VOCATIONAL SUPPORTS FOR INDIVIDUALS WITH ASPERGER SYNDROME
Meeting the Vocational Support Needs of Individuals with Asperger Syndrome and
Other Autism Spectrum Disabilities
University of California at Berkeley and
San Francisco State University
Department of Special Education
San Francisco State University
Department of Special Education
Barbara A. Burton
University of California at Berkeley and
San Francisco State University
Department of Special Education
Gregory B. Yates
ASD Peer Liaison
Key Words: Asperger Syndrome, vocational supports, social supports, autism
Correspondence Address: Eve Müller, 4710 College Avenue, College Park, MD 20740, (301) 779-5171, firstname.lastname@example.org
The purpose of this pilot study was to seek consumer perspectives on strategies for improving vocational placement and job retention services for individuals with Asperger Syndrome and other autism spectrum disabilities (ASDs). For this purpose, 18 adults with ASDs were individually interviewed about their experiences within the workplace. Participants were asked to (a) describe positive and negative aspects of their vocational experiences, (b) identify major obstacles to successful employment, and (c) recommend appropriate vocational supports to be provided by vocational rehabilitation counselors, employers and co-workers. Qualitative analyses of the interview transcripts revealed a number of common experiences and concerns which suggest the needs of individuals with ASDs should be recognized as different from others with more generalized developmental disabilities and/or mental retardation.
Meeting the Vocational Support Needs of Individuals with Asperger Syndrome and
Other Autism Spectrum Disabilities
The purpose of this pilot study was to seek consumer perspectives on strategies for improving vocational placement and job retention services for individuals with Asperger Syndrome and other autism spectrum disabilities (ASDs). ASDs are characterized by significant social and perceptual deficits including (a) problems understanding social cues and facial expressions, (b) difficulty expressing emotions in conventionally recognizable ways, (c) inflexibility and discomfort with change, and (d) difficulty adapting to new tasks and routines. In spite of the fact that the majority of individuals with ASDs have no mental retardation, most report ongoing problems finding and maintaining jobs (Goode et al., 1994; Howlin, 2000; Lord & Venter, 1992; Nesbitt, 2000); and as a result of their difficulties understanding and responding appropriately to the social demands of the workplace, many continue to experience unemployment and underemployment (Nesbitt, 2000).
Although Asperger Syndrome and other ASDs are now estimated to affect between 1 in 500 (Bristol et al., 1996) and 1 in 100 individuals (Arvidsson et al., 1997; Wing, 1996), vocational support services for individuals with ASDs are virtually non-existent. Not only are state vocational rehabilitation programs rarely prepared to serve individuals with ASDs, but most individuals with ASDs – because they are not mentally retarded – are ineligible to participate in state and/or federally funded programs designed to assist individuals with other types of developmental disabilities. Although studies suggest that individuals with ASDs can experience success within the workplace given appropriate vocational supports (e.g., Howlin & Mawhood, 1996), the need remains for research identifying the types of supports that would most appropriately meet the unique challenges faced by individuals with ASDs. Extensive research suggests that vocational supports such as job development and on-site coaching (Kreutzer, Wehman, Morton & Stonnington, 1988), job-carving (Wehman, 1996), natural supports (Hagner, Butterworth & Keith, 1995), and other strategies have been helpful for individuals with other types of developmental disability. Little has been done, however, to determine whether or not the same or similar strategies would also benefit individuals with ASDs.
Based on the need for improved vocational support services for individuals with ASDs, as well as on recent recommendations that the voices and perspectives of individuals with disabilities be included as part of any intervention-oriented research design (Bersani, 1999; Meyer et al., 1998; Schwartz & Baer, 1991; Turnbull et al., 1998), this study addresses the question of appropriate vocational supports by interviewing 18 adults with ASDs about their experiences within the workplace. Participants were asked to (a) describe positive and negative aspects of their vocational experiences, (b) identify major obstacles to successful employment, and (c) recommend appropriate vocational supports to be provided by vocational rehabilitation counselors, employers and co-workers.
