The journal in which the following story was originally published in August 2022 has gone defunct, and the old link to my publication there now leads to some kind of porn site… Yep. That happened… Needless to say, I deleted the old post!

Anyway, I took this development as a sign from the universe that it was once, again, time for me to share this rare prose venture of mine, which has been so formative for me as a parent, a poet, and a recently diagnosed Autistic who’s finally begun applying some of her hardest-won insights related to human identity (as catalogued below) to herself…

 

To Be the One to Say, “Yes!”

By Stephanie L. Harper

“You don’t want to overthink things—that’s how you get an existential crisis…”                                                                        ~ Matthew Harper, age 21

On a bright, late-September day in 2013, just as the maples and oaks were exhibiting the first tinges of their annual decline into dormancy, I hauled my 15 year-old son Matthew to an unassuming barn on the surprisingly rural, southeastern outskirts of Portland, Oregon. There, we discovered a small riding arena, the workspace of an aging Arabian/Quarter Horse Hybrid, Cody, and his spirited sidekick, a Miniature Horse with a red coat and a wild blond mane, named Fire.

In having recently expanded my internet search to include fringe resources (as I’d seemingly exhausted every mainstream option) that might somehow be of help to my son, I stumbled upon Fiona, a certified practitioner of Equine Assisted Psychotherapy (EAP). In preparation for his first session, I’d equipped Fiona, via email, with Matthew’s preliminary stats, including his Autism diagnosis, a list of his medications, and a general synopsis of the severe depression and anxiety he’d been experiencing for approximately six months. Now, wielding a wide smile, she prompted Matthew to disengage himself from my side (to which, in unfamiliar settings, he was typically adhered like a strip of human Velcro). Then, in issuing my summary dismissal with an animated, “Goodbye, Mom!” that left no room for misinterpretation, she invited my son to the first day of the rest of his life.

I found myself bristling from the crisp, melodious affect with which Fiona had sent me on my way (I later learned that Fiona had trained extensively in theatrical performance, and was an accomplished actor, cinematographer, and director). And while her titters of confident laughter continued to reverberate from the arena’s rafters 100 yards away, I sat on a rickety lawn chair pretending to read the book I compulsively held open while trying to keep watch over the distant proceedings.

Strong and handsome, with fair skin, sable brown hair and striking dark brown eyes with thick, long lashes behind the black frames of his glasses, Matthew had always appeared more or less “normal” to any outsider first encountering him. It never took more than a few minutes, though, for others to notice that something didn’t compute—that his chosen “conversation topics” (a. k. a., barrages of technobabble) came out of nowhere, or that he didn’t respond to others’ “small talk” as expected, if at all. Now, at age 15, my son was exhibiting a budding ability to articulate his feelings, beyond a cursory “good” or “bad.” So, that summer, when Matthew confided to me with a quaver in his voice that he felt like he was “stuck in the wrong universe,” I took this as an indication that he might be ready to try psychotherapy. I hoped that meeting with a therapist would work in concert with the meds his child psychiatrist had prescribed for his worsening anxiety and depression. But after several months of weekly sessions, though Matthew had grown comfortable enough with the routine to issue animated treatises on various weather phenomena, geological formations, or other such special interests, he had yet to begin acknowledging the existence of his feelings. Traditional psychotherapy was clearly not the answer for him.  

Now, hearing Fiona’s far-away, bubbly chortling, I fretted.

I’d turned my child over to a strange woman and a couple of horses to determine what it was he so needed—what his own mother hadn’t sufficiently learned in the course of his entire lifetime to give. 

Could I really depend on her to know where to begin? Would any adult be able to forge a connection with a 15 year-old boy whose closest bond outside of his immediate family was currently with the six year-old girl from his gymnastics program with whom he occasionally played Minecraft on the same server?

Two possibilities seemed likely: 1) that horses couldn’t possibly be as magical as the mythology surrounding them would have us believe, and 2) that I had indeed finally completely lost my mind. 

***

Earlier that summer, Matthew made and executed a decision on his own for the first time when he officially quit his Trampoline and Tumbling team. In the months prior, he had become disenchanted with activities of all types, including a distressing lack of motivation in Trampoline and Tumbling, his sport. Just that previous winter he’d told me he could see himself being a gymnast indefinitely. At least, this had been his rationale in February 2013 for wanting to quit his swim team (his secondary sport), which had me so convinced that I helped him quit. But rather than affording him any relief from the “stress” of “over-commitment,” leaving his swim team led to a downward spiral. He began isolating himself and disengaging by degrees from Trampoline and Tumbling.  

