Survey of vocational experiences of adults with Autism Spectrum Disorders,and recommendations on improving their employment

1 Introduction

Autism Spectrum Disorder (ASD) is a major developmental disorder characterized by deficits in communication and language abilities, limited social understanding, and behavioral problems including repetitive and stereotyped patterns of behavior. The US Center for Disease Control and Prevention reported a 78% increase in ASD diagnosis in children from 2002 to 2008 (Developmental Disabilities Monitoring Network Surveillance 2010). As these children become adults, the support systems in place will become increasingly used and the success of these programs will become increasingly vital. One major area of concern is employment.

Several studies have examined employment rates of adults with ASD and what they have found is cause for concern. Many have shown that adults with ASD have significantly higher rates of unemployment or underemployment than the general population (Hurlbutt & Chalmers, 2004; Jennes-Coussens, Magil-Evans, & Koning, 2006; Cimera & Cowan, 2009; Butterworth et al., 2013; Baldwin, Costley & Warren, 2014). One study found adults with ASD had a low rate of employment overall, with only 20% working over 10 hours a week, 28% working less than 10 hours per week, and the rest were in day treatment centers (30%), in post-secondary education (14%), or unemployed (8%) (Taylor & Seltzer, 2010). The National Autism Indicators Report 2015 looked at longitudinal survey data of adults with disabilities and found that ASD had the lowest rate of employment compared to the other disability groups. In the first five years after high school only 58% of the ASD participants had found employment, whereas the second lowest disability group had a 74% employment rate (with an undetermined number in post-secondary education). Amongst the ASD population they also found that in their early twenties, 42% had never worked for pay, while 80% of those who had found employment only worked part-time (Roux et al., 2015).

Not only have studies found an employment problem amongst adults with ASD, but some have highlighted the effect this has on the individuals. One study found that adults on the spectrum in supported employment had an increase in cognition over time, compared to the unemployed group who showed no change in cognition (Garcia & Hughes, 2007). Another study showed that jobs of differing qualities yielded differing qualities of life, with ASD respondents in supported employment reporting a higher quality of life, on average, than those in shelter-based employment (Garcia-Villamisar, Wehman, & Diaz Nararroa, 2002). The relation of job quality and quality of life has also been found in the general population (Butterworth et al., 2011).

In response to these issues some researchers have investigated the support systems currently in place for adults with ASD. In the United States, employment support largely comes from state-specific services for adults with developmental disabilities (for the more challenged individuals) and the US Vocational Rehabilitation System (VR) for higher-functioning individuals capable of competitive employment, possibly with supports.

While VR services may help many people with disabilities, their current ability to help those with ASD is limited. Lawer et al. (2008) found that of the 382,221 adults served by the VR in 2005, only 1,707 were adults with ASD. These adults with ASD were found to be the most likely to be denied services, and of those provided service, the most expensive for the VR to serve (Lawer et al., 2008). Two years later, Taylor et al. found that, of those using the VR, only 18% of adults on the spectrum who did not have an intellectual disability obtained employment or services from the VR (Taylor & Seltzer, 2010). In interviews of 18 adults with ASD, Müller et al. repeatedly found that VR counselors and services were not set-up nor prepared to best help individuals with ASD (Müller, Schuler, Burton, & Yates, 2003). More recently, in 2014 Burgess and Cimera found that the number of transition-aged adults with ASD using VR services has substantially increased in the past 10 years, but the low rate of employment had not changed. They found that in that 10 year period there was a consistent employment rate of only 1/3 of those receiving services (Burgess & Cimera, 2014). These all illustrates a major failing of VR in helping adults with ASD obtain employment.

In 2014 and 2015 a special interest group at the International Meeting for Autism Research attempted to identify research priorities that would best help growing vocational problems of adults with ASD. An interesting point made during these conversations was that the past decade has seen an increase in funding of relevant research and support, yet there is still many questions to be answered and gaps in practice and policy to be filled. Many called for a need for more evidence-based support that could better guide policy and support services (Nicholas et al., 2016). This is an important point, as many studies on novel evidence-based practices have been conducted in the past decade, yet are rarely, if ever, implemented into current support practices. These practices include, but are certainly not limited to, The Social Cognition and Interaction Training-Autism curriculum, the use of technology to support employment, and the Individual Placement and Support Model of supported employment (Loukas et al., 2015; Allen et al., 2010; Burke et al., 2010; Drake, Bond, & Becker, 2012). While this group led a much needed discussion that highlighted many problems, there still remains many unanswered questions (Nicholas et al., 2016).

