To Siri with Love

by Judith Newman

  Sure. I get it. But I’m betting Terkel didn’t talk to any autistic people. Because he might have seen that to some people, a job is to the spirit what helium is to a balloon.

  * * *

  Over five hundred thousand people with autism will become adults over the next decade, and most of them won’t have a job, according to a 2015 study by the A. J. Drexel Autism Institute. Two-thirds of autistic kids have no plans for either a job or further education after high school. As they get into their twenties, about 58 percent of young ASD adults have some employment, as compared to 74 percent of those with intellectual disabilities and 91 percent of those with speech impairment or emotional disabilities.

  That’s a lot of people with nothing to do and nowhere to go. And while of course there are those with medical and/or cognitive issues that make employment out of the question, there are many more who are perfectly employable, with a bit of flexibility and attitude adjustment. Employment that is not about charity, but about recognizing some of the nutty talents that often present themselves with autism and exploiting the hell out of them.

  I am not talking about the very small percentage of exceptional autistic geek talents so well represented in Silicon Valley; the Temple Grandins and John Elder Robisons will take care of themselves. (Though even in these cases, I don’t want to be cavalier. High IQ and specialized skills aren’t always enough. A woman at NYU’s then-named Asperger Institute told me that a substantial percentage of even her most brilliant patients couldn’t stay employed because of their social cluelessness. Getting a medical degree was one thing. Practicing as a doctor, with all the people skills that involves, was quite another.) Rather, I mean the more pedestrian but still very needed tasks that play upon the autistic individual’s love of repetition, or passion for categorizing objects. How many people in this world actually love to take apart electronics and sort out the parts? If you’re on the spectrum, that activity might make your day. Certainly that was Bill Morris’s thinking when he started Blue Star Recyclers in Denver, a company that is both cutting down on electronic waste and employing people who are excellent at dismantling and sorting.

  Specialisterne USA originally began in Finland, when Thorkil Sonne refused to accept the idea that his autistic son, who could reproduce timetables and maps from memory, was unemployable. Today his company headhunts software testers and data entry people, jobs where the ability to perform tasks that would seem tedious and repetitive are in the wheelhouse of many autistic people. When Jonah Zimiles, an attorney and recent Columbia MBA grad, and his wife realized there were few businesses where they could imagine their young autistic son getting the kind of job he would need someday, he opened [words] in Maplewood, New Jersey—a bookstore that hires people on the spectrum. Jonah believes in “job crafting”—adjusting jobs to the individual. While there will always be some challenges, it’s not that hard to find people with autism who like to categorize and order books or enter inventory on a computer, even if they may not be the best salespeople in the world.

  The project that really got me excited—possibly because it will be ready about the time Gus will actually be looking for a job—is taking shape right now at Rutgers University in New Jersey. Rutgers has more than fifty thousand students spread over many campuses. It also is in the state with the highest autism rate in the country: one in forty-five kids, with a rate of one in twenty-eight boys. (Exactly why is a mystery. It’s not just because people with autistic kids moved here for the solid medical and school resources, as New Jersey sources report. According to the CDC, 83 percent of the people with autism in New Jersey were born there.) Rutgers is now developing the Rutgers Center for Adult Autism Services. The idea is that about a hundred adults with autism will work in various jobs on campus, and a percentage of them will live—permanently—in housing with graduate students, who will oversee whatever the residents can’t do on their own. If this were Gus, I’d guess they would be helping him pay bills and cut his meat, but by the time he’s twenty-five, who knows?

  “Rutgers has its own bus system to all the different campuses, so residents can learn to take the buses and get around easily,” says Dina Karmazin Elkins, who, along with her father, former CBS CEO Mel Karmazin, and one other family, seeded the project for $1.5 million and is currently raising additional funds.

  Colleges are a big community with various jobs that suit various kinds of people. One small example: Rutgers has its own midnight movie theater. “A number of people on the spectrum have sleep cycles that are different than ours, and may function best working at night, so some people may be well suited for working there,” Karmazin Elkins tells me. Dina’s excitement about the project is very personal. She currently has her fourteen-year-old autistic son working three part-time jobs.

  Dina envisions work-live programs on college campuses across the country, because colleges don’t tend to go out of business. She knows that the most vulnerable are the last hired and the first fired—so the idea of having programs like hers on campus is that “those jobs won’t go away if the economy tanks.”

  * * *

  After three years, Gus was fired from his job as a doorman.

  I was shocked. I’d had people I barely knew stop me in the elevator and tell me how having him there to greet them so enthusiastically cheered them at the end of the day. Becky, a recent divorcée who’d been going through a rather painful time, told me Gus had gotten into the habit of waiting for her when she took her pit bull, Francesca, for their last walk of the day, then gallantly escorting them to their door. On the rare occasions when he wasn’t waiting for her, she said, her day felt incomplete.

  Of course I didn’t hear from the people who found him annoying. And someone—or maybe several—did. Maybe they didn’t like being asked where they were going by the nosey parker, or maybe there was something about having that little garbled voice buzz them on the intercom when food was being delivered that reminded them they were paying for actual union doormen, and this was a little unprofessional. Apparently, other kids in the building were asking why they couldn’t work the door. Whatever the reason, Gus’s job was no more.

