Autism and Mental Health: The Role of Occupational Therapy

Abstract

Research has indicated a high prevalence of mental health problems among autistic people, with elevated rates of depression, anxiety, and suicidality. The profession of occupational therapy has its roots in mental health and can offer a unique focus on occupation to support the mental health needs of autistic clients. In this Guest Editorial we introduce articles for this special issue of the American Journal of Occupational Therapy related to autism and mental health and use the Person–Environment–Occupation Model. The articles offer insights into how interactions among person, environment, and occupation factors affect the mental health of autistic populations and demonstrate ways that mental health can be supported through occupational engagement. Opportunities to support the mental health of autistic people include promoting engagement in meaningful activities, supporting individual strengths, and bolstering clients’ sense of self and identification with their autistic identity. Future research is needed to uncover and test interventions to support autistic clients and should reflect cultural humility and participatory approaches. We chose to use identity-first language (rather than person-first language) to describe the autistic community in this Guest Editorial out of respect for common community member preferences and in accordance with recommendations for anti-ableist language use (Bottema-Beutel et al., 2021). Decisions about language for each article in this special issue were made by the respective authors.

This special issue includes review articles, qualitative exploratory studies, assessment tool content validation, and novel interventions and reveals opportunities for growth in the field of occupational therapy, both for more research as well as for intervention development and clinical involvement to support clients with autism across the lifespan.

Mental health and well-being are important for all people. These core human needs have received greater public attention over the past several years as the coronavirus disease 2019 (COVID-19) pandemic swept the globe, drastically affecting physical health and mortality while also leaving a notable mark on the world’s mental health. The World Health Organization (2022) estimated that 970 million people lived with mental health disorders in 2019, and that number grew during the pandemic, with marked increases in reported depression and anxiety.

Recent research has begun to shine a light on the needs related to the mental health and well-being of autistic people, providing data that bolster the personal accounts and priorities of many in the autistic community (Benevides et al., 2020; Morgan & Donahue, 2020). Studies have pointed to high rates of anxiety, depression, suicidality, and more (Hossain et al., 2020; Lai et al., 2019). Yet much remains unknown about the mental health needs of autistic people. Why are they at such high risk of mental health challenges? What can be done to reduce risks, enhance well-being, and support autistic people who are experiencing co-occurring mental health problems?

The occupational therapy profession has long been involved in addressing the mental health needs of community members (American Occupational Therapy Association, 2017). Occupational therapy has its roots in mental health, as far back as 18th-century Europe, when the “moral treatment movement” began. A focus on occupational engagement and full participation in life is occupational therapy’s distinct contribution to the field of mental health for people at risk of or experiencing mental health conditions. Occupational therapy practitioners use a client-centered approach to support the four dimensions of health identified by the Substance Abuse and Mental Health Services Administration: (1) health (well-being and symptom management), (2) home (maintenance of a safe and stable place to live), (3) purpose (meaningful daily activities), and (4) community (relationships and social networks; Stoffel, 2013).

For this special issue, “Occupational Therapy and the Mental Health Needs of Autistic Clients,” we solicited manuscripts that report research related to autism and mental health with relevance to the field of occupational therapy. We are pleased to present a range of study types and foci that relate to the mental health of autistic people. This issue includes review articles, qualitative exploratory studies, assessment tool content validation, and novel interventions. Topics related to mental health in this issue include the effects of the COVID-19 pandemic, strengths-based approaches, environmental adaptation and clinician education to support mental health, sensory processing, social and physical pain experiences, self-care, and an intervention to support healthy relationships. We also view this special issue as a way to see opportunities for growth in the field of occupational therapy, both for more research as well as for intervention development and clinical involvement to support autistic clients across the lifespan.

Considering the Person, Environment, and Occupation Factors to Understand the Mental Health Needs of Autistic Clients

The Person–Environment–Occupation (PEO; Law et al., 1996) Model is commonly used in occupational therapy to understand the needs of clients. The PEO Model considers a person, their environment, and their occupations, as well as the integration of these factors, to identify areas in need of support and intervention. Although mental health challenges are often framed as a problem within the person, it is critical to understand external influences on the person as well as interactions between the person, their environment, and the various occupations they engage in throughout their life. Thus, the PEO Model may be useful to occupational therapy practitioners and researchers when considering the mental health needs of autistic clients.

In this special issue we see examples of person factors (such as co-occurring diagnoses, experiences of pain, sensory processing, and strengths), environment factors (social and physical environments), occupations (self-care, social participation, relationships, daily activities), and how the integration of these three factors relate to mental health for autistic people.

