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Autism in Adulthood: Challenges and Management logoLink to Autism in Adulthood: Challenges and Management
. 2020 Dec 11;2(4):289–295. doi: 10.1089/aut.2020.0006

Critical Reflections on Employment Among Autistic Adults

David B Nicholas 1,✉, Malvina Klag 2
PMCID: PMC8992865  PMID: 36600962

Abstract

Encouraging efforts have emerged in recent years to study and build employment opportunities for adults on the autism spectrum. In this Perspectives piece, we acknowledge this important work while offering critical reflections for consideration as the field of employment in autism advances. We call for five areas of increased focus: (1) nurturing long-term versus short-term employment success; (2) broadening employment readiness efforts beyond only the individual to the entire community employment ecosystem; (3) providing professional development that starts with an individual's strengths, and not with their disability; (4) building community employment support that can be independent of family support; and (5) striving for a good life versus just the next job. Overall, we aim to help galvanize the field toward greater consideration of individuals' quality of life and development, the broader community ecosystem around individuals and their families, and vocational stability over the life course, all on individuals' own terms.

Lay summary

Why is this topic important?

Despite encouraging international efforts for the past 15 years to advance employment for autistic adults, a low percentage of autistic adults are employed at any given point in time. Moreover, research shows that some who are employed struggle in their work situations.

What is the purpose of this article?

Our goal is to begin a conversation about what we believe to be promising areas of future focus in advancing employment for autistic adults. We hope that autistic adults and their families, practitioners, researchers, and policy makers find these reflections useful as we work together toward better employment options for adults on the autism spectrum.

What is the perspective of the authors?

As advocates, practitioners, researchers, and as a family member for one of us, we believe it is time to look beyond employment statistics and a historically short-term focus on employment. We would like to see a reorientation of our collective energies toward a longer-term view of employment that contributes to a good life for individuals, on their terms.

What is already known about this topic?

Over the last 15 years, many employment advancement programs for autistic adults have shown promising results. We have seen positive impacts from evaluations of these programs that include improved skills, more hiring of autistic individuals, shifting employer attitudes, more inclusive work environments, and high levels of productivity among hired autistic adults. We also have increased our understanding about the characteristics of supportive work environments for autistic people. That said, we also know that there are continuing low levels of employment for autistic adults. Furthermore, whereas there are some successful stories of autistic adults gaining employment, there are also, as noted earlier, stories of adults who are struggling in the workplace, with some in low-paying jobs and not able to use their skills.

What do the authors recommend?

We recommend five shifts in focus for the future: (1) nurture long-term rather than short-term employment success; (2) seek community-wide programming to support people on an ongoing basis, as opposed to a more narrow focus on individual-level job readiness; (3) provide professional development that starts with an individual's strengths, and not with their disability; (4) develop more comprehensive and accessible community resources instead of relying on families to offset community service gaps; and (5) uphold the goal of having a good life on one's own terms instead of only getting a job.

How will these recommendations help autistic adults now or in the future?

We hope that these recommendations help spark new conversations and collective approaches toward improving the employment landscape for autistic individuals. These approaches would move beyond a short-term job focus and individual-level readiness programming to also build supportive community ecosystems around individuals over time. In this way, we hope that individuals can more easily achieve employment over the long term that both works for them and contributes to the important and overarching aim of quality of life.

Keywords: autism spectrum, autistic, employment, quality of life, ecosystem

Introduction

As advocates, practitioners, and researchers, we are encouraged by initiatives in practice and in scholarship for the past 15 years to advance employment for people on the autism spectrum. Innovative programs that foster employment include the TEACCH Program® 1 and Project SEARCH® 2–4 in the United States, the National Autistic Society Prospects Program5 in the United Kingdom, EmploymentWorks® 6 in Canada, and the DXC Technology Dandelion Employment Program7–9 in Australia; each program demonstrating a range of positive outcomes such as improved employment access, employee independence, and employer attitudes.1–6,10

Organizations and programs with specific mandates to increase employment for autistic individuals appear to be gaining traction in areas, including, but not limited to, information technology and the creative arts.11,12 More employers are inclusively hiring people on the autism spectrum, with some even setting minimum hiring targets and creating other internal inclusion-based programming.13,14 Several programs, such as Ready, Willing & Able and auticon Canada (formerly Meticulon) in Canada, work with employers to create more inclusive work environments for autistic employees.15,16 Results are promising with respect to increases in employability skills or soft skills, financial independence/literacy among hired autistic individuals, employer attitudinal shifts,6,17 and the creation of positions that draw on individuals' skills and preferences.18

