Understanding employment success in adults with Fetal Alcohol Spectrum Disorder

Abstract

BACKGROUND:

Individuals with Fetal Alcohol Spectrum Disorder (FASD) often face employment-related challenges due to cognitive, physical, and behavioural difficulties, however there are adults with FASD who have positive employment experiences.

OBJECTIVE:

We aimed to learn about employment experiences of adults with FASD. We focused on the conditions that led to employment success, and the impacts that employment had on adults with FASD.

METHODS:

A survey was developed, which consisted of open-ended and closed-ended questions. We recruited adults with FASD, caregivers of adults with FASD, and support workers for adults with FASD, and twenty-nine surveys were completed. Descriptive analyses and thematic analyses were conducted.

RESULTS:

We found that conditions that led to employment success in individuals with FASD were finding the right job fit, using relational supports, identifying as having FASD, and responding to challenges. Impacts that employed individuals with FASD experienced included increasing autonomy through remuneration, building self-esteem, developing social connections, and becoming an advocate for FASD.

CONCLUSION:

The present study is the first of its kind to explore employment in adults with FASD. By learning from the experiences of those individuals with FASD who have been successfully employed, we can better serve those who are struggling with employment.

Keywords

Employment Fetal Alcohol Spectrum Disorder adults strengths

1. Introduction

Experiences of fulfilling employment can help individuals to develop positive identity and self-esteem. These opportunities help us to connect with others, expand ourselves, and feel valuable. Employment can increase an individual’s self-worth and quality of life by offering a socially valued role and a financial income (Akkerman, Janssen, Kef, & Meininger, 2016; Moll, Huff, & Detwiler, 2003; Robinson, 2000). Employment can also act as a protective factor against adverse outcomes, such as poverty and dependency (Moll et al., 2003). Unfortunately, rates of employment tend to be low for people with disabilities (Van Hal, Meershoek, de Rijk, & Nijhuis, 2012), and one specific population that is known to experience employment-related challenges are individuals with Fetal Alcohol Spectrum Disorder (FASD) (Baldwin, 2007; Streissguth, Barr, Kogan, & Bookstein, 1996). In fact, according to the only large-scale longitudinal study looking at employment as an outcome, 79% of adults with FASD reported problems with employment (Streissguth et al., 1996).

1.1. Fetal Alcohol Spectrum Disorder

Fetal Alcohol Spectrum Disorder (FASD) is a neurodevelopmental disorder that occurs as a result of prenatal alcohol exposure and affects up to 5% of the general population (May et al., 2018; Thanh, Jonsson, Salmon, & Sabastianski, 2014). FASD presents as a complex array of physical, emotional, and cognitive disabilities that can make it difficult for individuals with FASD to obtain and maintain employment. Despite these difficulties, individuals with FASD also possess notable strengths and are often creative, tenacious, gregarious, friendly, helpful, and successful with structure and routine (Community Living British Columbia, 2011). These are valuable characteristics for many work environments and therefore, when given the opportunity, individuals with FASD can make helpful and important contributions to the workplace.

One area of cognitive functioning that has been identified as a core deficit for individuals with FASD is executive functioning (EF), which includes higher-order cognitive processes that support goal-directed behaviours (Khoury, Milligan, & Girardi, 2015). In the workplace, these difficulties may present as trouble maintaining focus, remembering instructions, switching between tasks, organizing and scheduling, working quickly, or controlling impulses (Green, 2016). Due to these challenges, individuals with FASD may tire easily from having to concentrate harder than others, and therefore may need to work part-time (Salmon & Buetow, 2012). Difficulties with EF also impact social functioning and social-emotional skills for individuals with FASD (O’Connor et al., 2006), and consequently interpersonal issues can impact employment opportunities. In addition to EF and social impairments, academic challenges, mental health issues, and physical health concerns are common in this population (Popova et al., 2016; Streissguth et al., 1996), and may further contribute to difficulties obtaining and maintaining employment. Additionally, if others in the workplace are aware of the FASD diagnosis, social stigma and discrimination often compound these issues (Salmon & Buetow, 2012).

