“He’s worth the extra work”: The employment experiences of adults with ASD who use augmentative and alternative communication (AAC) as reported by adults with ASD,family members,and employers

Abstract

BACKGROUND:

Employment is a key determinant in quality of life. However, less than 50% of adults with ASD are employed.

OBJECTIVE:

In order to better support community-based employment for persons with ASD who use augmentative and alternative communication (AAC), there is a need to better understand those situations in which successful outcomes have been achieved.

METHOD:

This study utilized a multiple case design to investigate the experiences of seven individuals with ASD who use AAC and are successfully employed in the community.

RESULTS:

Results provide evidence that individuals with ASD who use AAC can be successfully employed, when provided with appropriate supports. Expressive and receptive communication were commonly identified as challenges, however, mobile devices provided support to communication and participation for many of the participants with ASD.

CONCLUSIONS:

Results from the current study provide evidence that successful employment for individuals with ASD who use AAC is possible when intervention addresses three key areas: the development of skills that are valued in the workplace, the identification and creation of good job matches, and access to needed supports.

Keywords

Autism spectrum disorder augmentative and alternative communication transition employment

1. Introduction

Employment is a key determinant of quality of life; however only 25–50% of adults with autism spectrum disorder (ASD) are employed [1, 2]. Many of those individuals who are employed are described as “high functioning”, or as having Asperger’s Syndrome [2], and using vocal speech to communicate. The 20–30% of individuals with ASD who do not make use of speech to communicate, who are described as having complex communication needs [3], face additional challenges in obtaining and maintaining employment [4, 5]. Challenges with speech may exacerbate the communication and social interaction difficulties observed for persons with ASD in the workplace [1], as communication skills and the ability to maintain positive coworker relationships are among the employee skills most valued by employers [6] and coworkers [7].

The use of augmentative and alternative communication (AAC) is often recommended for those individuals for whom speech does not fulfill all of their communication needs [8 –10]. For persons with ASD, a wide range of AAC approaches have been demonstrated to provide benefit including: picture-based systems [11 –13], speech-generating devices, and sign language [14]. While there is some research evidence of successful employment for persons with ASD who use AAC, these individuals frequently experience difficulty in obtaining and maintaining employment [15, 16]. Traditional employment supports may provide some benefit, but additional intervention activities may be needed. For example, Migliore, Timmons, Butterworth, and Lugas [17] identified the provision of job placement services as the most significant predictor of vocational rehabilitation (VR) closure in competitive employment for individuals with ASD. Adults with ASD who require the use of AAC, however, are more likely to be denied VR support because their disabilities are considered too severe to be able to benefit from VR services[18, 19].

To address the challenges faced by persons with ASD and complex communication needs who are seeking employment, McNaughton and Richardson [5] suggested the importance of three key areas: supporting the individual with ASD in developing knowledge and skills that are valued in the workplace, identifying and creating good job matches, and ensuring that needed supports are provided in the workplace. To date, however, there is only a limited understanding of the importance of these factors as they relate to the actual daily experience of persons with ASD and complex communication needs who are employed. In order to better support community-based employment for persons with ASD who use AAC, there is a need to better understand those situations in which successful outcomes have been achieved. Additionally, perspectives of key stakeholders will help identify supports and barriers to employment. This study, therefore, addresses four major questions:

What jobs do individuals with ASD who use AAC hold as identified by individuals with ASD, their parents, and their employers?

What are the benefits of employment for individuals with ASD who use AAC as identified by individuals with ASD, their parents, and their employers?

What are the challenges to employment for individuals with ASD who use AAC as identified by individuals with ASD, their parents, and their employers?

What are the supports needed to obtain and maintain employment for individuals with ASD who use AAC as identified by their parents and their employers?

2. Method

2.1. Research design

This study utilized a multiple case design [20] to investigate the experiences of individuals with ASD who use AAC and are successfully employed in the community. Written questionnaires, as well as telephone and online interviews, were used to gather information from the individual with ASD, their parent, and their employer. Ethics approval was obtained from the Pennsylvania State University Institutional Review Board prior to commencement of the study.

2.2. Participants

2.2.1. Criteria for participation

The goal of the study was to obtain the perspectives of the employee (i.e., individual with ASD), the parent, and the employer on the employment experiences of the individual with ASD. Participants with ASD were selected based on the following criteria: (a) diagnosed with ASD per parent report, (b) aged 18 or older, (c) employed in a community-based setting, (d) used AAC, and (e) consented/assented to being interviewed and having their family member(s) and employer interviewed about their communication and employment. Family members were selected based on the following criteria: (a) aged 18 or older, (b) familiar with the employment activities of the participant with ASD, (c) functionally literate, and (d) consented to being interviewed. Employers were selected based on the following criteria: (a) aged 18 or older, (b) employed a participant with ASD in this study, (c) functionally literate, and (d) consented to being interviewed.

