Autism, All Grown Up
Tuesday, February 03, 2015
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There are several programs designed for young autistic people that are designed to support them while their growing up. But what happens after? What happens when someone on the spectrum leaves home to go to college or get a job?
Those some of the difficult questions Ondine Grosser and her family had to answer when she graduated high school.
Ondine is autistic and she was able to access services that helped her succeed in high school, where she got consistently high grades. But when she graduated and those services disappeared, navigating life became a lot more complicated. After just one semester of college, Ondine flunked out and withdrew.
Jennifer Richler is a science writer and clinical psychologist. She recently wrote about Ondine’s story and some of the new services emerging for young adults with autism.
Ondine and her mother, Amira Acre, also join The Takeaway. They discuss Ondine’s current success after enrolling with a rare program called, ASPIRE, where Ondine receives tailored support that helps high-functioning adults with autism better navigate the job market and the world around them.
Easing into Adulthood
- Many people with autism struggle with the transition from high school to independent adulthood. Public support systems are often not available for those without intellectual disabilities.
- Private programs such as Boston-based Aspire are filling the gap, supporting adults with autism as they enter college or the workforce.
- These programs allow adults on the spectrum to socialize with peers while they practice social skills, learn to be more self-aware and develop techniques for managing stress.
Clinicians, researchers and educators have recognized the problem, and in the past few years programs have sprung up around the country to serve this neglected group. Ondine is currently enrolled in an internship program at one of the most well-established of these programs—Aspire, based at Massachusetts General Hospital (MGH)—and she now works part-time and enjoys socializing with her co-workers. “For her to be getting out, talking to people, taking public transit … is such a huge transition,” Amira says. As the prevalence of autism continues to rise and more and more people with the diagnosis enter adulthood, Aspire and other programs like it hope to ease that transition, bridging the gap as autism grows up.
Smart and Struggling
The autism spectrum covers a wide range of symptoms, but everyone with the diagnosis has one thing in common: difficulty with social interaction. For the young adults served by programs such as Aspire, this deficit manifests in a variety of ways. They may have trouble identifying other people’s emotions, discerning appropriate conversation topics and public behavior, and recognizing or understanding their own feelings and needs.
These impediments often make it tough for adults on the spectrum to get jobs and keep them. A study published in 2012 found that only 55 percent of adults with autism had held any kind of paid employment in the six years since graduating from high school. Adults with other kinds of difficulties, including speech or language disorders, learning disabilities and even intellectual disability, had much higher rates of employment, suggesting that the low rates among adults with autism cannot be explained solely by the fact that they have a disabling disorder. The researchers concluded that young adults with autism are “uniquely at high risk for a period of struggling to find ways to participate in work and school after leaving high school.”
According to Paul Shattuck, now a psychology professor at Drexel University and lead author on the study, this situation exists partly because support services were set up around the needs of people with intellectual deficits and have not evolved much over time. “If you have an IQ [in the average range] and you’re quirky and have difficulty with social interactions, it’s very hard to get help,” he says. This description fits many of the adults whom Aspire serves. Although the label “Asperger’s syndrome” is no longer included in the DSM-5, psychiatry’s manual of mental disorders, many of Aspire’s clients have this label or identify as such; others say that they have “high-functioning autism” or “PDD,” which refers to pervasive developmental disorder, another term that is no longer in the DSM but connotes a relatively high level of ability.
Even when these adults can find work, it is often on a volunteer or part-time basis. A different study found that only 27 of the 48 young adults in their sample had ever been employed in the years since high school, and of those only one was able to support himself.
Enter Aspire and other programs like it. Aspire launched about 12 years ago, when it split off from YouthCare, a larger program that serves children with a range of mental health issues. Aspire’s executive director Scott McLeod, a clinical psychologist, explains that rates of autism diagnosis had soared, and YouthCare was inundated with children on the spectrum. The directors decided that they needed a program focused exclusively on autism.
Ultimately, says program director Dot Lucci, a school psychologist, the goal is to address what Aspire staff call the three Ss: self-awareness, social competency and stress management. Many of the people in Aspire’s programs are very bright, she says, “but if you’re not self-aware and socially competent and if you’re unable to handle your stress, all your smarts in the world are not going to help you. You’re not going to be able to get a job, keep a job or be in a relationship.”
People Who Need People
A fair-skinned, dark-haired 19-year-old named Matt stands in the center of a circle, surrounded by his peers, who are seated in folding chairs. “I need to make some money quick. What should I do?” he asks.
“Steal all the gold from Fort Knox … or rob a bank in Paris!” Dan exclaims.
“Work 24-hour shifts for the rest of your life,” Nick suggests.
“Sell your arms and legs,” Jae offers. He gets big laughs.
