Most people know Thomas Sowell from his political writing. I came by Thomas Sowell differently: My kids didn’t start talking until they were well past the age of three. During those non-verbal months, plenty of parents, teachers, doctors, and others suggested my twins were autistic. Sowell’s book, Late Talking Children, was a reasoned counterpoint to that suggestion, not to mention my lifeline to sanity.
This lengthy post (and it IS lengthy!) is for any parents or grandparents with little ones that don’t hit their growth milestones on time, raising the question of autism. I sincerely hope it helps.
My twins were born in 2001. At 36 weeks, they weren’t too premature, but they were small and had to spend time in neonatal intensive care gaining strength. In those first weeks, my husband and I were stressed but overjoyed, especially since we had struggled to conceive.
After six months, however, a new stressor reared its head: Our kids weren’t meeting their developmental milestones on time. The early 2000s was a time of growing autism awareness, especially in New Jersey, which currently has the highest autism rate in the country (As to whether that’s true and why? Well, that’s worthy of a scholarly tome).
One of the signs of autism is a failure to meet milestones by medically-accepted dates. Our pediatrician, rightfully, was concerned when our twins were late raising their heads, sitting up, standing and walking. He was further concerned when they had no recognizable words at age two. While most kids have some language at that point, my son babbled consonants. My daughter, in contrast, was for the most part silent.
Our doctor suggested we call Early Intervention Services. New Jersey pays (or New Jersey taxpayers pay) for specialists to conduct a home visit and evaluate your child. If your child is found to be significantly “delayed”, you’re entitled to “free” in-home therapy (thanks, taxpayers!) until the child is school age. At that point our doctor wasn’t prepared to say our kids were disordered. However, he felt speech therapy couldn’t hurt and might even help.
Initially, we balked. After all, we had twins, and it’s not uncommon for twins to take longer to mature. Besides, it was clear that even though our kids weren’t talking, they comprehended speech. They responded to our requests and answered/asked questions by pointing. My non-verbal daughter even started inventing signs to communicate; she mimed “read to me”, for example, by holding her palms together and then opening them like the spine of a book.
They’ll talk when they’re ready, I figured. And then when the kids were around two-and-a-half, I enrolled them in a Gymboree-style play program and started to worry. Their peers were chattering and forming short sentences. In contrast, my son was still repeating hard consonant sounds. While the other kids asked mommy to “pway ball”, my daughter could only point at the ball and grunt, with her grunts becoming angrier the longer I took to respond. In terms of communication, it was all very Quest for Fire.
Scared, I consulted a second pediatrician. She told me there was “definitely something going on” with my children and even had a name for it: autism. She urged me to contact the Pediatric Specialized Services of a prestigious research hospital for a developmental evaluation “before it’s too late”. With autism, the earlier the intervention, the better. Tick-tock.
I returned home from that appointment devastated. The first tearful call I made was to my husband, who told me he was coming home and to take things “one thing at a time” (he’s the the level-headed one). The second call was to the Specialized Services the doctor mentioned. To my shock, there was an eight-month wait for an autism evaluation. Was there an autism epidemic in New Jersey? A shortage of qualified doctors to evaluate? Or was this all hysteria?
I was still upset when my husband returned home. That’s when he told me about a man named Thomas Sowell who had a son, John, who didn’t start talking until around age four, yet grew up to be a bright and non-autistic young man. Mr. Sowell had even written a book about it: Late-Talking Children.
I obtained a copy of this little gem in short order and devoured it as only a panicked parent can. Mr. Sowell wrote the book in 1997, when autism was becoming a more common diagnosis. He relates that his son, John, didn’t start talking until three-and-a-half or so. Like my kids, John was born prematurely, and like my kids, it was clear that he understood speech and communicated through pointing and gestures. He also exhibited a remarkable memory and early proclivity for math. Mr. Sowell took him for evaluations by various experts, all of whom were confounded as to why John wasn’t talking. And yet talk John eventually did, growing up to become a math-and-chess whiz and a computer programmer.
Late-Talking Children is in part a summary of the responses Mr. Sowell received after he published an account of his son’s delayed speech in his column. Readers contacted him with similar accounts, and their stories contained interesting commonalities with ours. Over 60% of Sowell’s survey group of parents with late-talking children had an engineer as a close relative (lots of engineers and accountants in our family). Most of the children had a close relative who played a musical instrument, sometimes professionally (pianists and guitarists in our family). Most of the children were late in potty-training (my son was maddeningly, infuriatingly late). And most importantly to me, many of the parents of late-talking children were given an incorrect autism diagnosis by a well-meaning doctor, teacher, or therapist. Could it be there was nothing “wrong” with my kids and I just needed to let nature take its course?