Overall, there is substantial data demonstrating unemployment and underemployment of adults with ASD, but there is little understanding of the primary barriers to employment and how to overcome them. The purpose of this paper is to evaluate the vocational status of adults with ASD, determine barriers to employment, evaluate current government vocational services, and determine possible methods to improve employment of adults with ASD.

2 Methods

3 Results

As shown in Table 1, 73% of respondents were parents of adults with ASD, 25% were adults on the spectrum and 2% were adults on the spectrum filling it out with their parent/guardian. In the rest of this paper we will refer to the characteristics of the adults with ASD, regardless of whether the respondent was a parent and/or the adult themselves. The responses were largely based on young adults with ASD, with 56% of responses under the age of 24, 31% between 25 and 44, and 13% over the age of 44. It should be noted that this highly skewed age distribution is consistent with the rapid increase in adults with ASD. The responses represented a variety of educational backgrounds with many participants having had at least completed some post-secondary education (29%) or were still in school or a training program (28%).

As shown in Table 2, 16% of participants were in an educational/vocational program, including 9% in high school, 3% in vocational programs, and 4% in college. For those who were working, the most common job situations in order were “working without supports in regular employment” (28%), “regular employments with support” (9%), group-based employment (5%), and center-based employment (4%). Also, 27% were “unemployed, looking for work” and 13% were “unemployed, not looking for work”. Participants with jobs tended to have entry-level positions (81%) and worked an average of 25 hours a week which is somewhat less than their preferred level of 33 hours/week. As shown by Fig. 1, all groups working below 40 hours/week would like to work more hours, especially for those working the fewest hours. Conversely, people working over 40 hours/week generally desired to work less.

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Fig.1

Hours/Week Participants Currently Worked and Desired to Work.

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Fig.2

Job Satisfaction.

Of the participants that were employed, there was a high job satisfaction rate with 79% reporting good or better satisfaction (Fig. 2). Participant’s wages ranged from $0/hour to $44/hour with a median of $9/hour and an average of $12.50/hour. Wages varied depending on type of employment. Those in center-based (sheltered workshop) or group-based employment earned an average of $3/hour, while those who worked in regular employment with supports averaged $9/hour and those working without supports averaged $16/hour.

The survey found that 41% of participants received financial support from government sources (social security, food stamps, or other government sources), with an average of $704/month. Similarly, 54% of respondents reported receiving support from family/friends, with an average of $916/month (free housing was valued at $500/month) (Table 2).

Respondents, who answered that the participant was unemployed and looking for work, were asked about the barriers they had found towards finding employment. The most common barriers (in order) were can’t get past interviews (60%), can’t find a job to apply for (40%), lack of transportation (29%), don’t know what kind of work they want to do (22%), and can’t keep a job (22%) (see Fig. 3).

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Fig.3

Barriers to Finding Employment. Respondents were able to select more than one option and percentages are out of number of respondents who answered the question.

Unemployed responders were then asked two open-ended questions to further explain the challenges they found in finding or keeping a job and what could help them find or keep a job. Tables 3 and 4 show the response rate based on types of answers given. The most common challenge to finding/keeping a job was that the participant’s autism symptoms inhibited job acquisition (30%). Examples of ways in which their autism symptoms inhibited getting a job included anxiety about working, communication difficulties, and limited social skills. Additionally, 24% said they needed better and/or additional job coaching/job training. The suggestions they had for ways to help them find or keep a job were similar to the challenges explained prior, with the top two suggestions being increased and improved job coaching and/or training (43%) and having someone with an understanding of ASD work with employers (24%).

