An Unmarked Path
When did you first know there was something different going on with your child? If you’re like most parents raising an atypically developing kid, there probably wasn’t a pivotal aha moment neatly wrapped up with classic symptoms, an easy-to-peg label, and a clear course of action. More often than not, the realization that a child is different happens slowly and unevenly, like a head-to-toe Band-Aid being yanked off one hair at a time over a period of years. That’s because when they’re little, kids with no obvious diagnosis or visible difference tend to fly under the radar. Sure, some might be colicky or more sensitive or less cuddly than other babies, but those traits can all easily fit into the range of normal baby behavior. After all—aren’t all babies difficult? All parents sleep deprived? All new families making it up as they go along?
That’s what my husband, Derin, and I figured, anyway. Asher was colicky from day one. Nothing could settle him, his sleep patterns were hellish, and he seemed generally, for lack of a better description, pissed off. I viewed him as an old soul, annoyed for having been thrust back into such a tiny body and into a life where he’d have to wait a good, long time to get to the juicy stuff. So we read the baby books, tracked feedings and soiled diapers on a spreadsheet, and sought advice from seasoned parents about how to get our boy to sleep through the night. As first-time parents, we assumed our experience was no different from anyone else’s. Mostly.
Shortly after Asher was born, we joined the Program for Early Parent Support (PEPS), a Seattle organization connecting new parents for community and support. New to the city and with no social circle to speak of, Derin and I were hungry for camaraderie and hoped to glean some wisdom about how this whole parenting thing was going to work. I remember getting together that first night, six couples sitting cross-legged on the floor cradling infants bundled up for the fall weather, nervously sharing our birth stories. Back then, we were all on equal footing—our babies blank slates, differentiated only by the number of hours they slept or how severely they reacted to breast milk soured by the curry in the previous night’s meal. As time went by, these families would become the first control group in our ongoing, high-stakes research project—figuring out how to parent a unique kid.
We survived year one, grateful to be on the other side of the colic and ready for things to get easier. But instead, things stayed hard, just in new and different ways. In our PEPS group, we witnessed our children evolving from helpless blobs into little people with distinct personalities, temperaments, and senses of humor. By the time he was two, we felt certain Marques was destined to be a pro athlete. Campbell was clearly the artist of the group, Ella a natural dancer. And Asher? Asher was the precocious one. The kid was intense. Stubborn. Sensitive to loud sounds. Fairly accident-prone. And also fascinating, delightful, and super-chatty.
By his second birthday, Asher was regularly turning heads with his rich vocabulary, along with his propensity for engaging in complex conversations with any willing adult. He could recite a book verbatim after hearing it read only once or twice. His focus for solving puzzles was remarkable. We knew enough toddlers to know his intellect wasn’t typical, and Derin and I frequently found ourselves exchanging looks of both disbelief and pride at something Asher said or did.
Another thing Asher turned heads with? His apocalyptic conniptions. The kid had lungs, not to mention an iron will. Whereas most two-year-olds work from the same tantrum playbook—arched backs, flopping to the ground, red-faced screaming—Asher’s tantrums just seemed somehow . . . bigger. When other parents witnessed an Asher conniption, I noted the shock and awe in their eyes. Not wanting to make me feel worse than I already did, these parents would often confide in me about a recent meltdown they’d had to endure, the message being that this was a normal part of raising a kid.
But if the intensity of Asher’s tantrums was so normal, why were none of my friends regularly bailing halfway through dinners out because their child was disrupting the whole restaurant? Why hadn’t they had an uncomfortable exchange with the woman in the moss-green house on the corner, the one who stepped outside one afternoon because Asher’s screaming apparently led her to believe he was being abducted or abused, the one who eyed me suspiciously as she asked, “Is everything okay here?” And then there was the day our mother’s helper—warm, loving, experienced—carried my rigid, hysterical child upstairs, passed him back to me like a store clerk handing over a sack of potatoes, and quit.
“I can’t do this anymore.” She was crying, her arms raised in defeat. She mumbled apologies as she retreated down the stairs, grabbed her things, and bolted out the door. It was her fourth day on the job.