2.2.2. Recruitment

Participants were recruited using four techniques: (a) the Office of Vocational Rehabilitation (OVR) in all 50 states was asked to distribute author contact information to potentially eligible individuals and their families via phone or email; (b) the Assistive Technology Act Center in all 50 states was asked to post recruitment messages on websites, newsletters, and social networking sites; (c) autism specific organizations including: AutismSpeaks, Organization for Autism Research, Autism Society of America, The Autism Self Advocacy Network, Interactive Autism Network, Autism Science Foundation, National Autism Association, The Global Regional Asperger Syndrome Partnership (GRASP), and Eden Autism Services, were asked to post recruitment messages on their websites, newsletters, and social networking sites; and (d) the first author contacted known individuals to invite participation and/or nomination of a potential participant. All nominated individuals or their family members were contacted via email, which provided information regarding the current study and the contact information for the first author. All individuals who responded had the opportunity to ask and receive answers to their questions prior to providing informed consent. Any individual who responded and met inclusion criteria participated.

2.3. Materials

Participants received a questionnaire that was used to gather preliminary information about the participant, their relationship to the individual with ASD, and the communication profile of the individual with ASD. Although some items were common to all participants, other questions (e.g., job responsibilities) were specific to the participant group (e.g., employers). For those individuals with ASD who had difficultly completing the form independently, a proxy was permitted to answer the questions.

A semi-structured interview protocol that included questions related to the benefits, challenges, and supports for employment was developed. This format supported consistency in gathering information across participants and allowed for flexibility to explore insights and leads within individual interviews [21].

2.4. Procedures

Once informed consent had been obtained from all individuals, interviews were conducted first with the individual with ASD. The interview questions included both yes/no and open-ended questions, and therefore required access to a wide range of vocabulary in order to support accurate responses. If the individual with ASD did not demonstrate the ability to make use of an AAC system that provided access to over 100 vocabulary items (e.g., an alphabet-based AAC system, or an AAC device with over 100 vocabulary items), a modified Talking Mats procedure was implemented. Talking Mats is a low-tech, picture-based communication support designed to provide individuals with complex communication needs with a method to express their views on a specific topic. The individual with complex communication needs is provided with visual images (e.g., photographs) that represent vocabulary items (e.g., food items). The individual can then communicate preferences by sorting the pictures into groups of preferred items (e.g., placing them near an image of a smiling face) and non-preferred items (placing them near an image of a frowning face).

To introduce the Talking Mats procedure to the person with ASD, the investigator provided instruction in the use of the communication system (i.e., demonstrated and described how the images could be sorted). The first author then asked questions regarding preferences for food items and recreational activities for which a family member had previously reported information. If the individual with ASD used the Talking Mats to answer these questions in a manner consistent with the information provided by the family member (e.g., the individual identified pizza as a preferred food item and carrots as a non-preferred item), the Talking Mats system was used to gather information about work place experiences. In this step, the first author presented four pictures of work related items (i.e., money, work, people, place) and asked the individual to point to each item when stated. If the individual correctly pointed to the four items on request, the first author then selected one of the images (e.g., money) and asked the individual to communicate their opinion by placing the image in the preferred or non-preferred group (e.g., “Where would you put money?”). Of the seven participants, three did not demonstrate accurate responses to the questions regarding the images, so questions about employment were not used. Four participants did demonstrate an understanding of the images being used, and the expectations for the Talking Mats procedure, and therefore were asked questions about their employment. Their results are reported below.

Semi-structured interviews were conducted with family members and employers via phone at the participant’s convenience. Two separate semi-structured interview protocols were developed (i.e., one for parents and one for employers) with common questions relative to benefits, challenges, and supports as well as information about the job requirements and communication of the individual with ASD. Parent interview protocols provided additional questions to probe further into the major areas of interest.

2.5. Data analysis

Interviews with the individual with ASD were audio and video recorded, and analysis was conducted by reviewing the first author’s interview notes. The interviews with parents and employers were audio-recorded and transcribed verbatim. Participant responses and comments were then unitized according to Guba and Lincoln’s [22] definition of a unit as “the smallest piece of information about something that can stand by itself… interpretable in the absence of any additional information other than a broad understanding of the context of the inquiry in which it is carried out” (p.345). A total of 516 thought units were identified.

The second author then reviewed the thought units with the goal of identifying themes among the 21 participants. During this process, open coding was used, and words or phrases were assigned to the unitized datum with the goal of capturing the meaning of words or phrases in the transcripts [23, 24]. After an initial set of codes had been developed, the second author reviewed all coded datum and developed operational definitions for the codes. In this process, second order codes emerged, categories were collapsed, and theoretical terms were used as codes when appropriate. The second and third authors then used the codes and operational definitions to independently code 10% of the unitized datum. Codes and operational definitions were reviewed and modified, as necessary, by the second and third authors. Then the second author used the revised operational definitions to code the remaining thought units. The third author conducted inter-rater reliability checks as the second author completed significant milestones (e.g., after 100 thought units, after 200 thought units, etc.) in order to guard against intra-rater drift. A total of 120 thought units were coded by the second and third authors, with an agreement score of 82%. Any disagreements were resolved through conversation until a consensus was reached [25].

3. Results

The results are presented in this section, including the description of the participants and their employment activities, and the content as categorized under the three major coding themes: benefits, challenges, and supports.