From a research standpoint, factors that seem to facilitate employment are emerging in the scholarly literature and appear to reflect supportive work environments. Workplaces that foster empathy, neurodivergence, and understanding about autism are linked with better outcomes for autistic individuals, including employment retention.6,19 Furthermore, employment opportunities seem to increase when workplaces that inclusively hire are viewed in a positive light by other businesses and consumers, showing a growing receptivity by the general public.20 In an Australian study, employers reported positive experiences when hiring autistic adults in regard to work productivity, skills, and employee costs.21 Autistic employees demonstrated qualities of reliability, integrity, and accuracy in their duties, which were admired by employers.21 Scott et al. also found that autistic employees were as productive as nonautistic employees, which challenged common stereotypes about the productivity of this population.21

Persistent Low Levels of Employment

Despite a growing knowledge base around skill development, supportive work environments, and pro-employment activities and attitudes, we note these gains have not yet significantly impacted employment rates and widespread hiring patterns.22,23 Low levels of employment around the world persist among individuals on the autism spectrum as compared with the overall population. Researchers have reported that the Canadian employment rate for developmentally disabled adults, including those on the autism spectrum is 22%, in comparison with 74% in the general population.24 The Australian Bureau of Statistics reported that the rate of labor force participation in the autistic population was 42%, compared with 83% for typically developing people.25 American data have indicated that just 58% of autistic adults in their early 20s have attained paid employment outside of the home.26

A conundrum exists in that persistently low employment rates remain despite efforts to increase them. Arguably, scholars and practitioners may require more time to demonstrate the impacts of recent programmatic advancement on population-wide employment trends. Perhaps greater integration of effective programs across the range of autistic adults seeking employment would yield better outcomes. Moreover, current employment statistics, although unacceptably low, might be better than what may have existed 15 years ago, had we been measuring employment in this population at that time. However, we posit that cumulative learning in the field is perhaps directing us to look more intensely at that which lies beneath the surface of statistical outcomes.

Beyond Employment Statistics

We believe that core challenges may be impeding employment success for autistic adults. Along with literature demonstrating limited field-based gains, we have encountered concerning accounts of vocational struggle and demoralization among autistic individuals.27–29 These stories indicate that beyond continuing poor employment statistics across the world, far too many working individuals on the autism spectrum remain in low-paying jobs that utilize lower-level skills and menial labor.29,30 We also have concerns that have emerged through our own independent and joint engagement in striving to improve employment support programming and research in the area of autism, cumulatively over three decades within two regions of Canada. We have been involved in this field as professionals, educators, researchers and, for one of us, a family member. Clearly, some stories of success exist, and we believe that we and others must study those experiences more deeply. Yet we have come across too many stories of discouragement, demoralization, and undesired job exit. The literature and our own experiences have allowed us to confront what we see as multidimensional and interconnected elements that potentially hinder autistic adults' employment pathways. We have engaged in conversations together verbally and in writing, over multiple years, that reflect on, and challenge, the conventions of employment programming. We maintain that these conventions have tended to have short-term orientations and conceptualized “employment” largely in terms of a singular entity or outcome. Our key concern of how employment fits within the larger, and what we would suggest more important, enterprise of creating a “good life,” has guided and no doubt nuanced, our discussions and reflections in this article. As we critically reflect on this growing body of knowledge, poor employment outcomes to date, and our own experiences and observations, we believe that it is time to further consider alternative employment support approaches and resources.

Toward Potential Opportunities for Advancing Employment

We integrate cumulative learning in this field with a call for five areas of increased focus to advance employment for autistic adults. They are as follows: (1) nurturing long-term rather than short-term employment success; (2) broadening employment readiness efforts beyond the individual to the wider employment ecosystem; (3) providing professional development that starts with an individual's strengths, and not with their disability; (4) building community employment support that is independent of family support; and (5) striving for a good life versus only the next job. We next explain each of these areas of opportunity. These opportunities may also variably apply to individuals with other developmental disabilities; however, the focus here is upon autistic adults.