I stood there on the landing, a hapless mother in a Judd Apatow film, trying to process what had just happened. And all I could think was Holy crap. We’re that family. The family with the kid who drives the nanny to quit.
Suffice it to say that by the time Asher was two, Derin and I knew we were engaged in a more extreme form of parenting than most. We knew Asher was intense and challenging, or as one parenting book labeled him, “spirited.” We were discovering he was freakishly smart. And we knew he didn’t respond to the parenting tools spelled out by the books our friends were relying on (The Happiest Toddler on the Block, Positive Discipline, How to Talk So Kids Will Listen and Listen So Kids Will Talk).
We didn’t have a clue as to what we were dealing with. We didn’t know how to differentiate between your standard “terrible twos” fare and what was happening inside our home. Our only frame of reference was what we saw in our community, in Asher’s drop-in preschool, and on TV. One day I’d see a child shut down the supermarket aisle with a tantrum while Asher quietly sat in our cart flipping through a book, and I’d think, See? We’re all good here. Then the next day Asher would stage an hour-long protest about getting into his car seat and I’d once again be bewildered. As the evidence mounted, the Band-Aid slowly peeled away, revealing small patches of red, irritated skin underneath. I began having dark moments of doubt, when I’d be convinced there was something seriously wrong, and then I’d read an article online that would convince me otherwise, or a pediatrician would chalk it up to normal three-and-a-half-year-old behavior and send us on our way with an “Everything looks fine to me.”
But things didn’t feel fine. Derin and I began distrusting ourselves and our experience. Was there something “going on” with Asher or not? Were we just overbearing parents with ridiculous behavioral expectations, or were we in denial about something everyone around us already knew? The fact that our friends frequently normalized Asher’s behavior added to our bewilderment. In retrospect, I’m sure they were trying to allay our fears, but back then, it just made us feel even worse.
By the time Asher turned four, Derin and I had accepted that our son was atypical. We just didn’t know how to figure out what that meant or what to do about it. Isolation set in. Other than my sister, my best friends, and our parents, no one knew how difficult things were at home. I longed for someone or something to help us fit Asher and his behavior neatly into a box so I could get busy fixing whatever was wrong. I’m a resourceful person and a researcher by nature, but I was floundering. Where was the community of families like us? The concrete strategies? The path? And why did my husband and I constantly feel like we were the only parents struggling with these issues?
And then there was school. Notes home from preschool teachers about problems in class, on the playground, with other kids, and with authority became a regular experience. Tried-and-true strategies used by seasoned educators were proving futile when it came to my kid. I felt like I was raising a child Method actor preparing for the roles of Jekyll and Hyde in an upcoming Broadway production. I mean, the kid was committed, especially to his anger, which seemed to be the prevailing emotion during that first year of school. After a string of bad weeks in which I received a phone call, note, or email from the school detailing yet another incident almost every day, I asked a friend, not for the last time, “Is it possible they would kick him out of preschool?”
We searched for clues about what was behind his anger, which was beginning to feel unpredictable and unsafe. More than once he’d whipped off his shoe and thrown it wildly in the car while I was driving, hitting the dashboard. I occasionally got calls from the preschool about dangerous things he’d done on the playground, wielding sticks or throwing small stones. The apology letters, dictated by Asher, written by me, and delivered to classmates before school, mounted up. Though the school worked tirelessly with us to help Asher, nothing improved things. I couldn’t help but feel I was failing as a parent.
About midway through the year, a friend mentioned the words “sensory processing disorder,” and something in me clicked. She jotted down the name of a must-read book, The Out-of-Sync Child, and I left her house feeling an instant sense of relief. Yes. Out of sync! Finally we have our answer! Within a week I had tracked down the go-to occupational therapy clinic for kids with sensory processing challenges and added our name to the waiting list. A few months later, Asher began seeing an incredible therapist named Kris, with whom he ended up working for the next four years.
Finally—we had our answer. We were taking the right action, and I expected the intense and disruptive behavior to fizzle out pretty soon. It would totally work. Any . . . day . . . now . . .
But as Asher entered his second year of preschool, things continued to grow more difficult. Emotionally, I was a wreck, experiencing some form of embarrassment, shame, anger, or confusion on an almost daily basis, mostly stemming from pressure I placed on myself to handle everything in the “right way.”