  I took for granted that people would make allowances for my son, that they should, because he is such a good boy. And when they didn’t, and I had to tell him he was laid off, I made up the excuse that the doormen’s union wouldn’t allow him to work until he was eighteen. He pouted, but he accepted it. Then I went to my bedroom and locked the door and sobbed deep heaving sobs. I was embarrassed. 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 he would be just another dude with a job, a guy who’d get a million hellos.

  The false job had given me false hope.

  Then Gus got a little older, less pushy, and wasn’t insisting on operating the intercom to announce visitors. He’d just hang out, greet people, and find their packages and dry cleaning. In this he was actually useful—or at least that’s what the new doorman tells me. And I guess I need to believe it. Now, most nights, he is back with two of his beloved door guys, Jimmy and Jerry. His evening concludes when he walks Becky and her pit bull, Francesca, back to their apartment.

  * * *

  In truth, I don’t know what Gus will be able to do. I do know that he does practice a kind of learned helplessness; I did not know, for example, that he could pour a glass of milk for himself until one day recently I got vertigo and couldn’t move without being wildly nauseated, and no one was around, and Gus really, really wanted milk. It was that day when I thought about something John Elder Robison had written in his book Switched On, about the low expectations we have of people with autism, how it extends to everything in their lives. I flash back to how John used to carry Gus on his back everywhere until he was seven or eight; then, for a while after that, Henry carried him. Why? Because Gus
liked it.

  “There is an unintended downside to the new diagnostic awareness,” Robison writes. “Maybe today’s autistic kids were more like wise and wily pets who had trained their parents to feed them, house them and provide entertainment and healthcare for a lifetime, all for free.” I love this idea, even as I know that it’s largely untrue.

  What upsets me almost as much as Gus not finding a job is Gus finding a job that is nothing more than charity. Kindness is fine. The pity that is at the heart of charity makes me ill—even if, quite possibly, Gus wouldn’t know the difference. And then there are the real little jobs he wants to do, but he can be so easily cheated. A neighbor with a lucrative job asked Gus to cat-sit for ten dollars a day, going twice a day to feed and play with the cats. He couldn’t open their food cans himself, so this was a Mom-and-Gus project. But no one was more diligent about making sure the cats were cared for. I might forget an afternoon play session; Gus never would. But I noticed that if Rebecca came back earlier than expected—say, in the afternoon rather than late at night or the next day—she would only pay Gus five dollars instead of ten because he was supposed to come see the cats twice.

  Gus didn’t care at all. I was so angry the third time she did this that I stopped him from cat-sitting and never talked to her again. I want him to understand money, and understand that he was being shorted. Yet I couldn’t confront her. I was embarrassed because to her I would be making a stink over a few dollars. How can I expect him to advocate for himself when I can’t do it for him?

  I loved that it was a real job. I loved that Gus loved it. And while I had to hold Henry back from confronting her—something he would not do for himself, but would do for his brother—I loved telling Henry what had happened, for the sheer pleasure of watching his righteous indignation. It reminded me of a day we were at McDonald’s when Henry and Gus were six. Henry noticed they had only put nine McNuggets in Gus’s ten-pack. No amount of talk on my part could convince him not to march up to the girl at the counter and complain. Of course, I wasn’t quite sure if Henry was being protective of Gus or thinking, Hey, I’m the only one allowed to take advantage of him like that.

  * * *

  Last year there was a viral YouTube video called “Dancing Barista.” A kid with autism named Sam is a barista at Starbucks; his manager posted the video. Being a barista was the kid’s dream job. But Sam had been told he was unemployable: his movements are jerky, and he can’t really sit still. As he explained when he and the store manager appeared on Ellen, he needs to keep moving. “I can concentrate when I dance,” he says.

  And so he does. The video makes me cry every time, but it shouldn’t, because there is nothing sad about it. The lovely Starbucks manager saw that he could make someone’s dream come true. He looked past the jerky movements and the lack of conversation and saw a goofy teenager with a burning enthusiasm and a talent for making a perfect head of foam. All he had to do was let him dance.

  Twelve

  Chums

  This was the dream. I had a dog—or a cat, or hamster, or snake. It lived with me, but I forgot it was there. Forgot food, forgot water. As it was withering away, I would finally notice. By the time I remembered, it was too late: I would try to feed it, I would apologize, and it would die in front of me. I had this same dream, about once a month, for years.

  Then I had children. OK, maybe I could take care of living things after all.

  That dream went away, but this one took its place: I am gone, and Gus lives alone. There are no visitors. Somehow—it’s a dream; one doesn’t dwell on the logistics—take-out food is delivered to his house. But he doesn’t know how to open the container. He just stares at it, like a dog stares at a tin can.

  So many times I have woken up from this dream, shaking. Will he ever learn to use a can opener? But more to the point: If he doesn’t, will he have a friend who’ll open the can for him?

  * * *

  Those are dreams. Here’s real life.