Criteria for participation in this study were as follows: (1) minimum 18 years of age, (2) self-reported difficulties with social cognition, (3) formal diagnosis of Asperger Syndrome or other autism spectrum disability or informal diagnosis of Asperger Syndrome based on DSM-IV criteria, (4) minimum one year in the workforce, and (5) no diagnosed mental retardation. Participants included 18 individuals who were selected to represent a wide range of ages, as well as diversity in terms of sex, education level, age when first diagnosed, and current employment status (See Fig. 1). Thirteen participants were formally diagnosed with Asperger Syndrome, two were informally diagnosed with Asperger Syndrome, two were formally diagnosed with high-functioning autism, and one was formally diagnosed with PDD-NOS. Participants were recruited via telephone calls and personal contacts. The research team sought nominations of potential participants by contacting families, teachers, therapists, and ASD and parent support groups throughout the San Francisco Bay Area. If nominees expressed a willingness to participate, researchers contacted them by phone to determine whether or not they met the general eligibility criteria and to answer any questions relating to the purpose of the study. All participants received a small honorarium for their time.
Data for this study were based on 18 semi-structured individual interviews. The interview protocol comprised a series of open-ended questions designed to elicit information relating to participants’ vocational experiences, barriers to success, and recommendations for improving job placement services as well as conditions within the workplace. After drafting a copy of the interview protocol, stakeholders (i.e., individuals with ASDs, parents, and professionals) were invited to provide input on the phrasing and sequencing of interview questions, and to comment on the social relevance of the study. Stakeholder recommendations were then incorporated into a final version of the interview protocol. Since several stakeholders suggested that participants would feel more at ease during their interviews if they knew what the questions were ahead of time, each participant was sent a copy of the interview protocol prior to his or her interview.
Interviews took place in locations of each participant’s choice (e.g., participants’ or researchers’ homes, small conference rooms at local universities, etc.). Each interviewee participated in one semi-structured interview ranging from one to two hours . Before each interview, participants were told that they were free to end the interview at any time, and that they could refuse to answer any questions that made them feel uncomfortable. Interviews were audio-taped and later transcribed verbatim.
Analysis of major and minor themes took place in two phases. The first phase of analysis involved the consensus-based development of a preliminary coding structure. Four of the most detailed interview transcripts were selected, and each member of the research team independently read the transcripts, identifying and labeling any statement pertaining to (a) positive or negative aspects of participants’ vocational experiences, (b) major obstacles to successful employment, or (c) recommendations for appropriate vocational supports to be provided by vocational rehabilitation counselors, employers and co-workers (Strauss & Corbin, 1990). The team then met to compare and consolidate findings, and to develop a preliminary coding structure – i.e., a master list of major and minor themes (Strauss & Corbin, 1990). Any differences of opinion were resolved via consensus. During the second phase of analysis, QSR NUD*IST 4.0 – a software program for the organization and coding of qualitative data – was used to refine the coding structure and complete the coding process for the remaining interview transcripts. The first author took primary responsibility for this second phase of analysis, and the rest of the team provided feedback as well as confirmation of coding accuracy. Major themes were identified as themes mentioned by at least 50% of participants (i.e., 9 or more), and minor themes were identified as themes mentioned by at least 25% of participants (i.e., 5 or more).
Once major and minor themes had been identified, researchers looked for possible cross-group differences. In other words, researchers sought to determine whether or not differences in participant characteristics – including age, sex, education level, age when first diagnosed, and current employment status – could be correlated to the presence (or lack thereof) of certain themes within interviews. QSR NUD*IST 4.0 was used to isolate participant responses according to each of these participant characteristics (e.g., female/male, early diagnosis/late diagnosis, employed/unemployed, etc.), and to look for possible cross-group variations in response patterns.
This study was carried out in response to a need articulated during the First Annual Symposium on Asperger Syndrome at San Francisco State University. The research team made a number of efforts to ensure the social validity of the study. In addition to including the input of individuals with Asperger Syndrome and other ASDs during design of the interview protocol, an individual with Asperger Syndrome served as one of the main members of the research team. Furthermore, following completion of the data analysis phase, a "member check" was held enabling participants to provide feedback on the accuracy of findings. Finally, based on recommendations from focus participants, plans are currently in place to incorporate findings from this study into a handbook for VR counselors, job coaches and employers on how to support individuals with ASDs in the workplace.
Findings yielded a number of themes, 14 major and 35 minor, common across participants (See Figure 2 for summary of themes). These themes can be divided into three major categories, based on the three focal questions guiding this study: (1) overview of positive and negative experiences within the workplace, (2) major obstacles to successful employment, and (3) recommendations for appropriate vocational supports.
Overview of Workplace Experiences
Four major themes emerged in response to questions relating to positive and negative experiences within the workplace: (a) diverse vocational interests, (b) patterns of unemployment and underemployment, (c) work as a generally negative experience, and (d) exceptions to the rule – i.e., the isolated positive experience.