3.1. Description of participants with ASD and their employment activities

The employed individuals with ASD ranged in age from 20 to 26 years old. Five participants were described as having some speech and two as having no functional speech; however, all individuals with ASD used AAC systems including picture communication books and mobile devices with communication applications for communication in the work environment. Additional demographic information for the individuals with ASD, presented using pseudonyms, is provided in Table 1.

Table 1
Demographic Information for Individuals with ASD

Name Age Communication Employment

Setting Schedule Duration Job Duties

Charles 24 Some speech, AAC app on mobile device Dry cleaning 20 hours per week 10 Customer service, clothes preparation

Daniel 26 Some speech, AAC app on mobile device Multiple sites (Cleaning company) 16 hours per week 12 Clears and prepares rooms for cleaning, cleans corners and stairs, runs buffer

James No functional speech, some echolalia AAC app on mobile device Grocery store 15 hours per week 18 Customer service, stocks shelves, labels products, cleans

Luke 23 Some speech, AAC app on mobile device Bookstore Part time (less than 30 hours) 6 Customer service, inventories books, cleans, straightens up gift section

Thomas 21 Some speech, AAC app on mobile device Butcher shop Approx. 40 hours per week 6 Customer service, cuts and packages meat, loads truck, cleans

Vince NR No functional speech, Communication book Gift shop 14 hours per week 12 Cleans, straightens shelves

William 20 Some speech, AAC app on mobile device Grocery store Part time (less than 30 hours) 18 Customer service, returns unwanted items, cleans register

Name	Age	Communication	Employment
Charles	24	Some speech, AAC app on mobile device	Dry cleaning	20 hours per week	10	Customer service, clothes preparation
Daniel	26	Some speech, AAC app on mobile device	Multiple sites (Cleaning company)	16 hours per week	12	Clears and prepares rooms for cleaning, cleans corners and stairs, runs buffer
James	No functional speech, some echolalia AAC app on mobile device	Grocery store	15 hours per week	18	Customer service, stocks shelves, labels products, cleans
Luke	23	Some speech, AAC app on mobile device	Bookstore	Part time (less than 30 hours)	6	Customer service, inventories books, cleans, straightens up gift section
Thomas	21	Some speech, AAC app on mobile device	Butcher shop	Approx. 40 hours per week	6	Customer service, cuts and packages meat, loads truck, cleans
Vince	NR	No functional speech, Communication book	Gift shop	14 hours per week	12	Cleans, straightens shelves
William	20	Some speech, AAC app on mobile device	Grocery store	Part time (less than 30 hours)	18	Customer service, returns unwanted items, cleans register

Note. Pseudonyms used for name; Age represented in years, duration represented in months.

The individuals with ASD were employed in a variety of community businesses, including both customer service (e.g., grocery store, book store, butcher shop) and cleaning service (i.e., commercial cleaning company) businesses. The duration of current employment ranged from six to eighteen months. Additional information about employment activities is provided in Table 1.

3.2. Benefits

The analysis of comments from all participants (i.e., persons with ASD, family members, and employers) resulted in the identification of benefits, defined as: positive outcomes resulting from engagement in an employment situation, including social, financial, familial, personal, psychological, or physical gains. These benefits are discussed below grouped by benefits to the individual with ASD, the family, the employer, and society.

3.2.1. Individual with ASD

Benefits to the individual, as reported by the parents and employers, were identified for four areas: social interaction, financial income, familiar routine, and personal satisfaction.

3.2.1.1. Social interaction.

Social interaction between the individual with ASD and co-workers, employers, and customers was the employment benefit reported most often by the parents. The parent of Luke stated, “He has made a lot of friends that he never had before.” Not only did participants make new friends, but they also developed these relationships over time. For example, Daniel’s parent noted, “He really likes his co-workers. He keeps asking them to go out for drinks. I sometimes wish he could spend more time with them. It’s really good for him to be ‘one of the guys”’. Although social interaction and opportunities for communication was seen as a long-term benefit, the employer of Luke described the immediate challenge that new social situations sometimes posed for the individual with ASD: “He (Luke) may not like it, but it’s good for him to be exposed to people and for them to be exposed to him”. Additionally, all four individuals who participated in the Talking Mats procedure identified people and place of employment as being liked.

3.2.1.2. Financial income.

Both the parents and employers discussed the financial benefit of employment for the individual with ASD with comments such as “He gets money … Seriously, he does make good money” (Employer of Daniel) and “Yes, the money is a good thing. He can buy things for himself” (Parent of Daniel). The mother of James confirmed the importance of this benefit saying, “He does enjoy the money. He enjoys saving it, which his father and I think is just wonderful. We encourage him to spend some of it when we go on vacation.” The parent of Charles added, “Being paid to do something you enjoy is great for anyone.” Lastly, three of the four persons with ASD identified money as liked using the Talking Mats procedure.

3.2.1.3. Familiar routine.

Both parents and employers described the benefit for the individual with ASD of regularly scheduled activities. The parent of Thomas stated, “He needed a job because he was getting bored at home. It’s important that he always has something to do.” In their responses, parents emphasized the importance not only of activity, but also of a consistent work schedule, and the ability to anticipate work activities.