These young adults with autism are playing an improvisation game called Bad Advice. The person at the center of the circle presents a problem to be solved, and everyone else tries to come up with the worst possible suggestion. Aside from being a fun icebreaker, the game orients the group to the concept of social “dos and don’ts”; thinking about how not to behave in social situations implicitly reminds everyone how they should behave.
So begins another session of Aspire’s Saturday Excursions group. For most clients, the gatherings provide a sorely needed social outlet. Although people with autism are often thought of as aloof and uninterested in socializing, for many the opposite is true. A University of Missouri study of adults with autism published last April revealed that many suffer from loneliness and isolation, which often lead to depression and anxiety. The loneliness may be acute: a national study of teens with autism published in 2011 found that more than half had not gotten together with a friend in the previous year. And when another set of researchers asked parents of adults with autism about their children’s unmet needs, they cited social interaction as a major area. Adults on the spectrum crave social interaction but do not know how to get it.
The excursions group gives these young adults the chance not only to enjoy one another’s company but to practice skills they find difficult, including what people in the field call “activities of daily living”—tasks such as organizing an outing and managing time and money. After the improv game and before the group heads out into the windy early spring afternoon, Aspire staff members remind everyone that this week they will be seeing a movie downtown. They review the schedule for the day, check the subway route to the movie theater, and distribute wallets with preloaded debit cards and subway cards. On the way to and from the theater, there is plenty of time to practice another essential skill: conversation. Dan, a young man with closely cropped hair and sunglasses, asks for everyone’s birthday so he can read out their horoscopes from an app on his smartphone.
Today’s outing goes smoothly, and afterward everyone gathers to discuss the “highs and lows” of the trip. (The consensus: seeing The Lego Movie was a high; walking against the wind was a low.) But there are occasional mishaps. On a trip to the Navy Yard with a different group, one of the members, tired from walking around, lay down to rest on a bed onboard a ship. These sticky situations are opportunities to discuss appropriate social behavior—for example, sometimes it is necessary to act differently in public than in private.
Aspire conducts most of its interventions in a group setting, rather than working individually with clients. “Working one-to-one with thoughtful, caring adults—those aren’t challenging situations,” McLeod observes. “We think that the group is a far more powerful place to learn skills.” At the same time, the groups feel safer and more predictable than other social situations, he adds, so clients become less anxious, allowing them to practice skills they otherwise would not. “The reason a social skill may not be exhibited is usually far more complicated than the fact that they just don’t have the skill,” he says. Often other issues—anxiety, difficulty taking others’ perspectives or simply not understanding the purpose of a certain social behavior—get in the way. That is why Aspire avoids simply drilling skills into its clients, an approach that, according to McLeod, “has failed pretty miserably.”
Studies on how to best help adults with autism learn and practice social skills are few and far between, so Aspire’s programs draw from a number of evidence-based approaches in psychology. Advisers emphasize clients’ strengths while giving positive and negative feedback, a technique based on principles from the field of positive psychology. They encourage clients to think about the thoughts and feelings underlying others’ behavior as well as their own, a central tenet of cognitive-behavior therapy. “The premise is, you can learn social skills like turn taking, but if you have no idea why you’re doing them, it’s a veneer. If you get in an unfamiliar situation, it falls apart,” Lucci explains. “It’s about why we do what we do.”
On the Job
Alex sits at a conference table next to his supervisor, Kevin Heffernan. He is nearing the end of his 14-week internship in the Corporate Real Estate division of Liberty Mutual, a position he got through Aspire’s internship program, which places young adults with autism at sites around Boston and provides them with mentorship and support. Alex is thrilled with his experience. “It’s given me a reason to wake up,” he says. It has also taught him essential job skills, including how to make pivot tables in Excel, an accomplishment in which he takes considerable pride, judging from the shy smile that spreads across his face when he mentions it.
Heffernan says that once Alex finishes his internship, he can apply for positions at the company and has a good shot of getting one. “The sky’s the limit for this kid,” he says, beaming. It is not just Alex’s work skills that have impressed him—it is also the way he interacts with his colleagues. Before Alex started, Heffernan was warned that he was shy and anxious in social situations. “My radar was on,” Heffernan admits. But with time, Alex became comfortable with his co-workers. “He’s fitting in just fine, thank you,” Heffernan says.
The research on job-training programs for people with autism, though preliminary, suggests it should be possible to help more adults on the spectrum succeed as Alex has. For example, in a clinical trial of the Project SEARCH High School Transition Program, which serves adults with autism at dozens of sites across the U.S., participants completed a nine-month internship program embedded in a large community business, such as a hospital, rotating through different jobs and learning practical skills, such as using public transportation to get to work. They also received individualized support from autism specialists. The control group received standard services provided by the school district. The results were encouraging: of the 24 adults who had an internship, 21 acquired employment after the program, compared with only one of 16 in the control group, and the difference was sustained three months later. Perhaps even more important, those in internships gained independence over time—that is, they required fewer supports—which was not true of those in the control group.