Figure 4 shows that only 33% of respondents had used one or more DDD services. In Arizona, the services provided by DDD include: Transition to Employment which provides instruction, training and job shadowing; Employment Support Aide which is a 1:1 aide who is always present in the workplace; and Individual Supported Employment which provides a job coach who helps with finding and keeping a job but is only present occasionally; and center-based and group-based employment. The most commonly used programs were Individual Supported Employment (18% of all respondents) and Transition to Employment (13%) – see Fig. 4. Respondents had generally positive satisfaction ratings with Group-Based Employment and Employment Support Aides receiving a 4.1 and 3.9, respectively, on a scale of 1 (poor) to 5 (excellent). Center-Based Employment, and Individual Supported Employment, and Transition to Employment had a lower satisfaction rating with scores of 2.8, 2.7, and 2.4, respectively (see Fig. 5).

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Fig.4

Percent of Respondents that Used DDD Services. 67% of respondents did not use any DDD services.

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Fig.5

Satisfaction with DDD services, on a scale of 1 (poor) to 5 (excellent). Data points represent averages and standard deviation.

Of the 54 open-ended recommendations for DDD services, 33% of the responses discussed a need for more training of DDD providers about how to work with and best serve people with ASD. Another 30% discussed a need for improvement of job coaching/training services, ranging from not getting enough individual-specific training to removing supports too quickly. More general recommendations included having a person with an understanding of ASD work with employers to help explain and adjust for autism symptoms, or to help utilize the participant’s skills and abilities (15%). In regards to Center-Based and Group-Based Employment, 11% wanted Center-Based and Group-Based Employment to teach a larger variety of skills that could be transitioned into a more normal employment. Additionally, another 9% of the responses expressed dissatisfaction with the work options and wanted more real-work (not practice work) which would also pay a higher salary (see Table 5).

As seen in Fig. 6, 53% of participants had used VR services (Work Adjustment Training involves individuals working at a training site in order to develop positive work habits and Supportive Education provides assistance in post-secondary education and training). The most commonly used services were Vocational Evaluations (26%), Psychological Evaluations (22%), Work Exploration (18%), Functional Capacity Evaluations (11%), and Work Adjustment Training (10%). Additionally, 47% of respondents said they had never used any VR services and 6% said they had applied for VR services but had been denied. Only 9% (n = 15) of those who used VR services said that the service(s) they received helped them find a job and 11% said that VR services helped somewhat in finding a job, whereas 80% of those receiving VR services stated that VR services did not help them find employment (Fig. 7). The participants who did find a job with VR’s help were satisfied overall with the job they found, with 74% saying they were either “Satisfied” or “Very Satisfied”.

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Fig.6

Percent of Respondents that Used Different VR Services. 47% of respondents did not use any VR services.

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Fig.7

VR’s Help in Finding a Job.

As seen in Fig. 8, Assistive Technology received the highest rating (4.2), whereas other services were rated significantly lower, with the lowest scores for Vocational Evaluations (2.4).

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Fig.8

Satisfaction with VR services, on a scale of 1 (poor) to 5 (excellent). Data points represent averages and standard deviation.

Open-ended survey questions for VR services brought up similar concerns and suggestions as for DDD services (see Table 6). The largest percentage of the 74 open-ended responses called for a need to increase and/or improve VR services (24%). Many responses were unsatisfied with the support they got from different VR services and felt that the VR services were either not helpful or not consistent. Others asked for increased support from VR, be it through more individualized assistance or even just more resources for caregivers. The next most common recommendation was the need for ASD trained staff that are able understand the needs specific to people with ASD (20%). Many participants discussed Psychological and Vocational Evaluations, with 19% of suggestions asking for improved evaluations, better evaluators, or quicker and more effective results. Additionally, 11% expressed a need for better job placement and a higher diversity of job opportunities and 8% talked about being underemployed and/or being placed in jobs below their ability level. Those participants that used VR’s Supportive Education asked for further education assistance such as academic support to be successful in school, and post-education transitioning to work (5%).

Our survey found that unemployment was 40%. It is important to note though, that our survey responses were limited to those with jobs or looking for work, and was not intended for those in day programs (non-vocational); we estimate that including participants in day programs would probably raise unemployment rates to roughly 60–70%. This would be similar to the results from another vocational study in 2012 that found a 70% unemployment rate when they included those in day programs and sheltered settings (Taylor & Seltzer, 2012). Future surveys can include individuals in day programs, but the focus of this survey was on barriers to employment and employment services.

