Adults with autism are left to navigate a jarring world

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“I don’t look like I have a disability, do I?” Jonas Moore asks me. I shake my head. No, I say — he does not. Bundled up in a puffy green coat in a drafty Starbucks, Moore, 35 and sandy-haired, doesn’t stand out in the crowd seeking refuge from the Wisconsin cold. His handshake is firm and his blue eyes meet mine as we talk. He comes across as intelligent and thoughtful, if perhaps a bit reserved. His disability — autism — is invisible.

That’s part of the problem, says Moore. Like most people with autism spectrum disorders, he finds relationships challenging. In the past, he has been quick to anger and has had what he calls “meltdowns.” Those who don’t know he has autism can easily misinterpret his actions. “People think that when I do misbehave I’m somehow intentionally trying to be a jerk,” Moore says. “That’s just not the case.”

His difficulty managing emotions has gotten him into some trouble, and he’s had a hard time holding onto jobs — an outcome he might have avoided, he says, if his coworkers and bosses had better understood his intentions.

Over time, things have gotten better. Moore has held the same job for five years, vacuuming commercial buildings on a night cleaning crew. He attributes his success to getting the right amount of medication and therapy, to time maturing him and to the fact that he now works mostly alone.

Moore is fortunate. His parents help support him financially. He has access to good mental health care. And with the help of the state’s division of vocational rehabilitation, he has found a job that suits him. Many adults with autism are not so lucky.

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Scientists are beginning to take note, but their understanding of how best to help adults with autism is paper thin. Of the more than $400 million that the United States spends each year on autism research, the vast majority is for two avenues of study: genetics research to find the causes and a cure, and studies on early diagnosis and intervention in children. Few studies have examined treatments for adults.

Accepted approaches for treating children with autism range from brief interventions for addressing specific challenges like recognizing facial expressions to comprehensive behavioral training programs that involve parents, teachers and peers.

“When you look at early intervention for autism, there are lots of different models, and we have a pretty good sense of evidence-based practices for young children with autism,” says Leann Smith, a developmental psychologist at the University of Wisconsin–Madison, whose research focuses on adolescents and adults  with autism plus their families. “There isn’t anything analogous to that for adults,” she says.

Activists like Temple Grandin and others are making the case that adults with autism bring important qualities to society. And in the last few years, public and private agencies that fund autism research have begun funding a growing cadre of researchers to develop and test therapies for adults with autism — particularly high-functioning adults. 

“I really do expect to see huge changes in terms of what we know about how to support adolescents and adults with autism over the next 10 years or so,” says Julie Lounds Taylor, a Vanderbilt University developmental psychologist who studies the transition to adulthood for people with autism. “I would not have said that two years ago.”

Finding their place

The term “autism spectrum disorder” includes a suite of neurological conditions that range in severity and include impairments in communication and social interaction, difficulty with regulation of emotions and repetitive or obsessive behaviors and interests. About half of children diagnosed with an autism spectrum disorder are “high functioning” like Moore, meaning they have average or above-average intelligence. No drugs have been approved to treat the core symptoms of autism in children or adults, though many people with autism take medications for conditions that can occur alongside autism, such as depression, anxiety and irritability.

There are no reliable estimates of the number of adults with autism. But the prevalence of children diagnosed with autism has spiked in the last two decades. In 2000, the U.S. Centers for Disease Control and Prevention estimated that 1 in 150 children had an autism spectrum disorder. The agency’s 2014 estimate is a startling 1 in 68. The reasons for the increase aren’t fully understood, but researchers believe it is partly due to improved detection.

Those children will eventually reach adulthood and will still need support services as they try to find their place in the world.

One might expect that people with autism who are most high functioning would fare best in the adult world. But paradoxically, those without an intellectual disability are most likely to falter at the precipice of adulthood, partly because they often lose support services after age 21 and partly because social difficulties may frustrate college and career ambitions. (In some states, only more severely disabled people are eligible for assistance, such as Medicaid-funded services.)

Into the abyss

Spend time talking with autism researchers or with families of adolescents or adults with autism, and it doesn’t take long for the phrase “falling off a cliff” to come up. The new environments, people and expectations for independence that come with entry into adulthood can be tricky for any young person. For someone with impaired abilities to communicate and manage relationships, solve problems flexibly and regulate emotions, this period can be harrowing. And the end of adolescence means the end of federally mandated special education services — just when the need for support may be greatest.

In a study of 242 teens transitioning to adulthood, Taylor and Marsha Mailick at Wisconsin–Madison found that young people’s autism symptoms and behaviors such as repetitive habits, withdrawal and self-harm often improved during adolescence. But progress typically slowed markedly, or even stopped, after students left high school.

Paul Shattuck directs the Life Course Outcomes program at Drexel University’s Autism Institute in Philadelphia. He has spent much of the last five years dissecting data from a nationally representative survey of adults who received special education services during high school, including students with autism.

