Employement Situation for People with ASD - A Review of Employment Importance and Barriers

Written at Saint Mark's School

By Yishi Hua



Abstract

For people with Autism Spectrum Disorder (ASD), their living outcomes are closely related to employment status, and yet finding suitable employment can be challenging. This paper aims to provide an overview of the current employment situation for people with ASD (PWASD). The paper begins with an introduction of the prevalence of ASD, the importance of employment, employment trend, and moving on to job choices, the challenges and barriers PWASD face, the cost of employment for PWASD, and finally evaluating current employment support models and reviewing the gaps related to PWASD’s employment. Practical implications and future directions that would promote more awareness towards this vital part of the lives of individuals with ASD are discussed.


Keywords: Autism Spectrum Disorder, employment situation, vocational support, wellness outcome


INTRODUCTION

Prevalence

According to the Autism and Developmental Disabilities Monitoring (ADDM) Network, the estimated prevalence of ASD is one in 68 for children under 8 years old in 2012 (Christensen et al., 2016). Another study from the National Health Statistics Reports compared the prevalence of parent-reported case numbers of ASD between 2007 and 2011–2012 among children ranging from 6 to 17 y.o. in the U.S. and found a significant increase from 1.16% to 2.00% (Blumberg et al., 2013). Increases existed across all age groups, especially among boys aged 6-17. ASD is approximately 4 times more common among boys than girls (Baio et al., 2014). Another study involving data on 2,568 children found a high comorbid rate for people with ASD, including 83% co-occurrence of at least one non-ASD developmental diagnoses (Levy, Giarelli, Lee et al., 2010). These statistics show a rapid increase in the cases of ASD, as well as the gender difference and comorbidity.

Apart from the increasing prevalence of ASD, the psychological outcomes for people with ASD have continued to be poor. A 2005 study found that the psychosocial outcome of children diagnosed with ASD in the 1960s, 1970s, and 1980s was worse than previously expected (Billstedt, Gillberg, & Gillberg, 2005). Over half of the participants (52%) reported “very poor”, 23% reported “poor”, 16% reported “restricted but acceptable”, 8% reported “fair” and none of the participants reported “good”. However, in recent years, adults with ASD have better opportunities and thus, better outcomes (Eaves & Ho, 2007). Half of the participants with ASD reported a fair to good outcome, 46% reported poor outcome, and none reported very poor outcome.

This article is a full review of PWASD's current employment situation, the importance of employment and the barriers these people face. The following questions will be addressed throughout the review: (1) Why is employment and vocational training important for individuals with ASD? (2) What is the current employment/vocational training situation and job choices for PWASD? (3) What are the costs associated with ASD employment? (4) What are the existing gaps for ASD employment? The first three questions will be discussed in the sections below, while the final question will be addressed in the discussion section.


Importance of Jobs

Employment has been found to be beneficial for people with ASD such that jobs increase independency for PWASD. A study found that job intervention time for PWASD decreased on average over time, indicating that supported employees with ASD become more independent in performing competitive employment and have the ability to maintain positions for extended periods of time (Wehman et al., 2012). Another study found that behavioral problems were inversely correlated with vocational independence and overall independence in adults separately, suggesting that jobs help increase independence in lives for PWASD (Esbensen, Bishop, Seltzer, Greenberg, & Taylor, 2011). In the study, behavioral problems were measured according to the Scales of Independent Behavior-Revised, and a composite measure of independence in adult life was a sum of ratings in the essential domains of residential independence, social contact with friends, and vocational independence. Impairments in social function and communication in adults with ASD may be a reason for their poorer outcomes in contact with friends and neighbors, thus having a job might increase their likelihood of social interactions, and increase their social and communication abilities. As a part of a study of seventy-six young adults with ASD, parents were asked open-ended questions, and twenty-nine percent indicated the need for a job or more hours of work for their young adults with ASD (Eaves & Ho, 2008).

A study involving three adults with autism found that when an individual work system, which is organized sets of visual information to inform a student about their participation in work or play areas, was utilized, there was an increase in independent work or play functioning (i.e., an increase in on-task behavior and reduction of teacher prompting) for all three subjects and the three subjects maintained the performance at the 1-month follow-up (Hume & Odom, 2007).