At the urging of a friend, we did a more thorough assessment with Asher that spring. The results: provisional diagnoses of pervasive developmental disorder not otherwise specified (PDD-NOS), which we were told is akin to “mild autism,” and attention deficit hyperactivity disorder (ADHD). The diagnoses were provisional because he was only five and over time might outgrow certain behaviors. But I was skeptical about all of it. In my mind, the testing procedures were too subjective, and all of Asher’s diagnoses—giftedness, the sensory issues, the ADHD, the PDD-NOS—shared nearly identical “symptoms.” So what exactly was what? And what, if anything, would actually “work”?
It was also time to figure out the plan for kindergarten. Derin and I had assumed Asher would go to the neighborhood public school, yet the general consensus among people who knew him was that smaller classrooms and a more individualized curriculum were his best bet. So we reluctantly turned our attention to private schools.
The following fall, we sent him off to a private school for highly gifted kids. We crossed our fingers and, miraculously, Asher made it through that first year—thanks to a seasoned teacher who shared his love of engineering and cats. I did have weeks at a time in that first year when I allowed myself to stop worrying and warily consider that maybe Asher had found his place. But two months into first grade, things fell apart. I began having concerns about the way some of his classmates, as well as his teacher, were “shaming” Asher for things he was doing his own way (read: wrong) or that were tied to his challenges. His self-esteem was taking a serious hit.
Then, in an after-school meeting with Asher’s entire teaching team, the head of the lower school announced that she’d never encountered a child as intense as Asher in all her thirty-plus years working in education. I nervously laughed and called her bluff.
“I find it hard to believe that Asher is the most intense child. I mean, seriously.”
Without missing a beat, she curtly replied, “It’s true.”
But they were just getting warmed up. For the next half hour, I sat there and listened to a chorus of teachers relay tales of daily outbursts. Here I’d shown up to the meeting with a journal and pen in hand, ready to capture notes about our new plan, but those props were completely unnecessary. When the art teacher, who I knew was one of Asher’s favorites, began listing off his offenses in the studio, it hit me. This wasn’t a meeting to brainstorm how to meet Asher’s needs at all. It was an ambush.
I sat in that dimly lighted classroom, my body uncomfortably wedged into a chair meant for a six-year-old, and listened to the guidance counselor tell me other kids were beginning to fear Asher, that they didn’t want to partner with him because of his unpredictable outbursts. My face grew hot and tingly. I was embarrassed. I said all the things someone in denial says about support mechanisms and getting ahead of the problem. But as I walked back to my car, their parting words kept running through my mind: Maybe this school isn’t the right fit for Asher. We need to see a significant change if he is to continue here next year.
Over the next two weeks, I organized meetings, brought in experts, and created colorful “zone charts” and scripts to help the teachers support Asher’s dysregulation. But the thought of Asher normalizing the way he was being treated made me dizzy. I felt like I was feeding him to the sharks when I dropped him off each morning, gritting my teeth, hoping I wouldn’t run into anyone as I walked back to the parking lot. As soon as I was safely inside my car, I’d sink back into the seat and cry tears of frustration, trying to reach Derin, my sister, or my mom on my cell phone for moral support. I was slowly falling apart, heartbroken over the possibility that my son’s beautiful spirit was being permanently damaged, and outraged at the way things were playing out. And so, the day before winter break, we walked out of those double doors for the last time and never looked back.
Operation Elementary School, take two.
We started fresh that January at a lovely private school whose focus was emotional development, critical thinking, and social justice. While I adjusted to the new drop-off and pickup drill, Asher did what he always does—be himself no matter what. As was his style, in class he blurted out his opinion freely, let his frustration flag fly when anything happened that he perceived to be unfair, and found creative loopholes that enabled him to turn any school project into something squarely centered on his area of interest, which, at the time, happened to be origami. Within six weeks, Asher had spearheaded the Origami Frog Olympics, an idea that had classmates obsessively folding paper frogs and apparatuses. (Asher’s inspirations are nothing if not infectious.)