3.2.1.4. Personal satisfaction.

Both parents and employers described their perception that the person with ASD liked his job, with comments such as, “ … he loves what he does. I think he gets a sense of satisfaction from his work” (Parent of James). This view was shared even for those with challenging schedules. For example, the parent of Thomas (who worked at a butcher shop with shifts starting as early as 4:00 am) commented, “He just loves to go to work, he’s always up before his alarm and he comes home happy.” Additionally, two of the four persons with ASD who used the Talking Mats procedure identified work asliked.

3.2.2. Family

Comments on benefits for the family included a break for caregivers, knowledge that the individual is safe and productive, and pride in the employment of the individual with ASD.

3.2.2.1. Break for caregivers.

For many families, the successful employment of the person with ASD allowed caregivers to have a “break”. This time was typically used for relaxation and rest, and/or for interaction with other family members (e.g., spouse, sibling). The parent of Thomas provided a humorous anecdote that described the often unspoken stress of caring for a family member with ASD and the benefit of a break, saying, “When he got a job, his sister said, ‘oh thank goodness–I don’t have to entertain him now.’ Well how does she think me and her dad felt?”

3.2.2.2. Knowledge individual is safe and productive.

A number of parents reported that the individual’s current employment gave them peace of mind, including comments that they worried less knowing that their child was safe, happy, and productive at the work setting.

3.2.2.3. Pride in the employment of the individual with ASD.

Three parents described a sense of pride regarding their child’s employment. Some parents commented about their success in instilling a work ethic in their children, while others discussed their pride in having provided the supports and instruction needed for their children to gain and maintain employment: “It was a parenting success for me. You know, other parents, they say their autistic kids can’t handle work. Look how impaired my son is, but he has a job. This is success for him, and for me” (Parent of Vince).

3.2.3. Employer

All parents and employers identified benefits to the employer. These comments focused on the benefits to the employer of gaining an employee who is dependable (e.g., hard working, punctual). Specifically, comments were made about the individual with ASD being on task and on time, and of a mutually beneficial work relationship.

3.2.3.1. Worker is on task.

All parents and employers described the individual with ASD as an on-task worker, using terms such as follows directions well, honest and focused, hard/dedicated worker, and a perfectionist who pays attention to detail. The attention to detail was exemplified in a story about Luke from his employer,

Most people just put the books back in the general genre, but not Luke. Luke puts them back alphabetically by author and makes sure the covers are all even. If he finds one on the shelf that’s out of place he puts it back.

3.2.3.2. Worker is on time.

Several parents and employers also described the person with ASD as an employee who was punctual and rarely absent. As the employer of Thomas reported, “he’s always here and always on time. He might start at four in the morning, but he’s going to be on time”. Other employers and parents confirmed this as well, emphasizing the punctuality (Employer of Vince) and low absenteeism (Parent of Daniel) of the person with ASD.

3.2.3.3. Mutual benefit.

A small number of comments about benefits to the employer were specific to a single parent or employer, and are reported here. These comments included having a likable employee and feeling good about helping out an individual with ASD. For example, “The girls like him. I think it’s good that we can do this. And the owner I think feels good that we are helping someone like that out … and he’s helping us out” (Employer of Charles).

3.2.4. Society

During the interviews, parents were directly asked about perceived benefits for society. Identified benefits included increased community awareness of ASD and individuals who use AAC. Additionally, the parent of Vince joked, “He’s not on welfare or anything so that’s good for taxpayers.”

3.3. Challenges

The second major theme, challenges, was defined as: any person, organization, situation, action or device that impedes an individual’s ability to participate in employment activities adequately or to the individual’s fullest potential and results in a negative employment (including social, financial, familial, personal, psychological or physical) situation. As with benefits, the analysis of participant comments resulted in the identification of challenges for the individual with ASD, the family, and the employer.

3.3.1. Individual with ASD

Both parents and employers commented on challenges for the individual with ASD including: participation in social interactions, expression of emotions and behavior, use of AAC technology, changes in schedules and routines, acquisition of new skills, and provision of employment supports.

3.3.1.1. Participation in social interactions.

Challenges associated with social interactions were described by both parents and employers including interactions between the individual with ASD and customers, co-workers, and employers. For example, sometimes the individual with ASD would not consider the perspective of others during an interaction–as the employer of Luke (who worked in a bookstore) described:

I had to teach him to say ‘come with me’ when people ask him about books. Otherwise he would just walk away from them in the middle of the store. He knew he had to look at the computer, but they didn’t know he had to look at the computer.

3.3.1.2. Expression of emotions and behavior.

Parents and employers discussed the difficulties the individuals with ASD had in expressing and regulating their emotions, and the impact this might have in the workplace. The parent of Daniel stated that his son (who works for a company that cleans offices at night), “ … has a lot of outbursts–he yells, cries, bangs his head. He doesn’t understand how to be around people,… How can someone hire someone like that?” The employer of Charles (who worked at a dry cleaners) expressed similar challenges with Charles’ behavior regulation, “He turns his head to the side a lot and hits his hands on the counter, (or) his leg. Not all the new customers really get him.”