Opportunity 1: Nurturing long-term rather than short-term employment success

Achieving short-term employment is often used as a metric of employment support success. However, for many, this leads to a frequently interrupted and inconsistent employment track record, along with a lack of employer/workplace investment in the employee. Employment support programs that utilize short-term strategies such as brief work experience or wage subsidies to incentivize employers may demonstrate initial positive outcomes. However, they also risk negative long-term consequences on sustained employment, particularly if employers only hire for a limited term. In such instances, a cycle of short-term support and potential frequent job loss can hinder an individual's income, morale, and future job prospects. For instance, individuals with a history of short-term jobs may be less competitive for longer-term positions given their employment history and potential gaps between jobs.

We also posit that support services often focus narrowly on job fit for a single role or position. Recent initiatives have innovatively offered customized employment support or tailored jobs that capitalize on the strengths, skills, and interests of the individual.12,31 We are indeed encouraged by these developments. Yet even with a potentially good fit, a given job (and especially an entry-level job) may present job-related difficulties that need to be navigated and supported over time after hiring occurs. For example, studies of individual workplace behavior have revealed challenges related to social communication and executive function in complex employment-related contexts. Müller et al. reported that autistic adults tend to be aware of their difficulties such as being isolated, experiencing communication challenges, and having difficulty creating social connections.32 Social demands of work, such as interaction with coworkers and customers, group interaction, problem-solving, and engagement with supervisors, may pose heightened challenges for these adults.33 Acute sensitivity to sensory conditions such as lighting, crowding, and noise in the workplace can heighten discomfort for some autistic individuals, which may make it difficult to complete job tasks.33

We, therefore, believe that it is critically important to think about fit for a particular job as only one important element within a constellation of relevant factors and individual needs that will evolve over time. Challenges at work require potential longer-term strategies of employment support. This may lead to greater understanding that job-related difficulties for an autistic person need not result in repercussions such as debilitating anxiety or job loss; rather, proactive strategies can be trialed to support the employee, employer, and coworkers in ameliorating issues. Amidst these considerations for support and intervention, we advise caution in ensuring that the demands of one's job (e.g., tasks, work environment, and workplace relationships) are not unduly taxing or debilitating. This calls for targeted effort of stakeholders—the employee, employer, employment support personnel/job coach, and possibly other community support providers—to jointly work toward a vision and plan for long-term employment success. This commitment can entail the identification of needs and solutions.

Given employment difficulties that autistic youth and adults may experience, we would also like to see an increase in varied opportunities for work exposure and job sampling that start earlier in the life course (e.g., adolescence). Increasingly, the literature calls for early employment opportunities particularly while in school.4,34,35 However, in many jurisdictions, such job options both in adolescence and young adulthood may be less available to autistic people than peers. The potentially shortened runway of work experiences and opportunities to try various jobs in diverse work settings, may limit later work/career possibilities. Negative implications include missed chances to access and acclimatize to various employment settings, develop one's resume, and build employment experiences and strategies. This gap also may leave youth and adults on the autism spectrum with less rich employment experiences and a substantially reduced repertoire of employment contacts. To redress these concerns, we need increased and coordinated efforts to improve longer and more highly supported pathways to and through employment across a range of work settings and roles over time.

Opportunity 2: Broadening employment readiness efforts beyond the individual to the wider employment ecosystem

Employment readiness and support programming largely has been implemented at the individual level, with an emphasis on social or behavioral skill-building. Building skills for employment is an important area of focus—perhaps one in which service providers generally feel more able to affect. However, advocates and scholars increasingly also are calling for supportive employment policy and community-level advancement. Sustained employment support requires multiple elements that build on both individual and contextual strengths.6,36 This insight highlights the importance of a supportive ecosystem, with elements that include individual and possible family engagement, formal and informal employment support, broader community resources (e.g., transportation, mental health, and housing), and informed workplaces (e.g., capacity building for employers, supervisors, and coworkers)—all coordinated and nestled within complementary public policy. Concerted broad-scale interventions offered to the employment ecosystem could include workplace capacity building, broader community resources, pro-diversity policy, attitude-shifting media campaigns, and ongoing support to families.27 These elements are seen to mutually and collectively offer potential to facilitate favorable employment outcomes.6,34,37