After a brief honeymoon period, things started to deteriorate. By May, Derin and I were sitting in the school director’s office listening to their concerns about meeting Asher’s intellectual needs as well as how much teacher time his disruptions were costing the rest of the class. The bottom line: If we chose to return the following year, we would need to bring in a part-time paraprofessional, at our expense, to support Asher. It was another situation of “it’s not us, it’s you.” Another goodbye. Another loss. For us, and for Asher.
Operation Elementary School, take three.
This time we opted for a full-time gifted program in public school with classroom accommodations outlined in an individualized education plan (IEP). I joked to friends who were empathizing with our plight, “At least they can’t kick him out!”
As Asher adjusted to life in his third school in as many years, I adjusted to what was beginning to feel like my new full-time job—educating Asher’s teachers about how to manage his behavior in the classroom and advocating for him when things went south. It was clear to me he was bored, disengaged, and unmotivated—from what I could tell, the only thing Asher was learning in school was how to sneak-read his Kindle and build a successful side business selling origami Pikachus (at ten cents apiece, they were a steal). And although it was nice that Asher was bonding with the kind principal because of the sheer amount of time he spent in her office, I came to realize that his IEP wasn’t enough, concluding that most mainstream schools just aren’t designed to meet the needs of kids who think differently.
It had been three years since Asher’s first assessment, so that year Derin and I added our name to a five-month-long waiting list, eventually getting him evaluated at the University of Washington’s Autism Center, a two-week process that involved controlled observations, teacher evaluations, written tests, and parenting interviews. The process was both eye-opening and painful, because although I craved concrete answers, I didn’t necessarily want the ones we got—autism spectrum disorder, ADHD, and disruptive behavioral disorder not otherwise specified. Derin and I digested the final report, feeling overwhelmed and uncertain about what it all meant in the long run. Eventually, we concluded that Asher’s diagnoses were just another piece of the puzzle, insight to be folded into our growing picture of Asher’s unique way of being.
By the end of second grade, it was clear Asher was striking out on the school front. On top of that, I was exhausted—from our crazy therapy schedule (four sessions at four different places per week), from the social pressures . . . from all of it. Asher was perpetually anxious—his poor little fingernails and the skin around them were gnawed into oblivion. At home, his intensity meant living in what sometimes felt like a war zone—explosions were big, frequent, and unpredictable. We knew Asher deserved more than being shoved into a system that wasn’t designed for him, and that by continuing on this path, our actions (or perhaps inaction?) would likely lead to even more dysregulation, anxiety, insecurity, bullying, and challenges for our family. Something had to give.
Desperate for a solution, Derin and I put it out to the universe that we wanted a big change. And in a case of karmic conspiracy, the universe answered with a resounding yes when Derin’s company asked us to move to Amsterdam. Leaving everything behind and starting from scratch in the lowlands of the Netherlands, a place I’d never even visited, was more than a little terrifying, but by that point, we figured we didn’t have much to lose. (Our other thought: If it’s going to be hard, it might as well be hard in Europe!)
So shortly after the school year wrapped up, we painfully extricated ourselves from our life in Seattle—sold our house, lost our dog to cancer, made the choice to homeschool, and did our best to support a certain eight-year-old boy who was furious we’d made the choice to move without consulting him.
The next year was one of intense adjustment. Finding our footing took a while and was easily one of the hardest transitions I’ve ever gone through. But slowly, over time, things got better. Although I felt (a lot of) resistance about the idea of homeschooling Asher, over that first year I gradually found my groove, eventually realizing I was better equipped for the role than I had previously believed. Together, Asher and I fostered a new relationship while I grappled with my own insecurities about what it meant for him to follow an unorthodox educational path.
Don’t get me wrong. Even as things were improving, I still struggled—a lot—mostly with things like jealousy of my friends raising “normal kids” or panic over what the future would look like. I also struggled with truly accepting that we weren’t screwing Asher up if his childhood looked different from that of his peers. Still, there was no denying that this forging of our own path, this questioning-everything approach, was working. Because Asher? He was thriving. The kid was happy. Joyful. Light. He loved school. And his anxiety was gone. I’m talking I had to cut his fingernails.