3.3.1.3. Use of AAC technology.

Challenges reported by parents and employers in regards to AAC technology commonly related to time, including the time required to program the AAC device, and the time required for the individual to navigate within the device to locate desired vocabulary items. Additional challenges included non-functioning or uncharged devices. The employer of James recalled, “One time his iPad wasn’t working. He didn’t charge it. But when he didn’t have his iPad he stopped speaking too, so he didn’t even try saying the prices when he might have said them out loud before.”

Although six of the seven individuals with ASD had AAC systems that provided access to speech output, one individual (Vince) only had access to a picture communication book (i.e., pictures in a menu folder). From the employer’s perspective, access to speech (i.e., a tablet computer with an AAC app) would have been helpful for Vince; the employer commented, “Vince doesn’t work at the counter because he can’t talk … I wish he could talk. Can you help with that?”

3.3.1.4. Changes in schedules and routines.

One of the most frequently occurring challenges reported by employers and parents had to do with the strong preference of the person with ASD for consistent scheduling. The employer of William said,

We can’t change his schedule at all. Once a schedule goes up, he has to stay on the same shifts. We post schedules two weeks in advance so this is sometimes problematic. Even though he has open availability, he can’t switch shifts.

The employer of William went on to further elaborate on a specific instance when this challenge occurred,

He uses the calendar app in his iPad and when he realized it did not match the schedule on the wall he kept repeating “No” and showing us the schedule on his iPad. He couldn’t understand why they were different. He became very agitated.

In addition to changes in schedules, several participants noted how challenging it was to determine a schedule that worked for the individual. The employer of Vince described the challenge of implementing what she had thought would be a helpful change (i.e., a later start time):

Figuring out the proper schedule was hard. I thought he would want to work shorter shifts in the evenings. That didn’t work out because he was always tired and his mom had to bring him after [her] work and if they were late he would refuse to get out of the car.

Not specific to scheduling, but also a change in routine, included times when the store was out of a particular product or the equipment was not working. The employer of Thomas shared,

When we run out of stuff he hates it. He says “Doug” (Employer’s name) real loud and then repeats what the customer ordered. I say ‘we don’t have that right now. Check the case to see what we have.’ He just thinks if someone asks for something we should have it.

Similarly, the employer of Daniel discussed an instance of challenging behavior, “The same night the equipment malfunctioned … it threw off his schedule. He got so mad he hit his head on the wall. I actually texted his mom to come pick him up. It was just once that it was bad like that.”

Finally, routines and rules that were specific to the individual with ASD sometimes provided challenges in the workplace. The employer of Luke described a situation in which an accommodation that was allowed for Luke, but not other employees, created a challenging situation:

The other day one of the girls got in trouble for having her phone out at work. Then she looked straight at Luke and said ‘Too bad I don’t have autism, I could be talking with it or on it all day.’ I told her that was ignorant. She just kept complaining about the rules should be the same for everyone. Luke likes rules so he kind of agreed with her, I think. He wouldn’t take his iPod out the whole rest of the day, but that’s like not being able to talk at all. I told him the rule is you keep your iPod with you. He didn’t get that she was just being rude because she got in trouble. He thought he did something wrong.

3.3.1.5. Acquisition of new skills.

Just like starting any new job, the individuals with ASD had many new skills that they needed to learn. Several parents and employers commented about the individual’s difficulty in mastering the required skills. The parent of William described it this way,

He had to learn everything on the job. What’s a jicama? How many apples will tear the bag? Why can’t you put eggs on the bottom of the bag? How do I work a cash register? That was all so new to him.

James’ employer described similar challenges in providing training at the grocery store:

When I was training, the other manager told me that it ‘was hell’ figuring out how to get him to complete the tasks. It took and still takes a lot of work to get him to price things properly and stock them properly.

3.3.1.6. Provision of employment supports.

Employers and parents also commented on the perceived challenges for the individual related to gaining and maintaining employment opportunities. The first was the reported need for more academic skills. For example, Luke’s lack of money concepts, or inability to count change, precluded him from jobs such as operating the cash register at the bookstore. The next challenge was the family perception of limited outside support from the school or employment services for obtaining a job. Several parents expressed frustration with their experiences with school, including the parents of Thomas, whocommented

Schools don’t really get involved in that [helping to find a job] around here I guess … They just teach some life skills about what you do once you have a job. ‘Here’s how you make your bed after you can buy a house because you have a job’ is what they teach. They don’t teach how to get the job.

Lastly, parents expressed the need for accommodations and the difficulty in finding the right job. The parent of Daniel explained it this way,

We tried so many things. So many things that just didn’t work out. He tried different jobs at schools like working in the school store. Yeah, he did janitorial work too. Then he did vocational rehab and had placement working for (large retail chain). He was so overstimulated. He pinched himself and cried everyday. He went through 3 job coaches because there was so much staff turnover … It’s so hard for workplaces to accommodate Daniel’s needs. He needs so many breaks and things explained so many times so specifically.

Additionally, a few parents and employers discussed the need for on-going supervision or support. The employer of Daniel stated, “Daniel gets frustrated easily. One or more of the crew is constantly monitoring him.”