Diverse Vocational Interests All interview participants reported having held at least one job, and the majority reported having held multiple jobs. Participants repeatedly used terms such as "hard worker" and "good worker" to describe themselves; and expressed pride in their precision, attention to detail, and technical skill. Furthermore, in spite of stereotypes suggesting that autistic individuals are only interested in working in technical fields – participants reported choosing from a wide range of career paths, reflecting a diversity of vocational interests. Among other things, participants reported having worked as salespersons, art teachers, masseuses, library assistants, data entry clerks, photographers, forest managers, accountants, laboratory assistants, mapmakers, marketers, appliance repairpersons, food service workers, accountants, contractors, and military personnel, in addition to having worked as software engineers and computer programmers.
Unemployment and Underemployment Almost all participants, however, also reported lengthy periods of unemployment and/or underemployment, as well as lack of opportunities for career advancement. In the words of one participant, "I spent much more time being unemployed than being employed altogether." In the words of another, "The years roll by, and I stumble from one job situation to another, and nothing consummated into a promotion or career type move." Another referred to his job history as "sparse," and a fourth as having a "pretty checkered work career."
According to several participants, having to account for histories of unemployment and underemployment – as well as experiences of being fired repeatedly from jobs – often made it difficult to find new jobs. This is because job opportunities and career advancement are generally predicated on previous vocational success. Because of uneven job histories, several participants expressed frustration at being placed in entry-level positions for which they were over-qualified. These participants had often prepared themselves for professional careers by completing graduate level coursework, yet found themselves working in food-services, or placed in low-level administrative or customer service positions doing simple, repetitive tasks.
Negative Work Experiences Almost all participants described the majority of their overall work experiences in negative terms. These negative experiences were frequently attributed to poor job matches, inadequate time to learn new tasks, lack of tolerance for difference within the workplace, and problems interacting with supervisors and co-workers – themes which will be discussed at greater length in the following sections of this article. Several participants reported that their repeated vocational "failures" resulted in financial hardship, feelings of depression and low self-esteem, and frustration at being unable to independently provide for themselves and/or their families.
Positive Work Experiences Although most participants were disappointed with their overall experiences of finding and maintaining jobs, however, most also reported isolated instances of vocational success. These successes were attributed either to participants having fortuitously found good job matches (e.g., positions which exploited participants’ technical or mechanical skills but did not require a great deal of social competence), or to tolerant supervisors and co-workers who were willing to accommodate participants’ differences. Several participants described supervisors who seemed to have a natural talent for building on their employees’ strengths; and co-workers who were warm and open, in addition to being willing to assist participants in learning new tasks.
Obstacles to Successful Employment
Obstacles to successful employment were grouped into four major themes: (a) mastering the job application process, (b) acclimating to new job routines, (c) communication, and (d) navigating social interactions with supervisors and co-workers.
Job Application Process The majority of participants reported having difficulty with one or more aspects of the job application process. For instance, some participants reported difficulties creating resumes – in particular knowing which experiences and skills to highlight, and the degree of detail to provide. Individuals with ASDs often describe themselves as getting bogged down in the minutiae of a project, and finding it difficult to grasp the ‘big picture’ – characteristics which can make resume construction a daunting task. For similar reasons, several participants also reported difficulties filling out job applications. One participant described having difficulty figuring out "what [employers] wanted" from her, and another described realizing he had "answered [the employers’] questions in too much detail."
Several participants also reported difficulties with contacting potential employers by phone, as well as being interviewed for jobs. Individuals with ASDs often describe telephone conversation as a particularly taxing form of communication, and one participant described getting so nervous about making phone calls, that he would avoid making them if at all possible. This significantly reduced the number of jobs for which he could apply. Other participants felt that their job opportunities were limited by the fact that they interviewed poorly – i.e., they reported feeling awkward or tense, and often did not know how to answer interview questions directly. This was somewhat analogous to the problem of putting together a resume, as participants were frequently unsure how much detail to provide. For instance, when asked to provide a brief summary of relevant work experiences, one young man launched into a lengthy monologue enumerating every job he had ever had. On the other hand, two participants felt that job interviews were relatively easy compared to the types of complex social interaction required on the job itself.
Finally, a number of participants described difficulties coordinating the job search process as a whole – i.e., knowing how to begin looking for a job, how to initiate job contacts, and how to follow-up on contacts once made. In the words of one participant, the main problem was "organizing, and starting, and knowing how to go about it." Again, participants related their difficulties to certain cognitive traits associated with ASDs – specifically difficulties prioritizing tasks and initiating activities.
