“He could get jobs,” says his mother, Sue.
“The problem is maintaining them,” adds his father, Ed.
Tom was born with a heart defect, took forever to potty train and played mostly by himself during preschool. He was in kindergarten when an observant teacher offered the Whalens a hypothesis that might explain their son’s behavior: autism.
The next 12 years of school were marked by special-education plans, adapted-learning strategies, personalized assistance and lunches spent at what Tom remembers as “the reject table.” But it was also a haven of structure, safety and socialization. He had a place to go, people to look out for him, opportunities every day to learn and find his strengths. (Tom could solve complicated math problems in his head — he just couldn’t explain to teachers how he’d done it.)
High school graduation was a victory and a plunge into the abyss. What now? “I was scared to death,” Sue says.
What Tom did first was attend community college, which didn’t work out very well. Without the rigid schedule and personalized support that aided him through high school, he drifted, often skipping class to sit in the campus library.
So he dropped out and started spending his days mostly alone at the family’s home in Northeast Baltimore. “At that point, I realized I have a bit of a wild streak,” Tom says with a smile. He wears Star Wars slippers and shifts his baseball cap up and down on his head as he sits on his parents’ couch.
Sue and Ed remember this period less fondly. Tom, who had been placed on a two-year wait list for help from Maryland’s Developmental Disabilities Administration (DDA), would load up his backpack, step outside and start walking toward the city skyline.
He would wander through Baltimore for miles, sometimes end up lost and then refuse to answer his cellphone because he didn’t want to get in trouble. Once, he got mugged. Sue felt herself edging toward a nervous breakdown.
She called her contact at the DDA in tears, begging for assistance. Tom’s case was bumped into “crisis” status, which allowed Sue and Tom to start looking at day programs for people with disabilities. Few seemed tailored to adults with autism, and some seemed more like nursing homes, where they knew Tom would languish.
Finally, in 2012, they found Itineris, a center created by parents of other young adults with autism. To the Whalens, it seemed like nirvana — a homey environment where Tom could socialize, learn life skills, interact with the broader community and, best of all, get help finding — and keeping — a job.
But even with assistance, that hasn’t been easy. Unlike other developmental disabilities, such as Down syndrome, people on the autism spectrum don’t seem much different from anyone else — and therefore don’t offer a visual cue to help new customers or co-workers adjust their expectations accordingly. The shoppers who complained to Tom’s manager at the grocery store didn’t know he has autism. They just knew they didn’t like to see the guy bagging their groceries biting his fingernails and picking at his face.
Other times, he would get in trouble for making off-color jokes. The filters that might help someone else know what not to say in a workplace just weren’t in place for Tom. And, more than once, he misread the signals from a friendly co-worker. Tom’s crushes were unrequited, but he didn’t understand that until it was too late.
“We had to limit his phone use, because he’d get somebody’s phone number and call them 20 times a day and text them,” Ed says. “He had 10,000 texts in a month.”
Still, what Tom wants, more than anything, is to work. “For money and independence,” Tom explains. “I have to do something to fill the void.”
Just like the rest of us.
“We’re talking about adults,” says Ami Taubenfeld, co-founder and executive director of Itineris. “Not that your work defines you, but work is important to everyone. Whether it’s volunteer or paid. To have a meaningful day — whatever that means for them.”
The folks at Itineris work hard to find the right matches for their clients on the spectrum. Sometimes, it’s easier for people lower-functioning than Tom — they might thrive on the repetition of a scanning job and not have the verbal abilities that are a blessing for Tom but can also get him in trouble at work. Because each person Itineris serves has unique needs and capabilities, it can take a while to discover the best fit.
For the past three years, Tom has held a steady janitorial job, but it’s only a couple hours a week and he’s accompanied by an Itineris staffer who prompts him to stay on task, emptying trash cans and wiping down tables. “It’s a run-of-the-mill cleaning job,” Tom says. “But my boss is awesome,” and he appreciates the $10 an hour he gets paid.
If you ask his family, they’ll say the ideal position for Tom would be something not too fast-paced, where he is around people but doesn’t work with them too closely, and has a buddy who can help him stay focused. And gigs like that, they know, aren’t so easy to come by.
But Tom says he’s already found his dream job. A couple of times a month he works as an autism advocate, talking about what it’s like to be on the spectrum. “I’ve been doing it for about two years now, and I’ve loved every single training that I’ve ever done,” says Tom, who has the colored puzzle pieces that have come to symbolize autism tattooed on his inner forearm. “I’m talking to people who actually get it and are listening to me.”
In his speeches, he explains that people often ask, “Why do you act this way?” “I think differently,” he tells them. “I think outside the box. I think it’s because I have kind of a unique outlook on life.”
The speaking job gives him pride and purpose, and money to spend when he meets his girlfriend, who is also on the spectrum, at the mall. “I’m very sociable,” he says. “I love hanging out with people. Whenever we get together it’s the highlight of my day.”
Lately, Ed and Sue Whalen have grappled with a new worry: What will happen to Tom when they’re gone? Itineris is working to create a residential program, and they’re hoping he will eventually be able to live there. But they’re still praying he finds steady work.
“Rather than having to count on a program, it would seem he’d be better off if he had a job that he could go to,” Ed says. “A reason to get up, go out. Do something. Make a little bit of money.”
“He’s got to be productive,” Sue adds. “He’s able to do stuff. He’s able. We just have to find a place that’s good for him.”
This Life is an occasional series about the extraordinary lives of ordinary people. If you know of someone we might want to write about, email firstname.lastname@example.org.