The most important thing I learned that year was that my biggest source of conflict in parenting Asher was my relationship with myself—more specifically, my thinking about what my life as a mom “should” look like. That realization was a biggie. Because once I figured that out, I could surrender to what my momhood actually did look like. And how our child was. And what his life could look like. It was only after I started the hard work of surrendering that my energy began to shift. More remarkably, and I’m sure as a direct result, Asher’s did, too.
In many ways, making the choice to adapt our life to support who Asher is sparked a renaissance in our family. And today, five years later, we are continuing to create our new, perfect “normal.” Instead of being at odds with one another, together we’re mostly in flow. Today, Asher is anxiety-free, and his tantrums are rarer-than-rare occurrences. Over time, he’s become more and more present. With presence has come connection. And because he’s no longer in chronic fight-or-flight mode—because he is able to just be the awesome person he is without being told he’s bad or screwing up or doing it wrong—his beautiful qualities such as empathy and compassion and a dogged desire to stand up against inequality are flourishing. He’s secure and confident. And it’s been the most incredible thing to witness.
When people ask me how we’ve gotten to a place where our family is thriving, I tell them this: We embraced and accepted who Asher is while exploring alternative ways of being as a family. More than anything, we let go. Of control. Of what other people thought of our child or our parenting techniques. Of what the future “should” look like. We started truly living in the now, noticing the gifts that are here every day.
I’ve talked with enough parents to know that my family’s story isn’t even close to unique. I know parents like me are literally everywhere, all moving through the unmarked journey in their own way, grappling with the unexpected detours and the roadblocks that emerged on the path they assumed they’d be on when they first brought their children into the world.
Parents like Amy, who presumed her son would start kindergarten at the neighborhood charter school in Atlanta where she herself was a teacher, until she finally admitted to herself it wouldn’t meet his sensory needs. “There was a little bit of mourning as I saw people he played with go off to the school I helped build, but I also knew it wasn’t the right thing for him.” A move across the country, a few more diagnoses, and a handful of schools later, Amy once again finds herself at a crossroads, as their most recent school in Portland, Oregon, has closed its doors and she’s left trying to figure out what’s next. But Amy is relentless in her quest to understand her boy’s unique needs and find the right environment where he’ll be seen for who he is. As she said to me during a recent conversation about raising atypical kids, “It’s just what you do.”
Jill, a speech pathologist by training who works with high school students with disabilities, didn’t recognize what was going on with her son until she went to a professional development class on sensory processing disorder. As the instructor rattled off the characteristics of children with sensory issues, she realized the instructor was describing her four-year-old son to a T. “For some reason, I hadn’t put two and two together. But in that moment, it was like a wave washed over me. I had chills over my entire body, and I just started weeping.”
Bari, a psychologist by training, found herself in uncharted territory when she learned about the challenges stemming from asynchronous development in her two gifted children, both of whom have received a diagnosis of ADHD, auditory processing disorder, and executive functioning issues. But she leaned in to who they are and tapped into her gifts to become their most powerful advocate. A few years ago, Bari and her husband made the decision to pull their kids out of private school and (reluctantly) moved to the suburbs so their kids could attend a public school. Bari says things there are working out “okay,” though she never stops questioning their choices, looking for the opportunities that will help her kids thrive, and educating the school about the needs of different types of learners. As she explains, “I’m full of ideas, but my advocacy has come more in the form of trying to change our immediate family and educational milieu and raising awareness and understanding. Because I think that that kind of shift and awareness can benefit all children, not just ours.”
In conversations with parent after parent about raising differently wired children, I’ve heard about the same challenges: uncertainty about a child’s neurodiversity; lack of school fit; tough behavior; families, friends, and educators who don’t get it; and difficulty getting the information, resources, and tools we need. The details differ about who our kids are, but the common experiential thread is the same—frustration, confusion, sadness, and a pervasive sense of being overwhelmed.