Acclimating to New Job Routines A second major theme was that of habit formation. Individuals with ASDs have difficulty adapting to novel situations and routines, and often tend to shy away from new experiences because they find them both emotionally and cognitively taxing. Although individuals with ASDs are perfectly capable of learning new tasks, it often takes longer – and requires more intentional effort – than it would for a person without ASDs. Not surprisingly, almost all participants described problems adapting themselves to new job routines. Two participants described their difficulties in the following words:
"I think probably one of the biggest problems I have is habituation or lack thereof. I just don’t habituate at the same speed other people do."
"After a while I finally learned [the job tasks] proficiently, but it took me a hell of a lot of time, and very specific effort."
Furthermore, the majority of participants worried that supervisors and co-workers – who were usually unaware of participants’ diagnoses – would be critical of the fact that they needed additional time to learn new tasks. As two participants reported:
"Sometimes it can feel kind of awkward when you’re taking a little bit more time to do something, to go through something that other people have gone through faster. And you don’t know how your supervisor is going to react to that. When I first started out, I wasn’t that fast at all."
"In a couple of my earlier jobs, my boss was very impatient with me for being fairly physically inept, and very slow to learn physical skills and manual skills."
Several participants reported that their inability to learn quickly ultimately led to their being fired, and several others reported having been warned by their bosses that they would be let go if they didn’t pick up the pace.
Communication A third major theme was communication. Individuals with ASDs frequently have difficulty processing incoming information, particularly when spoken rapidly. Furthermore, they often have difficulty "reading between the lines" and uncovering the implicit as well as explicit meanings of a message. As a result of these communication difficulties, the majority of participants described incidents wherein they had failed to understand instructions, and had therefore been unable to properly complete their work. Repeated miscommunications often led to poor work evaluations and/or being fired from the job. Ironically, when participants requested clarification from supervisors or co-workers, they were often reprimanded for asking too many questions, leaving participants in a sort of "catch-22" situation. For instance, one participant’s supervisor refused to believe that his questions were genuine, and instead accused him of "challenging his authority."
Navigating Social Interactions The most frequently mentioned obstacle to vocational success – and the obstacle about which participants spoke most eloquently – was the inability to master the social demands of the workplace. ASDs are almost always characterized by difficulty navigating social situations. For instance, participants described having difficulty reading facial expressions and understanding tone of voice, knowing whether someone was teasing or being sarcastic, gauging the appropriate time to conclude a conversation, and understanding the purpose of casual workplace chit-chat. One participant described having a nagging feeling that a "whole social world was happening all around" him which he was unable to understand or take part in. Another participant tried to describe the perplexity he felt in the face of most workplace social situations:
"I look at my friends who work at workplaces, and to me they’re like social geniuses. I feel like somebody who’s had a stroke and forgotten how to walk. You know, that’s the closest metaphor I can get. You know, imagine if you’re doing this thing that’s completely natural to you. You have a stroke and you can’t walk anymore. Or you can’t speak. You have to learn all over how to do that again. That’s sort of the closest analogy I can come up with for lacking any social skill."
This inability to make sense of social situations resulted in most participants’ describing themselves as "odd," or "different from anybody at the workplace." As one participant put it, "More often than not, I’ve been regarded… as a round peg in a square hole or vice versa." While some participants were able to tolerate the experience of being socially "different," the majority of participants reported that their social deficits led to isolation and alienation in the workplace. One participant described feeling "a certain sort of stigmatization," and another described being "scorned" by co-workers.
Most participants expressed an awareness that vocational success frequently depended not only upon the ability to meet the technical requirements of the job, but upon one’s ability to "fit in." As two participants reported:
"I excelled at the work, but keeping the military image – the persona they wanted – I didn’t do. Somehow I just didn’t have an understanding of … the socialization part. I think I was missing something."
"I don’t know why I couldn’t keep my jobs…. The real point of it is that I can’t feel out a social situation well enough to figure out what [my co-workers] want in terms of personality, and then give them that, so I can keep my job."
Significantly, participants recognized that their social deficits often kept them from succeeding at their jobs – even when they were fulfilling their job descriptions in all other respects.
Recommendations for Vocational Supports
Recommendations for vocational supports were grouped into five major themes: (1) job matching, (2) individualized ASD-specific job supports, (3) communication supports, (4) autism awareness training, and (5) attitudinal supports.