It is important to note that FASD is a spectrum disorder that is highly heterogeneous, thus individual profiles can vary drastically and disabilities can range from mild to severe. The variations in presentation among those with FASD can make it difficult to predict where an individual may struggle or succeed in the workplace. Furthermore, because individuals with FASD often lack any physical signs of disability, their struggles may be misinterpreted, and expectations may not be consistent with the individual’s abilities, strengths, and goals. Having a nurturing and stable home environment, possession of a driver’s license, and receiving an early diagnosis have been noted as protective factors for successful employment (Streissguth et al., 1996). Indeed, when appropriately supported, individuals with FASD can lead fulfilling lives and make valuable contributions to society.

1.2. Employment support for people with disabilities

Some researchers have examined the specific workplace factors that contribute to employment success for people with disabilities. In one study, for instance, in order to identify workplace factors that characterize employers who are open to inclusion of people with disabilities, researchers conducted focus groups and interviews with employed people with disabilities, employers who hired employees with disabilities, and successful placement providers (Gilbride, Stensrud, Vandergoot, & Golden, 2003). Based on this research, work cultural issues, job match, and employer experience and support were identified as categories of key characteristics of employers who are welcoming to people with disabilities (Gilbride et al., 2003). Work cultural issues included equal treatment, a welcoming environment, focus on performance, and employer comfort in providing accommodations. Job match required obtaining input from the person with a disability on their ability to perform duties, focusing on essential functions, and matching the worker with the job requirements. In regard to job match, participants from the research study emphasized the importance of employers recognizing and allowing employees with disabilities to use their skills and talents, and employers emphasized the importance of meeting business needs, including having good, reliable employees. Lastly, employer experience and support described the employer’s ability to supervise a diverse workforce, and their tendency to view the rehabilitation program or agency as a partner and an ongoing employment support resource (Gilbride et al., 2003). Organizations that are able to incorporate these practices can create a work environment in which people with disabilities can succeed.

1.3. Employment models

A variety of employment models are offered for individuals with disabilities, including job placement, sheltered, supported, and customized employment services. Early efforts to address vocational training and work opportunities for individuals with disabilities through sheltered workshops have largely been replaced with integrated employment models, wherein the individual works in a typical setting, interacts with co-workers without disabilities, has an opportunity for advancement, and is paid a competitive wage directly by their employer (Moll et al., 2003). Supported employment is a service option that assists in achieving integrated employment by providing a range of supports for employability skills, job searching, job matching and customization, job coaching, and job retention. There is a primary focus on seeking a good fit between the employee and the work environment with consideration of personal, situational, and social-cognitive characteristics. Employees receive individualized guidance and ongoing support to help bridge the gap between their skills and their job requirements (Hale et al., 2011). Job customization builds on this approach of tailoring a position by exploring the unmet needs of an employer and matching these needs with the job seeker’s abilities and interests (Griffin et al., 2008).

Researchers investigating supported employment among individuals with severe mental illness concluded that these services positively affected the length and time of employment, and that clients using them were able to find jobs faster than those using other approaches (Kinoshita et al., 2013). A systematic review and meta-analysis of international evidence found that supported employment, specifically a model called Individual Placement and Support, is an effective intervention across different settings and is more than twice as likely to lead to competitive employment in comparison with traditional vocational rehabilitation, such as sheltered workshops and special job placements reserved for people with disabilities (Modini et al., 2016). Supportive employment has been associated with many benefits in comparison to other employment models, including better financial outcomes, opportunities for personal growth, incorporating the preferences of those with disabilities and their families, and greater social integration (Migliore, Mank, Grossi, & Rogen, 2007).

Supported employment models are described as an effective approach to providing vocational services that enable individuals with FASD with more significant needs to experience and explore employment options that would otherwise be unavailable to them (Green, 2016; Moll et al., 2003). In a recent review of nine programs in Canada that serve individuals with FASD in employment, researchers identified several factors that promoted success, such as using individualized strategies, taking a strengths-based approach, and building relationships between support staff and clients and between the employer and support staff (Green, 2016). Together, these factors allowed for increased education, support, and awareness for employees with FASD.