Shattuck’s results are bleak. Within just a few years of leaving high school, almost 40 percent of the young adults in his sample were receiving no medical, mental health, case management or speech or language services, he and colleagues reported in JAMA Pediatrics in 2011.

In a separate study published in 2012 in Pediatrics, Shattuck’s team found that more than half of young adults with autism were “completely disengaged” from any employment or post-secondary education in the two years after leaving high school. Young adults with learning disabilities, intellectual disabilities or speech or language impairment were much more likely to have some engagement with work or school after high school.

Poor employment outcomes are especially dismaying because good employment may make a world of difference for autistic adults’ personal development. In a 2014 study, Taylor, Smith and Mailick found that the more independence adults had at work, the more improvement they showed over the next five years in social interactions, communication skills, repetitive behaviors, self-harm, socially offensive behavior and activities such as housekeeping and making meals.

Those results, published in the Journal of Autism and Developmental Disorders, shouldn’t be surprising, Taylor says. “We see that in typically developing people all the time. If you’re in a job that’s a good fit for you or where the expectations are high, oftentimes you rise to that. Why wouldn’t we expect the same thing for somebody with autism?” The findings, she says, suggest that “we don’t have to go in and ‘fix’ everything for somebody with autism before we put them in some sort of job setting.”

It may seem obvious that as children with autism mature, most will continue to need support and services. But the body of research on best practices for supporting adults is flimsy.

In 2013, a review published in the Journal of Autism and Developmental Disorders of 1,217 studies, conducted from 1950 to 2011, found only 13 that assessed interventions (all psychologically based) for adults with autism. The review, by researchers at the University of Pittsburgh, found that most research followed single cases or involved very few participants. Only four of the studies randomly assigned adults to treatment versus control groups.

One of the few randomized controlled trials that the review included was a study published in 2012 in the same journal and led by clinical psychologist Elizabeth Laugeson of UCLA. She enrolled 17 high-functioning young adults diagnosed with autism spectrum disorders in a 14-week course that provided participants with concrete rules of social behavior. Participants also practiced social skills such as entering and leaving conversations, organizing get-togethers, handling teasing and resolving disagreements. Separately, parents and other caregivers received guidance about how to coach their young adults without compromising their independence.

The misconception about people with autism, Laugeson says, is that they’re asocial and perfectly happy being alone. “Most adults with autism will tell you that they want to make friends and have relationships, but they don’t know how. As a result, they often experience tremendous loneliness.” Adults going through her program demonstrate better overall social skills, improved social responsiveness and more social engagement. But perhaps best of all, she says, they no longer feel as lonely and isolated.

Like Laugeson’s program, most of the adult-intervention studies that the Pitt researchers reviewed had positive results. But the small number of studies and wide variability in their methods and in the size of their effects make it difficult to draw conclusions about the effectiveness of any given intervention, says doctoral student Lauren Bishop-Fitzpatrick, the study’s lead author. More than anything, she says, the results of the review highlight the need for rigorously studied behavioral treatments for adults with autism.

The tide does appear to be shifting, in part due to the community of parents who successfully agitated for more funding for autism research in the 1990s. “There’s a second wind coming to this movement,” Shattuck says. Many pioneer activists, their children now grown, “are raising money for research and activating around experimental new approaches to help people have a decent quality of life as adults.”

In the last several years, both the federal government and private organizations have upped their investment in adult intervention research. In September, the National Institute of Mental Health awarded three grants totaling nearly $760,000 to support development and testing of new intervention programs for adults with autism. The research and advocacy organization Autism Speaks has likewise begun investing in research in this area, says Rob Ring, the organization’s chief scientific officer. Of the $2.73 million Autism Speaks has spent on adult-focused research since 2010, only about $650,000 has been for treatment studies. But Ring says investment in such research is bound to rise. “As we become more acutely aware of the tidal wave of individuals who are transitioning into adulthood, we’re becoming very much aware of the needs that are out there for adults,” he says.

Much of the emerging research focuses on helping adults with autism strengthen social communication skills and learn to understand what some autism experts call the hidden curriculum — the unstated rules and customs that govern social behavior, such as “don’t hug your boss at the office” or “don’t ask a coworker how much money she makes.”

Social beings

The ability to function socially, which many people take for granted, is actually very complex, says Edward Brodkin, director of the Adult Autism Spectrum Program at the University of Pennsylvania School of Medicine.

With one of the NIMH grants, Brodkin is developing a training program that he hopes will help adults with autism learn to interact with others more comfortably, form meaningful relationships and navigate the social world in the ways that are necessary for school or job success. In group sessions, participants will learn and practice fundamental skills such as making appropriate eye contact, ending conversations smoothly and gathering information about other people at a distance by reading their body language. 

Brodkin’s program will also place participants in volunteer work teams, something that he believes will not only strengthen new skills and provide concrete work experience, but will also carry an important psychological benefit. “People with disabilities are often in the position of needing and receiving help,” Brodkin says. “There’s something about giving help that we think will be empowering.”