Though Matthew struggled for the next several months to force himself through T&T practices and local competitions, he somehow managed to place first in all three of his events at Regionals in Las Vegas, and come home with a silver and a bronze medal from Nationals in Kansas City, MO. Most humans never win medals in gymnastics, swimming, or any sport—let alone autistics who are stereotypically believed to be devoid of athleticism. Research in sports psychology, however, has more recently begun shedding light on the phenomenon of individuals with ADHD and/or other autism spectrum diagnoses (both of which apply to my son) pursuing successful careers in sports, particularly those involving the type of precision, tenacity, and individual focus to which they are often naturally well-disposed. The American swimmer and Olympic gold medal record holder, Michael Phelps, is one such athlete. Matthew’s athletic talent, though, didn’t supersede the fact that he was more interested in the chance of experiencing a severe thunderstorm during his trip to Kansas City in July, than in the prospective outcomes of the National competition for which he’d been training for years. The real anomaly was how well Matthew performed in competition, even as he spent the better part of his time at Nationals frantically running out the entry to the arena to check the sky for signs of inclement weather.

In any case, the medals he came away with didn’t seem to make any impression on him one way or the other, much less did they convince him to continue pushing through his dispassion in the hope that things would improve. One afternoon late that summer, when Matthew didn’t turn up ready to head to practice at the usual time, I went upstairs to look for him and found him lying in the dark on the hallway floor outside his bedroom door. He had made his decision; he could go no further. 

Though I didn’t see it that way at the time, the fact that Matthew initiated any kind of change—whether or not it would necessarily make things better in the long run—was a huge step forward for him. All I knew right then was to support him in asserting himself, even as it broke my heart that the only solution he could see to alleviating his distress was to avoid altogether anything that might be causing it. For him, this even meant dismissing his own achievements as if they’d never happened.  

As for identifying what Matthew’s inner definition of success might be, I had no doubt that it differed vastly from its iconic depiction on a Wheaties box; he was never one to indulge in any version of the proverbial end zone victory dance. Success, for my son, apparently wasn’t the competent performance of a newly acquired skill in gymnastics, nor was it the execution of six strong back handsprings and a back tuck with a crisp kick-out and stuck landing. It wasn’t earning the district’s highest score in sixth grade on the statewide standardized math test,[1] nor was it qualifying for State with a PR in the 100-meter Breast Stroke, his favorite event. It wasn’t being an innately talented musician and photographer, and it wasn’t his passion for exploring the natural world. But it had never occurred to me before now to wonder: if hard work toward and mastery of a skill or interest wasn’t Matt’s idea of success, what, if anything, was it?  

My child was good at everything he shook a stick at, despite his constant social and sensory challenges. But because his “abilities” presented such a stark contrast to his “disabilities”—never mind that psychologists recognize this phenomenon to be a hallmark of autism spectrum disorders—the forms of support he needed the most in his school setting were those he was least likely to receive. Especially when it came to the disparities he exhibited in “executive functioning,”[2] even the supposed special education experts whose job it was to accommodate for the difficulties Matthew faced were stumped. No one could make heads or tails of the fact that the State Pommel Horse and High-Bar Champion was the same sixth-grader who required twenty minutes to cross the classroom and sharpen his pencil. 

When I finally enlisted the services of an Occupational Therapist (OT), Matthew was in the sixth grade of the same elementary school he’d been attending since kindergarten. Though he’d been eligible to receive special education services since he was in the second grade, he was now having more trouble than ever navigating the crowded, noisy classroom. I hoped the OT would identify some specific issues for which the special-ed team could design accommodations to help him operate more efficiently. The OT presented her assessment’s “findings” during the next Individual Education Plan (IEP) meeting: First, she explained that the questionnaire she’d administered to Matthew didn’t turn up any particular problems that his classroom setting posed for him. She then emphasized that he’d been “cooperative” and “deeply thoughtful” in answering her questions, as if to suggest that having a good-natured disposition should somehow have precluded the fact that he was autistic.

“How long did it take Matthew to complete the questionnaire?” I asked, since she hadn’t volunteered that information in her reporting.

“Just over two hours,” she responded with a matter-of-fact tone.

“Oh, so how long does it generally take students to complete the questionnaire?” I probed further.

“Usually around fifteen or twenty minutes.” Her hesitation-free reply hit me like a wave surging in through the conference room window and carrying me into oblivion. The OT, along with two district administrators, the school principal, Matthew’s case-worker of nearly five years, and both his home-room and language arts teachers, looked at me, blank-faced, as I struggled my way back to the surface. “Things that should take twenty minutes take Matthew two hours,” I hissed, my eyes burning with tears. “It’s been five years, and no one here has done a single thing to help him.”

In that moment, it became eminently clear to me how little these people who’d devoted their professional lives to “helping kids with special needs” cared whether or not they actually did so. I finally made the decision that day to homeschool my son, and never regretted it for an instant.