Employment Trend

People with ASD continue to face challenges in seeking vocational training and employment. Young adults with ASD that exited secondary education reported low rates of either employment or higher education in the U.S. (Taylor & Seltzer, 2011). More than half of these adults (56.1%) still spend most of their time in adult day services centers, and only 6.1% were engaged in competitive employment, indicating that only a small portion of PWASD achieved high independence levels. Another study on employment activities and experiences of adults with ASD in Australia found that 54% participants stated the need for support in the job-seeking process. 72% participants stated that they were not receiving specific support for their ASD-related difficulties at the workplace, and 66 % participants said that they would like to receive support that is specifically related to their ASD conditions (Baldwin, Costley, & Warren, 2014). In their responses, the participants mentioned the desire for greater recognition, understanding and respect of their needs within the workplace by others.


Job Choices

Matching PWASD’s abilities to the type of jobs they do is extremely important for their employment. Taylor and Seltzer (2011) suggested that PWASD without intellectual disability (ID) tended to receive adult day services the most (73.5%), while for PWASD with ID, those who receive adult day services only comprise 56.1%. 6.1% take part in competitive employment and 12.1% take part in supported employment. Over 47% of young adults without ID participated in post-secondary education program compared to 2% of young adults with ID. The percentages in supported employment were similar (12% in each category). Adults without ID were significantly less likely to receive adult day services (6%) compared to adults with ASD with comorbid ID (74%). About one-quarter (24%) of young adults with ASD without ID had no day activities, which was nearly three times greater than those with ID (8%). PWASD without ID were three times more likely to not have day activities than youths with ASD who also had comorbid ID. This pattern is resulted from the inadequacy of the current system to help these young adults with high functioning as they transition into adulthood, suggesting that there is a gap between services provided to the two groups--PWASD with ID and those without ID. More autism-focused adult services are needed to allow young adults with ASD without comorbid ID to achieve their maximum level of independence, develop sustainable careers, and unleash their true potential. The current developmental disability service system does not seem to accommodate the unique needs of individuals with ASD without ID. Furthermore, only 18% of young adults without ID were receiving employment or vocational services such as supported employment or sheltered workshop, compared to 86% of young adults with ID. It was indicative of the fact that the current system needs to be further studied and renovated to fulfill the increasing needs of PWASD.

Researchers are working on solving the flaws of the current system. For example, a newly-developed vocational index for adults with ASD included categories ranging from 1 (no vocational/educational activities) to 9 (postsecondary degree-seeking program/ employed in the community without supports; Taylor & Seltzer, 2012). This vocational index, compared to other vocational indices, takes into account the whole range of activities that are likely to be experienced by adults with ASD, which is more detailed than many current vocational indices. Also, this vocational index includes specific rules for the consistency of classification for adults with ASD who have more than one type of vocational activity simultaneously. This index also includes information on whether these adults spend minimal hours in vocational activities. Although existing vocational indices have done a remarkable amount of contributions, this more sensitive, detailed and reliable index will aid comparison of outcomes from sample to sample, and allows for the accurate examination of change over time.

Another study examined job preferences among adults with ASD when beginning a supported job (Lattimore, Parsons & Reid, 2002). All of the participants chose their preferred task among the first choices of a day most of the time, suggesting a pattern of initial on-the-job preference for one task over the other and then a preference to subsequently change tasks over the course of the day. Although further research is needed to develop ways of predicting worker preferences for the regular job routine and reveal preferences for task alternation, this study provides insights to job selection for PWASD.

Evidence has also shown that jobs that were more preferred and better matched with their functioning level are positively associated with higher productivity, accuracy, and satisfaction (Hall, Morgen & Salzberg, 2014). The study involved four 19 –20-year-old young adults with mild to moderate intellectual disability from among 100 students enrolled in a post-high school transition program. The four participants completed a web-based preference assessment, and a job coach familiar with the participant completed the job matching assessment. High satisfaction is defined as the number of sessions of job identified by participants as “liked better” or “worked better” divided by the total number of sessions a selection. Three out of four participants reported high satisfaction for high-preference and high-match jobs. However, one of the four participants reported that they would occasionally choose a less preferred and low-match job. This study further suggests that finding such a job that fits PWASD well is the first step towards a “stairway of career path opportunities”.