1.4. Current study

The current study builds on the previous research on employment support for people with disabilities and places a focus on the FASD population specifically. In this study we sought to learn more about employment in adults with FASD from those who had employment experiences, as well as from their support networks (i.e., caregivers and support workers). This study is the first to collect data directly from adults with FASD who have experienced self-identified employment success. The goal of this study was to increase our understanding of positive employment experiences for individuals with FASD, and in particular, provide critical information about supports and strategies that have contributed to employment success for this group. This information has the potential to inform FASD employment support programs, other service providers, policy-makers, individuals with FASD, and caregivers about the possibilities of success.

2. Methods

2.1. Participants

In order to maximize data collection, three groups of respondents were invited to complete an employment success survey about the employment experiences of adults with FASD: 1) adults with FASD who were employed, 2) support professionals directly connected to an adult with FASD who was employed, and 3) family members of an adult with FASD who was employed. In this way, support professionals and family members acted as a representative to report on the employment success of an individual with FASD. Respondents with FASD were required to be currently employed or to have experienced paid employment of any type in the past. Out of 49 surveys initiated, 32 were completed. Completed surveys from three participants were removed because they did not fit the eligibility criteria (one was under the age of 18, and two had never been employed). The remaining 29 responses consisted of surveys from 20 employed adults with FASD, six caregivers, and three service providers.

2.2. Survey

Two principle questions informed the survey:

Under what conditions are people with FASD successful in their employment?

What kinds of positive employment impacts are being achieved by adults with FASD?

At the time of the study, no formal scales existed to explore the employment experiences of individuals with FASD, therefore 19 questions were developed through review of academic literature, reports, and prepared documents to ensure existing evidenced-based knowledge of strengths and difficulties for the FASD population were considered. To ensure the survey was relevant to the FASD community, the survey was co-developed in collaboration with the Family Advisory Committee (FAC) of the Canada FASD Research Network. The FAC reviewed the questions to determine if they 1) meaningfully captured the employment experiences of individuals with FASD, and 2) were feasible for completion by individuals with FASD and community members. Through ongoing consultation with the FAC, the survey was revised and expanded to include a final total of 35 questions. Both open-and closed-ended questions were used to obtain a variety of information targeting the key questions of the study. An online version of the survey was created, and a paper version was available for participants who preferred to complete a hard-copy (see Appendix). Two surveys were designed online: one with wording for the adult with FASD to complete asking about their experiences (in Appendix), and one with wording for a caregiver or support person asking to describe the experiences of an adult with FASD who they support. Participants were routed to the survey questions with appropriate wording based on who they identified as.

2.3. Data collection

Ethics was approved from the Research Ethics Board at the University of Alberta. Recruitment involved contacting existing and well-established FASD organizations throughout Canada for distribution of the survey through their networks. A recruitment poster was designed and titled Employment Stories from People with FASD: Success, Hope, and Possibility, and recruitment was targeted at people who had self-identified successful employment experiences. The study was also advertised on social media via the Canada FASD Research Network. Survey responses were collected between March 2017 and August 2017 either online by the participant, on the phone with a researcher, or in person at the 2017 International Conference on FASD. Participants received a $10.00 gift card for their participation.

2.4. Analysis

Survey questions provided demographic information for the sample. Closed-ended questions were analyzed for frequency and descriptive information. Data were collected regarding types of jobs, length of employment, work schedule, challenges obtaining and maintaining employment, supports and strategies, disclosure of FASD diagnosis at work, and remuneration.

A thematic analysis was conducted on the open-ended survey responses using NVivo software, a program used for the organization and coding of qualitative data. Preliminary codes were first generated from a thorough reading of the responses, and codes were subsequently grouped into four categories that emerged from the data: successes, challenges, strategies, and supports. One researcher analyzed and coded the responses, and then a second researcher reviewed the coded responses independently to ensure reliability. The two researchers met to review the coding together and discussed any discrepancies, differences of opinion, or codes that lacked clarity. Data were reviewed a second time by both researchers, and an agreement on categorization was achieved. Next, the preliminary codes and categories were presented to the core research team and revised based on the team’s feedback. Lastly, a thematic analysis was conducted by two researchers looking across categories to uncover themes in the responses. The themes were organized to create an understanding of employment success. The research team reviewed the final themes, which were again edited based on team feedback.

3. Results

The following section presents the information we collected about 29 adults with FASD as reported on by 20 adults with FASD, six caregivers, and three support professionals. The word ‘participant’ is used to describe the experience of the individual with FASD whom the respondent answered questions about.