***

At the end of his first session with the horses, Fiona talked Matthew through the process of leading Cody back to the stable and removing his harness. She then strutted toward me with my somewhat-dazed son trailing her. As I scrambled out of the lawn chair, trying not to appear too frantic, Fiona announced emphatically, “Matt did a fantastic job today!” The unexpected familiarity and affection with which she referred to my child made my heart spring into my throat and thrum in a muddle of what I much later understood to be gratitude, tinged as it was with maternal trepidation. “I pushed him,” her mezzo-soprano vibrato continued with its aria of the hero, my son, “I usually don’t have my clients on horseback in their first session, but I knew Matt could do it!”

Fiona walked us to the car, and though her farewells were effusive, she didn’t prompt Matthew to acknowledge her, as every other “specialist” he’d encountered before had always done. She was perfectly comfortable with Matthew’s status of already being seat-belted and re-immersed in Matthew World. It was in no way problematic for her that he’d wasted no time in “checking out” to engross himself in the photos he’d taken with his phone of the little black barn cat, Shadow, who’d been stalking voles in the brush behind the arena. She simply honored what he was so clearly telling us in that moment—that he was done with the interaction—and thereby reinforced the vital truth that there was no reason on earth to expect anything more of him.  

“Thank you for introducing me to your delightful son!” she gushed with a warm grin and a final clasp of my hand.

Later that evening, in a follow-up email, Fiona confided to me that Matthew was trembling as he ascended the step-ladder to mount Cody. He’d ridden a saddled trail-horse during our vacation in Yellowstone several years earlier, but even I’d sensed from afar that there was something wilder about being on Cody, bareback. “It was really edgy for Matt,” Fiona said, “but he was so brave.”

Physically, there was hardly anything Matthew couldn’t do, as strong and fit as he was from being a gymnast for most of his life. But it wasn’t until the moment I read those words, he was so brave, that it finally dawned on me how obscure such a concept as bravery would have been for my son, for whom there was a seeming disconnect between the physical and emotional facets of his being. Matthew’s extreme physicality had been the dominant expression of his identity since early toddlerhood. In fact, it was his constant rocking, stomping, spinning, banging on things, and other intense stimulation-seeking behaviors that had prompted me to funnel him into the sports I’d seen as a “more productive” way to meet his sensory needs. And it was convenient enough to believe that my relief at how well he’d taken to those “socially acceptable” activities was for his sake. When the other gymnastics team parents nicknamed Matthew “Rubber Band Man,” because he was the only six-year-old who could perform both a middle-split and a scissor-split with either leg, I beamed with pride.

When he began gymnastics classes as a preschooler, and when he discovered the calming, organizing effect of water and found his way onto the swim team in elementary school, I had no concept of what was to come. That Matt’s natural predilection for physical exertion would land him on a competitive gymnastics team by age six was the farthest notion from my mind. And that he would have a boatload of State and Regional titles in gymnastics and be in the top five in Oregon Swimming in four events by age ten was beyond the realm of comprehension. Still, from the moment he started winning, I became so swept up in the excitement of it all, I didn’t notice that the titles and awards never mattered much to him.

Meanwhile, any intrinsic passion he may have initially had for his sports was being eaten away by the pressures of competition—the disruption of his comforts and routines at home; the cold, dark 4:00 a.m. departures; the chaos of crowds and unfamiliar lights and sounds; the demands of “being polite,” “following your coach’s instructions,” “remembering to cheer for your teammates,” “saluting the judges,” “keeping track of your equipment,” and “paying attention” became progressively more exhausting and less rewarding. My understanding that the competition-rigmarole was always more draining for Matthew than it was for his peers energized me all the more to support him in any way I could, which I did, thoroughly convinced that all my ministrations were enough.

It was like some kind of magical reorganization of particles took place in the ether of gymnastics and swimming venues which allowed Matthew to function normally—no, extraordinarily—in a way that seemed to make up for the difficulties he had in other settings. There was, of course, a reason why Matt stood out as being different, even if I resisted acknowledging it: He was different. Indeed, this was always the case, whether he was alone on the school playground sifting sand, or performing in an athletic competition. But because he was derided or ignored for the former and applauded for the latter, I believed that it was in my son’s best interest for me to encourage his continued involvement in the pursuits for which others praised him. My blind deference to social acceptability—what I now see was my effective rejection of my own child’s differences—kept me from fully appreciating the enormous burden Matthew carried in his efforts to perform on command. I happily assumed that with his every pointed-toe flare on the pommel horse, or one and a half twisting layout somersault from the double-mini trampoline, he was embodying his best self, and that it was a source of pride for him. The truth was, he was too flooded by all the rules and expectations imposed on him to have any idea whether doing what everyone else wanted him to do in any way meant being who or how he wanted to be. As his mother, I was the one person on this earth who should’ve seen what was happening, and I didn’t. For far too long.

In a sense, my son was only ever being brave. The difference in the presence of Fiona and the horses, though, was that when Matthew trembled, revealing in real time an inner emotional state of which he may not have been fully aware, for the first time, someone recognized it for what it was.

