Examining the special interest areas of autistic adults with a focus on their employment and mental health outcomes

1.1Employment and mental health outcomes of adults with ASD

Leveraging the SIAs of young adults with ASD to enhance their potential careers and jobs may be advantageous. However, simply linking SIAs to jobs will not likely lead to satisfactory employment outcomes given the complexity of this issue. An “autism advantage” at work has been proposed in which SIAs are utilized to the betterment of a business, company, or organization (Bury et al., 2020). However, a recent systematic review found no strong evidence for a so called autism advantage and proposed that SIAs can be both barriers and strengths in workplace environments (Bury et al., 2020). Accordingly, additional research is needed given only 14% of adults with ASD currently work competitively for pay in their local communities (Roux et al., 2017), and it is unclear what percentage of adults are working in jobs aligned to their passions, skills, and interests. This is concerning because high job satisfaction and paid employment is associated with overall positive quality of life (Cocks et al., 2015).

Many adults with ASD experience co-occurring mental health conditions in addition to unemployment and community disengagement. Anxiety and depression are particularly prominent. A recent systematic review and meta-analysis examined the prevalence rates of anxiety and depression for adults with ASD and found that 27% of respondents with ASD had a current comorbid anxiety disorder and 42% had an anxiety disorder in their lifetime (Hollocks et al., 2019). This prevalence is higher than individuals without disabilities (Remes et al., 2016). Similar rates were found for depression for adults with ASD, where 23% of respondents had a current comorbid depressive disorder and 37% had a depressive disorder in their lifetime (Hollocks et al., 2019). Individuals with ASD have also reported experiencing significantly more stressful events and perceived stress than individuals without disabilities, which was associated with social disability (Bishop-Fitzpatrick et al., 2017). Despite these comorbidities, not all individuals with ASD report their ASD traits are negatively associated with overall quality of life, with variability in autism-specific characteristics and comorbid conditions being an important factor in health (Oakley et al., 2021). Therefore, additional research examining the association between ASD, anxiety, depression, and stress appears warranted.

Researchers have noted the importance of demographic factors such as gender identity, race/ethnicity, sexual orientation, and socio-economic status with mental health outcomes in the general population. For example, racial/ethnic minorities have reported higher levels of depression than racial/ethnic majority respondents (Vyas et al., 2020). Moreover, bisexual persons have noted poorer mental health and physical health compared to heterosexual, gay, and lesbian respondents (Fish et al., 2021), while nonbinary individuals have reported lower perceived health, greater psychological complaints, and feelings of loneliness when compared to their cisgender counterparts (Aparicio-García et al., 2018; Ciria-Barreiro et al., 2021). Furthermore, low socio-economic status is associated with lower levels of well-being (Sainz et al., 2020). Therefore, examining the multifaceted aspects and identities of individuals is important when considering the factors associated with well-being. One area largely unexplored in the well-being literature is specific factors that contribute to the well-being of individuals with ASD (Deserno et al., 2018). This is important given that the severity of autism-specific characteristics negatively relates with well-being (Deserno et al., 2018), and positive well-being may protect against depression for individuals with ASD (Hedley et al., 2019).

In the broader literature, well-being can be conceptualized as many different constructs, such as psychological and social well-being (Keyes et al., 2008; Ryff, 1989). Similarly, research examining the well-being of individuals with ASD have noted that well-being is a multidimensional construct (Danker et al., 2019) and that research examining well-being with individuals with ASD should consider their unique perspectives (Kapp, 2018). Similarly, Keyes et al. (2008) proposed diverse conceptualizations of well-being should be combined for a comprehensive view of subjective well-being. Therefore, in response to the Hedley et al. (2019) call to uncover the mechanisms supporting the well-being of employed adults with ASD, examining the well-being of individuals with ASD through qualitative and quantitative methods is warranted. In fact, this is a vital area of inquiry as previous research has noted the relation between SIAs and employment is more complex than merely matching jobs to a SIA (Goldfarb et al., 2019), and the construct of well-being is individually-based and fluid (Lam et al., 2021).