Because differently wired kids can often “pass” as “typical kids,” it’s not always easy for teachers, other parents, and sometimes even our own families to recognize or respect the challenges we’re going through. Our kids can be super-intense. Strong-willed. Tricky. The usual parenting approaches simply don’t work for us. Every decision about our child involves just a little more consideration, stress, and anxiety than what other parents might experience. It’s no cakewalk. Yet those with the energy, resources, and time continue to show up every day with no map and a dull blade to hack at the brush in search of a viable path. It’s difficult, lonely work; our only markers are occasionally helpful therapists and self-help books offering disorder-specific tools that serve as a constant reminder: There is “something wrong” with our child. For those families who are overworked, underpaid, and without the flexibility to devote the time it can take to advocate and fight for the support their child needs, the situation can often feel hopeless.
The stigmas associated with most neurological differences are enough to drive us underground to suffer in secrecy, lest anyone know what’s really going on. Raising different kids in a parenting culture that thrives on sameness and conformity doesn’t leave room for us to openly share the reality of our experience. So instead, we soldier on, fielding frequent emails from frustrated teachers, ignoring the glares of other parents when our kids do something “off” in public, and pretending we’re not hurt when playdates aren’t reciprocated. We want to figure out where and how to fit our kids in so everything doesn’t have to feel so hard. We want them to have access to the same kind of life success as everyone else.
To be clear, I’m not talking about a handful of kids here. According to the latest estimates, approximately one in five school-aged children is in some way neurologically diverse, meaning that how their brains function is “atypical” from what’s considered “normal.” In reference to this statistic, author John Elder Robison wrote on his Psychology Today blog My Life with Asperger’s, “That makes neurodiversity (in total) more common than being six feet tall, or having red hair.”
It’s obvious to me that being differently wired is no more an aberration than being left-handed, yet here we are at a crisis point, where 20 percent of today’s kids are struggling to fit in at school and in society because the way they think, learn, and show up is inconvenient or presents challenges to the status quo. Their neurological differences are treated like deficits instead of part of the essential fabric that makes up these creative, complicated, awesome beings.
I don’t believe there is any one way to be okay or typical or “normal” in today’s world. (And who came up with the definition of “normal” anyway? Since when is normal what we’re striving for?) How many people have to receive diagnoses of “disorders” before we start realizing that maybe there’s something else going on here . . . an influx of children with creative gifts who have the capacity to positively change the world? If anything, our uniquely wired children, with their sensitivities and gifts, are the new normal.
It’s time society stopped looking at our kids’ neurodifferences as things in need of “fixing” and instead considered the possibility that today’s increasingly large population of atypical children may actually be a modern-day evolution. It’s time for our children to be seen and celebrated for who they truly are. It’s time for our families to thrive.
But to change everything for our kids, and for us, we’re going to have to throw out the current parenting paradigm. It just isn’t practical anymore, and it’s doing more harm than good. We need to lead in the creation of a new one, one that embraces difference and uniqueness in children, rejects fear- and guilt-based messaging, authentically reflects our families’ realities, and provides options for us to access or design the ideal education for our child’s needs.
Listen, I know this isn’t easy stuff. I know that sometimes you might wish you could wave a magic wand and become a member of the other club, the one full of neurotypical families, the one whose manual is so much more straightforward. I know that many people, from educators to parents of neurotypical kids, might be afraid to consider a new definition of “normal” because it would require them to question their own status quo. I know that staring convention and fear in the face and forging ahead in your own way can be harrowing.
But I also know we can do it. I believe that we—you and I and every other parent raising an atypical kid—have the capability to truly change this paradigm from the inside out. Even more than that, we’re the only ones who can do it. When we voice our reality, educate others, and stand up for what we and our family need from a place of compassion, strength, confidence, and peace, the whole outdated, ineffective, intolerant parenting paradigm that we’ve lived with for decades is going to come tumbling down.
Are you with me?
The New Normal
(strong>A few months ago, I ordered the book Neurotribes: The Legacy of Autism and the Future of Neurodiversity. I’d heard an interview with the author, Steve Silberman, on Terry Gross’s radio program Fresh Air, and appreciated what he had to say about shifting the conversation surrounding autism and neurodiversity to one focused on true acceptance and understanding. A package from Amazon UK arrived as I was making lunch one day, and between the time I placed the book on the dining room table and five minutes later, when I gave Asher a sandwich, cashews, and some sliced pears, he was already engrossed.