Personal factors can include individual traits and characteristics, which may influence one’s mental health. For instance, two studies in this issue explore people’s experiences of pain (social and physical; Levi et al., 2023, and Ortiz-Rubio et al., 2023, respectively) and their connection to mental health. Spielmann et al. (2023) examine sensory processing and integration differences and find that they are associated with self-reported depression among autistic adults. In another example, Murthi et al. (2023) review articles that examined autistic strengths and identify that strengths-based interventions are associated with positive mental health outcomes such as reduced anxiety and increased well-being and resilience.

There are also numerous examples of the importance of considering the environment—and its interaction with person and occupation factors—when treating autistic clients, in an attempt to understand their mental health challenges and support well-being. Physical environments may be stress inducing or calming for autistic people, depending on the features of the environment, such as sensory stimuli, social pressures, and familiarity. Hospitals, for example, may be extremely distressing for myriad reasons. Mahoney et al. (2023) describe an intervention to improve autistic children’s hospitalization experiences by providing education and resources to nursing staff in a pediatric hospital. Consideration of the sensory aspects of environments and occupations and how they interact with person factors, such as sensory processing, is also critical (Spielmann et al., 2023).

Regarding social context, Dallman et al.’s (2023) qualitative study of mental health experiences during the COVID-19 pandemic indicates that social experiences both supported and hindered mental health for autistic adults. Families are also a critical aspect of the social environment, as demonstrated by Simpson et al.’s (2023) parent-mediated intervention for autistic preschoolers with co-occurring anxiety. Levi et al. (2023) specifically explore the concept of social pain, highlighting the misunderstandings that can occur between autistic people and nonautistic people in their communities. These kinds of misunderstandings in social interactions are often reported and were characterized by autistic scholar Damian Milton (2012) as a “double empathy problem” whereby autistic and nonautistic people often face barriers in understanding one another.

Finally, occupational therapy providers and researchers are keenly focused on occupational participation: engagement in activities throughout one’s life. Occupations may be a means through which autistic clients experience challenges that contribute to negative mental health experiences. Smith et al. (2023) describe the importance of community social participation for the mental health and well-being of families of young autistic children, and how it can be challenging to have meaningful participation experiences. However, participating in meaningful occupations can also be a source of mental well-being and pose opportunities for enhanced mental health. For example, in a study cited in Murthi et al.’s (2023) review, Patten Koenig and Williams (2017) identified that engaging in activities of interest was calming and stress relieving for autistic participants, supporting their mental health. Moreover, learning how to engage in healthy relationships through a novel intervention was associated with reductions in depression and anxiety for autistic participants in Graham-Holmes et al.’s (2023) study. Steele and Grajo (2023) examine the content validity of a self-care assessment tool, providing an opportunity for future studies to look closely at family engagement in self-care occupations and their associations with mental health.

Opportunities to Support the Mental Health of Autistic People

This special issue also creates an opportunity to consider ways in which the mental health of autistic people can be supported. The studies presented in this special issue offer guidance, such as through environmental adaptations, education for professionals who work with autistic people, working with families, and promoting self-care with autistic people and their families. Working with autistic people to promote coping strategies may help, but this should be paired with supporting them to advocate for their needs and for themselves, to reduce the stigma and discrimination they experience. Occupational therapy practitioners can help autistic people to recognize, acknowledge, and bolster their strengths and to advocate using those strengths as assets in environments such as schools and workplaces. It is critical that practitioners doing this work have an awareness of autistic culture along with cultural humility and are neurodiversity affirming in their practice to best support clients’ mental health and to avoid harm (Williams et al., 2021).

Dallman et al.’s (2023) article focuses on the experiences of autistic adults during the COVID-19 pandemic, describing both positive and negative impacts. During the pandemic many things changed in society. For autistic adults, some of these changes were experienced positively and alleviated mental health burden. Now that society has become more adaptable in many ways—for example, by offering online participation options for events such as conferences—continuing some of those changes and opportunities for flexibility may benefit autistic people and their mental health. Therefore, instead of rushing to “return to normal,” we can use this time to reflect on which adjustments would be useful to maintain.

Future research in occupational therapy can build on the topics addressed in this special issue to further examine ways in which interactions of person, environment, and occupation can contribute to enhanced mental health for autistic community members. Occupational therapy researchers are well positioned to address this critical area of research by working with interdisciplinary teams. Programs of research would benefit from the authentic inclusion of autistic people in the research process (Nicolaidis et al., 2019) to ensure respect for and relevance to the community.

The knowledge generated through research in this area should also be used to improve educational standards to enhance the development of future occupational therapy professionals who work with autistic clients. Occupational therapy practitioners can support autistic people and their families by using cultural humility and having respect for autistic identity. Through continued research and improved education and practice, the occupational therapy profession can support reducing the risks of mental health challenges, a better understanding of autistic lived experiences, and enhanced quality of life for autistic clients throughout the lifespan.