Despite the prevalence of SIAs and core RRB domain associated with the disorder, the overall literature base for SIAs is relatively sparse and even more so with a particular focus across the lifespan. Thus, the purpose of this study was to develop a better understanding of the value of SIAs in the lives of adults with ASD through the use of mixed methodology (i.e., qualitative and quantitative analysis), with an emphasis on bringing the voices of autistic adults to the forefront of the discussion related to SIAs. Specifically, we wanted to know how adults with ASD typically engage with their SIA. We also wanted to know how frequently adults with ASD were employed in jobs related to their SIA. Finally, we wanted to develop a better understanding of the relation between SIAs and mental health outcomes, given many adults with ASD have comorbid health conditions (e.g., anxiety, depression), along with their association with positive conceptualizations of well-being.

We hypothesized that adults with ASD will have a wide variety of SIAs that are important to their overall life satisfaction and personal identity. We also hypothesized that adults with ASD will spend long periods of time engaging with their SIA and few adults will have jobs related to their SIA. Finally, we hypothesized employment in their SIA and support for their SIA would be associated with decreased levels of depression, anxiety, and stress, as well as an increased level of well-being. We were guided by the following research questions:

2.1Instrumentation

We developed a 38-item survey with three sections to distribute to adults with ASD who identify as having a SIA (see Table 1). In accordance with DeVellis’s (2021) eight steps to scale development, survey questions were developed based on reviews of the existing literature related to SIAs, employment, and well-being for adults with ASD. Prior to distribution, we solicited feedback from three experts in the field of ASD and three autistic adults. The experts provided feedback related to word choice, organization of the survey, accessibility, and overall content. Autistic adults provided additional feedback on diagnostic classification, user experience, and clarification of SIA categories. The first author met with each autistic adult to ensure their feedback was adequately incorporated into the final survey.

The first section focused on demographics and was developed using recommendations from Hughes et al. (2016) to be as inclusive as possible. The second section focused on SIAs and included a list of SIA categories and descriptions adapted from Caldwell-Harris and Jordan (2014). Respondents indicated which category their SIA most closely identified. They reported how frequently they engaged in their SIA and if they were currently employed in a SIA-related job. We also included three open-ended text boxes in which respondents described their SIA in their own words and shared beliefs about SIAs broadly. The third section consisted of two standardized mental health assessments: the Depression Anxiety Stress Scales-21 (DASS-21; Lovibond & Lovibond, 1995) and the Mental Health Continuum Short Form (MHC-SF; Keyes et al., 2008). Each of the three sections was randomized to control for sequencing effects (Siminski, 2008).

2.2Depression Anxiety Stress Scales-21

The DASS-21 was used to measure overall feelings of depression, anxiety, and stress experienced by the adults with ASD. We selected this measure because it was found to be valid and reliable self-report of depression, anxiety, and stress for individuals with ASD and no co-occurring intellectual disability as reported by Park et al., 2020. There are 21 items with seven items for each subscales. Participants ranked each of the 21 items on a four-point Likert-type scale ranging from 0 (Did not apply to me at all) to 3 (Applied to me very much or most of the time). The seven items in each subscale were summed and then multiplied by two to provide a total score for each of the depression, anxiety, and stress subscales. Scores for each subscale range from 0 to 42. Higher scores across the subscales indicate higher levels of depression, anxiety, or stress. In the current sample, Cronbach’s α for the entire DASS-21 (.93), depression subscale (.934), anxiety subscale (.83), and stress subscale (.804) was excellent.

2.3Mental Health Continuum Short Form

The MHC-SF was selected to measure the overall well-being of the adults because it has been previously used with individuals with ASD (Botha & Frost, 2020). The MHC-SF is a self-report measure (Keyes, 2002; 2005). The MHC-SF is a 14-item measure, with three items in the emotional well-being subscale, five items in the social well-being subscale, and six items in the psychological well-being subscale. Participants rank each of the 14 items on a Likert-type scale ranging from 0 (never) to 5 (every day). The 14 items are summed for a total score, with scores ranging from 0 to 70. Higher scores indicate greater levels of positive well-being. In the current sample, Cronbach’s α for the MHC-SF was excellent (.93).

