Our son Finn’s diagnosis of autism spectrum disorder (ASD) almost 10 years ago, when he was four, didn’t exactly come out of left field. All the signs were there: the party-trick-worthy aptitude with numbers and letters precipitously offset by abysmal verbal and social skills. But Finn was also very affectionate, which wasn’t on the checklists we were finding on the Cenozoic-era Internet.
During his official assessment, the sinking feeling set in right away. But it wasn’t until Finn abruptly stopped singing Happy Birthday to a family of dolls and strode across the room to gaze at the alluring prismatic underbelly of a CD – like someone possessed by unseen forces – that we really knew the jig was up.
Since then, books about ASD have proliferated in lock step with diagnoses (now supposedly at an astonishing 1 in 54 for boys). These generally fall into a few distinct categories. After your basic clinical, therapeutic or “…For Dummies” guides written by experts in the field you’ve got the rapidly growing genre of books written by people with ASD, which are the ones I generally enjoy the most. Temple Grandin, autism’s most prominent and articulate – not to mention witty – spokesperson, has many books that are all terrifically enlightening and informative. Daniel Tammet, a synaesthetic autistic savant and all-round lovely guy, is about to add his own oeuvre with Thinking in Numbers; an interesting counterpoint, perhaps, to Grandin’s Thinking in Pictures.
Then there are the books written by neurotypical parents (“neurotypical” being the term those in the autism community use for people who aren’t them). These are often told in the mold of a heroic saga: the unreachable child “saved” through one parent’s tireless quest for the right intervention (anti-vaccine crusader and starlet Jenny McCarthy’s books are the flashiest, and most controversial, examples of this). While the covers of these books often used to show, say, a solitary child walking alone on a country road (who allows this?), or gazing through a rainy window with an unreachable look in his or her eye, the trend now is toward images denoting success: stock shot of gay, laughing children or the author’s unmistakably bright and engaged child.
As writer Joel Yanofsky noted in Bad Animals, his 2011 memoir about his autistic son, though they’re meant to inspire, these books can, paradoxically, have the exact opposite effect. The problem is not with the children depicted in them—though autism is a spectrum for a reason, the people on it can share proclivities in remarkable ways—it’s with the parents themselves, who come off as an elite warrior corps armed to the teeth with limitless time, resources and, that rarest of commodities: energy. In the early days, reading these books could send me into a tailspin of inadequacy. And then there was the guilt-inducing time-management aspect: given that I have no plans to go to Mongolia, mightn’t those precious hours spent reading about the indomitable dad who rode across the Mongolian steppes in search of a shaman to help his son have been better spent time playing blocks in the basement with Finn?
At first glance, Kristine Barnett’s book about her son Jake – who went from being severely autistic (socially disengaged and non-verbal) to, at age 12, an affable graduate-level quantum-physics researcher with a published paper on lattice theory (unrelated to growing clematis) – seems like an extreme example of the parent-as-valiant-crusader genre. The book’s liberal use of clichés: “Autism is a thief. It takes your child away. It takes your hope away, and it robs you of your dreams,” combined with its self-congratulatory title, which suggests that producing genius is simply a matter of “nurturing,” certainly don’t help dispel this sense.
For those parents who can’t see beyond immediate goals like getting their kids with ASD to look at them, or eat foods that aren’t square-shaped, Barnett’s book might seem like a cruel fantasy. Aren’t kids like Jake the headline-grabbing exceptions? The ones who, with thousands of digits of pi loaded at the tip of their tongues as they scope the room for toppling books of matches, perpetuate the myth that everyone with autism is a savant or supergenius waiting to happen?
Yet The Spark soon becomes quite a different book: one that, despite its atypical subject, should have inspiring practical value for parents of kids who fall anywhere on the spectrum – including outside of it. I think other parents would agree when I say that anything I’ve learned of any value about dealing with my autistic child has applied equally well, if not better, to my non-autistic one. (This cuts both ways: anyone who learns about ASD eventually starts the mental drinking game of labeling people they know with it, a list from which oneself is never excluded.)
And for anyone interested in the frontiers of the human intellect, it’s a fascinating portrayal of an off-the-charts genius with a singular ability to combine savant-like mathematical skills and perfect memory with profound analytical thought. At 11, Jake was working on an original theory in relativity that could, if it’s proven correct, create a new field of physics and put him in line for a Nobel Prize.
Jake’s uncanny mental abilities were evident early on. As a preschooler, he executed flawless running tallies of Barnett’s groceries and committed to memory a driving atlas of the U.S. But Barnett, who was raised in the cornfields of Indiana as part of the new Amish community, wasn’t interested in raising a prodigy. She and her husband Michael, an unshowy working-class couple, wanted a mainstream American childhood for Jake, something made seemingly unachievable by his utter lack of social skills.
Barnett, who ran a daycare, believed innately that all kids, Jake included, should be given free rein to pursue their natural interests. Reasonable as that sounds, it isn’t easy when those interests seem obscure or meaningless, like filling page after page with hundreds of hand-drawn circles, staring vacantly into space for hours or lining up thousands of Q-tips. The state-funded therapy Jake received focused on curbing these behaviours, which only seemed to make him worse.
At three, Jake’s favourite book was a college-level astronomy text. So when Barnett heard a nearby observatory was hosting a program on Mars, she took him along. There, Jake amazed a packed auditorium by knowledgably participating in a discussion on lunar gravity. Barnett was dumbfounded for another reason: She’d never heard Jake have a real conversation before.
Astronomy was what fostered Jake’s sociability; the problem was finding someone he could speak to about it. Barnett asked the local university if Jake could audit courses in the subject. When he effortlessly aced all of them by age 10, a professor suggested he enroll.
In his excellent recent book Challenging the Myths of Autism, Toronto’s Jonathan Alderson is one of a growing number of autism therapists who believe the repetitious “stimming” behaviours associated with autism – such as rocking, flapping or spinning – can have purpose and meaning. Barnett’s take on how Jake’s stims segued into his later skills bears this out in fascinating ways. Endlessly dumping cereal out of boxes turned out to be Jake’s way of gauging volume, spinning chairs a means of simulating planetary rotation, wrapping yarn around the kitchen the beginning of a visual math system he later perfected.
There’s also plenty to admire about Barnett herself, who founded an award-winning charitable sports program for autistic kids called Jacob’s Place and a skills development group for those on the lowest end of the spectrum. One of Barnett’s two other sons was born with a rare, life-threatening medical condition and Barnett herself suffered a stroke at age 30 as a result of undiagnosed lupus.
A mother I met years ago told me that she’d seen her daughter’s habit of playing independently as a good thing until she was diagnosed with autism. I still find this disturbing; after all, it wasn’t the child who’d changed, it was her mother’s way of thinking about her. Temple Grandin and others are increasingly called for a reverse paradigm shift, one where we reframe autistic kids’ “obsessions” as “passions” (“obsessions” are often interests that don’t interest us) that we can help them parlay into jobs or careers. Thinking this way helped turn the tables in the Barnett household; when Jake talks about his work to his family these days, it’s presumably their turn to stare vacantly off into space.