This was an invaluable insight as we navigated the next months. Specialists from the State came to our house to evaluate our kids, and they both qualified for speech therapy. Our daughter also qualified for occupational therapy for something called Sensory Integration Disorder (“SID”). One of the specialists determined she had SID by picking her up by the ankles and vigorously swinging her back and forth like a pendulum. My toddler daughter didn’t like being swung upside-down by a stranger and started to cry. I thought this was pretty understandable, but the specialist informed us she had “issues with being upside down” that needed to be treated. We politely rejected that offer — everyone needs to talk, but only pole-dancers need to be upside-down.
At the same time, we explored private therapy. A local speech pathologist agreed to see the kids, but cautioned me that they showed signs of Pervasive Developmental Delay, Not Otherwise Specified — a confusing, catch-all condition that was “autism-like”. Another pathologist told me my daughter had speech “apraxia”, and that she would never be able to talk unless she received speech therapy five times a week, indefinitely. Coincidentally, this pathologist was a recent Chinese immigrant. Imagine someone telling you, in a Cantonese accent so thick it’s nearly unintelligible, “I will teach your child to talk!” We were reaching Pythonesque levels of absurdity.
We decided to stick with the State’s weekly speech therapy. I really wish I could tell you it worked, that all those hours of “echoing” and repeating explosives and fricatives did the trick. All I know is, somewhere around age three-and-a-half, my kids started talking. First words, then sentences. Not nearly as clearly or as sophisticated as their peers, but by age five, they had pretty much caught up. Was it the speech therapy? Or did they simply have a longer developmental arc than most?
I had no answers. But at least I could finally relax, take a deep breath, and not fret that my children were autistic — well, for the time being. As it turns out, the autism scare wasn’t over for us yet.
You see, when my son started preschool, the teachers reported he exhibited several “red flags” of autism. Most prominent was his tendency to get so absorbed in a task (usually building) that the teachers had trouble “re-directing” his attention, as well as his “difficulty transitioning” from the Lego table (translation: he cried when they announced he had to move to the “art station” and leave his Lego creation for another kid to dismantle).
Then came public school kindergarten, or what I like to call the Gateway to Hell. His teacher likewise reported “red flags” in my son’s behavior. Dang it all if he didn’t still obsess over those Legos. Moreover, my son lived too much in his head, preferring to build and tinker rather than playing tag or ball with the other boys. He was clumsy. He was autistic-ish.
First and second grades were more of the same. Once, while I was volunteering at a class party, the teacher pulled me aside to tell me she had donned a pair of oversized novelty sunglasses and asked my son, jokingly, “Do I look like a supermodel?” To which my son replied, deadpan, “You’re too fat to be a supermodel.”
I wanted to spontaneously combust from embarrassment. Now, I knew my son didn’t care for this particular teacher. Her habit of forcing the entire class to put their heads down on their desks due to the infraction of one student really stuck in his craw, as did the forced enthusiasm she relied on to try to get kids excited about things like spelling worksheets and coloring maps.
Still, it was not even close to an excuse for such breathtaking rudeness. I launched into an apology for my son’s behavior. “No, no, no, Ms. Johnson,” the teacher stopped me. “He wasn’t saying I was fat to be mean! He’s hyper-literal. He honestly doesn’t get the context or the joke.”
Hyper-literal. As in, autistic. At home, my son was affable and sunny, given to cracking all sorts of jokes. Why was he losing that sense of good-natured fun at school?
That is the question I should have been asking myself. Instead, after the school’s Child Study Team approached me, I was asking myself whether we’d been “in denial” about our son. The Team, consisting of the school psychologist and various paraprofessionals, told me they had concerns about my son’s ability to form friendships, his habit of living in his thoughts, and his tolerance for frustration. They weren’t saying that he was autistic, but they wanted to conduct an observation and evaluation just to make sure.
While my husband was skeptical, I admit I freaked. Various professionals had been mentioning autism to us for years now, and I decided it was time we took them seriously. The Child Study Team was right: our son had few friends and a hard time bonding with the boys in his class, especially since he wasn’t one for sports — just Legos and Pokemon. He was argumentative at times, socially awkward at others. Maybe there was something wrong.
At my insistence, we had our son evaluated by two child psychiatrists. The first saw no autism — just a smart, unathletic kid who was also quite shy. The second initially ruled against autism. However, after an email exchange with my son’s teacher, he admitted he couldn’t “rule it out.”
My husband and I decided to meet with the Child Study Team to share the two psychiatric reports. We also decided that we needed to be open with the Team about our own – ahem – quirks. Specifically, these were my husband’s OCD and my own anxiety, both of which we addressed through medication (we really should have stock in Pfizer by this point). We thought this might give the Team some needed insight on our son’s cerebral nature and awkwardness.