3.1. Participant demographics

The average age of adults with FASD in this study was 32 years old (range 18–64 years), with three respondents not providing an age. There were 16 males, 11 females, one respondent who preferred not to say, and one who did not answer the question. The respondents were from Canada (n = 23), United States (n = 4), South Africa (n = 1), and one did not specify their location. It is important to note that this study was based on self-report data and we did not verify if participants had a documented FASD diagnosis.

Twenty-seven different places of employment were reported. The service industry was most commonly reported (e.g., restaurants/retail) (52% of participants), and other workplaces included social services, city transit, government, delivery, news company, home business, repair shop, events planning, manufacturing, and construction. The majority of adults with FASD in this study were reported to be employed for between one to five years (38%) (see Table 1).

Table 1
Frequencies and percentages of responses by question

Item Number of adults with FASD Number of caregiver and support people Total Percentage

How long have you worked there?

0–6 months 1 2 3 10.34%

7 months–1 year 4 3 7 24.14%

1–5 years 7 4 11 37.93%

6–10 years 6 0 6 20.69%

10+ years 2 0 2 6.90%

About how many days do you work each week?

1-2 days 7 4 11 37.93%

3-4 days 3 4 7 24.14%

5+ days 10 1 11 37.93%

The number of days I spend at work is:

Not enough 3 2 5 17.24%

Too much 2 0 2 6.90%

Just the right amount 15 7 22 75.86%

About how many hours do you work each day?

1–3 hours 4 4 8 28.57%

4–6 hours 7 2 9 32.14%

7–9 hours 6 3 9 32.14%

9+ hours 2 0 2 7.14%

The number of hours I spend at work is:

Not enough 2 3 5 17.24%

Too much 3 1 4 13.79%

Just the right amount 15 5 20 68.97%

Was it hard to find a job?

No 9 3 12 41.38%

Yes 11 6 17 58.62%

Have you ever lost a job?

No 7 1 8 27.59%

Yes 13 8 21 72.41%

Does your boss pay you to work?

No 1 0 1 3.45%

Yes 19 9 28 96.55%

Does another agency pay you to work?

No 18 8 26 89.66%

Yes 2 1 3 10.34%

Do you talk about your diagnosis at work?

No 11 8 19 65.52%

Yes 9 1 10 34.48%

Item	Number of adults with FASD	Number of caregiver and support people	Total	Percentage
How long have you worked there?
0–6 months	1	2	3	10.34%
7 months–1 year	4	3	7	24.14%
1–5 years	7	4	11	37.93%
6–10 years	6	0	6	20.69%
10+ years	2	0	2	6.90%
About how many days do you work each week?
1-2 days	7	4	11	37.93%
3-4 days	3	4	7	24.14%
5+ days	10	1	11	37.93%
The number of days I spend at work is:
Not enough	3	2	5	17.24%
Too much	2	0	2	6.90%
Just the right amount	15	7	22	75.86%
About how many hours do you work each day?
1–3 hours	4	4	8	28.57%
4–6 hours	7	2	9	32.14%
7–9 hours	6	3	9	32.14%
9+ hours	2	0	2	7.14%
The number of hours I spend at work is:
Not enough	2	3	5	17.24%
Too much	3	1	4	13.79%
Just the right amount	15	5	20	68.97%
Was it hard to find a job?
No	9	3	12	41.38%
Yes	11	6	17	58.62%
Have you ever lost a job?
No	7	1	8	27.59%
Yes	13	8	21	72.41%
Does your boss pay you to work?
No	1	0	1	3.45%
Yes	19	9	28	96.55%
Does another agency pay you to work?
No	18	8	26	89.66%
Yes	2	1	3	10.34%
Do you talk about your diagnosis at work?
No	11	8	19	65.52%
Yes	9	1	10	34.48%

3.2. Conditions of success

In our exploration of the employment journeys of individuals with FASD, many expressed challenges faced in obtaining and maintaining employment. The majority of participants in this study reported that adults with FASD had experienced difficulty finding a job (59%), and even more had lost a job in the past (72%) (see Table 1). One participant said, “it took a long time to build the skills needed to get employed.”

Despite these difficulties, some shared themes emerged reflecting the conditions contributing to success in employment for our participants. In particular, participants identified four core themes: finding the right fit, using relational supports, identifying as having FASD, and responding to challenges.