Current Support Models

Supported employment improves PWASD’s cognitive performance (García‐Villamisar & Hughes, 2007). A study involving 44 adults who are in community employment over a span of 30 months found that the supported employment group had better performance at executive functions such as spatial span task, spatial working memory task, planning task and other tasks such as trail making test and matching familiar items. In comparison, the unemployed group in the study showed no improvement in cognitive ability. Currently, there are multiple types of supporting models for ASD employment, and the support they provide are very diverse. These include Princeton Child Development Institute (PCDI)’s Adult Life-Skills Program, Positive behavior support (PBS). PCDI’s Adult Life-Skills Program serves as not only an employment support model but also instructs a variety of home and community living skills (McClannahan, MacDuff, & Krantz, 2002). Because of this goal, their services are provided in multiple settings. Their curriculum involves skills in areas such as community participation, keyboard use, language development, money management, recreation and leisure, self-care, social interaction, and time telling, etc. The 12 people who were in the program for one or more years held 20 jobs between 1987 and 2000, and three people have continued in the first jobs they were employed in after enrolling in the Adult Life-Skills Program, proving the program beneficial to them.

As another program that has also been found beneficial for PWASD, PBS takes a different approach and aims to help an individual by changing his or her lifestyle (Carr, Dunlap, Horner et al., 2002). Positive Behavior in this context includes all of the skills that increase the likelihood of success and personal satisfaction in diverse settings for the individual. Support in this context includes all of the educational methods that could be used to teach, strengthen, and expand positive behavior and all of the systems change methods that could be used to increase opportunities for the occurrence of positive behavior. In the study, ‘DJ’, a 25-year-old man with autism receives a PBS plan (Schall, 2010). The plan was found to be successful, as DJ had a decrease in the number of episodes of loud noises (25-30 per month to 10-4 across 5 months) and episodes of pushing (1 per month to 0 across 5 months). DJ’s supervisor at work also reported less worrying about DJ’s behavior. Eventually, DJ’s job was more secure after the implementation of PBS.


Barriers in Job-Seeking

Despite the benefits of employment, they still face a great number of challenges in the job-seeking process. A study on job-related barriers both in and outside of autism-specific employment found three main categories of barriers: social, formality, and job demand problems (Lorenz, Frischling, Cuadros et al., 2016). The participants of this study consisted of 66 German individuals with autism that answered questions both on barriers they expected before entering the job market, and barriers they encountered. For individuals in non-autism-specific employment, the expected barriers included social problems of communication (15%), formality problems of equipment and environment (12%), work routines (10%), application process (10%), and qualification (8%). Participants with autism-specific employment reported the highest rate of formality problem of qualification (23%), followed by social problem of communication (11%), formality problems of equipment and environment (9%), work routine (9%), and cognitive job demand problems (9%). In the actual job setting, both groups reported the formality problem of equipment and environment to be the most common barrier. In non-autistic-specific employment settings, this was followed by social problem of communication (15%) and formality problem of work routine (13%). In autistic-specific employment settings, application processes (16%) and work routines (12%). These findings suggest that individuals with ASD face qualitatively different barriers in different types of job settings. Based on the feedback from those with ASD, the work settings could be altered to better suit their needs. For example, many reported the equipment and working environments as problems, especially the noise level in open-plan offices, which could be solved by rearranging office space to reduce the noise level for employees with ASD.


Financial Costs of ASD Employment

The fiscal costs of services acquired by adults with autism were higher than most of the other populations served by the United States vocational rehabilitation (VR) system (Cimera & Cowan, 2009). However, even though these expenditures are high, they appear to be decreasing over time. Services obtained in 2006 had an 8.8 % decrease from services obtained in 2002, while the cost of services obtained by other VR participants, in general, had a 3.2% increase, that is to say from $2263 in 2002 to $2336 in 2006.

Another drawback is that even though PWASD were employed at higher rates than most of the other populations that receive VR services, they worked far fewer hours and were paid less than average (Cimera & Cowan, 2009). Specifically, individuals with autism and learning disabilities had the highest rate of employment (53%), but earned the least in wages (mean = $101.16) and worked the second fewest hours (mean = 8). The study concludes that there seems to be an inverse relationship between rate of employment and employment outcomes (i.e. hours worked and wages earned). Researchers suggested that an explanation is that compared with high-paying, full-time jobs, low- paying, part-time jobs might require fewer skills, are easier for job developers to find, and less affected by inappropriate behaviors or poor performances. However, there is limited research on the potential financial strains or outcomes for ASD working in low-paying jobs.