A word of advice to parents attending a Child Study Team meeting: Don’t begin things by jokingly announcing, “First off, we’re both craaaaaazy!” It won’t be the ice-breaker you hoped, eliciting relaxed laughter. Instead, it will induce lots of frowning and frantic note-scribbling. This frowning and note-scribbling will only increase when you offer one of your son’s intricate doodles as an example of something he likes to do at home “for fun”:
What can I say? My son went through a phase where he liked to doodle maps. When the Team saw that picture their faces lit up like the Nazis’ did in Raiders, just after they opened the Ark and right before they melted. They again suggested he was mildly, a touch, autistic. They again proposed an evaluation, including having a staff member “shadow” my son with a video camera, recording his social interactions (or lack thereof). If he qualified as autistic, he would also qualify for an individualized education plan and other support, including “social therapy”.
After the meeting, at home, I found myself once again in fear, confusion and tears. I knew my son better than anyone and the boy I knew was whip-smart, funny, loving and introverted. He couldn’t throw a ball to save his life — but who cared? Yet the school was seeing another kid entirely: A withdrawn, socially-clueless, walking bundle of “issues”. What to do?
“Okay”, my husband reasoned, “let’s assume they’re right, that he’s mildly autistic.” He paused. “So what?”
So what? I had never considered it from this angle. So what if our son was a smidge, autistic? We knew there was no cure for autism. We knew the school was proposing social therapy of questionable efficacy at best. We knew our son was a top student and not a discipline problem. We knew, despite any “interventions”, our son was going to be exactly the person God made him, and we loved that person. Our only real concern was his lack of friends — but how can you foist friendship upon a shy kid with brainier interests? You can’t. (Note to you athletic types: It does seem easier to form social bonds in the dude-dom when you’re good at sports.)
So we waited it out. We told the school we’d pass on an autism evaluation.
I’ll be honest with you: Elementary school was a rough ride. Our son continued to resent the worksheets and the rules. He still had few friends.
And then, a miracle happened: junior high. For a lot of kids, it’s hell. But for our son, it marked the point when he began to blossom. Academically, there were less worksheets and rote work. A lot of his teachers not only allowed, but welcomed discussion (suddenly, he was no longer “argumentative”, but “thoughtful”). He started enjoying his classes. And socially, the transition to a bigger pond with more potential friends was just what he needed. He found his tribe.
They remain his friends to this day. It will come as no surprise to you that not one of his friends is an athlete. Instead, they’re on the debate team and in robotics club. They like to play Risk and Magic the card game. They follow politics and like tossing around obscure movie quotes and references. You know the type. Would I call any of them socially smooth or sophisticated? No. But I wouldn’t call them autistic, either — and that includes my son. He’s empathetic and funny and engaging. He’s just taken longer than most to grow comfortable in his own skin.
So to wrap it up, a few pearls of wisdom for you to take or leave:
None of the foregoing is meant to dissuade anyone from obtaining an autism evaluation for their child if they believe it’s necessary. Autism absolutely exists and a skilled evaluation can not only identify it but pinpoint ways to help.
That being said, if anyone is going to tell you your kid is autistic, that person should have the initials “M.D.” after their name. Please don’t think I’m being dismissive of the teachers who expressed their concerns to us. I’m impressed and appreciative that, while dealing with twenty-something other children, they noticed my son’s struggles and wanted to help. Still, a special ed degree does not an autism expert make. Go to a doctor, preferably a pediatric neurologist or psychiatrist who specializes in autism.
Shyness can sometimes be confused with autism. For example, autistic kids often have trouble making direct eye contact and come across as socially stiff. Well, unfortunately, so do shy kids
Autism and early intervention is a business. Thomas Sowell made this point in his book, and it’s an important one:
Professionals working for the public school system have built-in incentives to label children and put them into special programs, which often get the school system more money from the government. Moreover, these programs need a steady supply of warm bodies, in order to keep going, whether or not they help or hurt the particular child.
Again, I don’t discount or disparage teachers and the important work they do. But I do think the phenomenon Sowell’s describing partially explains why the elementary school seemed so intent on labeling my son autistic.
Finally, if you fear the costs of “doing nothing”, consider the costs of labeling your kid with a serious neurological condition that he just doesn’t have. Read “I Had Asperger Syndrome. Briefly.”, in which the author recounts how his mother — an “expert” in Asperger’s! — not only diagnosed him with the disorder but had him participate in an educational video about it.
It took him years to forgive his mother. And, as he writes:
You can be highly perceptive with regard to social interaction, as a child or adolescent, and still be a spectacular social failure. . . Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome.
Anyone out there know Thomas Sowell? If so, thank him for me. Tell him he’s prevented at least one nervous breakdown in New Jersey.