3.2.1 Finding the right fit

This condition refers to how well an employee is suited for their position. Part of finding a “good fit” meant that the workplace matches the employee’s abilities, interests, skills, and goals. For example, one participant shared that, “I am in an office working with people, especially youth, because my dysmaturity is at a 23–27-year-old, I am 45 but my brain isn’t so it helps me relate to youth.” Instead of FASD being a challenge for this individual, they reported that their FASD actually benefited them at work because it helped them to relate to the youth they work with.

Participants also described job factors such as working the right number of hours, low levels of job stresses, a consistent work schedule, a regular routine, and lots of repetition at work as vital components contributing to a good job fit. The majority of adults with FASD in this sample were reported to work an appropriate number of days each week (76% of adults) and an appropriate number of hours each day (69% of adults) for their needs. See Table 1 for a breakdown of the reported work schedules.

3.2.2 Using relational supports

Another condition that emerged as contributing to employment success for adults with FASD in this sample was having supportive relationships. Participants discussed positive relationships with family members, spouses, and support workers as being important to help with employment and general life management, including transportation, scheduling, weather considerations, and getting to work on time. When asked about support needed to get ready for work, participants reported that adults with FASD needed help waking up (28%), packing a lunch (21%), eating breakfast (14%), and getting dressed (10%). Some participants were reported to need help taking medication and tending to hygiene.

Participants discussed the importance of having supportive people at work to help adults with FASD, such as a role model (52%), a support worker or job coach (48%), family (38%), and friends (24%). Using the “other” option, some participants also noted that supervisors and managers helped at work (14%). One participant with FASD emphasized the important roles that support workers and supervisors play in their employment success: “My support worker supports me and checks in on me. My supervisor reminds me how to do my work and motivates me.” Having an understanding, supportive, and encouraging boss or supervisor emerged as a key condition of employment success. Participants described how the fit between the employee and management style was essential to employment success. One participant said, “my boss is very understanding, accommodating. I have had one huge meltdown and he handled me very well.”

Similarly, participants described how co-workers support them in dealing with challenges at work. One participant explained that “I also have learned and/or accepted there are times when I need to ask for help and my coworkers understand,” which underscores how relationships at work allowed participants with FASD to feel comfortable seeking support when they need it. Specific approaches that were noted to be especially helpful at work included reminders, help with reading and math, help with keeping on task, explanations, and check-ins to make sure things are going well.

3.2.3 Identifying as having FASD

The majority of participants (66%) reported that adults with FASD in this study chose not to disclose their diagnosis at work (see Table 1). However, those who chose to disclose reported that it helped people at work to better understand them. Participants explained how the disclosure of diagnosis helped to start a dialogue about the spectrum of FASD, promote empathy, and reduce stigma. One participant with FASD described some of the benefits of identifying as having FASD, “[it] helps my coworkers know what goes on with me, know that some days are good days and some days are bad days. Some days I get things and some days I don’t get things.” Another participant reported how sharing their diagnosis benefited them: “I like that my Head Supervisor knows that I have a disability and is open to helping when I need time off.” Regardless of these positive experiences of disclosing FASD diagnoses at work, many who did not disclose reported that they did not need to, or they feared the stigma and lack of understanding associated with FASD.

3.2.4 Responding to challenges

A final condition that allowed adults with FASD in this study to experience successful employment is related to factors that helped them to respond to challenges. The importance of this condition was emphasized by one caregiver who explained that “[FASD] can be an “invisible” limitation, and that even though [the] employee presents himself well, he needs to have certain accommodations and supports to be successful.” One participant with FASD described how special accommodations help them to overcome difficulties in the workplace:

At my job we have an open-door policy… we usually have to keep our doors open unless we have a client, but because of my disorder I also live with ADHD and my focus gets off track so I usually have my door closed.

Participants also endorsed specific accommodations and supports that helped adults with FASD at work, including following a routine (69%), having a person who explains tasks to them (69%), relying on lists (52%), having someone who helps with paper work and filling out forms (41%), and using reminders/alarms (34%). Access to fidgeting tools, headphones, gloves, or other sensory aids at work were also reported to help adults with FASD in this study in responding to challenges at work. One participant with FASD shared a strategy that worked especially well for them, stating that, “if you can’t remember things, write them down even if it means your top of the desk looks cluttered to everyone else, it helps you.”