***

Though he rarely conveyed his emotions with facial expressions, there had been times when I’d seen my son give way to momentary flashes of joy, from which he wasn’t immediately compelled to check and restrain himself. When this happened, his smile could blaze through the rainiest Oregon day.

Once, shortly before he began EAP, I happened to catch him in the act of smiling, when the arrival of a brief late-summer lightning storm had pleased him. I asked him to place his hands on his face to feel what it was doing: “That is your joy, Matthew!” I explained to him, but by the time I pressed for him to say something, the moment was gone. The stony expression and dull eyes had resumed their usual, defensive posts as Matt answered my probing—How does that feel?—with his set verbalization of “M-m-m,” a slurred, tri-syllabic shortcut for what I’d come to learn stands for “I don’t know.”  

At this point, I’d only begun to “get” intuitively that Matthew had never fully integrated that seldom-revealed part of himself which appeared able to feel joy—regardless of the off-the-beaten-path sources it usually sprang from—into his overall sense of himself.  How could he be expected to know himself, then, in more complex terms? What could something like successful, or brave mean to someone who was a stranger to himself?

As far as I was concerned, Matthew’s sole passion in life could’ve been fossilized dinosaur dung, as long as it would somehow allow him to know joy, and not default automatically to feeling overwhelmed and defeated by everything else—the reflexive punishment to which he’d been subjecting himselfin the throes of his depression. The bottom line was that my son deserved to know himself as the delightful young man Fiona recognized him to be the first day she met him.  

            ***

Around the time Matthew officially received his autism diagnosis at age seven, I attended the Department of Education’s annual conference on special education in the Oregon public K-12 system. One of the lectures I sat in on, a “discussion” of theories and techniques for “promoting appropriate behavior” in autistic youths, was particularly eye-opening, but not in any way I’d hoped it would be. What had been billed as a reputable child psychologist’s pioneering research into developmental psychology revealed itself almost immediately to be the very antithesis. Plying his reductive definition of autism as a total lack of empathy or capacity for compassion, this so-called doctor delivering his treatise to a room full of overwhelmed parents was like a psychopath justifying his contempt for humanity to his gagged and bound kidnapping victims. Among the myopic generalizations he passed off as earth-shattering insights was that autistic adolescent boys are not motivated to adjust their conduct according to how others perceive them, and therefore will only respond to the promise of a reward that they find “meaningful.” The example he proceeded with was unsettling, to say the least: If adolescent boy X pulls his pants down in public, it won’t work to explain to him that such behavior feels threatening to others, because he has no concern for anyone but himself. But if X knows that the consequence for pulling his pants down during an outing will be to lose video game privileges, the “reasoning” went, he will be motivated to perform the desired behavior of keeping his pants fastened. The only sense I could make of this whole, witless spiel was that it was designed to terrorize parents into subscribing to his brand of intervention, lest our autistic children remain dangerously on the verge of hormone-crazed sexual-deviancy. Years later, I would learn the euphemistic term for this extreme method of social conditioning devised specifically for use on autistics: Applied Behavioral Analysis, a controversial therapeutic approach predicated on a view of autism as comprising aberrant, socially unacceptable behaviors that need to be “cured.”^[3] However new I was to the realm of special-ed parenting, it wasn’t beyond me to be outraged by some guy’s demeaning proselytizing. But what I found even more disturbing was that so many parents responded to being told their children were menaces to society by diligently scribbling notes.

I’d always observed my son to be compassionate and interested in the well-being of others, especially another child who was sick or injured. I realized that his emotional reactions to such situations often manifested in awkward or unexpected behaviors that people who didn’t know him had difficulty interpreting. For instance, if his sister had fallen and cut her knee, and was crying as I cleaned and bandaged the wound, instead of saying something like, “I’m sorry you got hurt,” Matthew would hover around us and bombard me with questions about how she fell, what surface caused the cut, and why it hurt her so much. While Matthew’s demeanor in such situations often came across as inappropriate, there was no reason for anyone, much less an autism expert, to attribute his differences in the modulation and expression of his emotions, to a total disinterest in others and absence of emotions.

