Autistic people’s skill at managing the demands of daily life starts to decline after they leave high school, according to a new study. But those who maintain more abilities relative to their peers are more likely to pursue further education.
Daily living skills — the ability to take care of independent-living tasks, such as personal grooming and managing money — also influence the likelihood that an adult with autism is employed, the authors found, but to a lesser extent than the severity of their autism traits does.
The results are the latest from a group of 253 people — most of them autistic — enrolled in a longitudinal study since they were 2 years old. All have now reached their mid-20s. Earlier findings from the group showed that their daily living skills improved through age 21, though more slowly than for their peers without autism or a developmental delay.
The new study examines how the participants have fared since leaving high school and aging out of the support programs available for children and adolescents. Progress in daily living skills tends to slow down in the face of this ‘services cliff,’ the researchers found. The findings underscore the need for support programs in adulthood and shine a light on the experiences of autistic adults, who tend to be understudied, the researchers say.
“I hope the field uses this [paper] as a wake-up call to urgently develop more adult interventions,” says Shaun Eack, professor of social work and psychiatry at the University of Pittsburgh in Pennsylvania, who was not involved in the work.
The researchers analyzed how the daily living skills of 98 participants, including 81 with autism and 17 with a developmental delay, changed as they grew from age 2 to 26. The team also asked the participants and their parents whether the participants had full- or part-time work and whether they had been enrolled in a two- or four-year higher-learning institution or vocational school at ages 18, 21 and 26.
The team confirmed the earlier finding that daily living skills improve through age 21, but they found that the participants lost some abilities by age 26, after leaving school. At that time point, participants fell into one of two groups: About half had fewer daily living skills than the other half; they were less likely to be pursuing additional education or to be employed, regardless of their intelligence quotients.
But, unlike education, employment outcomes tracked more with scores on a measure of autism severity than with daily living skills, suggesting that additional elements interfere with autistic people’s employment options, the researchers say.
“It just goes to the fact that social difficulties and all the things that come with autism really do make a difference in getting and holding on to a job,” says lead investigator Catherine Lord, distinguished professor of psychiatry and education at the University of California, Los Angeles.
Programs that help autistic people navigate the hiring process and the workplace could help, Lord and her colleagues say, as could information that helps employers work more effectively with autistic people. For example, interviewers’ opinions of autistic interviewees improved after the questions were updated based on the interviewees’ feedback, according to a December study.
“We’ve done a great job of raising awareness about autism in children, but we’re really missing this adult piece,” says study investigator Elaine Clarke, a graduate student at the University of California, Los Angeles.
“A lot of these issues that come up in the workplace are ones of people just not knowing,” Clarke says. “I don’t know if there’s a service for that or if that’s a cultural thing that needs to happen, but I definitely think that that plays a role here as well.”
The paper confirms in a large sample what clinicians have heard from autistic people and their parents for years, says Briano Di Rezze, assistant professor of rehabilitation science at McMaster University in Hamilton, Ontario, Canada, who was not involved in the work.
“We know from families and individuals — adults — that there are challenges when they transition into adult life,” Di Rezze says. “It’s an important paper to begin to examine that from a group perspective and from a data point of view.”
Future studies should parse which daily living skills are most crucial for adults’ success, Di Rezze and the researchers say. They should also examine how these skills and outcomes vary in people living in countries with different services, to find out what kind of support is most successful.
“That’s really what everybody wants,” Di Rezze says.
Lord, Clarke and their colleagues are working to measure less tangible indicators of quality of life in adulthood, because not every person can or wants to work or pursue higher education. To that end, they are designing a tool to evaluate whether autistic adults have activities that they enjoy and are capable of pursuing independently.