Importantly, participants discussed how having a work environment that fostered employment success allowed adults with FASD in this study to build skills necessary for successful and continued employment. These skills included punctuality, communication, efficiency, time management, emotional control, team work, social skills, and money management, all of which prepare them to better respond to challenges at work.

3.3. Impacts of employment

Participants also described several positive impacts on the life and well-being of individuals with FASD in this study as a result of being employed. In particular, they reported experiencing increased autonomy through remuneration, self-esteem, social connections, and becoming FASD advocates.

3.3.1 Increasing autonomy through remuneration

When asked about what they like about their jobs, participants talked about being paid for their work and having independence. Almost all participants in this study were financially compensated (97%) (see Table 1). For some participants, this factor fostered increased independence, for example by allowing the individual with FASD to have their own apartment.

3.3.2 Building self-esteem

Participants commented on how having a job allowed adults with FASD to feel valued, proud, respected, and able to discover their strengths. One adult with FASD shared that through their work, “I took the time to learn about myself; what’s the strongest part of my brain and I focus on that.” Another participant shared the caregiver’s perspective, explaining that their son with FASD, “likes [his job] and [it] gives him a better feeling about himself. He loves to be called a working man” which further illustrates how fulfilling work experiences can promote increased self-esteem for adults with FASD.

3.3.3 Developing social connections

Social aspects of work were reported as positive impacts of employment. Specific social elements of the jobs were identified that were particularly fulfilling, such as helping customers, making people smile, and working with children. In particular, experiences with clients, customers, and coworkers provided opportunities for social interactions and helped participants to develop friendships. For example, one participant said, “we have a community atmosphere at work and a lot of good employees that you get to know over time and develop friendships.” Participants also reported enjoying receiving positive feedback from a boss or supervisor. One participant said that they “appreciate hearing people speaking highly of me; [it] motivates me to do more.”

3.3.4 Becoming advocates for FASD

Several participants discussed the importance of educating employers about FASD in order to increase hiring and promote understanding of people with disabilities, and to increase awareness of FASD in the workplace. Comments from participants highlighted the importance of people understanding how someone with FASD’s brain works and informing people that individuals with FASD have ways of working around and coping with their challenges. As articulated by one participant, “there should be training in all work places about FASD because it is so prevalent even though many people are undiagnosed.”

4. Discussion and future directions

This study of employment success among adults with FASD corroborates and builds upon existing knowledge in the field by adding the voices of individuals with FASD and their support networks. We captured several conditions that can lead to employment success, namely finding the right fit, using relational supports, identifying as having FASD, and responding to challenges. We also uncovered some of the positive impacts of employment, including increasing autonomy through remuneration, building self-esteem, developing social connections, and becoming advocates for FASD. Previously, Green (2016) explored the perspectives of employment agency service providers and identified individualized supports, strengths-based approaches, and building positive relationships as being important contributors to employment success for adults with FASD. The individuals who participated in this study echo these perspectives, highlighting similar themes that contribute to employment success.

Participants reported that adults with FASD in this study obtained employment across various settings that require a broad range of skills and foster development of various abilities and personal growth. The majority of participants reported that they were in their jobs for between one to five years, and some individuals even reported over ten years of employment, which demonstrates that long-term employment is possible for some individuals with FASD. Findings suggest that employees with FASD may be especially successful in certain roles, with specific schedules, accommodations, and management styles.

The finding that job fit is one of the key factors in promoting employment success for adults with FASD aligns with previous research. For instance, Akkerman et al. (2016) recently highlighted job fit as an important contributor to employment satisfaction for people with intellectual disabilities.

Another crucial component of employment success identified for adults with FASD was supportive relationships both at home and in the workplace. Many participants relied on their families and support networks to help them get ready for work, as well as provide assistance once at work so that they could do their jobs well. Strong, positive relationships have been shown in previous studies to relate to job success; for example, researchers have identified feelings of belonging, recognition, appreciation, lack of stigma, and support from coworkers and supervisors to promote job satisfaction (Akkerman et al., 2016). Combined with this previous research, our findings emphasize that supportive relationships are a crucial component of job success for adults with FASD.