The low number of work hours reported in our survey is somewhat higher but still consistent with previous studies (Roux et al., 2015; Taylor & Seltzer, 2010; Cimera & Cowan, 2009; Cimera, Wehman, West, & Burgess, 2012). Our survey indicates that higher work hours are primarily desired by those working the fewest hours, but those working 40 or more hours/week want to work slightly less. So, the low number of work hours is partially due to lack of availability, but also partly due to a desire to work somewhat less than 40 hours/week.

The major barrier to employment that we found was being unable to get past interviews (59%), followed by not knowing what jobs to apply for (39%) or what they wanted to do (22%), having difficulty keeping a job (22%), and not having proper transportation (28%). The problem with interviews is expected to be due to the core deficits of communication and social understanding in adults with ASD. The lack of knowing what jobs to apply for and what type of employment they wanted may be due in part to a lack of social networking, since many jobs are found through friends/colleagues, and adults with ASD usually have a very limited social network – this is a problem area that needs further research. The problem with transportation is probably due to a combination of either lacking the skills to use public or personal transportation, or limited finances which require the use of public transportation which may be much slower – this area also needs further exploration. Another common barrier cited by respondents was lack of work experience, a problem also found by Roux and colleagues who found that 42% of young adults with ASD never work between high school and their early 20 s (Roux et al., 2015).

Regarding DDD services, some services (Group-Supported Employment and Employment Support Aide) were well-rated by clients, but other services had significantly lower ratings. It appears that DDD clients were generally able to find placement in Center-Based and Group-Supported Employment, as no concerns were mentioned regarding lack of positions.

Regarding VR services, Assistive Technologies was well-rated by clients, but other services had significantly lower ratings. Despite reasonable ratings of most VR services, those services rarely resulted in placement in a job. Of the participants that used VR services, 43% mentioned a need for more VR services in their open-ended response. Their comments especially highlighted a need for increased job coaching and made it appear that improved services are needed to increase job placement and job maintenance. This is consistent with other studies of VR services not being very effective for helping individuals with ASD to find employment (Lawer et al., 2008; Cimera, Wehman, West, & Burgess, 2012).

It is interesting to compare our results to the National Autism Indicators Report: Vocational Rehabilitation (NAIR-VR) by Roux et el. in 2016 which reported that 60% of VR service users with ASD left VR services with a job. It is important to note that they only included data from those VR service users who had their cases closed between October 2013 and September 2014. But, for example, in Arizona the report said there were 142 VR service users with ASD whose cases closed in 2014, but through contact with VR ourselves, we know that in 2016 there were 1,206 people with ASD served in Arizona. If there were in fact only 142 with closed cases, and the NAIR-VR reported that 51% in Arizona left with employment, then out of the 1,206 people served only 6% of them left VR services with jobs that year (Roux, Rast, Anderson, & Shattuck, 2016). The data from the 2016 NAIR-VR combined with our data suggests that VR services require many years of service before about half of individuals eventually find employment, and our data suggests those jobs are mostly found without the direct help of VR. The median wages that NAIR-VR found in Arizona ($8.25/hour in unsupported-employment and $7.97/hour in supported employment) are somewhat lower than our numbers ($16/hour in unsupported-employment and $9/hour in supported employment) but these are people just starting in entry level positions, and it shows that people leaving VR are receiving low salary entry level positions (Roux, Rast, Anderson, & Shattuck, 2016).

After a thorough analysis of our survey results and participant comments and suggestions, our research team developed the following list of recommendations.

Pre-Interviewing: The largest barrier to employment cited in our survey was difficulty with interviewing. We recommend that job coaches do a pre-interview with employers, to explain their client’s strengths and weaknesses. This has also been recommended by Müller et al. in 2003 and Nicholas et al. in 2016 (Müller et al., 2003; Nicholas et al., 2016). Additionally, we recommend that job coaches coordinate role-playing mock interviews for their clients in order to familiarize them with the process and to give them feedback for real interviews.

Overall, although unemployment and underemployment are currently major problems for adults with ASD, we believe that implementation of our recommendations will significantly help reduce their barriers to employment and significantly improve their vocational status and hence their quality of life.

Conflict of interest

None to report.