Many other programs for adults with autism around the country also focus on employment or continuing education. For example, the College Internship Program, with sites in Indiana, California, Massachusetts and New York, is geared to college students on the autism spectrum who do not have an intellectual disability. It provides mentorship, group social activities and internship opportunities. Aspire also offers services for the college-bound, including a “boot camp” the summer before freshman year, in which students develop practical skills for life on campus. Once at college, they can enroll in Aspire’s mentoring program, in which they are paired with a typically developing student on campus, who helps them get acquainted with key services and resources and provides them with ongoing support.
For those who do have an intellectual disability, programs such as Next Steps at Vanderbilt University allow students to take classes alongside peers, learn vocational and social skills, and earn a certificate after two years. Project SEARCH also serves adults with significant intellectual or developmental disabilities. Given the enormous variability in functioning among those with autism, this specialization makes sense: it is hard to help everyone on the spectrum when there is so much heterogeneity within it. Specializing also helps programs secure funding—most are underwritten by private philanthropic donations, which allow them to offer financial aid to clients’ families. McLeod reports that nobody has ever been turned away from Aspire because of an inability to pay.
All these programs not only help adults with autism get jobs, they also support them so that they succeed at those jobs—which often requires navigating delicate situations. One of Aspire’s interns became distressed, for example, after meeting a co-worker of a different ethnicity, loudly telling her supervisor that she could not work with that person because she had once had a negative experience with someone of that ethnicity.
These situations can be uncomfortable, but McLeod sees them as opportunities for adults with autism to learn in real time and in real life, where it matters most. In fact, “bringing interventions into the life space,” as he puts it, is key to Aspire’s approach. “One of the main challenges for folks on the spectrum is the transfer and generalization of skills,” he says. A concept such as taking another’s perspective can make sense in the therapist’s office, he explains, but can be incredibly challenging to implement in daily life.
Ondine sits in a small group of young men and women at a table in a meeting room, waiting for the weekly internship seminar to begin. She chats with a brunette with an easy smile named Nicole as others busily check their smartphones. A bulletin board on the wall has a sign that reads, “I Aspire To …” with construction paper stars affixed to it, on which clients have written goals that range from the fantastic to the mundane: “Be a Nascar driver”; “Show up to work 5 minutes before the scheduled time”; “Ask others about their interests.” Bretton Mulder, a clinical psychologist and director of Aspire’s teen and young adult services, starts today’s session by asking the interns how things have been going in their first couple of weeks on the job. Ondine laments that it took her two hours to get her security badge at MGH, where she is working in materials management. Others mention traffic troubles and connecting with co-workers over music. After checking in with everyone, Mulder leads the group in a discussion of how to distinguish between on- and off-topic comments when in a meeting and why it is important to avoid judging co-workers based on features such as appearance and level of education.
During the discussion, Nicole occasionally interrupts her peers but immediately catches herself. She clamps one hand over her mouth and gently waves the other in the speaker’s direction, as if to say, “Oops … go on.” The self-awareness Nicole is demonstrating is often challenging for those with autism, McLeod says. “What goes along with the perspective-taking deficit of autism is that sometimes it’s hard to know who you are,” he explains. To help uncover their identities, adults at Aspire and in other programs are encouraged to reflect on their strengths, weaknesses, thoughts and feelings. This process often leads them to important realizations: “I’m a bright person who’s overreactive to certain sensory stimulation,” McLeod gives as an example. Aspire’s clients are encouraged to share these relevant aspects of their personalities with people they meet or work with; doing so usually allows them to be accepted and understood more quickly.
If self-awareness is the mental foundation and applied social skills are the practical component, the often overlooked but crucial third factor in helping adults on the spectrum succeed is stress management. Many programs, including Aspire, help their clients learn techniques such as mindfulness and yoga. So far the preliminary data indicate that with these three pillars of support, many adults with autism can join the workforce and eventually leave behind the programs that helped them get there. Autism’s prevalence continues to increase, however; according to 2010 estimates from the Centers for Disease Control and Prevention, one in 68 children has autism, up 30 percent from figures reported in 2008. Recent research suggests that a major reason for this surge is more frequent diagnosis of precisely the people Aspire serves—those who are more cognitively able.
Although Aspire does not yet have outcome measures, survey data suggest clients and their families are highly satisfied. For some, such as Ondine, the programs have been a kind of life raft. Her internship at MGH might not be her dream job —“anyone can do it,” she tells her peers matter-of-factly during the internship seminar—but she sees it as a major step toward her long-term goal of being a paramedic. Perhaps more important, Amira says the program staff make her daughter feel “respected and admired for who she is. These people see all the possibilities and potential she has.”
As a result, Ondine’s outlook has changed dramatically. “It used to be that she said she has no future,” her mother says. “Now she’s talking about a future.”