2.4Survey distribution

We distributed the survey using the online platform Qualtrics (http://www.qualtrics.com/). The survey was active from January 2021 until April 2021. Adults with ASD were contacted for participation using the following outlets: (a) social media posts (e.g., Facebook, Twitter), (b) online posts on ASD-specific support group pages, and (c) e-mails to organizations that provide services to adults with ASD. We requested that organizations share the survey link using its regular mode of communication with clients (e.g., e-mail, newsletter). The majority of respondents (42%) reported they learned about the survey through social media. The second largest recruitment method was online posts (26%). Individuals who indicated interest in participating were directed to an online consent form with a description of the study and purpose. Inclusion criteria to participate was age 18 or older with an ASD diagnosis. Participants were not required to provide documentation regarding their diagnosis. One hundred fifteen people clicked the link to take the survey. Survey respondents were dropped from the final analysis if they did not complete the survey in full, did not report a diagnosis of ASD, and/or did not identify as having a SIA. The average time to complete the survey was 50 minutes. Respondents were offered no incentive or compensation for completing the survey.

2.5Participants

Seventy-two eligible respondents were analyzed. The average age of the respondents was 30 (range 18–53). Ninety-three percent of respondents reported needing Level 1 supports (requiring support) according to the DSM-V (APA, 2013). Only 1% reported needing Level 2 supports (requiring substantial support), and 6% reported needing Level 3 supports (requiring very substantial support). The average age of initial ASD diagnosis was 20.75 (range 2–52). The majority of respondents were diagnosed with another disorder at some point in their life (70.8%). The most prevalent co-occurring disorder was a mental health disorder (e.g., anxiety, depression) with 55.6% respondents reporting some type of mental health disorder. The next most prevalent co-occurring disorders were attention deficit hyperactivity disorder (30.6%) and specific learning disability (9.7%). No respondent reported having an intellectual disability. Approximately 39% of respondents received special education services during K-12 education. Of those who received services, 29.2% received services under the Educational Autism category. Regarding location/residence, 68% of the respondents lived in the United States and 32% did not. Other countries represented included Australia, Canada, Hungary, Iceland, Ireland, Norway, Qatar, Trinidad and Tobago, and United Kingdom of Great Britain. Nearly all participants (97.2%) reported they currently receive professional mental health services or had at some point in their life. Table 2 reports all other demographic information including gender identity, race/ethnicity, sexual orientation, education level, and current employment status.

2.6Data analysis

3.1Open-ended qualitative analysis

Table 3 presents the open-ended responses in which we asked respondents to describe their SIA in their own words. We organized their responses according to the SIA categories as described by Caldwell-Harris and Jordan (2014). The themes that emerged from the open-ended text box responses in which we asked respondents, “What would you like to tell other people about your SIA?” and “What would you like to tell other people about SIAs in general?” are described below.

3.2Hierarchical regressions

Of the dummy coded demographic variables (i.e., gender identity, race/ethnicity, sexual orientation, education level), race/ethnicity was the only significant predictor (R² = .0123, F(1, 70) = 9.827, p = .003) and accounted for 1.23% of the variance ([ß= .351, SE = 5.141], t(70) = 3.135, p = .003) of well-being and was controlled for in subsequent analyses. See Table 4 for the means, standard deviations, and bivariate correlations among demographic, control, predictor, and outcome variables.

4.1Perceptions regarding SIAs

Respondents reported a variety of benefits associated with engaging in their SIA, including that it makes them happy. This finding was consistent with other research indicating SIAs are associated with higher levels of well-being and life satisfaction (Grove et al., 2018), as well as positive emotions and coping strategies (Teti et al., 2016). In addition, the large majority (75%) reported they had an adult agency provider, school professional, family member, peer, or other significant person encourage their SIA at some point in their lifetime. These key people in the lives of autistic adults can be important for fostering social and community connections (Carter et al., 2013). Respondents felt strongly that SIAs can be a means in which autistic individuals contribute to broader society and that SIAs are closely related to their identity. For example, one survey respondent wrote, “I would like to say that they aren’t the same as a regular interest. They aren’t just lifelong hobbies for me. They are a core part of my identity.” The importance of SIAs to the identity of autistic adults has been previously described in the literature (e.g., Grove et al., 2018; Harrop et al., 2019).