Job Matching Almost all participants emphasized the importance of finding a job that was a "good match," and stressed the need for vocational rehabilitation counselors to learn how to develop jobs appropriate for individuals with ASDs. For many participants, job matching meant finding (or creating) jobs that took advantage of the skill/deficit profile associated with ASDs. Characteristics of a good job match were grouped into the following five minor themes: jobs which (a) built on technical skills – particularly savant skills or special interests/obsessions relating to ASDs, (b) required minimal social skill, (c) followed clearly defined routines, (d) allotted adequate time for learning new tasks, (e) did not result in excessive sensory stimulation, and (f) allowed for flexible work schedules.
Several participants recommended that individuals with ASDs be assisted to find jobs that take advantage of the mathematical, mechanical, visual/spatial, and object-oriented skills often associated with ASDs. For instance, reflecting on her vocational success as an accountant, one participant reported, "I’ve been somewhat fortunate in that the area that I chose to work in is dependent upon technical understanding." Another participant reported that working as an assistant art teacher had conveniently dovetailed with her strong visual and compositional sensibilities. Other participants pointed to the fact that many individuals with ASDs have particular savant skills or "obsessive" interests that could be put to good use in appropriate vocational contexts. In the words of one participant:
"People on the ASD continuum – each one of us has a certain savant skill or collection of savant skills, and if we were allowed to, encouraged to indulge that vocationally to our heart’s content… we could come up with some amazing solutions for various workplace problems."
For other participants, a good job match meant finding a job that required minimal social interaction. For one participant, this meant starting his own business as a self-employed handyman, thereby "circumventing the social aspects of the job world – which has always been a major stumbling block." For other participants, this meant finding jobs that did not require regular interactions with customers or clients. Several participants stressed the importance of finding jobs wherein they could work semi-autonomously – i.e., without needing to check-in regularly with supervisors or interact continuously with co-workers. Significantly, one participant suggested that social interactions were not in and of themselves a problem so long as interactions remained "concrete" in nature. For her, working as an accountant meant that interactions were limited to discussions of materials and costs, and tended to follow a familiar script.
Participants also suggested that a good job match had to do with job structure. Several stressed the importance of finding jobs with clear and consistent daily routines. For instance, one participant described his job in the military as "comforting" because in his words, "I knew what my job was – what my duties were." For many participants, the ideal job was one that remained much the same from one day to the next, where tasks – once learned – were repeated again and again. As one participant described it, the ideal job does "not constantly [require] new unexpected things." For several participants, clear job structure also meant performing tasks one at a time and did not require ‘multi-tasking.’ In the words of one participant: "My task orientation or task performance tends to be sort of seriatim – it’s sort of one thing at a time." Significantly, although participants frequently sought structure and sameness in their work, they also wanted to feel intellectually challenged by their jobs, and recognized that this was often a difficult combination to find.
Because of difficulties with habit formation, participants agreed that jobs that were good matches for individuals with ASDs would necessarily allow sufficient time for employees to learn new tasks. In the words of one participant, the ideal job "gives you a chance to learn [new] things, rather than being in a pressure situation where you have to learn instantly." Another participant who worked in the fast-food industry described the difficulty she had replacing an old routine with a new routine. She was particularly grateful for the fact that her boss was both patient and understanding, and took the time to accommodate her learning needs.
Although not all participants reported that this was a problem for them, another theme relating to job matching had to do with work environments that resulted in sensory over-stimulation. In the words of one participant, "I don’t particularly like a lot of noise and crowds and business." Individuals with ASDs tend to be highly sensitive to visual, auditory, and tactile stimulation. Consequently, several participants reported they were more able to work productively if there was minimal ambient sound, natural or incandescent rather than fluorescent lighting, and a calm and tranquil workspace without a lot of distractions.
The final feature of a good job match was described as a flexible schedule. Several participants reported that a full-time job placed too much pressure on them, and another participant described how his levels of productivity would often range dramatically from high one day to low the next. Several participants described themselves as slow but steady workers – and as one participant put it, longed "to find a work environment that could sort of fit that somehow."
ASD-Specific Supports A second major theme was the need for vocational rehabilitation (VR) counselors who were trained to provide individualized ASD-specific supports. The majority of participants expressed dissatisfaction with services they had received from the Department of Vocational Rehabilitation, and reported that the services they had received were neither adequately comprehensive nor tailored to meet the unique needs of individuals with ASDs. Recommendations for ASD-specific supports were grouped into the following four minor themes: (a) assistance with the job search process, (b) on-site job-coaching, (c) facilitation of social interactions, and (d) mentoring services.