We acknowledge that the majority of adults with FASD in this study chose not to identify as having FASD to their employer, sometimes due to fear of stigma and lack of understanding of FASD, or because they felt they did not need to. These perceptions tell us there is more work to do around FASD awareness and education for individuals to feel safe sharing their diagnosis. Sharing positive experiences related to disclosure of diagnosis has the potential to provide inspiration and encourage more open lines of communication about FASD in the workplace. Navigating the process of disclosure and eliminating stigma has been an important part of work with other disability populations, including autism spectrum disorder and mental illness (Corrigan & Rao, 2012; Johnson & Joshi, 2016). Developing best practices around FASD disclosure in the workplace could open doors for individuals who are hesitant to share.

Participants in this study reported that adults with FASD must respond to challenges in order to work effectively. Researchers have previously shown that employers can create workplaces that foster success for adults with FASD when they show willingness to understand the challenges of FASD and adapt their processes, interactions, and expectations so they are suited to employees with FASD (Green, 2016). When adults with FASD work in accommodating and supportive environments, this creates opportunities for a variety of positive outcomes. For participants in this study, these positive outcomes included increased autonomy through remuneration, self-esteem, social connections, and advocacy for FASD in the workplace. Adults with FASD in this study were reported to find fulfillment and enjoyment at work, and their stories promote a message of hope and possibility.

It is important to note that the majority of adults with FASD in our sample experienced difficulty finding a job and staying employed in the past. Learning more about their trajectories and comparing it to individuals who have not been able to move into employment could highlight key factors that support success. Employment is one of many social determinants of health, and lack of employment is associated with physical and mental health problems that include depression, anxiety, and increased suicide rates (Mikkonen & Raphael, 2010). With up to 5% of the population affected by FASD (May et al., 2018), many of whom struggle with employment (Streissguth et al., 1996), it is important to further understand what resources and supports are needed to ensure income and employment security.

A logical next step in this line of research would be to explore the experiences, perspectives, and perceptions from employers of individuals with FASD, as these individuals appear to be central to fostering successful experiences. Including employers and co-workers in this conversation would bring valuable insight into establishing a good fit and supporting positive relationships in the workplace for individuals with FASD. Previous researchers have explored the challenges faced by employers and the support they need to hire and accommodate employees with mental illness (Shanker et al., 2014), but it is quite possible that the unique characteristics of FASD may create different experiences for employers. Mobilizing this information would allow service providers (e.g., FASD employment coaches) to better support individual with FASD.

5. Limitations

One potential shortcoming in this study is the method of data collection. Data was primarily gathered through an online survey, and we were therefore unable to verify who was completing the survey to confirm an FASD diagnosis or to clarify unclear responses. However, the survey method was chosen because it is feasible, discrete, and allowed us to gather information from a wider geographical sample. Additionally, because recruitment occurred through community organizations, this study was limited to those individuals connected with FASD community resources, and the sample may have been biased in that most participants were already connected to supports.

Furthermore, we did not collect demographic information beyond age, gender, and location of survey respondents. It is unclear what employment success may look like for individuals with FASD in other countries, age groups, or living under diverse circumstances.

This study focused on employment success, so individuals who responded represent a small group of adults with FASD who had positive employment experiences, and findings are not generalizable to all adults with FASD. However, it is important to learn from the successes of individuals with FASD to best support individuals who have yet to find employment success.

6. Conclusions

This strength-based study highlighted the remarkable possibilities of adults with FASD. These findings have the potential to inform the development of resources for support professionals, caregivers, and policy-makers working to enhance outcomes in FASD. With the changing landscape of employment for individuals with disabilities, there is a growing emphasis on learning how we can promote employment success, and the stories of our participants spread messages of hope, fulfillment, and meaningful opportunity for adults with FASD.

Conflict of interest

The authors declare that they have no conflict of interest.

Footnotes

Appendix

Acknowledgments

We thank all of the individuals with FASD, caregivers, and support workers who shared their wisdom and experiences with us throughout this project. We also want to acknowledge the critical role that the CanFASD Family Advisory Committee played in the development and implementation of this study. We would like to thank our funders, the Canada FASD Research Network and PolicyWise for Children and Families.

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