My encounter with the child psychologist (emphasis on psycho is mine) at the ODE event was representative of the majority of special-education professionals (including the district autism specialist) my son found himself at the mercy of during his time in a public elementary school. While I was on the steepest learning curve of my life, it was becoming apparent to me that the accommodations Matthew was supposed to receive at school were either insufficient, or not implemented at all. My presence at the school as a parent-volunteer instructor in the art literacy, “Passport Club” (U.S. and World geography), and remedial reading programs gave me an inside view of the day-to-day proceedings that many other parents of special-ed students didn’t have. I observed firsthand as Matthew was often left to flounder while the other kids at least knew what they were supposed to be doing: In a transition from one activity to another, Matthew trailed his classmates in the hallway, bewildered; if the teacher instructed the class to work on an assignment, Matthew would be digging the lead out of his pencil, or making paper airplanes or origami cranes; then, when the other kids were released for recess, Matthew would be held back for failing to complete a given task that no one had bothered to help him get started with, a form of support his IEP specified he needed. In the course of seven hours each day, Matthew would barely manage to write two words at the top of a page, if that. More often than not, he’d come home in tears, burdened with hours of “homework” (that had been “classwork” for everyone else) he wasn’t able to complete on top of attending gymnastics practice. Matthew’s sixth-grade teacher, in her exceeding wisdom (read: stunning hypocrisy), proposed the magical solution that I curtail his involvement in sports in order better to accommodate her agenda. For five long years, rather than providing a classroom aide for Matthew to promote his productivity at school, the special-ed team maintained that it was somehow acceptable for him to accomplish essentially nothing all day every day. And, because he was smart and therefore “demonstrated proficiency,” they made allowances for his teachers to give him passing grades, as if that particular “accommodation” would make up for the abject neglect.

I gradually came to realize that what was happening to my son at school was happening throughout our entire Education District. Starved of adequate funding, administrators forced the staff to cut corners wherever possible. When it came to special-ed students, resources were devoted first to assisting children with severe physical disabilities, or to managing children whose behaviors were violent or destructive. I observed the school’s consistent failure to identify and provide accommodations for students with various learning disabilities; as long as parents were seemingly unaware of their children’s need for extra support, it wasn’t offered. In my son’s case, I’d been aware enough from the outset to advocate for him to receive assistance at school, and because a developmental pediatrician had diagnosed his autism, the school district couldn’t legally deny him services.

But it took precious years of my son’s life for me fully to comprehend that my efforts to appeal to someone’s sense of right, or duty, or reason would never be enough. The school district’s special-education “experts” based their protocols on the premise that the “condition” of autism—which they seemingly regarded as a disembodied set of outwardly-observable, atypical behaviors—only needed to be addressed insofar as it caused a nuisance for others. To wit, if the child with a communication disability, himself, wasn’t explicitly verbalizing his sense of confusion, frustration, or abandonment and requesting specific help, and if he wasn’t otherwise being disruptive in the classroom, then as far as the special-ed team was concerned, no need existed. In essence, their one-size-fits-all approach toward accommodating autistic children was nothing more than an extension of that horrid child psychologist’s dehumanizing social conditioning crusade for purposes of classroom management. Their justification for denying my son types of support for which he demonstrated a need was often that he “lacked empathy” and wouldn’t know the difference. And when I challenged their failure to implement his IEP, they patronized me as being just a layperson, as if they somehow knew my child better than I did.

The District Speech Pathologist was the central cog in the mechanism designed to crank out the illusion of providing autistic students with appropriate support at school. Matthew attended short, bi-monthly, small-group sessions with the SP for “social training,” a program which the special-ed team presented to me as being the holy grail of services, claiming it to be a catch-all means of addressing Matt’s exhibited needs. But rather than actually helping him to integrate socially or functionally at school, “social training” was an implicit message to my son that his difficulty with expressing himself was a bother for others to deal with. Along with its litany of frustrating, undermining rules amounting to: “don’t interrupt when someone else is speaking,” “don’t blurt out answers without raising your hand,” “don’t hound your teacher with scientific questions there isn’t enough time to answer,” “don’t comment out-loud on every sound you hear (don’t even move your lips when sub-vocalizing),” “don’t run to the window and disrupt the class when a dust devil whirls up on the playground,” “don’t notice,” “don’t feel,” “don’t need”…, “social training” instructed my son about all the ways he didn’t measure up in the neurotypical world, when he should have been learning that he was worthy of validation, of being heard and understood. 

***

Once Matthew had two months of weekly Equine Therapy sessions under his belt, Fiona invited me to participate in a session along with my son. It was mid-December, and the Oregon weather had taken its decided turn toward winter, otherwise known as the sun’s annual months-long hiatus—when the temperature hovered just above freezing, and the damp grey took up residence in every human bone marrow cell it could access. I was a good sport, though. Clad in a hat, gloves, and multiple layers of merino wool, I accompanied Matthew to the arena, where we found Cody and Fire stout and proud in their thick winter coats, and Fiona, animated as ever, bundled in work boots and wraps up to her red cheeks. Fiona had created an elaborate obstacle course of orange traffic cones, variously sized barrels, a veritable rainbow of pool noodles, ropes draped every which way, and piles of farm-themed knick-knacks, some stacked too tall for the horses to see around. With its bright colors, the array was almost as cheerful as it was chaotic. Matthew and I were charged with the task of working together to lead both Cody and Fire from one side of the arena to the other without plotting out a course ahead of time. The operative word in this exercise was lead. Fiona explained that horses in the wild are prey animals; they naturally aggregate in herds for safety, and must depend on the collective function of the herd for everything. In absence of a herd, domestic horses are entirely reliant on us to take lead—to express ourselves with confidence, authority, and a calm strength that the horses will trust enough to follow.