Asher’s a much faster reader than I am, so I took my place in line, curious to hear his take on the book, since, after all, he is part of the core population Steve writes about. More than that, I love that Asher is showing so much interest in learning about his own tribe—I see it as part of the self-identity journey he’s enthusiastically embraced in recent years. Over the next two days, Asher devoured the book, occasionally pausing to share something that struck him or to email me a quote that particularly resonated with him.
One night as we were doing our usual good-night squeeze—me on tiptoes and him leaning over the railing of the top bunk—Asher said he was feeling creeped out. When I pressed him, he told me he’d read a section in Neurotribes earlier that day describing how children with neurological disabilities such as autism had been murdered by the Nazis because they were judged to be a burden to society. We’d been studying World War II all year, so Asher was well read on the Holocaust and the related horrors of that time. But this bit of information came without warning and had understandably hit him hard. So I joined him in bed and we fell into a long conversation about ignorance and hate and misunderstanding, all the while my heart breaking, knowing that my thoughtful boy had learned that in another time and another place, he might have met the same fate.
We lay there quietly for a moment, his face buried in the pillow, me staring at the ceiling, and then he suddenly popped up his head, his mood all at once animated and proud.
“There was this awesome quote in the book from an autistic writer though, about what if things were totally reversed and we were the normal ones and everybody else was wrong,” he said.
“Oh really? What was the quote?” I knew he’d likely committed it to memory as he so often did with concepts that clicked.
“It said, ‘Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity.’” He paused and chuckled before dramatically delivering the last line in the exaggerated voice of a TV announcer: “‘There is no known cure.’”
“Yep . . . pretty much!” I responded with a laugh, appreciating how comfortable he already was in his differently wired skin. Sensing he would be able to settle into sleep now, we hugged one last time, and I climbed down the metal ladder, hit the Play button on his audiobook, and quietly exited the room, wondering to myself what it would take for neurodiversity, and kids like my son, to stop being perceived by society as a problem.
Us Versus Them
For as long as people have existed, society has been drawing lines, placing the people who are “normal” on one side and those who are not—those with some sort of physical, mental, or neurological difference—on the other. The “normal” side is flush with challenges and discrimination related to race, ethnicity, religion, sex, sexual orientation, and/or gender identity. Yet, as the gold standard of human experience, the “normal” side is where most people want to be, because it comes preloaded with the expected ingredients that make up a “typical” life—access to a decent education, and the ability to choose a career path, earn a living wage, get a driver’s license, and live independently.
In contrast, the “other” side is on the periphery, unable to fully participate in the same way as the “normal” folks because society doesn’t accommodate and support those outside the norm. Whether it was intended to be this way or not, it has become an us-versus-them kind of thing. Right and wrong. Whole and broken. But there’s no room for that kind of thinking anymore—it’s becoming increasingly clear that different ways of being are more normal than most people realize, and that is truer with each passing year. As educator and parent coach Alison Bower told me, “The more and more children I see, and the more and more parents I see, the more and more I know that there are not that many typical kids. If everyone were to raise their hands saying, ‘Yeah, I have a typical kid,’ there wouldn’t be so many hands up.”
In truth, millions of kids today are moving through the world “differently” from their same-age peers as a result of the way they’re wired, yet for some reason these kids are still considered outliers—aka the “other”—in our conventional world. I believe one reason for this outsider status is that society often divides neurodifferences into separate categories based on how challenging, desirable or undesirable, or “fixable” they are, along with whether the special needs can be easily accommodated or supporting them is especially inconvenient or disruptive. Breaking differently wired kids into separate groups—kids with learning differences, gifted kids, kids with ADHD (and within that label the delineation of inattentive type, hyperactive, and more), autistic kids, and so on—makes it easier for educators and society to go about business as usual. You are different in this way . . . . You belong there (or perhaps more accurately, You don’t belong here). The bottom line is, when divided by diagnosis and difference, children can be more readily pushed aside (or out of the picture) and neatly placed into “other” status. (A boy with whom Asher attended summer camp even tried to convince other kids in the group that his diagnosis of attention deficit disorder [ADD] wasn’t “as bad” as Asher’s diagnosis of ADHD.)
