How autism complicates the path to employment.

The Tricky Path to Employment Is Trickier When You’re Autistic

The Tricky Path to Employment Is Trickier When You’re Autistic

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Sept. 22 2017 5:50 AM

The Tricky Path to Employment Is Trickier When You’re Autistic

Autistic children grow up to be autistic adults. Our society doesn’t give them the support they need.

Natalie Matthews-Ramo.

Natalie Matthews-Ramo

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Leigh epitomizes the underemployed. The 39-year-old has a master’s degree in library science from a top-ranked school, years of experience working the circulation desk in a Boston library, and an IQ of 145. He is reliable and considerate, and he works hard.

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Yet for the past eight years, since he lost his salaried Boston library job due to austerity measures, the only permanent job Leigh has landed is at the T.J. Maxx near his mother’s home on Cape Cod. He works part time dusting, vacuuming, and washing the mirrors, and he is paid the minimum wage, $11 an hour. Over the past few years, Leigh has applied for dozens of library positions. Every one has turned him down, most without an interview.

What’s held him back? The library business is contracting, not expanding, and full-time employment is hard to come by, of course. But Leigh, who asked that his last name not be used to protect his family’s privacy, faces an additional hurdle: He has a mild form of autism, a condition that used to be labeled “pervasive developmental disorder not otherwise specified” and is distinct from both autism and Asperger’s.

Autistic adults may very well be the most disadvantaged disability group in the American workplace. Only 14 percent of adults with autism held paid jobs in their communities, according to one May report from Drexel University’s Autism Institute (the report looked just at those who had received state developmental disabilities services). Yet a pathetic 2 percent of all autism research funding goes to understanding adulthood and aging, according to a 2017 report from the Interagency Autism Coordinating Committee, based on 2015 numbers. While most research is focused on figuring out how to prevent or treat autism disorders when they are first diagnosed at young ages, we also have to remember that this work has not yet materialized as a solution for the more than 3.5 million Americans living with autism. “It’s only in the last 10 to 15 years that there’s been growing recognition of the fact that children grow up to be adults,” says Susan Daniels, executive secretary of the Interagency Autism Coordinating Committee. As Leigh’s story demonstrates, autistic adults have their own needs—needs that we as a society are just figuring out how to fill.

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For Leigh, autism has complicated the job search on a number of fronts: He takes most everything literally, so when a job listing requires only a bachelor’s degree, he neglects to mention his master’s degree on his résumé. He lacks the networking skills and friend base that could provide personal connections and social introductions to potential employers. And in interviews, he invariably presents as quirky, which can be off-putting for those less familiar with folks “on the spectrum.” When asked last year during one library interview how well he would do managing a small team of volunteers, Leigh replied, “Not very well. I can be tyrannical.” He did not get the job.

“I’m at a precipice,” Leigh says. “I’m so high-functioning that I don’t really register as disabled, but I’m not high-functioning enough that I can easily utilize anything social.”

When Leigh was 2 years old, his mother, Carole, noticed that her son behaved differently. He didn’t make eye contact or talk (a delay the family pediatrician implied was the mother’s fault, instructing her “to repeat until he gets it”).

Leigh clearly absorbed information and communicated in his own way, however. Carole recalls one day when Leigh, a toddler, climbed into the cabinet and started banging pots and pans. Over and over again, she cried at her son to quit the banging and put the pots down. “It was like I wasn’t there,” she says. Desperate, she finally wrote “stop” on a piece of paper and held it in front of Leigh’s face. He immediately paused. “It’s like the channels are different,” she said. “We weren’t always sure he heard or understood us.”

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Leigh was teased sometimes during his years in the Nauset public schools on Cape Cod, where he took mostly honors classes and had a small group of friends—his “Faction,” he called them—who looked out for him. I was Leigh’s classmate during middle and high school and took many of those honors classes with him. I mostly remember his love for the Moody Blues’ music, as well as the rapport he developed with a few select teachers and classmates, and how grounded it was in a mutual respect for heart and mind (more grounded, I would argue, than the vast majority of teenage friendships). Leigh would regularly rise and salute our English teacher; he engaged in intellectual banter with our biology and chemistry teacher; he routinely addresses people using terms like “me lady,” “fare thee well,” or with a salute and bow. The Moody Blues (of course) quote he chose for his senior class yearbook: “Why do we never get an answer when we’re knocking at the door.”