Other experimental treatment programs focus on social skills. In a recent pilot study led by speech-language pathologist Lindee Morgan of Florida State University’s Autism Institute in Tallahassee, 24 high-functioning adults diagnosed with autism spectrum disorders were randomly assigned to participate in a three-month interview-preparation program or be put on a waiting list. The weekly group sessions covered greetings, nonverbal communication, hygiene, emotion management and closing interviews. They included a mix of discussion, role play, video feedback, peer review and games.

Morgan’s team compared participants’ performance on mock job interviews before and after the intervention. Those in the treatment group — but not those in the waiting list control group — showed substantial improvement on outcomes, the researchers reported last September in the Journal of Autism and Developmental Disorders. The mock interviewers noted improvement in numerous facets of participants’ presentations, including their grooming, the smoothness of their greetings and the richness of their responses to questions.

“At the beginning, it was as if a lot of the participants didn’t really understand that in a job interview you’re supposed to sell yourself,” Morgan says. “We taught them to market themselves, and their ability to convey to the potential employer what they would bring to the job really improved.”

Morgan also points out a more intangible benefit. “More than half of high-functioning adults with autism report not having any friends,” she says. “One of the by-products of participating in this class was that these guys really got to know each other and enjoyed each other.”

Social skills are key to getting and keeping a job. But they’re not the only skills that adults with autism often struggle with, notes research psychologist Mary Baker-Ericzén at Rady Children’s Hospital–San Diego and director of the Intricate Mind Institute, which provides therapeutic services for people with neuro-developmental disorders.

In a program she’s developing, participants will practice social skills such as deciphering “hidden” meanings, handling compliments and criticism and reading body language. But her program will also target another common aspect of autism: impairments in what psychologists call “executive functioning.” The term encompasses an array of cognitive and problem-solving skills such as paying attention to and remembering instructions, using organizational tools like to-do lists and calendars, planning and preparing for the future and thinking flexibly enough to generate a “Plan B” when circumstances change.

The intervention is based on research involving people with traumatic brain injuries, dementia and schizophrenia — populations that, like people with autism spectrum disorders, tend to have difficulties with executive functioning. “Our theory is that if we develop these cognitive functioning skills, those are going to be related to functional skills like being able to get up on time or retain what their boss tells them,” Baker-Ericzén says.

The larger community

Few adults with autism forge their way in the world on their own. For most, family members are an important, even daily, source of support. That reality is the cornerstone of a program Leann Smith is testing in Wisconsin. She first became interested in autism during college, when she worked as an in-home therapy provider for a young boy with autism. “It was so amazing and beautiful and powerful to me to see how families can rally and do what needs to be done to provide educational opportunities and interventions for their loved ones,” she says.

But the caregiver role takes a psychological toll. “Although parents work very hard in supporting their children [with autism], it is not an easy road,” Smith says. She is recruiting participants to test an intervention focused on reducing stress for young adults with autism and their families. The hope is that stress reduction will in turn help the young people take on adult roles. Reducing stress and emotional intensity, she says, “has a stabilizing effect, which can help people be more empowered and able to maintain a job.”

Smith’s three-year study will involve 56 families randomly assigned to take part in the intervention immediately or after a six-month wait, thus forming a control group. Smith’s team will meet individually with each person with autism and his or her family members to learn about personal and vocational goals and the challenges they’re encountering. Then families will take part in eight weekly group sessions— adults with autism in one room, family members in another.

Smith’s team will provide practical information, such as where to find local educational and vocational services and how to access them, networking strategies for finding friends and employment, and advice about financial planning and legal guardianship arrangements.

Participants will also rehearse problem solving steps and learn a coping strategy that can help reduce stress for families of adolescents with autism: positively reinterpreting challenges or difficult events as opportunities for growth. “Even if you can’t change the stressor, you can change how you think about it,” Smith says.

Smith’s emphasis on family counters what Shattuck says is the dominant approach to studying autism. Most autism research, he says, “presumes there’s something defective with the person, and if we want the person to have a better outcome, we need to fix the person.” Shattuck believes researchers should also seek ways to improve the wider social context for adults with autism, from strengthening housing and vocational support services to educating police departments about aspects of autism that might influence police encounters.

Toward that goal, Shattuck is teaming up with community-based programs that are testing innovative interventions for adults with autism. He plans to study how effective the programs are and how readily they could be scaled up to work elsewhere. “There’s a lot of cool stuff happening,” he says.

In Jonas Moore’s experience, such services are badly needed. With the help of a good therapist, he has built a life that he finds fulfilling. “There are certain social situations I will not go into,” he says. “But at least I have friends. Before I didn’t want to have anything to do with socializing or friendship.”

Knowing that research is happening makes Moore feel optimistic, he says. “It means that people like me are going to get more help. We’re human beings too and we want to be treated with respect, want to be understood, want people to be patient with us and not to assume that we’re trying to be difficult.”

Siri Carpenter is a freelance journalist based in Madison, Wis.

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This article appeared in the February 21, 2015, issue of Science News with the headline, “Disconnected: Adults with autism are left alone to navigate a jarring world.”