Spencer Heyfron for Reader's Digest
‘‘Bye. I’m going to work!” Gus says after dinner. And work he does, for as long as the doorman who’s on that night will let him. I don’t know when he got it into his head to be a doorman, but once that idea landed there, when he was about 11, it stuck.
Gus is one of my 16-year-old twin sons. Gus has autism. (These are the signs of autism parents should know about.)
At first it must have been rather startling, this kid who would don the doorman’s jacket and sit at the front desk of our New York City apartment building. But now everyone knows him, and Gus takes the job seriously. He knows the names of all the building’s residents, their dogs, their apartment numbers. He knows all the food-delivery people. The moment people come into the building, Gus checks the computer to see whether they have a package, lets them know if they do, and gets it from the mail room. No amount of insistence on my part can make him understand that it’s rude to ask people where they are going or what they are doing that night or who this “new person” they’ve come in with is—a particular problem for one man who is known for having a parade of paid companions.
If Gus saw someone come into the building with a gun, he’d probably ask the guy what kind of gun it was and what street he bought it on. Gus can do every part of a doorman’s job except the part that involves keeping people out. “Don’t worry, we’ll get him in the union eventually,” says Jen, my most loving and lovely neighbor. This is unlikely.
Job. J-o-b. That word has music and beauty to me. It is not just about making money. It is knowing your kid will have a place in the world. Before having Gus, I read Studs Terkel’s wonderful book Working, in which he interviewed dozens of workers in a variety of industries. The idea that resonated most came from an editor he interviewed: “I think most of us are looking for a calling, not a job. Most of us, like the assembly line worker, have jobs that are too small for our spirit. Jobs are not big enough for people.”
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.
Narratives of autism tend to be about the extremes. Behold the eccentric genius who will one day be running NASA! And here is the person so impaired, he is smashing his head against the wall and finger painting with the blood. What about the vast number of people in between? That’s my son Gus.
At 16, Augustus John Snowdon is the size of a robust 12-year-old, about four foot eleven and 100 pounds. He has the dark, expressive eyes of a boy in a 19th-century Italian painting, though he is nearsighted and his glasses are always smudged.
Gus’s twin brother, Henry, is a head taller, blond, green-eyed, and fair-skinned. They don’t look as if they belong in the same family, let alone like twins. Henry is neurotypical, which, for a teenager, is a synonym for “insufferable.” Yet whatever the occasion, Gus is always his brother’s biggest booster. It drives Henry nuts.
After Gus’s diagnosis and for the first few years after that, I was sure of many things. Starting with: There would be no real friends for my little boy. As long as he had my protection, or his brother’s, he wouldn’t be mistreated … But what if something happened to us? Also, the milestones of a life well lived—parties, dates, first job, first love—would be foreign to him. He would forever be the one who missed the joke. (Make sure you don’t say these things to parents of autism children.)
Spencer Heyfron for Reader's Digest
My kid can’t throw a ball or button a shirt or use a knife or, sometimes, grasp the difference between reality and fantasy. But he can play Beethoven on the piano so movingly, he will make you cry. If he has gone somewhere once, he can find his way there again, next month and next year and possibly for the rest of his life. He believes, sometimes, that machines are his friends, and he doesn’t quite understand what human friends are. But he feels he has them, and he always wants more.
In April 2016, an article on spectrumnews.org, an autism- research news site, explained why up to 84 percent of children with autism have high levels of anxiety and up to 70 percent have some sort of sensory sensitivity: They are lousy at predicting the future. They tend to miss the cues. But it’s not as if they’re golden retrievers, living forever in the present. They know perfectly well that there is a future. So combine these two concepts—knowledge that the future is coming and being horrible at figuring out what it might be—and you can see how knowing your breakfast will always be apples, bananas, and Cheerios, as Gus does, might be extremely soothing. (People really need to stop believing these autism myths.)
The most recent autism stats are startling. In the 1980s, autism was diagnosed in about three in 10,000 American kids. Today the number is around one in 68, according to the Autism and Developmental Disabilities Monitoring Network at the U.S. Centers for Disease Control and Prevention. Among boys, it’s one out of 42.
In some countries, the numbers are lower; in others, higher (South Korea claims that about 2.6 percent of its children have autism, compared with our 1.5 percent). It is the fastest-growing developmental disability, affecting 1 to 2 percent of children in the world. A University of California, Davis, study predicted that the total estimated cost for caring for people with autism in the United States in 2015 was $268 billion, and this number is forecasted to rise to $461 billion by 2025. This represents more than double the combined costs of stroke and hypertension.
I love hearing about brilliant people in history who are now thought to have had characteristics on the autism spectrum, not because I think my own son is going to suddenly reveal himself to be some sort of genius, but because it’s a reminder that the progress of human civilization flourishes with profound oddity and an ability to fixate on a problem.
Albert Einstein used to have trouble speaking as a child, repeating sentences like an automaton instead of conversing. Isaac Newton rarely spoke, had few friends, and stuck with routines whether or not they made sense. If he was scheduled to give a lecture, it’s said that he’d give it whether there was anyone there to listen or not. The artists Andy Warhol and Michelangelo, the actor Dan Aykroyd, the director Tim Burton … the list goes on and on.
About 500,000 youths with autism will become adults over the next decade, and most of them won’t have jobs, 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 20s, about 58 percent of young adults on the autism spectrum have some employment, compared with 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 fit for employment, 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.
Certainly that was Bill Morris’s thinking when he cofounded Blue Star Recyclers, a Colorado company that is cutting down on electronic waste and employing people who are excellent at dismantling and sorting.
Specialisterne USA began in Denmark, when Thorkil Sonne refused to accept the idea that his autistic son, who could reproduce timetables and maps from memory, was unemployable. Today Sonne’s company headhunts software testers and data-entry workers, jobs where the ability to perform tasks that may seem tedious and repetitive is necessary—and in the wheelhouse of many autistic people.
The project that really got me excited—possibly because it will be ready about the time that Gus will actually be looking for a job—is taking shape right now at Rutgers University in New Jersey. It is 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 another 20 will live in housing with graduate students, who will oversee whatever the residents can’t do on their own.
Last year there was a viral YouTube video called “Dancing Barista.” A kid with autism named Sam is a barista at Starbucks. 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.
At age 14, after three years of working the door, Gus was fired.
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 and her pit bull, Francesca, took 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 might have found him annoying. Maybe they didn’t like being asked where they were going, or maybe there was something about having that garbled little voice on the intercom when food was being delivered that reminded them they were paying for actual union doormen and that 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 was 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 18. He pouted, but he accepted it.
Tatiana Ayazo /Rd.comThen I went into my bedroom and locked the door and sobbed. I was embarrassed. Embarrassed that I had believed my autistic son was actually performing a service when he’d been merely tolerated, a nuisance. Embarrassed that I’d 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, after a couple of years went by, Gus got a little 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—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 back to their apartment.
One day I decide to ask Gus the question I’ve been prodding him with for the past year. “I haven’t asked you this for a while, but I’m curious … Do you know what being autistic means?”
Gus lays his head down on his computer and covers his eyes. First, as usual, he tries to change the subject. I press him a little.
Finally, without looking at me, he says, “I know I have autism.”
“And what does that mean to you?”
“It means there are things that are easier for me than for other people, and things that are harder for me. I know I’m different,” he says, his voice barely above a whisper. “But it’s OK.”
He raises his head and does what is so difficult for him: He looks me directly in the eye. It’s a beginning.
via amazon.comRead more from Judith Newman in her book, To Siri With Love: A Mother, Her Autistic Son, and the Kindness of Machines.