At some point, most of us will find ourselves writing a resume, going on an interview and, hopefully, fielding a job offer. We’ll spend most of our adult lives waking up, enduring some kind of commute, performing a series of tasks, returning home — only to repeat the process again the next day. And most of us won’t think twice about it. For many, work is a simple and inevitable concept. For individuals with autism spectrum disorder (ASD), however, work is neither simple nor inevitable. Instead, it represents a million small interactions that require constant thought, accommodation, and perseverance.
UJA-Federation of New York is the largest local philanthropy in the world, caring for all New Yorkers in need and strengthening the Jewish community in New York and in 70 countries around the world. Part of this work includes increasing the inclusion and independence of families and individuals with special needs. Because UJA-Federation is committed to reducing the barriers that exist for young adults with ASD to enjoy opportunities that are available in mainstream settings, two years ago we started to map out a comprehensive plan.
Working with the Autism Science Foundation, a survey was created in the spring of 2012 and distributed to explore the broad needs of young adults on the spectrum and to specifically identify obstacles to obtaining and maintaining employment. Using the Interactive Autism Network (IAN) national online registry, UJA-Federation reached out to three sub-groups: young adults on the spectrum, ages 18-35, who are legally independent; parents of young adults with ASD in that same 18-35 age bracket who are legally independent; and legal guardians of young adults with ASD who are not independent and require supervision under legal guardianship. Not surprisingly, the results clearly showed that work opportunities held the most potential to foster independence and inclusion of this unique population.
Work Experiences, Neither Happy Nor Secure
More than 200 individuals with ASD, parents, and legal guardians responded to the survey. Of the independent young adults with ASD who completed the survey, the vast majority (87 percent) reported that they worked in the past year (either paid employment, internships, or volunteer placements) and, most were working in full-time employment of 30 hours or more per week. Of these respondents, nearly half reported dissatisfaction with their job because “they didn’t make enough money,” “weren’t able to use their skills,” or “were not working in a field that interested them.”
Two-thirds (64 percent) of the responding independent young adults with ASD who reported working in the past year had, at some point, lost a paid job or internship. Seventy percent of these respondents who lost jobs had been fired, and, 43 percent had been laid off or “downsized.” High levels of dissatisfaction or discomfort were also seen in the more than half of those working who quit their positions, paid or unpaid.
Drilling down further into these figures, the report found that characteristics typically associated with ASD contributed to an individual getting fired or laid off. Specifically, respondents reported that “social mistakes” were the most predominant reasons behind losing a job, followed by an inability to “work fast enough,” “stay organized,” or “get along with others.” One-fourth of the young adults reported they were let go because “people didn’t understand or were uncomfortable” with their autism. Social issues were also reported by a large majority of independent young adults with ASD as the reasons for why they could not obtain employment today.
Finally, additional key findings included a lack of structured activity, an inability to find meaningful ways to spend their time, and difficulties in accessing services and navigating systems as the largest barriers to achieving life goals after high school.
Dream Big and Bold
UJA-Federation supports a network of nearly 100 agencies that focus on poverty, health, aging, special needs, strengthening Jewish life, and more. Relying on the data from this survey, UJA-Federation enlisted the help of appropriate collaborators from across this network — including Jewish community centers, human service agencies, camps, hospitals, and others — asking them to create a vision of new infrastructures and holistic programming that would increase the independence and community inclusion of young adults with ASD in both the Jewish and larger community.
With big and bold dreams, five agencies, the Edith and Carl Marks Jewish Community House of Bensonhurst, Mid-Island Y Jewish Community Center, Sid Jacobson Jewish Community Center, The Jewish Community Center in Manhattan, and Westchester Jewish Community Services were given small grants to plan intensively how to develop their vision into actual programming for individuals with ASD. Six months later, all of the agency plans were funded by UJA-Federation for implementation. Though each model is slightly different and designed to address specific local needs, all of the programs are based on the premise that individuals on the spectrum can be successful in their workplace and can sustain those jobs when:
- Strong and lasting relationships are built with local employers. Asset-focused and support-based outreach and education help to build a cadre of businesses that are willing to advocate on behalf of individuals with ASD. When employers can talk to other employers about hiring this cohort, they can communicate that individuals on the spectrum hold unique talents and strengths that make them specifically qualified for certain job responsibilities. This is not an act of charity; it’s good business. Beyond employers, other employees must also be educated on understanding and being sensitive to diversity, including individuals on the spectrum. Educational workshops and peer mentor programs among colleagues help ensure social integration for the individual with ASD in the workplace.
- Vocational preparation includes workplace social skills training. The most significant barrier to individuals with ASD getting and keeping a job does not revolve around an inability to do the job, but rather, an inability to socialize appropriately on the job. One such challenge is that social skills taught in school to individuals with ASD, such as interacting with peers and speaking one’s mind, did not translate to a work environment where one has to interact with supervisors and colleagues, and operate in client situations and meetings. Therefore, it is essential that training for individuals with ASD moves beyond concrete tasks and hard job skills. This means that social skills curricula for navigating the workplace must be created and used in conjunction with traditional methods of vocational training.
- Individuals with ASD are matched with suitable jobs and workplace environments. Individuals with ASD should not be placed in a job just because it happens to be open. A comprehensive vocational assessment is one step in the long process of getting to know an individual’s interests, goals, and vision in pursuit of a fulfilling workplace match. Most individuals with ASD were dissatisfied with their employment because it didn’t match their skills or interests.
- Ongoing job support is provided. Matching an individual to a job is not the end of the process, but the beginning. Obtaining a job does not equate with maintaining a job and, in fact, they require different skills. After a service provider offers help in building skills, strengthening emotional intelligence and brokering relationships with employers, they must then work with individuals and employers to maintain learned skills, support and restore emotional resiliency, and mediate unexpected conflicts that arise in the workplace.
Work is a rewarding experience and a pathway to feeling productive, contributing to the world and finding a purpose in everyday life. Individuals with ASD have the potential to be excellent employees, appreciated by staff and management alike. These individuals are also equally deserving of the opportunity to find their own passion and purpose through work. Through employer education, specific social skills training, individualized job matching processes, and ongoing support, adults with ASD can live the independent life they want in a community that is inclusive and appreciative of their strengths.
Melanie Goldberg, LMSW, is Planning Associate of the Caring Commission at the UJA-Federation of New York. For more information, please visit www.ujafedny.org/support-for-family-caregivers.