Employment for Persons on the Autism Spectrum: Examination of the State of the Field and the Path to Pursue

Despite evidence of the potential of individuals with autism to perform competitive jobs, employment rates for people on the spectrum remain extremely poor. Approximately 75% of adults with autism are unemployed or underemployed (Autism Society, 2011; Van Laarhoven & Winiaski, 2012). In 2013, the U.S. Department of Labor (2014) reported unemployment for people with disabilities at 11.9%, with labor force participation for people with disabilities at 18.7%. In fact, only 6% of individuals with autism are actively employed (Shattuck, Wagner, Narendorf, Sterzing, & Hensley, 2011). In an analysis of nationally representative data, Shattuck et al. (2012) reported that in the eight years following high school only 53% of individuals with autism had worked for pay. Adult care and lost productivity from unemployment of individuals with autism have resulted in substantial costs to society. The annual cost for caring for the 1.5 million people in the U.S. with autism has been estimated from $35 billion to $60 billion (Autism Society, 2011), with the lifetime cost to care for a person with autism at $3.2 million. Two-thirds of these costs occur after the age of 18 and are directly related to unemployment.

Unemployment rates for people with autism are significantly higher than for other disability categories because they face a disproportionately difficult time navigating work due to their unique cognitive, communication and behavior challenges. Individuals with autism have markedly different vocational needs than individuals with other disabilities. Cimera and Cowan (2009) reported that adults with autism were more likely than adults with other impairments to be denied services because of the magnitude of their needs, which require a greater amount of services. Due to communication, cognitive, behavioral, and social needs that require intensive services and result in greater cost, they are less likely to obtain competitive employment.

There has been limited research and insufficient evidence to support the effectiveness of any particular vocational treatment approach for adults with autism, resulting in service delivery that is fraught with widespread lack of understanding of the employment support needs of this population. Only a fraction of research articles about autism have examined accessibility to employment support. The current lack of knowledge within the vocational rehabilitation (VR) system pertaining to employment interventions for people with autism (Standifer, 2009), which has created a severe problem in meeting their needs. Müller, Schuler, Burton, and Yates (2003) reported widespread lack of adequate training, found VR services were not meeting the needs of this population, and stressed the need for better trained vocational service providers. Their findings indicated that counselors often lacked the training and background to assist persons with autism to obtain compatible employment. The lack of expertise in helping individuals with autism find and maintain work in the face of their unique challenges has contributed to persistent high rates of unemployment (Lawler, Brusilovkiy, Salzer, & Mandel, 2009), which has resulted in a critical problem that is negatively affecting employment outcomes. Given the juxtaposition of evidence that people with autism can successfully sustain employment when provided with adequate support and reports showing the inadequacy of employment support, there exists today a dire need to provide information on evidence-based approaches that can be employed in the delivery of employment training and support for individuals with autism.

Universal Design for Transition

One approach that offers appropriate evidence-based practices available for preparing adults with autism for employment is Universal Design for Transition (UDT). The principles and practices of UDT have been shown to be highly effective in preparing persons with disabilities for transition to work (Scott, Saddler, Thoma, Bartholomew, Alder, & Tamura, 2011). The UDT approach can provide the overarching philosophy and framework for employment preparation and support, serving as a guide to move individuals toward identifying and attaining employment goals.

UDT principles recognize that individuals are different in how they learn and acquire skills, how they interact with other people and with their environment, and how they are able to demonstrate knowledge or skill mastery. UDT-based instruction modifies and adapts learning activities rather than trying to change the individual. The UDT framework offers instruction that is designed to prepare individuals for employment, taking into account their learning characteristics, abilities, interests, and challenges (Thoma, Bartholomew, & Scott, 2009; Zager & Alpern, 2010). Essentially, the goal of UDT is to enable all individuals to obtain and sustain employment in community-based settings by ensuring that the work environment is maneuverable, manageable and satisfying for all users. The UDT model was created by building on the Universal Design principles of (1) multiple means of representation (i.e., varied ways to present information that needs to be learned); (2) multiple means of expression (i.e., alternative methods of assessment to demonstrate skills and knowledge learned); and (3) multiple means of engagement (i.e., connecting work to personal interests to increase motivation) (Rose & Meyer, 2006). In UDT, employment tasks are scaffolded so that participants can enter tasks at their own level. Assistive technology plays a significant role in UDT as it offers multiple avenues for information presentation, acquisition, task completion, and expression of knowledge. Goals are accomplished through concrete presentation of information related to individual interests and needs. Through UDT’s framework, knowledge and skills needed in jobs are made meaningful through real world tasks, so that curriculum content can be mastered in real work environments (Thoma, Bartholomew, & Scott, 2009). For example, a person who wants to work in a hospital lab needs skills in measuring liquids (math), using lab equipment (science), and reading skills to identify the appropriate materials to use as well as to match the test with the patient (reading/English).