  “Hello.”

  “Hello.”

  “Hello.”

  “What are you doing?”

  “I’m getting ready for school. What are you doing?”

  “I’m talking to you on my phone.”

  “Cool.”

  I admit these conversations would not make Noël Coward envious. But they are conversations. Every morning for the past six months, Gus and Mandy text each other.

  “Who is Mandy?” I ask one day.

  “She’s a friend,” Gus replies.

  “Where do you know her from?”

  “I’m not sure.”

  What? Then I remember who I’m talking to. “Have you ever actually met Mandy?” I ask.

  “No,” he says, adding quickly, “but she’s my friend.”

  Gus’s friendships remind me of special ed report cards. In the ongoing effort not to be all judgy, report cards at special ed schools have a language all their own. When a kid has a skill set that is almost nonexistent, the report card refers to that skill as “emerging.” In our house, this has become shorthand for “You have no idea what you’re doing.” As in, Henry, seeing me late for an appointment and frantically fussing with my phone: “You still don’t know how to call a car with Uber, do you?” Me: “That skill is emerging.”

  So I like to say: Gus’s concept of friendship is emerging.

  Mandy, as it turns out, is a girl who went to LearningSpring, Gus’s last school. She is considerably older than he is, so I have no idea how they ever met or how they ended up swapping phone numbers. But she is very nice and is in a job-training program. I know this because one day I swiped Gus’s phone and texted her. She then asked for my phone number and email, and I ignored her request because I know better. Perhaps because many of the kids Gus knows came to this whole communication thing late, phones still have novelty value. This means that if I gave Mandy my phone number, she would text me every morning, too. So it would be me, Gus, and the other fifty people she probably has on her check-in list.

  I already have this little dilemma with another kid in Gus’s school. As exhausting as Gus’s desire for repetition can be, he is perfectly capable of being exhausted by other people, even people he loves—and when he is, he tends to hand the phone over to me. This is how I inadvertently became friends with Aidan, a charming boy who liked to call, email, and FaceTime even more than Gus. Aidan wants to be a talk show host in the style of Anderson Cooper, and is perfecting his technique on me. After he barrages me with questions (ignoring the answers) and tells me about his new school, he’ll sometimes say, “We’ll be right back after this message.” I’ve learned to wait for the commercial break he programs into his talks, and then we resume. One time he wanted to come over to our house, not to hang out with Gus but to interview me on tape. Before the interview, he was very exacting about what I should wear and how I should do my hair. The look was somewhere between Christiane Amanpour and a hooker. I pray he’s lost that video.

  Many kids who could barely talk in their early years develop a passion for communication later in life, especially when technology is involved. Part of the fun of listening to them is that, unlike neurotypical kids their age, they do not place any value on “coolness”; there is no moderation in their joy. So a recent conversation between Gus and his friend Ben on FaceTime went like this:

  Gus: How was your day?

  Ben: Fantastic! How was yours?

  Gus: The best! I had a great apple for lunch.

  Ben: I love apples! Mine was terrific, too!

  And on and on like that, for an hour.

  Partially this preference for gadgets over live face-to-face chat may be because people with autism often don’t want to look at someone when they talk. Recently a rather brilliant young man with ASD told me that for him it has to do with his field of vision—he sees only a small fragment of a person when he looks at him, and his imagination fills in the rest of the visual field with something ghastly. So what he sees is not the person or people, but part reality, part phan
tasm. And thus just about any form of communication is easier than face-to-face. He is unusually articulate, and reminds me that there’s more information like this available in his 1,200-page self-published book.

  So when Gus and his cohorts drive me a little batty, I have to remind myself: now there are connections where once there were none.

  * * *

  Henry’s friendships are complicated, multifaceted, nerdishly competitive; there is a small tight group, and their bonding involves endless teasing and one-upping; the guy who knows the most about a particular subject wins. This was the conversation I heard a few days ago:

  Julian: Have you watched Vampire Diaries? It’s great.

  Henry: It’s just Twilight repackaged.

  Julian: It’s not Twilight at all.

  Henry: Are there tan werewolves with six-packs?

  Julian: Well, yeah . . .

  Henry: Are there super-pale vampires that sparkle in the sunlight?

  Julian: Well, these vampires don’t sparkle . . .

  Henry: Is the vampire family fighting with each other?

  Julian: Um . . .

  Henry: And are the werewolves and vampires all fighting over a pretty girl with no personality whatsoever?

  Julian: FINE.

  Gus’s whole friendship thing is simple: if you are in Gus’s orbit, you are his friend. The deliveryman from the Chinese restaurant, the kid at the next desk in school, the train conductor who hands him the microphone, the computer he uses to see other friends, the dog walker he passes in the lobby, the caretaker he cajoles into taking him to bus stops, all of them. He doesn’t have a lot of requirements to be in his legion of friends, and I’m not aware there’s any hierarchy. He won’t want to spend any face time with you, but that doesn’t make you less of a friend; he doesn’t really want to spend face time with anyone, immediate family possibly excepted. There is, however, a special class of friends—the people I pay to take care of him.