The stakes were high for both of us: Matthew would be stretched to capacity—making even the most basic of decisions and enacting them in real time was one of Matt’s biggest challenges, which meant that my biggest challenge, as Fiona had perceptively deduced, would be resisting the urge to “rescue” my son, by dictating each step for him. Feeling like my competence as a mother, as Matthew’s mother, was in question, I tried to hide the fact that I was reeling with anxiety, and put on my best “exuding confidence” act on behalf of my son who needed me. And though Matthew met my first few questions—How should we start? Which horse do you want to lead? Which obstacle do you want to try first?—with his signature, “M-(I) m-(don’t) m (know),” it wasn’t too long (at least, in terms of geological time) before we were bumbling around with the horses and their immense patience with us.

All the while, as we tried and mostly failed to coax Fire and Cody around blind corners, knocking over cones and tripping over pool noodles in the process, Fiona’s laughter validated our imperfect and beautiful humanity.  

***

Long before Matthew’s autism diagnosis was official, I was aware that he exhibited marked differences from other children his age in pretty much every facet of his existence. Spurred initially by sheer maternal instinct, I began educating myself about my son’s many out-of-the-ordinary characteristics. From his incongruent emotional reactions to sensory and situational stimuli, to his preternatural fascination with fans, vents, drains, pipes, and a distinct preference for the dismembered parts of toys and other structures over any integrated whole, Matthew’s idiosyncrasies all affected his functioning to some degree, but it was his pervasive difficulties with language that concerned me the most.

Though he began formulating words well before age one and speaking in complete sentences by about 18 months, it was evident very early on that something was amiss with Matt’s use of language. He had a remarkable ability to memorize and precisely recite the dialogues of his favorite books and TV shows in their entirety, and more often than not, when someone asked him a question, he either repeated the question back verbatim, in what I soon learned was a classic demonstration of echolalia,[4] or didn’t respond at all. Though he seemed to understand the words “yes” and “no” conceptually, Matthew never verbalized either of these words in response to a simple yes/no question until well past the age of four. By two years of age, however, he did occasionally use the word “okay” to indicate a “yes” response. I distinctly remember the moment I became aware of Matt’s ingenious work-around: After running ahead of me at the bookstore we were perusing, he took a tumble in front of a young woman who then almost tripped over him. As I was still a few steps away, the woman quickly knelt down to help him up and asked him, “Oh, honey, did you get hurt?” to which he responded right on cue, stifling an adorable, bruised-pride sob, “Okay…”

When Matthew was a little older, his previous default to echolalia in response to questions like, “Would you like mustard or mayo on your sandwich?” morphed into expositions on such topics as the difference between conscious muscular activation and reflexes, or the formations of the clouds accumulating that day on the horizon. Though a part of me always tingled with pride at Matt’s displays of intellectual precocity, I was more frustrated, frightened, and heartbroken at the prospect that I might never be able to have a reciprocal conversation with my own child.

Throughout his elementary, middle, and early high school years, Matthew and I did become more adept at communicating with one another. I discovered that if I slowed down, engaged Matt where he was in any given moment, and really listened and responded to his observations, he would then find it easier to listen and respond, in turn. So, however counterproductive it might have seemed for me to let my ten-year-old immerse me in a perseveration on white-out blizzard conditions on Mt. Hood’s Palmer Glacier, when it was a summer day and I just wanted to know whether he wanted to go out for lunch before swim practice, a visit to Matthew World was—and still is!—always well worth the detour it took to get there.

Matthew’s discomfort with the words “yes” and “no,” having persisted in some form for as long as he’s been alive, seems to be a central feature of his personality, expected and embraced by the people who love him. Now, at age 22, he still uses his non-committal “I don’t know” as a crutch to buy himself some time to decide whether he might truly mean “YES,” or to avoid answering questions altogether, especially if he’s concerned that a “NO” response will hurt someone’s feelings, cause an imposition, or prove to be inaccurate. Sometimes, he’ll accompany his “I don’t know” with a half-conspiratorial, half-apologetic grin to indicate his awareness that he’s being confounding, which never detracts from his overall charm. Nowadays, an actual YES or NO makes its grand appearance almost on a weekly basis! But back when he was a 15-year-old, mired in depression and scarcely able to assert himself one way or the other, I could’ve counted the “yeses” or “noes” Matt uttered in the course of a year on one hand.

