A new survey shows that roughly two-thirds of adults with autism spectrum disorder are unemployed or underemployed, despite the desire to find fulfilling work. Photo by rawpixel/Pixabay
May 10 (UPI) -- From computer programming and factory work to acting and retail, autistic adults have a skill set that mirrors the wide spectrum of their disorder, but they face challenges and perceptions that non-autistic workers don't encounter.
These challenges include tougher obstacles to getting and retaining a job, according to a new survey that found more than two-thirds of adults with Autism Spectrum Disorder are unemployed or underemployed.
In the first global study on employment of adults with ASD, adults in the United States, Sweden and Australia were asked about work interests, satisfaction and frustration of obtaining and keeping a job, and doing so despite issues with social skills, repetitive behaviors, speech and nonverbal communication.
The findings were presented Wednesday at the annual meeting of the International Society for Autism Research in Rotterdam, Netherlands.
"The community of adults who identify as having autism has long been saying we researchers are focusing more on genetics and neuroscience and less on their own lived experiences," Dr. Matthew Lerner, a survey leader and professor at Stony Brook University in New York, told UPI. "My hope is that this project, as well as some others presented at the INSAR meeting this year, will be seen as representing a shifting of the tide. Our job is not just to talk about people with autism, but to listen to them. You need to get past old myths."
While no specific number of adults in the United States with autism is available, researchers theorize autism is as common in adults as it is in children. The Centers for Disease Control and Prevention recently found that as many as 1 in 59 children in the United States has ASD.
The new survey is the first to examine workplace issues in a large sample of autistic adults. Researchers surveyed 248 adults on the autism spectrum in 2017 and 2018 who were an average age of 36. Of the participants, 104 were from the United States, 79 from Australia and 65 from Sweden.
Participants were recruited from email and social media blasts, as well as from Autism Speaks, the Autism Science Foundation and other advocacy and outreach groups. In addition to online surveys, the researchers conducted in-person focus groups.
In addition to interviewing those with ASD, 207 family members, 33 employers and 146 clinicians and researchers were surveyed.
The survey found work interests and skills can't be lumped together among all those on the spectrum. The researchers also asked about the importance of vocational training, focusing on their strengths and some accommodations, as well as attitudes on pay and life-work balances.
Among those surveyed, just 51.5 percent of adults with ASD are employed in the United States in some capacity. Conversely, in Australia where more support services are available, 38.5 percent have a full-time job. In Sweden, it is 37.3 percent.
Across all three countries, 24.7 percent were unemployed and actively seeking work. Also, 22.5 percent were full-time, 14.5 percent part-time and 6.6 percent casual -- a phrase not used in the United States. Nine percent were students and 10.6 percent were unemployed and not seeking work.
"I think there is the prejudice and the expectation that people with autism may not be able to perform the work or too rigid in expectations," said Lerner, an assistant professor of psychology, psychiatry and pediatrics at Stony Brook who also sees autistic patients regularly. "Lots of employers don't know what to expect of those on the spectrum."
In the survey, 90.3 percent said that experience and vocational training are important in helping them obtain jobs. Also, 87.5 percent believe educating staff before being hired was important in getting a job, yet roughly half believe ongoing training about ASD for all employees in a business is unnecessary.
On one hand, 99.2 percent of them said that focusing on individuals' strengths in the workplace was important, yet just 66.1 percent believe increased pay or modified pay would be valuable. And one-on-one work coordinators or mentors were the least supported concepts at 51.2 percent.
"We found the industries in which folks were employed ran the gamut of arts and recreation to education, administration, scientists, media, telecom and retail," Lerner said. "There is a perception of someone on the spectrum being only a computer position. Some folks gravitate to that. It's important to have personal skills and interests that match to that setting."
Lerner said some people with ASD are better skilled at repetitive tasks, in addition to being detail oriented -- "features that some employers don't always appreciate." Additionally, some require accommodations.
"Certainly some folks indicated they enjoy working in a highly social environment," Lerner said. "Someone on the autism spectrum might need to take breaks, or need to avoid an environment that might be difficult from a sensory perspective, like those with bright fluorescent lights."
Lerner said the most startling statistic was that 39.9 percent of participants reported that working on a regular basis decreases life satisfaction.
"I think the important point here is not to make assumptions," Lerner said. "We heard in focus groups they said they want the right job and for it to be fulfilling. But they are not necessarily interested in working in New York up the corporate ladder. In fact, they want to find a job that is meaningful, aware of their tasks and expectations."
The researchers hope the survey spurs improved job opportunities.
In 2015, Autism Speaks, in collaboration with Rangan Consultants, launched TheSpectrumCareers.com, a jobs portal to promote inclusive employment of the autism community by matching job seekers with businesses and employment service providers.
Autism Speaks has also partnered with the Workplace Initiative to help companies recruit, hire and retain people with disabilities.
"A lot has changed in the past 15 years," Lerner said. "It went from autism being seen as condition that people thought was always rare and pervasively impairing. It's now the most common development disorder. ... Regardless, the right opportunity to find meaningful and sustained employment is crucial, regardless of where they lie on the spectrum."