Participants stressed the need for assistance with the job search process, and recommended that VR counselors not only direct individuals with ASDs to job listings, but assist them in contacting employers, following up with employers, and ensuring that work sites were appropriate matches for individuals with ASDs. Several participants suggested it would be useful if VR counselors were familiar with job sites, understood the actual requirements of specific jobs as well as the climate of the workplace, and had assessed the degree of tolerance and openness to diversity among supervisors and co-workers. One participant recommended that VR counselors have "in-depth knowledge of what the [job] is like…what the expectations are, all that. Instead of like, ‘Okay, go out and find a job now.’" Another participant described the ideal role of the VR counselor as "building some bridges [individuals with ASDs] might not have been able to build themselves" – in other words, serving as the connecting link between individuals with ASDs and potential employers. Finally, participants stressed the importance of assisting with organizing the overall job search process. In the words of one participant, it would be good to have someone "take care of the many administrative details that were involved in searching for a job," including assistance putting together a resume and tailoring it to specific jobs, helping prepare for interviews, etc. One participant, for instance, suggested that VR counselors could help individuals with ASDs prepare for interviews by holding faux job interviews prior to the actual interview.
Participants also stressed the importance of continued support from VR counselors once individuals with ASDs had been hired – particularly in the first few weeks of a new job. Some participants described an actual "job coach," someone who was regularly on-site at least part of the time to help ensure a smooth transition. For instance, the job coach could provide extra job training assistance – reviewing the protocol for completing tasks, helping the individual with ASDs master each component of the job, etc. Others described someone who assumed a less conspicuous role, but was nonetheless available to field questions and trouble-shoot difficulties as they arose. For instance, several participants felt strongly that they would not have been fired from their jobs if someone had been available to advocate for them, and help clear up misunderstandings.
One domain where participants felt assistance would be particularly useful was in negotiating difficult social interactions. Several participants described a job coach-type figure who would be able to "translate" for the individual with ASDs. In other words, they felt they needed someone to help them understand how supervisors and co-workers think and communicate on one hand, and to help employers and co-workers understand how an individual with ASDs thinks and communicates on the other. As one participant described, "I didn’t know there were problems until they blew up in my face." Another participant described thinking he had been fired, when he had only been suspended. A "translator" would facilitate communication between an employee with ASDs and his or her supervisor, helping to ensure that both parties are fully aware of where the other party stands.
Finally, several participants suggested that a mentorship program would be helpful – i.e., a program run by and for individuals with ASDs that would link less vocationally experienced individuals with more experienced mentors. Participants suggested that such a program would be useful because mentors could help novices prepare for and negotiate the types of challenges that arise in the workplace that are specific to ASDs.
Communication Supports Most participants stressed the importance of clear communication in the workplace. Because individuals with ASDs often have difficulty reading subtle communication cues, participants felt that it was particularly important that supervisors and co-workers be explicit in order to prevent miscommunication. One participant defined what clear communication meant to him:
"Say specifically in words – no hidden meaning stuff, no in-between-the-lines stuff…. And give good details. You’ve got to have details specifically. We’ve got to have things broken down. And when we have things broken down, then we do great."
A number of participants reported frustration at the fact that supervisors – perhaps out of a desire to be polite – often expressed themselves indirectly and expected participants to second-guess their real meanings. Guessing the intentions of others is extremely difficult for individuals with ASDs, and the majority of participants stressed their preference for direct, even blunt, communication. One woman, for instance, appreciated getting regular bi-monthly evaluations because it helped her understand what parts of her work she was doing well, and what parts of her work could be improved. Without explicit feedback, she reported having no idea "where [she] stood."
Participants also recommended that supervisors avoid giving vague or partial instructions regarding the performance of tasks. As one participant explained, "[People with ASDs] are going to need: First you do ‘a,’ then you do ‘b,’ then you do ‘c.’" Another participant suggested that – because prioritization does not come naturally for many individuals with ASDs – supervisors need to be explicit if certain tasks or components of tasks are more important than others:
"As far as prioritizing – if it’s more important to get this right than to get that right, tell them that. Because if you don’t tell them that, they’re going to be confused…. Tell them that. Out loud. Totally spell it out."
Finally, several participants stressed that supervisors and co-workers should not just explain how to do things, but should also show individuals with ASDs how to do things. The more visual and hands on, the better. Furthermore, a number of participants recommended the use of written instructions as a supplement to oral instructions. In the words of one participant:
"I think writing out the instructions of what [the supervisor] wants done. That’s a biggie. If [he] writes it out – ‘this is what has to be done’ – you’re not wondering if there are any loose ends, which was a constant problem for me."