3.3.2. Family

In addition to challenges for the individual, the most frequently discussed challenge discussed for the family was the fear of loss of employment (or a reduction in scheduled hours), and the impact this would have on the family. For example, the parent of Charles stated,

I am terrified if he loses his job that we won’t find another one. The economy is still not recovered no matter what anyone tells you. I don’t know if drycleaners make the same kind of money they used to, so if they eliminate his position that would be awful.

3.3.3. Employer

This last section focuses on challenges for the employer including: training for themselves and for other employees/customers. A challenge for the employer was his or her own knowledge of autism and how to successfully employ an individual with ASD, especially with complex communication needs. For example, the employer of Charles stated, “It would be nice if schools or human resources would provide guidelines on working with people who can’t speak. It was a lot of trial and error.” A number of employers described the challenge of developing supports on their own, often relying on the parents for assistance. Additionally, employers encountered challenges with other employees and customers who had limited experiences with individuals with ASD. As such, the employers found themselves in situations that required them to attempt to teach others about autism, even though they themselves had limited training in this area. Charles’ employer commented,

I just figure it’s the customer’s problem when they don’t get him. They have to be exposed to this kind of thing. If they don’t want to be waited on by him and deal with him, they’re free to go somewhere else. They don’t need to do business here if they’re going to be like that.

3.4. Supports

The third major theme of this investigation related to the supports provided to the individual, family, and employer. Supports can be defined as: any person, organization, situation, action, or device (including educational) that enables or assists an individual to participate in employment activities and contribute to a positive work experience. Supports for the individual were categorized by four main subthemes: communication, rules and routines, time to learn new skills, and co-workers. Both parents and employers described themselves as supports for the successful employment of the individual with ASD, with some noted assistance from outside agencies.

3.4.1. Individual with ASD

Supports for the individual were categorized by four main subthemes: supports for communication, rules and routines, time to learn new skills, and co-worker supports for workplace participation.

3.4.1.1. Supports for communication. Mobile technology and AAC applications were the most frequently discussed communication supports for the individual with ASD. These communication supports helped the individual participate in social interactions with co-workers and employers.

With the managers and coworkers he always asks us, ‘How’s it going?’ He will also use his iPad to tell us what he did that day if it was special or say something about sports. He likes to talk about sports (Employer of James).

In addition to utilization of AAC supports for social closeness with co-workers and employers, individuals with ASD were reported to use AAC for interactions with customers, often with preprogrammed scripts or phrases within the communication app. Charles’ employer at the dry cleaners provided this example,

Well he has to talk to the customers so he has phrases in his iPad … So they’re in the order he needs them for that page. I looked at it a few times. If he touches just one button it says what he needs to say, like asking the customers how they are today and what day they need their clothes back and if the shirts are boxed or bagged.

Lastly, one individual was reported to primarily use a low-tech communication support in the form of picture communication. However, it seemed that the use of it during work was infrequent and rarely spontaneous. For example, Vince’s employer stated, “He has some communication boards in a binder but he doesn’t really use them. They have a lot of pictures but I don’t even think he knows what they mean.” Other low-tech expressive communication supports included the use of break cards when the individual desired a break.

3.4.1.2. Rules and routines. Rules and routines were the most commonly described area of support by both parents and employers and included visual supports for rules and routines, support from others, structural supports, and time. Visual supports for rules and routines included a variety of items: adding pictures to written directions, use of break cards, visual schedules, social stories, checklists, flowcharts, and calendars. The employer of Daniel described the importance of having visuals to support following a routine,

It’s really important for him to have a schedule to follow. If it isn’t written down he won’t do it–not because he’s lazy but he doesn’t have any initiative about what to do unless it’s already there for him.

Additionally, checklists and flowcharts were commonly described visual supports for helping the individual stay on task and know what to do next, broken down step-by-step.

He has a list he keeps in his iPad and he can check things off as he does them. It helps him stay organized. He even has break times programmed in his iPad. He can classify the type of facility and then choose the right kind from his checklist. Places we go regularly are in there by name” (Employer of Daniel).

Yes he’s a visual learner. He has a flowchart that walks him through what he needs to be working on at the time. Like, “Are there customers in the store” If yes, he needs to wait on them. If not, he can clean or stock shelves” (Parent of Thomas).

Visual supports, in the form of pictures, were also important supports described by William’s employer,

One of our Customer Service Managers actually added pictures to the sign to help him understand … We add pictures to written directions to support his reading comprehension … He is not a great reader, but he does well enough to get by in his job.

As with the task supports described above, sometimes these visual supports were already built into the technology used at the work setting. At the grocery store, William’s employer reported, “Our computer system actually is picture based which is why he was able to progress from bagging to running theregister. He can match the produce most of the time.” The employer of Charles also described built-in supports, “ … the computers we have really just walk him through it because they ask you how many pieces, what the piece it is, the color. Then the tags match the color of the bags before we get back.”

These built-in structural supports did not require any modifications, rather were there to support the success of all employees. Finally, scheduling supports, including shorter work shifts and the timing of shifts (e.g., weekend, early evening) as described by several parents and employers. The parent of James described James’ schedule at the grocery store; “The three-hour shifts are perfect for him. They are just long enough for him to accomplish what he needs to do but not so long that it’s beyond his attention span.”