Autistic adults also indicated a preference for neurotypical individuals to develop a better understanding and acceptance of SIAs. For example, one adult wrote, “Special interests are invaluable to a neurodivergent person’s mental health and should be supported once they do not harm others or infringe on the boundaries of others.” Another adult wrote, “Man let us vibe.” These findings are consistent with another survey study that indicated long periods of time spent masking was detrimental to the mental health of autistic adults (Bradley et al., 2021). Accordingly, focus should shift to providing education and knowledge for neurotypical individuals rather than minimizing the SIAs of autistic individuals.

4.2Depression, anxiety, stress, and well-being

More than half of the respondents reported SIA-related bullying at some point in their lifetime. This finding was concerning and consistent with previous literature that found K-12 students with ASD experience higher rates of bullying compared to students without disabilities (Sreckovic et al., 2014). Findings from our statistical analysis indicated respondents who reported higher levels of bullying experienced higher levels of depression, anxiety, and stress. Lack of current support related to one’s SIA also contributed to statistically significant higher levels of stress. This finding suggests having someone encourage their SIA is important in the lives of autistic adults to lower their stress levels. In addition, respondents who were not currently employed in their SIA reported higher levels of depression. Unemployment can indeed negatively impact the mental health of an individual with ASD (Hedley et al., 2017).

Finally, non-White people reported greater levels of well-being compared to White respondents. This finding was inconsistent with the literature, which led us to control for race/ethnicity. There were no other variables that were significant predictors of well-being. This finding suggests some other factor beyond employment, support, encouragement, and lack of bullying must be present for autistic adults to have high levels of well-being. In short, it remains unclear what component will support autistic adults to flourish and live happy and fulfilling lives. However, the qualitative analysis suggests that SIAs may be one means to contribute to the overall well-being of autistic adults. As described by one survey respondent, SIAs are “the spark that makes life worth living.”

4.3Limitations

There are several limitations to this study that must be acknowledged. First, the survey was distributed entirely online so only individuals with technological devices (i.e., computers, tablets, smart phones) and Internet access could complete the survey. Autistic individuals without technology and/or Internet access likely did not receive information about the survey. Second, the majority of respondents (86.1%) were White with limited racially and ethnically diverse respondents. Future researchers should consider strategic methods to recruit more diverse respondents rather than relying on social media posts and other snow balling recruitment methods. Third, nearly all respondents (93%) reported needing Level 1 supports (requiring support; DSM-V; APA, 2013) related to their ASD. Therefore, implications for this study related to individuals with more significant support needs should be interpreted with caution. Results of the study can primarily be applied to individuals with the mildest level of autism support needs. Finally, the small sample size (N = 72) was below the recommended number of respondents for quantitative research (Green, 1991). Therefore, this should be taken into consideration when interpreting the statistical analyses. Given ASD is a low-incidence disability and this study represents an initial inquiry in this topic, we were pleased with the number of analyzed survey responses. However, large scale survey research may be advantageous to better understanding SIAs. Future researchers may also consider offering compensation to incentivize participation.

4.4Implications

Findings from this study indicate SIAs are indispensable in the lives of autistic adults. Incorporating SIAs into employment experiences of adults with ASD is one potential means to enhance job outcomes and satisfaction. Secondary special education teachers, transition specialists, job coaches and employers should capitalize upon the SIAs of employees with ASD to the betterment of local businesses and the broader community. However, simply matching a SIA to a job is not sufficient. Rather, a more holistic approach should be considered (Dreaver et al., 2020). Autistic employees will likely benefit from other employment strategies such as a supportive workplace environment and individualized job accommodations (Lindsay et al., 2021). Employers may also consider innovative hiring methods to recruit autistic employees (e.g., alternative job interviewing formats). In addition, counselors, psychologists, psychiatrists, and other mental health professionals should examine ways to utilize SIAs to enhance the well-being of autistic adults while also managing their co-occurring mental health conditions (i.e., anxiety, depression). Lastly, the viewpoints of diverse autistic adults should be incorporated while developing a better understanding of the value of SIAs to support employment and mental health outcomes. In particular, future researchers should employ strategic methods to recruit more women, transgender, and gender diverse participants in autism research. We were fortunate to have many types of gender diversity represented, but the voices of these individuals must be brought to the forefront of any discussion related to employment, mental well-being, and SIAs.