“He had an utter respect for the people who were his friends or were kind to him, and it came out in his behaving like a knight,” recalls Amanda Sevak, one of his longtime friends and a member of his Faction.

Leigh still tries to come to the rescue: One day a few years ago, Sevak reached out to Leigh with an urgent question. She was chaperoning a field trip for her twin grade-school daughters’ class, and an autistic classmate was having a meltdown. He had cut himself but refused to wear a bandage.

Leigh calmly explained that they should tell the boy that the “strange sensation of the adhesive” would be preferable to the pain of getting an infection from air exposure. Sevak quickly relayed the message to the child. It connected with the child in a way that other pleas had not.

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Although Leigh strikes most strangers as very serious, those who know him well often glimpse his humorous side. His mother recalls one time when he brought a video to his special education class featuring Victor Borge, a comedian and musician who pronounces different phonetic sounds when reading punctuation marks. It was one of his favorite clips, yet the screening still made Leigh laugh so uproariously he fell off his chair. And when the senior class decided to pelt water balloons at one another to celebrate graduation, everyone assumed Leigh would take a pass. Instead he showed up with a tin man–style container filled with water and gleefully sprayed his classmates.

When he graduated from high school, Leigh knew he wanted to pursue a career. And I don’t think anyone who knew him in high school would have questioned his capacity to succeed in a profession, at least one that didn’t require great social ease and self-possession: He had thrived in classes that were intellectually challenging and managed to find a kind of niche. He attended Massachusetts College of Pharmacy and Health Sciences for two years before questioning whether he could handle the patient counseling required of pharmacists. “Given my troubles with socialization, I was a bit leery,” he said.

So he switched to the library track, earning a master’s degree in library science from Simmons College. Over 12 years, he worked his way up from volunteer to full-time employee at a Boston public library branch, where he discovered that he was capable of interacting with patrons while manning the circulation desk. He lived by himself and enjoyed the independence and solitude. Unlike the more rural Cape Cod, Boston was a good city for him since he could easily navigate on foot and public transportation (he does not drive).

In 2010, Leigh’s quiet life was upended when he lost his job due to austerity measures across the city’s library system. Within a year, he moved back home to the Cape to live with his mother and look for work from there (his father died in late 2008).

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The job search was unending. At first, Leigh sought out only library jobs. He estimates that he submitted resumes for 20 to 30 open positions scattered across New England—to no avail.

When he asked for advice, he sometimes ran up against job stereotyping, Leigh says. People suggest computer coding to him all the time, since many people with mild autism are detail-oriented and adept at solitary work (a new startup called Coding Autism aims to train people on the spectrum for technology jobs). “People look at my autism and assume I like coding,” Leigh says, adding an exuberant, “Not here!”

Instead, Leigh has two great passions: books and birds. He craves a job that is intellectually engaging and relates to at least one of those areas. Yet most of the jobs available for those with disabilities on the Cape are more menial in nature, like his T.J. Maxx position. “There are jobs for more severely disabled people” but not ones set aside for people with more modest challenges, Leigh says. “People with mild disabilities like my own don’t register on anyone’s radar.”

In addition to the T.J. Maxx job, Leigh eventually began volunteering at a Cape library and for an organization called Wild Care, where he feeds baby birds. He broadened his search from library work to any clerical position. He also met with a counselor through a state-sponsored vocational rehabilitation program, but for years his job search produced few interviews—and no jobs.

In early 2016, however, Leigh’s job search seemed to turn a corner when he connected with Cape Abilities, a local organization that provides a range of support and job placement services for people with disabilities. Leigh’s first counselor there, Peggy Boskey, was determined to find him a job that made better use of his mind. They began corresponding regularly and meeting every other week, working on résumés, interview strategies, and more. Given Leigh’s extensive education and experience, as well as his formidable intellect, Boskey assumed it would only take a few months to find him something more stimulating than janitorial work.

