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Review
. 2024 Dec 2;6(4):495-509.
doi: 10.1089/aut.2022.0114. eCollection 2024 Dec.

The Lived Experience of Autistic Adults in Employment: A Systematic Search and Synthesis

David Thorpe  1 , Marisa McKinlay  2 , James Richards  3 , Kate Sang  3 , Mary E Stewart  1
Affiliations
Review

The Lived Experience of Autistic Adults in Employment: A Systematic Search and Synthesis

David Thorpe et al. Autism Adulthood. .

Abstract

Background: Employment is a critical factor contributing to the well-being and quality of life of autistic people of working age. Historically, research has tended to focus on interventions and employment-related outcomes, typically generated without the input of autistic workers. Interventions often work to help the autistic worker fit into the working environment rather than it being adjusted for the autistic worker. However, a growing body of research reflects autistic workers' experiences of employment with consideration given to how the workplace should change to reflect the differences of this historically marginalized group.

Methods: This study is a systematic analysis of existing research that focuses on and prioritizes autistic workers' experiences of employment. Our analysis draws on the social relational model of disability (SRMD), an approach increasingly applied in contexts of autism and employment. We systematically searched five journal databases, resulting in 34 articles that reflect the lived experience of autistic people in employment.

Results: We identified four themes through narrative synthesis: Navigating Social Demands; the Disabling Nature of the Work Environment designed for neurotypical workers; Adapt to Me; and Understanding, Knowledge, and Acceptance. The results draw on the SRMD, revealing nuances to inclusionary and exclusionary employment for the autistic workforce.

Conclusion: Our findings encourage the prioritization of the voice of autistic workers when designing working environments. They also function as a critique of the traditional approaches that placed employers, managers, and human resource professionals as the dominant agents of decision-making. In these traditional practices, the burden of making employment viable was on the worker, rather than the employer. The results of this study framed through the SRMD allowed for enhanced understanding of the barriers and new insights into how to improve the employment experience for autistic adults.

Keywords: adult; autism; employment; experiences; systematic review.

Plain language summary

Community brief Why is this an important issue? Autistic workers have some of the poorest outcomes of any part of the workforce with ∼78% unemployed. Even when in employment, autistic workers are often underemployed and have poor employment prospects. Employment can be part of a fulfilling life and has many associations with positive mental health and independence. Much of the existing research about the experiences of autistic people in work focuses on the voices of nonautistic people (e.g., family members and employers). In this study, we wanted to know more about autistic people's experiences in work. We wanted to use this information to make recommendations to help autistic people's work experiences better. What was the purpose of this study? This study brings together the research that has already been done about autistic people's experiences of work. We wanted to look across the different studies to find important patterns. We also used a theoretical model called the Social Relational Model of Disability (SRMD) to explore these studies through a new perspective. Through the SRMD, disability is not caused by the condition itself. Disability instead is a product of environments and society that are constructed without consideration for the needs of those with that condition. The perspective of the SRMD would allow us to explore autism employment from a new perspective and find new insights. Our goal was to better understand autistic worker's experiences and develop recommendations to improve work experiences. What did the researchers do? We searched systematically through academic databases for all the existing research about autism and employment that included the voices of autistic workers. The identified research articles were checked and then removed or accepted according to strict criteria until only a select few research articles remained. The criteria ensured that all 34 selected articles contained the first-hand experiences of autistic adults in employment. These articles were then to draw out the lived experiences of autistic people. Once these stages were complete the data were reinterpreted using knowledge from the literature and the SRMD to provide new understanding to the employment experience for autistic adults. What were the results of the study? We found four themes that describe autistic workers' experiences: Navigating Social Demands; the Disabling Nature of the Work Environment designed for neurotypical workers; Adapt to Me; and Understanding, Knowledge, and Acceptance. These themes describe a wide range of experiences. Navigating Social Demands captures the experiences of communication and relationships in the workplace. The Disabling Nature of the Work Environment discusses the factors and experiences that make the neurotypical work environment disabling toward autistic individuals. Adapt to Me discusses how improvements can be made to the general experience of employment through adapting the workplace toward the needs of the individual. Finally, Understanding, Knowledge, and Acceptance provides insight into how the attitudes of others impact the individual's experience of employment. What do these findings add to what was already known? This study builds on our understanding of autism employment. The disabling effects of the environment, social factors, and attitudes are highlighted in this research. Previous research has shown that communication conflicts can arise due to misunderstandings in the workplace. The current research builds on this and addresses how the autistic individual's communication needs are not accommodated for in the workplace. These findings address new ways to understand the employment experience for the autistic individual. The value of autistic individual's first-hand experiences is highlighted and the strength of the theoretical model to interpret these experiences is demonstrated. What are potential weaknesses in the study? Autistic workers have vastly different employment experiences. Not only is this through different careers and how those will lead to different experiences, but in addition, autistic individuals themselves experience the world through different perspectives. As such, our study cannot be used to understand every individual's experience and many of the findings may be specific to individual's experiences of employment. How will these findings help autistic adults now or in the future? These findings present useful insights into the autistic workers' experiences that can be used by employers, managers, and human resource professionals. This will allow autistic perspectives to be incorporated in the design of adjustments and changes to the workplace. The value of taking on autistic individuals' perspectives has been clearly demonstrated in this study. As such, this will help validate incorporating autistic individuals' voices in both research and in the practice of designing and implementing adjustments in the workplace.

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