At age 15, my son had the entirety of the globe memorized. Rare was the geological or meteorological phenomenon that escaped his outward attention: He knew the Mariana Trench’s depths in the Western Pacific, and the number of annual lightning strikes over Lake Maracaibo in Venezuela like the back of his own hand, as they say; but the inside was still dark, uncharted territory. Of course, all young people must grapple with the challenge of learning to understand and love themselves as they grow up, as is evidenced by those adults we all know (however ostensibly neurotypical they might be) who never really do. But looking back, I now recognize that my son’s journey toward such self-discovery was all the more hampered by the constant bombardment of disapproval he faced from every direction just for being.

When the developmental pediatrician who diagnosed Matthew with autism when he was seven years old expressed to me that his symptoms were so “classic” that she “had him pegged in the waiting room,” I knew no better than to trust her recommendation of helping him to “appear more normal” (presumably to minimize the bullying and discrimination that would be in store for him). The “social skills” therapy she prescribed, conveniently enough, was the same service the Speech Pathologist at his elementary school offered. Little did I know that pursuing what seemed the most proactive “treatment” for my child would amount to subjecting him to a sanctioned type of bullying in the hope of avoiding the societally-inevitable kind.  

I was admittedly heartened to see Matt outgrow some of his more conspicuous tics, such as flapping his arms as if they were birdwings (I do believe he was literally, intentionally imitating birds) and barking like a dog in grocery stores and restaurants, which likely had a lot to do with being able to channel his energy into and receive satisfying sensory feedback from gymnastics and swimming. It’s probably also fair to attribute some of his apparent progress to the “social training” he received in elementary school. Though, that’s not to say that the conditioning and associated disapproval with his natural way of being in the world was more beneficial than not, because it wasn’t.

Yesterday, I came across the following excerpt from a Twitter thread by a self-described “Autistic teacher, writer, speaker, parent” (who bases his stark criticism of ABA on firsthand experience of its psychologically undermining effects), which insightfully accounts for the turmoil that had been so far beyond my son’s ability to articulate when he was 15 years old:

If you try to ‘fix’ an autistic person, the tragedy is that you will likely succeed in making them act neurotypical. (…)

Sadly, the added strain of them trying to fit these arbitrary norms will likely cause them terrible harm, up to and including suicide.

So don’t.[5]

            ***

Matthew worked with Fiona and the horses for more than three years in total, but it was on that first day I joined him in the arena that I witnessed the breakthrough that would equip him to heal his injured spirit, and to begin learning to understand, love, and accept himself. Before that moment, I’d really had no idea how adversely Matt had been affected by the social skills training I’d once approved for him to receive. The special-ed professionals who worked with my son likely wholeheartedly believed that the best they could possibly do by autistic children was to train them to perform socially acceptable behaviors. Regardless of their intentions, though, because they taught him that his way of being in the world was largely “unacceptable,” my son learned to associate any emotional connection with others with the unavoidable pain of their disapproval. And in his attempt to protect himself from that pain, he so completely dissociated from his own emotional needs that neither of us knew he had them. His coping mechanism had served its purpose, but was unsustainable.

Just like a horse needs a “leader” in order to feel his safety from predators is ensured, it was evident that my boy needed a leader to guide him inward, by degrees, to check behind obstacles for him, so he could feel secure enough to follow. He needed a horse to speak a new language with him, so that he could know when to go (yes) and when to stop (no). When Matthew attempted to guide Fire through the obstacle course, he only tentatively uttered the command for go, “Walk!” and rather than verbalizing the command for stop, “Ho!” he just muscled the Miniature Horse to an eventual halt. But when Matthew walked with the Arabian/Quarter Horse, Cody, it was abundantly clear that “Ho!” was not up for negotiation! There was simply no such thing as leading Cody without stop. So, when Cody got squirrelly as they approached the first barrel, Matthew had no choice but to issue an emphatic “Ho!” It was his first “barbaric yawp over the roofs of the world” in the song of himself, and the most beautiful sound I’d ever heard. It had taken Cody approximately 30 seconds to reach my son in a way that no one else had been able to in 15 years.

The nature of the work that Matthew continued do with Fiona and her magnificent animals was such that he couldn’t avoid encountering himself in that arena. The horses had the power to embody and reflect back to my son in any given moment the very essence of who he was and what he needed to do to take charge. More importantly, the self he connected with wasn’t subject to judgment and disapproval at every turn, rather, what happened in a given session was simply what happened. Sometimes, Fiona and Matt spent the whole hour brushing the horses, cleaning their hooves, and treating them with Fiona’s homemade herbal bug repellant, while just chit-chatting about whatever came up. The simultaneously rigorous and soothing ritual of grooming the horses, as they stomped the dirt, leaned into brushstrokes, and nickered with contentment, worked for Matt like a communication-amplifying interface that allowed him to experience and share from his inner reality in real time. Still, nothing about the process of getting acquainted with himself was easy for him; the internal stranger he was required to meet was a full-fledged being full of hopes and desires to which he desperately needed Matthew to respond. Sending Matt to a gymnastics competition and anticipating he’d come home with as many medals as there were events was easy. Sending him into an arena with no standard to achieve, no expected behavior to imitate, no test of physical prowess—where he was compelled to call on a whole new form of bravery to be emotionally present in the moment for the first time in his life—was hard. It was in that arena that Matthew would learn from a 1300-pound animal who depended on him literally to take the reins that he could depend on himself to forge his own path ahead.  