Conclusion and Discussion

This paper has reviewed the current employment situations for PWASD, the importance of employment and the barriers this population face in the process. It found an ameliorated condition for ASD employment over the span of decades. The benefits of suitable ASD employment for each individual have been examined, and various types of support models are being put into use. However, there are yet several important gaps that need to be addressed. Gaps include 1) the definition of independence; 2) comprehensive cost analysis of ASD employment for parents and employer; and 3) employment for lower-functioning PWASD.


Level of independence

There is a lack of comprehensive studies on the importance of independence for adults with ASD. Studies concentrate mainly on the methods used or the outcomes of supporting employment, stating that employment could increase independence for PWASD (Esbensen, Bishop, Seltzer, Greenberg, & Taylor, 2011; Hume & Odom, 2007; Wehman et al., 2012). However, the term independence does not have a unified definition, nor is it specifically related to the case for PWASD (Hume, Boyd, Hamm, & Kucharczyk, 2014). The explanation of independence is important in this context because in order to fully understand the employment condition of PWASD, we need to specifically know the operational definition of different levels of independence. For example, the highest level of independence could be being able to make a living on their own, which informs educator, researcher, and service provider about the skills and the corresponding training PWASD would need. However, the different levels of independence are not clearly defined in research, which made it difficult to develop specialized training programs that target the different levels of independence and to better address the specific challenges a PWASD would face in real life.

For future direction, there could be more comprehensive research on the specific notion of independence in the context of ASD. The newly-developed vocational index (Taylor & Seltzer, 2012) was designed to provide a clearer guidance of ASD employment. This and other similar indexes that are specific to ASD independence could be utilized to promote a more standardized and uniform definition of independence across academia, research, and clinical practice, especially in contexts such as examining skill development and making job choices.


Costs of ASD employment

Cost of ASD employment could include monetary costs, social costs and market costs for parents and employers. However, the studies that examine the costs for ASD employment-focused solely on monetary costs (Cimera & Cowan, 2009), which left out important costs that would profoundly impact employer and parents’ willingness to participate in vocational programs and employment for PWASD. In order to understand the barriers for PWASD and their families to access vocational programs and employment, other kinds of cost should be taken into account. Social costs are more closely related to human emotions towards acquiring an occupation. For example, parents’ concerns about their children’s safety and treatment in work conditions may increase their ambivalence about enrolling their children in vocational programs. The apprehensiveness, in this case, is a factor that should be taken into account other than monetary costs. On the other hand, being related to PWASD may also increase their compassion and willingness to provide job opportunities to PWASD. In the 2008 study by Eaves & Ho, parents already indicated their opinions on their children’s employment, showing that people who are related with those with ASD are also an essential part of ASD employment. In addition, market cost, the cost associated with bringing commodities to the marketplace, should also be taken into account. For PWASD who work in the service industry, they may exhibit low efficiency in serving their customers compared to other employees. Similarly, if they work as librarians, they may also have slower speed in interacting with customers and organizing/sorting books. Thus, market cost is also a factor that ought to be considered to obtain a thorough view of the costs associated with employing PWASD.

For future direction, more research is needed on different kinds of costs that would influence ASD employment and potential ways to overcome these barriers. For example, a big scale cross-sectional study that explores parents, co-workers and the general public’s opinions on employment safety, efficiency and practicability would contribute to the field’s understanding of the specific barriers they face. With this data, strategies could be developed and implemented to overcome these barriers to increase the employment rates of PWASD and help them integrate into the society.


Job Choice

Most of the literatures focus on promoting employment for high-functioning PWASD (Baldwin, Costley, & Warren, 2014), whereas those who are lower-functioning continued to be left out in the society, receiving adult day care services and away from a functioning life (Taylor & Seltzer, 2011). However, in order to acquire complete data on the employment of PWASD, employment situation across the ASD spectrum should be examined. For example, higher-functioning PWASD could acquire jobs in areas such as computer science, but those who are lower-functioning could take on easier tasks such as sorting books and working as cashiers. The latter kinds of occupations require minimum mental or physical labor, and are in accordance with lower-functioning PWASD’s tendency to perform repetitive tasks, which would improve their vocational outcomes.

For future research directions, a comprehensive analysis on current employment situation and employment opportunities for PWASD who are lower-functioning are need to promote more tailored employment opportunities, because employment has shown to be beneficial and mostly successful for higher-functioning PWASD. Developing tailored employment and new vocational programs for lower-functioning PWASD are needed, along with sufficient evaluation and modification to sufficiently support PWASD.


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