Within these systemic initiatives, we need proactive attention to intersecting social determinants of health barriers such as sex and gender, poverty, immigration status, indigenous status, mental health issues, and impeded social support. Building supportive labor, social, and health policy is integral to success in addressing these barriers and ultimately nurturing inclusive employment and community integration. Without this ecosystemic support, we are concerned that lingering patterns of high un- or underemployment may persist, with debilitative impacts on autistic individuals and/or their families, as well as lost productivity to society at large.6

Opportunity 3: Providing professional development that starts with an individual's strengths, and not with their disability

Services offered by autism support agencies seemingly often reflect conceptual or service models that were originally developed for children, given a historic emphasis on pediatric services. Accordingly, service offerings may reflect common or traditional behavior-based orientations in employment support. We have also seen employment training programs that focus on cursory skills such as resume writing and interviewing, without also including other important facets of need for more complex areas of skill or capacity development. As a result, individuals may not be given sufficient support for pivotal areas of employment-related competency such as soft skills. If these areas are not adequately supported, individuals may be at heightened risk for job challenge and/or loss.

We urge caution with respect to the fit and ethics of the aforementioned strategies,38 with an additional critical call to consider the potentially beneficial role of adult learning principles in supporting adults on the autism spectrum.6 Tenets of experiential learning, person-centeredness, and sharing of cognitive information in situ potentially are more respectful and resonant with adult-based support in the context of employment, whether one is autistic or not. Person-centeredness inherently honors personal agency and invites educational approaches that are individualized to each person and their learning needs, aims, and strengths. The literature highlights adult learning principles of personal motivation within practice opportunities, in the aim of achieving goals and resolving pressing challenges important to individuals.39 Ensuring such prospects to learn, apply learning, and overcome barriers/challenges to learning seems integral to better opportunity, self-determination, and well-being. These approaches locate the person as central to their learning process, and dissuade problematizing peoples' behaviors. We support an orientation that celebrates and centers on individuals and their strengths as they advance along their life journey.

Opportunity 4: Building community employment support that is independent of family support

In our work over the years, we have observed that families often offer high levels of support to their loved one on the autism spectrum, including emotional support, financial resources, transportation assistance, and long-term housing. This assistance often extends well into adulthood and even into middle age. Individual satisfaction with employment often depends in part on the provision of job leads and advocacy by a family member. The parent or another family advocate may navigate the employment landscape by liaising with employers and/or supporting the individual in their adaptation to a job. We recognize, respect, and commend families for their frequently integral role of nurturing transitional and employment well-being. However, it seems presumptuous that family members be left responsible for potential ongoing and extraordinary levels of support.

Such familial support may heighten risk for family member exhaustion, impaired health, delayed retirement, and impeded individual or overall family quality of life.40 This affects autistic individuals, their families, and society. Continued reliance on families for support may have life-long impacts. These impacts can even pass from one generation to the next if, for example, care is presumed to eventually be transferred to another family member (e.g., a sibling), without them desiring, understanding, or choosing such a role. Moreover, family roles and other complexities may have confounding impacts that differentially affect individuals and families across socioeconomic or other social determinant strata. These elements merit further consideration and study.

Finally as we consider family roles relative to employment, it is important not to presume that an autistic adult necessarily desires family involvement in their employment or daily life. In sum, the eventual need for, and/or potential desire of, parents to step back from more intensive levels of support to their adult offspring warrant a compendium of accessible and coordinated community support resources, including employment services. We need to address how to collectively and intentionally build these resources to optimally benefit individuals and their families.

Opportunity 5: Striving for a good life versus just the next job

Supportive programs have aimed to enable access to jobs. Although this is a laudable goal and a pressing priority, we maintain that it should be situated within the ultimate aspiration of a good life on terms important to the autistic individual. We need to be intentional and take time to understand what that means for each person on the autism spectrum, and how employment fits within that overall aim. We acknowledge that finding one's passion in work or the most ideal career may not become a reality for everyone, including, but not limited to, those on the autism spectrum. However, we must strive to this end, and further consider how work can contribute to individuals experiencing lives that are gratifying and rewarding as contributing members of society. This includes individuals' access to meaningful employment and being compensated fairly for their work.