Significantly, according to several participants, a supervisor’s willingness to use multiple modes of communication – i.e., speech, writing, and modeling of behavior – often helped get the message across more clearly than simply using one mode or another.
Autism Awareness Training Another major recommendation was autism awareness training. Most participants reported disappointment with existing levels of knowledge about ASDs among members of the public – and particularly among VR counselors. As one participant put it:
"I think that this would be of paramount importance for [VR counselors] to have that training…. There’s nothing that could substitute for that. And they should get the training before they have occasion to run into somebody like that. They may not be prepared for it if they haven’t had any prior training at all."
Participants felt that autism awareness was key not only for VR counselors, but also for employers and co-workers. According to several participants, communication breakdowns and firings could often be averted if supervisors had a better understanding of ASDs. For instance, one participant explained that it would be useful for his supervisor to know more about ASDs, because then – instead of being perceived as rude or aggressive – his supervisor would realize that he was merely being unintentionally blunt.
In terms of educating the public, several participants reported having taken the matter into their own hands. One participant disclosed the fact that he had Asperger Syndrome to all of his co-workers, and distributed an article on Asperger Syndrome to help them better understand who he was and why he behaved the way he did. Another individual described educating his job coach about ASDs, because his job coach had never met anyone with Asperger Syndrome, and was therefore unaware of the types of vocational challenges unique to this population.
Attitudinal Supports Finally, the majority of participants stressed the importance of attitudinal supports for vocational success. Several participants – in describing their vocational successes – described work environments where co-workers were open-minded and tolerant of differences. Many described relationships with supervisors and co-workers who were "patient," "caring," and "supportive," and one participant described a positive relationship with a co-worker in the following terms: "This one woman, she has kind of taken me under her wing in a most unassuming fashion." Although attitudinal supports were not in and of themselves enough to guarantee vocational success, the attitudes of supervisors and co-workers clearly had a powerful effect on participants’ perceptions of themselves as part of the workplace team.
No significant thematic differences appeared to be correlated to participants’ sex, educational level, or employment status. However, certain cross-group differences did appear to be related to age and/or age of diagnosis. These characteristics were themselves correlated, since younger participants were more likely to have received accurate and timely diagnoses. Older participants, on the other hand, often went undiagnosed until much later in life (See Fig. 1 for ages and ages of diagnosis).
Younger participants (under the age of 30), and individuals who were diagnosed with ASDs while still in school, tended to have fewer negative work experiences. They were also more likely to have received the benefits of special education services, and therefore to have felt entitled to vocational support services following graduation. Because of the higher level of autism awareness among this younger group of participants, these participants tended to have had more positive overall work experiences (often having been placed by transition teachers who were particularly sensitive to their needs), and to have a more positive outlook relating to their career options. Furthermore, younger participants were more likely to have reported receiving adequate supports from VR counselors and job coaches. These cross-group findings suggest that although job supports for individuals with ASDs are still far from adequate, things are improving. Younger participants are not only confident of their abilities, but also aware of their diagnoses, conscious of the types of obstacles they face in finding and keeping jobs, and willing to seek out and demand the vocational support services to which they feel entitled. Furthermore, these findings suggest that VR counselors and job coaches may be more aware than they used to be of ASDs and the unique vocational challenges faced by individuals with ASDs.
Results of this study should be interpreted with the following limitations in mind. First, participants were all recruited from a single geographical region – the San Francisco Bay area. It is possible that findings may not generalize to areas with significantly different demographic characteristics – for instance rural and suburban communities as opposed to major metropolitan areas, etc. Furthermore, participants were all of European descent, and were therefore relatively ethnically homogeneous. It is possible that if individuals from other ethnic backgrounds had been recruited, they would have reported additional challenges such as stigmatization or discrimination based on race.
Results of this pilot study suggest that individuals with ASDs require somewhat different vocational supports than those currently being recommended for individuals with other types of developmental disability and/or more generalized mental retardation. Although many of the vocational supports recommended by participants were similar to strategies considered best practices for individuals with other types of developmental disability – specifically the individualized services of a job-coach – participants in this study emphasized vocational supports that would address their unique difficulties with social cognition and habit formation. Furthermore, they stressed the importance of job matches that not only accommodated ASD-related weaknesses/deficit areas, but also exploited individuals’ ASD-related strengths.