***

When Matthew was 15 years old, his favorite movie was an animated children’s film about a wolf pack called Alpha and Omega. One of Matthew’s most endearing traits is his abiding fondness (defying any notion of age-appropriateness) for cartoon, anthropomorphized animals. In the story of Alpha and Omega, an “Alpha” pack leader and huntress named Kate and an “Omega” peace-keeper named Humphrey grow up and fall in love, despite the fact that such a relationship is forbidden in their wolf society. In the stirring scene in which the star-crossed wolves finally give in to their feelings for one another, Kate and Humphrey howl together in the wilderness beneath the inviting light of an enormous full moon. Though the wolves would soon face the pack’s outrage at their flouting of tradition, everything about the moment in which their resplendent harmonies ring out into the night is right. Ultimately, and rewardingly so, Kate and Humphrey manage to convince the pack to reevaluate its prejudices and rules, and accept the wolf-couple for all the beauty and vitality their union represents.

Everyone identifies on some level with Kate and Humphrey’s plight. Romeo and Juliet wouldn’t be the enduring dramatic masterpiece it is, if this weren’t so. But for Matthew, as I would eventually grasp, Alpha and Omega was more than a fraught love story softened by cheesy comic relief and a happily-ever-after; it struck a tender chord at the heart of his identity. In this movie’s fictional depiction of a relationship society has always, without exception, insisted is a “NO” (an edict my son was all too familiar with), the world finally, thankfully, rightfully allows it to become a “YES”—because, after all, there is no rational or functional reason why it should be anything other than a “YES!” By proving that Kate (Alpha) and Humphrey (Omega) should be allowed to love each other, the movie confirmed for Matthew that he should be allowed to love himself within a society that had always denied him approval for who he was.  

Of course, this insight wasn’t even a faint blip on my radar until that summer of Matt’s awful depression, when, one day, in a moment of weakness, I happened to transmit the right frequency: Having let my frustration with his escalating reality-avoidance routine get the best of me as he settled in to watch his Blu-Ray for what was probably already the twenty-fifth time, I asked him, “What is it about Alpha and Omega that you love so much, anyway?” I didn’t necessarily expect him to acknowledge me. I was just venting, wanting him to be okay.

“It’s the only thing that has ever made me feel satisfied,” he responded, without skipping a beat. He did have an answer, rare as it was, and the unprecedented conviction it came with was razor-sharp. It was his way of saying that no one knew better than he did what it felt like in every moment of every day to be told by the world, “NO, we are not allowed to be together….!” He so wanted to hear the world say “YES!” but he didn’t understand—because no one, including me, had ever known to teach him—that it was his right as a human being to be the one to say, “YES!” to himself.

A few weeks later, early in the fall of 2013, just as Mercury was going hardcore into retrograde, the universe nonetheless connected Matthew with Fiona’s Equine Assisted Psychotherapy practice. Unlike every other child psychology, psychiatry, and special-ed professional we’d consulted before, who’d always insisted on trying to teach Matthew to “be normal,” Fiona’s approach was to help Matthew learn to be okay with what was “normal” for him. During the several years that she and the horses facilitated his ever-unfolding discovery and acceptance of his “normal,” my son felt more and more assured that however it may have differed from the neurotypical world’s version, his normal was absolutely, for every rational, functional reason, a resounding “YES!”

What Matthew had all along needed—what would mean success for him—was to know that when he’s out there, making his way through that wilderness steeped in the moon’s glow, the world will howl with him.                            

§          §          §

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[1] Whereas the special-ed team never implemented the accommodations Matthew needed to function at school on a daily basis, they somehow managed to provide a quiet space and extra time for him to complete such tasks as were likely to bolster his school’s scores.

[2] A diagnostic term referring to the management of memory and details in executing an everyday task such as packing a backpack with the things you need for school, which comes naturally to the average person.

[3] Elizabeth Devita-Raeburn offers a comprehensive overview of ABA’s development and practices, as well as the concerns of its critics that “its drills and routines are cruel, and its aims [are] misguided” (https://www.spectrumnews.org/features/deep-dive/controversy-autisms-common-therapy/, accessed October 11, 2020)

[4] A language processing delay often associated with autism involving the spontaneous and precise repetition of another’s words in lieu of a meaningful response to those words.

[5] Wharmby, Pete. https://twitter.com/commaficionado/status/1324658111018401794?s=19, accessed November 6, 2020.