Quantcast

Life With a Son on the Spectrum

Lenore Skenazy.

BY LENORE SKENAZY | Manhattanite Judith Newman was at the deli counter ordering cold cuts with her sons Gus and Henry, twins in their early teens. One of them was hopping up and down, announcing to anyone and everyone that his father would soon be coming home from a trip and would land at JFK, then take “the A train from Howard Beach to West Fourth and then change to the B or D to Broadway-Lafayette. He’ll arrive at 77 Bleecker… .” At which point, the boy continued, daddy and mommy “will do sex… .” And then he went back to explaining more about the train transfers.

So begins Newman’s book, “To Siri with Love,” an essay collection about raising two boys, one with autism, one without. I think you can guess which one was hopping and announcing the train schedule, and which one whispered into his ear to add that little detail about what happens when daddy gets home.

Newman writes that she is so used to her son Gus’ behaviors that she barely noticed.

“But in that moment I see our family the way the rest of the world sees us: The obnoxious teenager, pretending he doesn’t know us; the crazy jumping bean, nattering on about the A train; the frazzled, fanny-pack-sporting mother, now part of an unappetizing visual of two ancients on a booty call.”

But you probably won’t see them that way after reading her book. Or, at least not only that way. In fact, you might grow to love them all.

That’s because Newman is a hilarious mom and so heartbreakingly honest that one chapter is actually a list of her traits that she worries may have caused her son’s autism — a list she runs through her head “usually at 4 a.m.” These include, “Because I was old… Because I was fat… Because I had twins via in vitro fertilization… .” She looks at these risk factors with a gimlet eye (and the help of some experts). And then, “When I needed still more ways to blame myself, I would read about the genes involved.” But after she has worked herself into a state, “I look at Gus the person, not Gus the mental condition and calm the hell down.”

What is Gus the person like?

Well, the subtitle of the book is “A Mother, Her Autistic Son, and The Kindness of Machines.” One machine in particular — Siri, Apple’s voice-activated virtual assistant — has provided her son with a companion that talks to him without getting bored or testy about the topics Gus can’t get enough of, particularly transit and weather patterns. So Gus is, like many “ASD” kids (that is, kids on the autism spectrum) focused.

“Every person with ASD I’ve ever met loves repetition and detail in some form or another,” writes Newman. “If a subject is interesting to him, there is no such thing as ‘getting tired’ of it.”

Siri doesn’t get tired either, making her a great companion. But she’s also programmed to interact somewhat like a human. So when Gus asks her, “Will you marry me?” she responds, “My end-user agreement does not include marriage.” And Gus deals.

But the fact that he wanted to marry Siri sounds like pure Gus, because he is in love with almost everyone who’s kind to him. He talks to strangers, he takes his mom’s hand when they go for a walk, he helps out the doormen in his building, buzzing people when their food arrives, fetching their packages, saying hello to everyone. A dream job.

But then, a few years back, a tenant or tenants got Gus “fired.”

“Whatever the reason,” Newman wrote, “Gus’s job was no more.”
Newman had to lie to Gus and tell him it was a union rule. He pouted, but accepted it. Then she locked her bedroom door… and sobbed.

‘‘I was embarrassed,” she writes. “Embarrassed that I had believed my autistic son was actually performing a service, when in fact he’d been merely tolerated, a nuisance. Embarrassed that I had the audacity to convince myself that he was actually in some sort of training, that someday he would have a job like this, that we would be just another dude with a job, a guy who’d get a million hellos.”

How could she even look at her neighbors after that? I’m not sure how Newman managed. But then some time passed, Gus started hanging out in the lobby again, and now he’s back to his greeting duties.

“He will never pass as a kid who doesn’t have some issues,” Newman told me in a phone interview. But between his devoted parents, his pretend-tough brother (who spent all summer going around the city with him), the neighbors who are happy to have him back in the lobby — and Siri — Gus seems very happy.

And hoppy.

Lenore Skenazy is a keynote speaker, founder of the blog Free-Range Kids (freerangekids.com), and author of “Has the World Gone Skenazy?”