* * *

Employment rates for autistic adults are abysmal in both absolute and relative terms—they’re lower than those for just about any other disability type studied. Drexel’s Autism Institute found that 58 percent of young adults on the spectrum worked at some point in the years after high school, compared with 74 percent of those with an intellectual disability and 91 percent of those with an emotional disturbance. “People with autism tend to flounder more,” said Anne Roux, a research scientist at the Autism Institute who worked on the study.

Some employers and social service agencies have started trying to make inroads on the problem. A couple major businesses like Microsoft and PetSmart have prioritized hiring and supporting autistic employees. Microsoft, for instance, did away with its traditional interview process for applicants on the spectrum, instead inviting them to come and spend several days on site so they could be observed while working on projects.

And in many places, including Leigh’s home state of Massachusetts, adults with autism qualify for more state-sponsored job training and support than they did just a few years ago. A 2014 state law expanded the number of people on the spectrum who are eligible for help from the state’s Department of Developmental Services for services like job coaching (previously it was more difficult for those with IQs above 70 to qualify). More than 1,300 people have been newly deemed eligible for services as a result of this change.

Among the lessons learned: The autistic population is unfathomably diverse, in terms of skills, interests, and aptitudes. That means there is no easy, one-size-fits-all accommodation that employers can make and no single occupation that could be targeted as a solution for people on the spectrum. Some have severe cognitive or intellectual impairments; others, like Leigh, have sky-high IQs. Some possess little to no verbal skills; others can communicate with much greater fluency. Some are more socially aggressive than the average person; others are more withdrawn.

“The abilities of people with autism are just as diverse—maybe even more diverse than other people,” said Denise Resnik, a founder of the Southwest Autism Research & Resource Center who has a 26-year-old son with autism. That means the outreach to potential employers needs to be both broader (encompassing a larger range of job types) and more concrete (making clearer the potential needs and accommodations of autistic workers). It isn’t enough to create thousands of new positions for computer coders with autism spectrum disorders because thousands of others, including Leigh, won’t go that route. Technology jobs might be higher level and better paid, but Leigh says he can’t wrap his head around HTML and doesn’t enjoy coding-related work.

Resnik, as well as some employers, agree that once an autistic worker lands a suitable job, he or she usually excels. “I’ve heard over and over that they tend to be the first to arrive, the last to leave, the hardest workers, and people who bring out the best in their co-workers,” said Resnik. For people on the spectrum, work tends to be the main priority in their lives, rather than competing against social and other interests, Resnik added.

That said, part of the employer outreach component is educating potential bosses about unique needs of employees with autism. Phil Francis, the former CEO of PetSmart, said he’s found it more challenging, on average, for workers on the spectrum to follow multistep, complicated instructions; he tells their supervisors to break it down or assign more discrete tasks. “They are different in some respects, but many of the differences are highly positive,” he says.

The biggest hurdle in many instances seems to be helping them get to the point of being employees. That might require changing interview processes, where autistic individuals typically flounder—perhaps by allowing a counselor to sit in, ensuring that someone familiar with autism conducts the interview, or adopting Microsoft’s “interview-less” approach. Julie Urda, another of Leigh’s counselors at Cape Abilities, says people on the spectrum typically “don’t get nuance or body language or social convention,” yet interviewers often rigidly assess them on those traits.

Workers who are autistic often require at least some minimal level of ongoing job support, a person who can serve as intermediary if conflicts or confusion arise over their role or conduct. Leigh’s mother, Carole, says she feels like people with autism would benefit tremendously from job coaches who they can check in with, even if only for five minutes on the phone each week. “Someone who is readily available and can step in before misunderstandings get too big,” she says, noting that people with the disorder often struggle to “read” other people, as much as they may want to.

Leigh had volunteered as a docent at one wildlife organization but stopped because he struggled to know when to approach people and when to hang back. Yet he possesses his own form of empathy, and genuinely wants other people to feel at ease around him. Said his mother: “He’s very uncomfortable about making other people uncomfortable.”