3.4.1.3. Time to learn new skills. Many of the parents and employers described the importance of allowing sufficient time for change to take place: time for the individual to get settled into the new job, time for the employer and family to figure out what works. The parent of James added, “My husband calls it front-loading. We loaded all the time and effort early on and now he’s doing great following his schedule and getting work done by himself.”

3.4.1.4. Co-worker support for workplace participation. Co-workers and employers frequently aided the individual with ASD in learning and understanding the expectations for workplace participation. The employer of William stated, “The Customer Service Manager looks out for him and helps him get back on task when he needs it.” Daniel’s employer expressed a similar concept,

On site we work as a crew so we are always together. We all help each other all the time, even if Daniel needs a little more help than others. We remind him to look at his list if he starts looking lost.

3.4.2. Family and employer

When asked about supports to employment, family members and employers typically described activities that they themselves had conducted. These comments are presented under this combined heading. Both groups described the importance of personal connections and assistance, as well as some examples of outside support.

3.4.2.1. Personal connections and assistance. It was very common among the participants for the family to have a personal connection with the employer, or to provide assistance to the employer in creating a job match. The employer of Thomas at the butcher shop recalled the family’s assistance:

I needed part-time help and his mom and dad come in here sometimes. His dad came to the counter one day and he said ‘Doug, I’ve got to talk to you about the opening you have.’ We ended up in my office for an hour and they ran home to get Thomas. They talked me into it! The gift of gab - by the time Thomas actually got there I was pulling out an apron and putting him to work.

In addition to family assistance in finding a position, the family was also a source of other support. “Just call me chauffeur and tech support!”, exclaimed the parent of Thomas. Other families reported providing travel and technology assistance, keeping track of work related items (e.g., name tag, work shirt), and “helping him manage his time and finances” (Parent of Luke).

3.4.2.2. Outside support. Family connections were not the only important support to the identification of employment opportunities. Several families and employers discussed the role of outside support agencies, including the state Office of Vocational Rehabilitation and autism support networks. As Luke’s parent described, “He actually found the job through a community mentor program through our local Autism Society. His mentor pretty much handled everything, I just helped with the paperwork. I’m a single mom so it was really helpful to me”. As with the family assistance, outside agencies often supported the individual past the initial finding of employment by providing initial mentorship or job coaching.

3.5. Recommendations

As part of the semi-structured interview process, parents and employers shared recommendations concerning the employment of individuals with ASD and complex communication needs. Several recommendations focused on finding the right supports and the importance of patience:

Just be patient. And watch closely for patterns in what they’re doing wrong, then tell them how to fix it. Tell them a rule for fixing it. Sometimes I get tired of having to explain everything, then I remember … what if I’m his only chance, you know? He’s worth the extra work (Employer of Luke).

Other recommendations focused on education for employers and connecting with community resources. The parent of James recommended:

Start now! Educate employers. If you can’t get help through OVR, go talk to them yourself … We just have to do it ourselves. But I do recommend being a part of social groups that can help you brainstorm ideas for jobs, housing, etc.

Lastly, other participants provided inspirational recommendations for families or employers who may be discouraged: “Your hard work and mentoring will totally pay off. Stick to it, it’s worth the extra time. Don’t give up on your child!” (Parent of William) and “It will be the hardest thing you do, but a great legacy for your child” (Parent of Vince).

4. Discussion

There is growing evidence that persons with ASD can successfully participate in competitive employment settings when provided with appropriate supports [26 –28]. To date, many of these studies document the experiences of individual described as high-functioning, and who make use of vocal speech to communicate. This study extends the current literature by documenting the successful employment of individuals with ASD who present with complex communication needs and require the use of AAC. The appropriate use of communication skills is critical to workplace success [27]; as demonstrated by the cases reported here, the use of AAC can support individuals with ASD in communicating with others and supporting workplace participation. Key benefits, challenges, and supports for employment for individuals with ASD and complex communication needs are discussed below.

4.1. Benefits

As in past studies of job satisfaction, [29, 30] satisfaction with co-workers was reported as a key benefit by the participants in this study. Although there were significant challenges in obtaining the opinions of the participants with ASD, those individuals who completed the Talking Mats interview consistently identified the people and place of employment as items that they liked. Although many individuals with ASD experience difficulty in social interactions [31], improved outcomes have been observed when appropriate supports are provided [32 –34]. Indeed, parents and employers frequently discussed the benefit of social interactions for the individual with ASD, and their perception that at least some of the individuals with ASD enjoyed and sought out these interactions. As such, it is of critical importance that individuals with ASD are provided with the necessary communication supports to facilitate social interactions with co-workers. Past research provides evidence that individuals with ASD can be supported in social interactions by providing explicit social skills training [35] as well as providing access to personally relevant vocabulary (e.g., local sports teams, jokes, personal interests) in their AAC system to support social interactions [36].