But when we start to look at these neurodifferences as a collective whole, this population is not nearly so easy to dismiss. Because . . . 20 percent. One in five. An average of four to five children in your son’s or daughter’s class. These are not insignificant numbers. So at what point does the other become accepted and embraced for who they are? What’s the magic number that will tip the scales to a place where these kids get their full invitation to participate in society? Twenty-five percent? Thirty? I don’t know about you, but I don’t want to sit around waiting for the statistic to hit some arbitrary number. And I know for sure that our kids don’t have that kind of time.
Difference Is Difference
A few years ago on an unseasonably warm day, Asher, Derin, and I set up a picnic lunch in Vondelpark, a few blocks from our apartment. Earlier that morning, I’d read an article about new research on autism rates, and I brought it up over tuna wraps and a bag of Bugles.
Asher, who up until this point had had his head buried in his Kindle, heard the word “autism” and immediately looked up with interest. “What are you talking about?”
“I was just telling your dad about an article I read. It said that the risks of having an autistic child—”
Asher cut me off. “The risks? What do they mean ‘the risks’?! What do they think it is . . . some kind of disease?”
Um, right. Point for Asher. We decided the word “chances” would have been a better choice, as in, the chances that a child would be autistic, and then continued with the conversation. But that moment got me to thinking about the many messages Asher had already internalized and would continue to internalize as a neurodiverse person. Unfortunately, the way difference is typically discussed in the mainstream tends to have negative undertones and associations, sometimes in the subtlest of ways. But the effect is real.
When I first started imagining the revolution that eventually became my podcast and community, TiLT Parenting, the phrase I found myself using over and over in my creative notes, the mission, and the manifesto was “differently wired.” As that conversation with Asher reminded me, words matter. And the phrase “differently wired” is not only more accurate when defining this population of neurodivergent people, but it’s free of the harmful stigmas that come along with words like “disorder.” It’s time we break down the divisions between alternative ways of being wired so these kids (and us as their parents) can stop feeling isolated and like anomalies, and start feeling like they’re part of a big, brilliant tribe of creative, unique thinkers.
When we consider atypical people as a whole, the lines of division between neurodifferences aren’t so distinct after all. Just ask someone who diagnoses conditions in kids for a living—it’s complicated. There’s plenty of overlap and there are plenty of shades of gray. The way I see it, difference is difference is difference. Anything beyond that in the way society chooses to perceive and think about the way another human being is wired—that’s on us. And it can be changed.
Is Your Child Differently Wired?
“Differently wired” isn’t a scientific or diagnostic term—there are no specific criteria to determine which kids fall under this label and which don’t. So how can you know if your child is differently wired? Both for the purposes of this book and how I define this phrase within my community at TiLT Parenting, here’s how I suggest you approach this question: If you believe your child is differently wired, then he or she probably is. Really, we’re a self-selected bunch. We may or may not have a diagnosis (or multiple diagnoses) for our child. We may simply recognize that some aspects of our child’s life appear to be more than that of our child’s peers (more intense, more emotional, more intelligent, more difficult . . . just more). We may have noticed a disconnect between our child’s performance at school and what we know they’re capable of. We may recognize that our child struggles where other kids sail through with confidence. And most if not all of us would be challenged to say our kids are truly thriving—we recognize that at least one aspect of who they are means their path to adulthood is going to come with more than its fair share of twists and turns.
I often define the kids in our community as those caught in a kind of limbo, since many are living with “invisible differences” that aren’t so easily perceived or recognized from the outside or out of context. Unlike a child who has a neurodifference such as cerebral palsy or is severely affected by autism or another disorder, many kids in the TiLT community slip through the cracks. The underlying reasons for their social or academic struggles or the full picture of why they behave as they do are often missed or misdiagnosed, and as a result, they are wholly misunderstood. This misunderstanding often leads to these kids being punished or disciplined instead of supported. It leads to frustrated students being held back or unchallenged as a result of poor academic performance rather than given accommodations and strategies to help them learn the way they need to. It means parents face constant criticism for their child’s “inappropriate” behavior or milestone delays rather than receive understanding. And that just scratches the surface.
But who exactly are these kids? And what exactly about their wiring is keeping them stuck? Here’s a look at some of the broader diagnostic buckets and invisible differences often seen in these kids.