* * *

Despite the increased awareness, the problem, as always, is how to scale up solutions in a country where the national conversation surrounding autism is so focused on young children and where we know so little about what drives macrolevel trends and outcomes for autistic adults. Our knowledge is patchy and anecdotal rather than systemic and informed by data. That’s partly because it’s “less sexy and more difficult” to study adulthood than to do research on “brains and genes”—the two topics that receive the lion’s share of the funding, said Roux. There’s a lot hype around prevention and finding a “cure” and very little around helping adults thrive.

“The consequence is a stagnation to the quality of life of people who are already with us … it’s hard to improve outcomes because we don’t know enough,” said Roux. Daniels from the Interagency Autism Coordinating Committee says she envisions this changing in the coming years, as the National Institutes of Health and other groups have started new programs that fund projects aimed at helping adolescents transition to adulthood or support adults on the spectrum with independent living.

Better and more widespread research could help us pinpoint the unique needs of autistic adults; the most effective ways of supporting them in finding, and keeping, jobs; and the states that are doing the best at providing services. We don’t even know exactly how many adults on the spectrum live in the United States, said Roux.

We also don’t know how severity of the disorder impacts employment prospects. Anecdotal evidence suggests that the highest-functioning people on the spectrum can be particularly hard to place in jobs since they can, and want to, do more ambitious work than the menial roles so often assigned disabled workers in the American economy. Yet routine interactions rarely come easily, even for the most verbal of them.

It didn’t turn out to be as easy as Peggy Boskey had hoped last year to find Leigh a better job. On the tourism-dominated Cape, service industry jobs abound, but entry-level office positions are more elusive. And those that exist often have dozens of qualified applicants. Leigh came close to close to landing one library job but struggled with the interview. “If they have three people who are qualified, they are going to go with the one they feel most comfortable with,” Boskey said. Leigh wants more engaging work but also needs it. He is trying to complete the paperwork to qualify for disability payments, which he currently does not receive. His mother would like him to be as financially secure as possible, particularly when she dies. Leigh has no siblings or other close relatives to fill the void that she will someday leave. “I’m trying to set things up as best I can for him,” she says.

She says she finds it encouraging how many more life and career options people with disabilities have than they did a generation or two ago. “We’ve greatly expanded our definition of who can take part in humanity,” she says. But there’s still a huge distance to go.

In January, Leigh finally got a break when the Barnstable Housing Authority hired him for a temporary, part-time position doing general office work, including preparing spreadsheets and retrieving mailings. He dropped some of his hours at T.J. Maxx but continued the two volunteer positions in an effort to keep his options open. It wasn’t clear whether the housing authority job would continue past the summer.

His counselor Urda noted that the housing authority representative who interviewed and hired Leigh has autistic relatives, which made her more aware and accommodating throughout the process. That personal connection is not something people with autism—and in need of jobs—can usually count on.

Last month, Leigh learned that his job at the housing authority would conclude at the end of August, putting him back at square one.

Leigh’s mother says that in spite of the long search, and its many disappointments, her son has never complained about his limited professional options.

As a society, though, we should be concerned. Leigh’s story has many lessons. But, for me, two stand out: First, too little attention has been paid to the employment needs of those with mild disabilities, as a disproportionate share of the assistance, support, and set-asides (understandably) target those with the most severe needs. We shouldn’t stop supporting employees with the most intense challenges, but we need to be much more willing to make accommodations and develop new programs for less disabled workers like Leigh, rather than expecting them to seamlessly “blend in” or relegating them to narrow career tracks.

Beyond that, change requires not only greater awareness but concrete alterations to the hiring and employee-support processes. More employers need to figure out a way to understand the skills of people with autism. Microsoft’s model, developing a distinct interview process for applicants on the spectrum, is a good start. As the numbers of Americans with autism spectrum disorders continues to rise, it’s not just a matter of social justice but of national economic health. And, in Leigh’s case, we’re failing to make use of a unique and elegant mind that continues, more than 20 years later, to enrich the few people who have gotten to know him well, a mind that has much to offer the lives—and, hopefully, workplaces—of most anyone who gives him a chance.

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