We appreciate the instructive advice of Dr. Catherine Frazee, former Chief Commissioner of the Ontario (Canada) Human Rights Commission, who has sought social justice aims of disability rights, community engagement, and inclusion for individuals with disabilities. She argued, “Citizenship means having rights, but it also means belonging…. Belonging in schools and universities, in places of work and places of worship, in politics, art and commerce; belonging in family, community, and nation.”41 Ensuring employment that contributes to self-determination, full societal inclusion, and the highest possible quality of life must remain as the integrated aim for employment support initiatives.

Future Directions

These reflections, based on cumulative learning by others and ourselves, challenge stakeholders in this field to consider how we think about and advance employment among autistic adults. It seems exceedingly important that pathways to and through employment be authored and directed by autistic people themselves. In that vein, multifaceted employment support can be designed and adapted as needed, based on an individual's values and priorities versus an imposed model built on a predetermined formula or set of expectations.

We acknowledge, however, that proactively navigating an employment/career path is not necessarily easy—whether for autistic individuals or others in society today. Quality of life and its link to employment may require multiple levels and types of support as well as varied outcome markers and evaluation approaches. These efforts may build on and/or challenge pre-existing systems of employment support and discourses. Given the many interconnected factors at play in employment success and challenge, coordinated efforts will be needed across individual, vocational, community, and policy levels.

In considering recent geo-health shifts, we would be remiss in not acknowledging that the emergence of the COVID-19 pandemic has dramatically changed the worldwide employment context. This has implications for many who seek employment or are employed, with a commensurate restructuring of workplaces and of working that likely has just begun (at the time of writing/publication). On the one hand, this may bring new challenges for many autistic adults already struggling to find sustained employment that works for them. On the other hand, we sense that this unsettling moment potentially brings forth opportunity and the following new questions on which we now reflect: (1) Will new requirements for physical distancing, varied work schedules, and working from home, support more of a leveling of the employment playing field for autistic individuals for whom these shifts may be more comfortable? (2) Can autistic individuals, some of whom may work better in these circumstances, lead the way for others who are currently struggling to envision a satisfying work life with these new restrictions in place? and (3) As the pandemic lays bare pre-existing systemic weaknesses and resource gaps particularly relating to vulnerable populations, will communities become more open to proactively addressing employment-related and other needs of autistic adults? Our hope is that these difficult times spawn productive conversations that advance new and inclusive ways to envision employment and community engagement.

From a research perspective, we see the importance of examining employment-related supports needed by autistic people in this pandemic context. In the immediate and longer term, we recommend longitudinal and systems-level methodologies that appraise and in turn contribute to community and support system sufficiency over time. Developing evaluation methods that measure systemic outcomes such as community engagement, as well as individualized outcomes and processes may add to our repertoire of best practices6,42–44 and evaluative acumen. Such methods must acknowledge and embrace the complexity inherent in these processes and systems. We invite greater attention to, and scrutiny of, the complex layers of intervention and experience, including support for the range of stakeholders within the employment ecosystem. We further encourage consideration of the social determinants of health relative to potential areas of marginalization that affect many autistic individuals. For instance, women and/or gender diverse individuals on the autism spectrum likely face additional or perhaps qualitatively different experiences and barriers relative to employment inclusion. In addressing such confounding barriers, gender-based analysis and action research may assist in priority setting and on-the-ground action.

Conclusion

Despite much-needed efforts to enable employment, substantial gaps remain in the quest for sustained employment prospects that contribute to a good life for adults on the autism spectrum. We need heightened and strategic collaboration among those seeking to improve employment and life outcomes for autistic people. Despite the complexity inherent in coordinating multifaceted initiatives to advance employment experiences, we firmly believe that these multiple strands compel us forward in contributing to meaningful and happy lives on terms that matter to each autistic individual.

Acknowledgments

We thank the autistic adults, family members, employment support personnel, employers, and researchers, who have all contributed to the ideas presented in this article. Thanks also to Christopher Kilmer who reviewed the article and offered helpful editorial and formatting support. Finally, we thank the journal reviewers for their helpful insights in improving this article.

Authorship Confirmation Statement

Both authors (D.B.N. and M.K.) made substantial contributions to the conception and development of this article, including initial writing and revising the full draft. For several months they had calls about the content and sent drafts back and forth for continued development and refinement. Both authors have reviewed and approved this article before submission and agree to be accountable for all aspects of it. This article has been submitted solely to Autism in Adulthood and is not published, in press, or submitted elsewhere.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

D.B.N. has received funding from the Sinneave Family Foundation.

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