attempting to adhere to a protein-rich diet, and much of it is due to serving a Spanish-speaking mission, but I consider myself a taco connoisseur, and I frequent a select few taquerias that meet my exacting standards.  To borrow from the apocryphal quote from Ben Franklin about beer: tacos are proof that God loves us and wants us to be happy.  (Given the relatively recent phenomenon of Taco Tuesday, I don’t know if this is an autistic thing, but if it is, I say it’s a feature and not a bug.)
• I recently took up cycling. After no more than three rides, I have found my preferred neighborhood route.  Circle back in a year or so, and it’s a safe bet that I will still use that particular route almost exclusively.
• When climbing or descending stairs, I try to always finish on my right foot. If I take the staircase in question frequently, I’ll recall the number of stairs in question so that I know which foot to lead off with so I land on my right foot.  I always attributed this to my years in marching band and drum corps, but I’m pretty sure I take it a bit extreme.
  • Shirly commented: “So that’s why you knew the number of steps in our staircase an hour after we moved in.”

Other quirks about me suddenly come into focus.  Consider:

• When I’m deeply into some sort of intellectual exercise, I have this tendency to rock back and forth, just a little. At one point early in my mission, while knocking on doors, my fellow missionary laughed as we were leaving a doorstep.  “Your Spanish is really good,” he said, “but you were rocking back and forth while talking to that lady!”)
• If I’m speaking with somebody I’ve just met, I just can’t bring myself to look them in the eye. Family and close friends are a different matter, but if I don’t know you, I’m probably not going to look you at you directly.  In fact, that may be the case even if I do know you.  When polling people about their perspective on my potentially being autistic, I approached my former boss at Schlumberger, who laughed when reviewing one of those autism checklists that mentioned lack of eye contact.  “Yeah,” she said, “that’s you for sure.”
• I don’t have the flat affect to my speech that tends to be a characteristic of autism. What I do have is a rather bad case of what I like to call “resting grump face”: when I’m deep in thought or have spent way too much time in front of a computer monitor, I look either depressed or angry.  This is probably one of those bugs that attracted the attention of bullies.
• An item in one of those lists of signs of autism took me by surprise: bumping into things. If I’m walking and happen to be really mentally focused on something, it’s not uncommon for me to bump a shoulder into a wall, or stumble over something.  (“You’re like a human pinball some days,” Shirly says.)  It just never occurred to me to observe whether others did this.
• I type awfully loudly. I have beaten more than one keyboard into pieces over the years.  This was really a problem at one agency I worked at several years ago that had an open floor plan – other people couldn’t concentrate with me hammering away at my desk.
• In groups of four or more, I am at a loss when it comes to participating in an ongoing chat. I simply can’t figure out where and how to jump in.  Conversely, at a party, I will camp out in a corner with another person and have a two-hour conversation.
• I don’t have much of a filter. I’m blunt and to the point, sometimes offensively so.  (My mission president liked to say that I was “direct.”)  It’s gotten me into trouble more than once personally and professionally.  A few Latinos have commented that between my level of Spanish and directness – which also happens to be characteristic of the Latino culture – I’m a reverse coconut: white on the outside, brown on the inside.  The comments on my Spanish are flattering, of course, but spending an unusual amount of time in Hispanic communities over the years probably only reinforced an autistic tendency for bluntness.
• Most of all – probably worst of all – I run my mouth entirely too much. I know for a fact it annoyed the living daylights out of my MBA class, and I really can’t blame them.

One of the most trying elements of this has been the toll that it has taken on my professional life.  Experts routinely say that a huge element of professional success is networking; “It’s not what you know, but who you know,” as they say.  Well, if you’re really good at knowing things, but decidedly unsuccessful at forming and nurturing relationships, you can be at a real disadvantage.  (I had one boss tell me, on more than one occasion, “I’ve never met anyone who thinks the way you do.”  I ended up quitting that job shortly before getting fired.)

To be clear, I truly don’t blame my parents, or even the education system of the day, for letting me slip through the cracks in my childhood.  The level of awareness and understanding about autism that exists today simply wasn’t around back then.  Remember, my behaviors first started presenting in the mid-1970s; Rain Man was still more than a decade away, and that depicted autism as something that would land you in a mental hospital.

I do blame all the therapists – and there were several – who treated me for trauma and depression in the 2000s.  I saw all you people numerous times, and it never occurred to any of you that it might be a good idea to have me tested?  Thanks so much, guys.

Yes, getting this diagnosed sooner would have saved me a whole lot of social collisions.  But rather than look backwards, let’s look forward.  I don’t regard being autistic as a prison sentence or a reprieve.  I’m not going to shame myself, or feel sorry for myself, or give myself a pass.  My intent is to try to adapt as much as possible to the world around me.  The world isn’t going to accommodate my oddities – not because it won’t, but because it can’t.  So I’m going to adjust as much as possible, and work to overcome my blind spots to the extent possible, to see if the road ahead might be navigated a little more smoothly than the road that brought me here.

If you’re a friend who has stuck with me, in spite of my abrasiveness and social awkwardness: thank you, thank you, thank you.  I got used to having next to no friends a long time ago, but that doesn’t mean that I wouldn’t like to have friends.  I am doing my best to be socially agreeable and accessible, and will continue to do so.  Your continued understanding and patience is appreciated beyond words to express.

To colleagues past and present: thank you for your patience, and please accept my apologies for being difficult.  I do try to do good work, and I know my intensity and drive keep making me the bull in your china shop.  I’m doing my best to be more aware of others and how I present myself.  I’ll keep getting it wrong, but hopefully less frequently.

Professionally, I’ll continue to freelance, at least for now.  When I joined Schlumberger in 2018, I told myself at the time that it would be my last shot at a career in corporate America – and right on cue, some 18 months in, I found myself on the street yet again.  It’s really nobody’s fault – who could have expected the oil market to tank right before the coronavirus hit?  I’m not unwilling to consider a return to corporate, but in the meantime, I have plenty of work to keep me busy.  If nothing else, I get to type just as loud as I want.

Most of all?  I really would like things to be a bit easier for my little lady.  That poor thing has been married to an Aspie for 23 years and didn’t realize it until a few weeks ago.  Look, we all laugh at Sheldon and his silliness, but be honest: would you want to live with him?

When all this came to light a few weeks ago, I was relating to my mom by phone how I felt like I had this outer layer of porcupine needles that I couldn’t shed no matter how hard I tried.  In response, Shirly came to where I was sitting, put her arms around me and held me tight.

“You may be a porcupine,” she said, “but you’re my porcupine.”

I’ll try just as hard as I can to lose the quills, little lady.