The outlook is often bleak for young adults with autism spectrum disorders (ASD). Even when they manage to graduate from high school or college, it’s very difficult for them to find a full-time job.
While there are many programs that help them interact with society when they’re young, those services are typically cut off by the time they graduate, leaving them with few options if they’re unable to navigate the work world on their own.
As a result, just 58 percent of young adults in their late teens and early 20’s with ASD worked for pay outside the home after high school, a far lower share than those with other types of disabilities, according to the 2015 National Autism Indicators Report. Those who were employed tended to work part-time in low-wage jobs.
Currently the primary services intended to help young adults with autism are so-called sheltered programs that start them in a segregated work environment with the hope that they will be able to become employed with a regular company down the road. But because they are narrowly focused and usually don’t include training in social cognition, they rarely succeed in this goal.
Frustrated by the lack of transition programs available, I worked with Autism Services and Resources Connecticut (ASRC) to see if there was a better way to help these individuals learn the social and cognitive skills necessary to thrive in the workplace. The results, which involved help people with ASD work in demanding jobs processing patent applications, were encouraging.
First let’s consider why it’s so difficult for individuals with autism to cope in social and work environments in the first place.
Background on ASD
Individuals with ASD tend to have difficulties with social interactions and social communication. They may feel lost or anxious if an assigned task isn’t clearly explained or if a sequence of events is not fully understood.
They also struggle with the rapid comprehension required for spoken communication. The fleeting nature of verbal language (once spoken, words disappear) is especially problematic when the information is complex or lengthy.
The so-called enactive mind theory was articulated in the early 2000s by researchers at the Yale Child Study Center to try to explain why ASD causes these social deficits. The theory is based on the emerging field of embodied cognitive neuroscience. It posits that the social deficit in autism arises from an atypical developmental trajectory beginning in the first months of life that precludes an individual from having the experiences necessary for normal social development.
When entering new or unfamiliar social and physical environments, individuals with ASD often experience a high level of anxiety that may result in inappropriate behavioral manifestations, such as tantrums or crying, or social withdrawal. This makes it difficult for them to independently enter the workforce.
Unfortunately, few programs exist for helping young adults with ASD to transition effectively to college and the workplace.
There are quite a few programs across the country that provide job coaching or employment opportunities for individuals with ASD, but they tend to be sheltered. That is, the employees start in a segregated work environment with the hope that they will be able to become employed with mainstream employers at a later point.
Sheltered workplaces also tend to focus on a specific skill set and do not provide a curriculum in social cognition. Since they are often subsidized, they are constantly seeking more financial support. They also tend to lack transition planning to help employees find competitive jobs elsewhere.
While they play an invaluable role in helping individuals with ASD, they rarely achieve the goal of true independence.
‘Falling off a cliff’
Hoping to find a better solution, Lois Rosenwald, executive director of ASRC, and Julie Hipp, its board president, in 2014 created a for-profit startup called Open Options Partnership to figure out what might better integrate young adults with ASD into the workforce.
The idea was to see if people with ASD could develop and improve crucial social skills while working at a task they might be particularly well-suited for: researching patents.
I was the independent evaluator of the project. Rosenwald and I served together on Connecticut’s Autism Spectrum Disorder Advisory Council’s subcommittee to improve and expand access to training, consultation and learning opportunities for providers, professionals and families. I also recently coauthored a book chapter on using a high-tech application to improve the transitions of students with ASD. I am a community faculty member with the Yale Child Study Center and a researcher with the Center of Excellence on Autism Spectrum Disorders at Southern Connecticut State University.
Rosenwald likened the bleak outlook of young adults with ADS to “falling off a cliff,” a phrase that captures the frustration felt by families who watch their children graduate from college but unable to find a job and soon after reach the cutoff point for after-school ASD services.
At the time of the project, a client was having trouble finding employees who demonstrated competency in patent application reviews, which require manipulating and analyzing large data sets and performing what many would consider tedious work. Some people who are on the high-functioning side of the autism spectrum are particularly well-suited for such tasks because of their comfort with repetitive work tasks, attention to very small details and ability for sustained attention.
Rosenwald and Hipp believed that with the right framework and planning, the barriers to employment could be overcome and that people with ASD would be able to not only survive but thrive in professional, highly competitive work environments.
The project began by selecting four young adults (in their 20’s or early 30’s) who lived in the area served by ASRC. They were deemed able to successfully deal with workplace situations and managers – according to a predictive index used by ASRC’s board president in her executive search and consulting firm – and assigned them to work with the patent company on an as-needed, contract basis. The availability of contracts was not continuous or guaranteed, nor was a steady paycheck, making it more closely resemble real-world conditions rather than a sheltered program. Not only did the four employees need to learn the high-tech aspects of the work, but also they needed to learn how to work together as a team.
Open Options, funded by grants from the Napier Foundation of Meriden and Wallingford, provided the employees with social cognition training, including social skills in the workplace, pragmatic language skills, behavioral regulation and executive functioning. A social cognition specialist worked with the employees to develop an employee handbook governing proper workplace behavior and establish goals to help them learn to self-regulate their emotions and handle stress on the job.
The study ran for about a year and used the CEDAR Social Cognition Scale – which uses a point system to measure cognition and self-regulation – and employer evaluations to demonstrate progress.
The CEDAR scale includes 51 items or statements, scored from 1-9, such as:
Expresses needs and feelings in a way that is likely to result in good outcomes, and
When receiving feedback, tends to respond with arguments and explanations rather than acceptance.
All four employees saw steady growth on the scale, particularly in terms of openness to new ideas and experiences, ability to transition from one activity to another and willingness to accept feedback.
Their evaluations by the employer also showed improvement. For example, one employee started off at “meets minimum requirements” and finished the program at “exceeds requirements.” He is now working at least 20 hours a week in an internship in a related field, and is being considered for a competitive position with the company.
The need for predictable schedules
One important finding of the project, and the reason it ended earlier than planned, was that the key to supporting individuals with ASD in a workplace setting involves some degree of predictability. Consistent work schedules are one of the most important certainties that employees with ASD need for their success in the world of work. But this was often not the case.
The client was unable to determine in advance how many hours it needed the employees to work on a day to day basis. On some weeks, the employees would work eight hours on the first day, have two days off, and then be notified a couple hours ahead of time that they were needed on the fourth day.
Overall, the study underlined the importance of providing social cognition training for the business environment in order for individuals with ASD to succeed in competitive workplaces. In this project, ASRC’s role as its backbone was critical to making it work.
With the proper training and accommodations, people with ASD could become productive and indeed sought-after employees in the workplace, making them truly independent.
Lois Rosenwald, executive director of Autism Services and Resources Connecticut, Renee DePastino, a social cognition specialist at Autism Services & Resources Connecticut, and Patrick Iben, a senior research assistant at Southern Connecticut State University, coauthored this article.