Elements of Effective Employment Intervention

The following elements should be featured throughout employment intervention programs: (a) work experiences in employment settings that take into account participants’ strengths as well as challenges, such as executive dysfunction, concrete thinking, rigidity, sensory issues, and social communication challenges; (b) self-determination competence through person-centered planning to identify work opportunities that take into account special talents and skills that may have been developed and honed to high levels through over-selective interests in specific topics (e.g., trains, cars, animals, theater, food, mathematics); (c) modeling and video presentations that take into account unique learning and behavior characteristics associated with autism (e.g., difficulty with abstract concepts, trouble with fast-paced speech, preference for well-organized visual presentation); (d) participation in individual work, cooperative tasks, and technology-driven activities that take into account learning and behavior needs (e.g., difficulty with generalization of learned information to new situations, desire to have friends but inability to take initiative or act reciprocally, difficulty understanding expectations in cooperative group situations); (e) role playing and drawing that take advantage of skills and strengths that can be used to demonstrate competence; and (f) reflection and evaluation of learned knowledge through self-assessment, involving the need to look objectively at the consequences of one’s actions and considering the interpretation of, and response to one’s acts by others.

The role of families in the employment process is essential to effective employment intervention. Adult service providers may substantially increase their effectiveness by supporting and communicating with families to help them obtain needed services, navigate agencies’ bureaucracies, and resolve problems and obstacles. In addition, support of worksite supervisors to help them deal with learning and behavior differences of employees with autism is critical to employment success of individuals with ASD. As supervision responsibility is transferred from job coaches to jobsite personnel, communication channels should remain open in order to handle difficult situations promptly and to maintain a steady pace of on-the-job learning. In this way, as job tasks and requirements continue to develop and change over time, the employee with autism may be accommodated.

In conclusion, with UDT, as the base for employment intervention, programs can offer a range of possible supports, services, and training to help prepare adults with autism for employment. The Universal Design feature of UDT eliminates the need to “retro-fit” services, which can delay employment outcomes and extend the length of needed to receive services. In addition, use of person-centered planning can assure that the focus of employment goals, supports, and services are based on the preferences of the individual, which increases the likelihood that goals will be met. Finally, ongoing open communication with families and employers are essential to effective employment intervention for persons on the spectrum.

 

Dianne Zager, Ph.D. is the Michael C. Koffler Professor in Autism, Dyson College of Arts & Sciences, Pace University, New York City and can be contacted at dzager@pace.edu. Colleen Thoma, Ph.D. is Professor & Chair, Department of Special Education and Disability Policy, Virginia Commonwealth University and can be contacted at cathoma@vcu.edu. Samuel Fleisher, Ed.D., is an Educational Therapist in Great Neck, NY and can be contacted at restjay@aol.com.

References

Autism Society. (2011). Facts and statistics. Retrieved January 15, 2014 from http://www.autism-society.org/about-autism/fact

 

Cimera, R.E., & Cowan, R.J. (2009). The costs of services and employment outcomes achieved by adults with autism in the US. Autism, 13, 285-302.

 

Lawler, L., Brusilovkiy, E., Salzer, M.S., Mandell, D.S. (2009). Use of vocational rehabilitative services among adults with autism. Journal of Autism and Developmental Disorders, 39, 487-494.

 

Müller, E., Schuler, A., Burton, B.A., & Yates, G.B. (2003). Meeting the vocational support needs of individuals with Asperger syndrome and other autism spectrum disabilities, Journal of Vocational Rehabilitation, 18(3), 163-175.

 

Rose, D., & Meyer,A. (2006). A practical reader in Universal Design for Learning. Cambrideg: Harvard Educational Press.

 

Scott, L.A., Saddler, S., Thoma, C.A., Bartholomew, C., Alder, N., & Tamura, R. (2011). Universal design for transition: A multi-element brief experimental single subject design study of the impact of the use of UDT on student achievement, engagement and motivation. i-manager’s Journal on Educational Psychology,4(4), 21-32.

 

Shattuck, P. T., Narendorf, S. C., Cooper, B., Sterzing, P. R., Wagner, M. & Taylor, J. L. (2012). Postsecondary education and employment outcomes among youth with an autism spectrum disorder. Pediatrics. doi:10.1542/peds.2011-2864

 

Shattuck, P. T., Wagner, M., Narendorf, S., Sterzing, P., & Hensley, M. (2011). Post high school service use among young adults with autism. Archives of Pediatrics and Adolescent Medicine, 165, 141-146.

 

Standifer, S. (2009). Adult autism and employment: A guide for vocational rehabilitation professionals. Disability Policy Studies, School of Health Professions, University of Missouri. Retrieved February 10, 2014 from http://www.dps.missouri.edu/Autism/Adults

 

United States Department of Labor (2014). Current disability employment statistics. Office of Disability Employment Policy, U.S. Department of Labor. Retrieved from http://www.dol.gov/odep/

 

Thoma, C.A., Bartholomew, C.C., & Scott, L.A. (2009). Universal design for transition: A roadmap for planning and instruction. Baltimore: Paul H. Brookes Publishing Co.

 

Van Laarhoven, T., & Winiarski, L. (2012). Maintaining vocational skills of individuals with autism and developmental disabilities through video modeling. Education and Training in Autism and Developmental Disabilities, 47, 447-461.

 

Zager, D., & Alpern, C. (2010). College-based inclusion programming for students with autism. Focus on Autism and Other Developmental Disabilities, 25(3), 151-157.

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