Based on focus participants’suggestions, it is recommended that the job coach be someone who will not only help individuals with ASDs navigate each step of the job application process, but will also be available on an as-needed basis to assist individuals with ASDs in understanding and handling the nuances of routine workplace social interactions; monitor work-related communications; and explain to bosses and co-workers the importance of expressing themselves clearly and directly. A job coach serving individuals with ASDs should be able to provide social skills training tailored to meet the needs of particular individuals as well as specific work sites. The job coach should know how to analyze the unique "culture" of each workplace and identify the types of social competencies that would be most helpful for individuals with ASDs to acquire – e.g., knowing whether it is necessary to ask work-related questions during formal meetings with the boss or if it is okay to ask questions as they arise; knowing how to interpret indirect feedback on job performance; and being able to engage in "water cooler chit-chat" with co-workers. Furthermore, the job coach must be able to provide explicit instruction in these areas – spelling out the way in which bosses’ and co-workers’ body language, tone of voice, and facial expression communicate subtle, albeit important, messages. If job coaches are unable to provide this type of explicit social skills training, they should make appropriate referrals to local ASD professionals.
Focus participants also mentioned habit formation as a particular challenge for individuals with ASDs in the workplace. Unlike individuals with mental retardation, individuals with ASDs are frequently capable of performing extremely complex work-related tasks. Like individuals with mental retardation, however, individuals with ASDs often require intensive one-on-one instruction, as well as lengthy practice sessions, before they are able to complete work-related tasks independently and efficiently. Consequently, we recommend that job coaches be skilled in task analysis – i.e., know how to break larger tasks into smaller, more manageable parts. Written instructions can also be useful in helping individuals with ASDs memorize the order in which to complete parts of tasks. It is expected that job coaching services for individuals with ASDs would initially involve more energy and resources "up front," but once tasks have been mastered, would be considerably less intensive.
Findings also suggested that vocational support services for individuals with ASDs should not just make-up for social and cognitive deficits, but should also take advantage of the skills or "benefits" associated with ASDs. Most participants – while painfully aware of the challenges associated with ASDs – also reported feeling a certain pride in their ASDs. They felt, however, that Vocational Rehabilitation and other job placement services rarely tapped into the strengths of ASDs, and tended instead to treat ASDs as merely one of many possible disabilities. Job matching should not merely involve the identification of jobs with minimal client contact, but should also identify jobs which exploit individuals’ areas of strength – e.g., software design or editorial tasks which require painstaking attention to detail. Passionate interests should also be explored – i.e., job placement services should seek to identify individuals’ interests in animals, numbers, transportation services, photography, books, computers, etc.
Significantly, participants’ isolated experiences of success in the workplace suggest that with minimal resources and supports, positive vocational outcomes are indeed possible. The importance of a good job match cannot be underestimated. For instance, one participant described satisfaction with her current job as a corporate accountant, explaining that the job was a good match for her because (a) it took advantage of her obsessive attention to detail, and (b) social interactions were infrequent, and when necessary followed a predictable script. Another participant attributed a particularly successful job experience doing data entry to the fact that (a) his boss took the time to sit down and clarify her expectations using clear and explicit language, as well as to provide regular feedback on his performance; and (b) his co-workers were tolerant of his social shortcomings, and willing to assist him when necessary in getting the job done.
These isolated success stories suggest that if more intensive configurations of support could be offered at times of new job placements and critical transitions, individuals with ASD are likely to exhibit remarkable degrees of independence and competence. Although individuals with ASDs are capable of vocational success, however, the odds are stacked against them as long as appropriate vocational supports are in short supply. All participants reiterated the need for the Department of Vocational Rehabilitation to provide ASD-specific supports, and to contract with external agencies if necessary. Only via improved services did participants feel they would have better success at finding and retaining jobs.
This study has drawn on the perspectives of adults with ASDs in an effort to better understand the strategies necessary for improving workplace outcomes. Whenever possible, we have sought to describe experiences, obstacles, and recommendations for improved vocational services in participants’ own words. Members of the research team were repeatedly impressed by the extreme thoughtfulness of participants, their abilities to clearly articulate both negative and positive aspects of living and working with ASDs, and the level of creativity that went into their recommendations for improved vocational supports. The results of this study strongly suggest that individuals with ASDs should be included in future research efforts to define appropriate vocational interventions. Future research efforts would also benefit from including the voices of employers, VR counselors, and job coaches.
Special thanks are due to all of the individuals with ASDs who shared their experiences and perspectives with us – as well as members of the AUTASTICS (a San Francisco Bay Area support group for adults with ASDs), and ASSCEND (a San Francisco Bay Area advocacy group made up of individuals with ASDs, parents, and professionals).
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