In describing the benefits of employment, families frequently described the role of workplace participation in providing a break for caregivers. Successful employment brought predictable and familiar routines for the individuals with ASD but also for the families. Caregivers were able to have time to themselves, with their spouse, and their other children. This is especially important for caregivers of individuals with ASD, as they report experiencing more stress than parents of typically developing children [37]. However, it is worth noting that the break for caregivers only occurred after persistent efforts in ensuring successful employment for their child. Parents frequently extended significant effort to support their child in gaining employment and developing the skills to maintain the job. After this initial effort, parents reported their enjoyment of being able to take a break while their child was working in a safe and supported environment.

Additionally, employers and parents frequently described the positive work behaviors of the individual with ASD as benefits to employers, noting that once they learned the expectations, the individuals with ASD were frequently described as being on-task and on time. Past studies also have reported that behaviors characteristic of persons with ASD may, in some environments, be seen as beneficial by employers. Previous research has identified skills such as increased attention to detail and ability to focus on one task for an extended period of time as key benefits for the employer [1 , 28]. Both parents and employers in the current study described the need for supports to aid the participants in learning rules and routines; however, once supports such as visual schedules and checklists were in place, the individual was capable of performing a variety of non-repetitive employment tasks, including engaging in customer service. These supports likely provided some predictability to the communication exchange [38], perhaps allowing the individual with ASD to better understand the task expectations, and thereby reduce frustration.

4.2. Challenges and supports

Reported employment challenges for individuals with ASD in the current study centered on both expressive (e.g., social interactions, AAC technology) and receptive communication (e.g., learning new rules and routines). These challenges are not unique to the participants of this study.

Expressive communication in the workplace, particularly for individuals who use AAC, brings numerous challenges: access to relevant vocabulary, speed of AAC use, participation in different types of communication interactions (i.e., formal/informal), and adjustment to skills of communication partners [39]. Families and employers in the current study worked to ensure that the AAC device was charged and available for use, and that it contained the necessary content.

Additionally, receptive communication, in this case understanding the rules and routines of employment as communicated by others, and the ability to participate in social interactions in the workplace, was also viewed as an initial challenge for the participants in the current study. One way that this challenge was addressed included the use of visual supports such as schedules, checklists, and flowcharts. Visual supports have been identified as important supports for individuals with ASD [12, 40] and can assist in individuals in learning rules and routines across home, school, and community environments.

As in past studies of employment for individuals with ASD [2 , 42], challenges were reported for the family and employer. Family concerns focused on fear over finding a new job if the current one was lost. Additionally, as in Hendricks [1], one parent in the current study expressed worry that her son would experience difficulty communicating with his coworkers. Addressing misconceptions and overcoming the initial attitudes of employers’ and co-workers’ toward the individual with ASD can be a significant challenge for successful employment [43, 44]. Indeed, employers who hired individuals with ASD typically had greater awareness or understanding of the disorder prior to employment [42]. Family members in the current study often found themselves in the role of trainer, helping their child to learn the expectations of the work environment, and providing information and support to the employers and co-workers about ASD and strategies for working with their child.

Both parents and employers identified a need for additional support in training and educating the person with ASD, employers, and co-workers–too often, parents were the only available training support. As identified in past studies, there is a clear need for increased support for transition to the workplace during the school years [45]. Ideally these school-based transition supports would be coordinated with job coaching and training from local agencies such as the office of vocational rehabilitation (OVR) or autism support networks [46, 47]. Additionally, online, self-paced instructional modules, like the ones provided as part of the Autism Internet Modules (e.g., The Employee with Autism) may provide some preliminary training for employers to learn how to support employees with ASD, perhaps encouraging new employers to consider hiring individuals with ASD.

4.3. Limitations

There are several limitations to the current study herein discussed. First, the purpose of the selected research design (i.e., qualitative case design) is to describe the experiences of participants. As such, the employment experiences described by the participants may or may not match the experiences of other individuals with ASD who use AAC and are successfully employed. Generalization should be made with caution. Related to this, the current study had seven participants; a larger sample size may have yielded different results. Secondly, results are based solely on interviews from participants. Future research should consider capturing video of the individual with ASD in the workplace as a way to further analyze the benefits, challenges, and supports.

5. Conclusion

This study provided promising findings on the successful employment of individuals with ASD who use AAC. There exists a continued need to build awareness of the benefits for all parties (i.e., individual with ASD, family, and employer) in employing individuals with ASD. Presently, there are still high levels of unemployment within the ASD community, with one of the greatest potential barriers being attitudes of employers and co-workers [42, 44]. Results from the current study provide evidence that successful employment for individuals with ASD who use AAC is possible when intervention addresses three key areas [5]: the development of skills that are valued in the workplace (e.g., communication, social interactions, job-related tasks); the identification and creation of good job matches (e.g., employment settings that value the contributions of individuals with ASD, employment tasks that are enjoyable for the individual with ASD); and the provision of access to needed supports (e.g., visual supports, communication supports, employer training).

Conflict of interest

None to report.

Footnotes

Acknowledgments

This project was supported by a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant 90RE5017) to the Rehabilitation Engineering Research Center on Augmentative and Alternative Communication (RERC on AAC). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). Additional support was provided by the U.S. Department of Education grant H325D110008 (first and second author).

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