Abstract
The primary purpose of this position statement is to define the role of occupational therapy and the scope of occupational therapy services available for persons on the autism spectrum to audiences external to the occupational therapy profession. In addition, this document is intended to articulate for occupational therapy practitioners the role and support of the practice of occupational therapy for this population. 1
AOTA’s updated position statement defines for audiences external to the occupational therapy profession the role of occupational therapy and the scope of occupational therapy services available for persons on the autism spectrum and articulates for occupational therapy practitioners the role and support of the practice of occupational therapy for this population.
Many medical providers and related professional organizations have long advocated for the use of person-first language (i.e., “person with autism”) when referring to recipients of their services. However, identity-first language (i.e., “autistic person”) is preferred by many within the autism community (Bottema-Beutel et al., 2020; Bury et al., 2020; Foley & den Houting, 2020; Kapp et al., 2013; Kenny et al., 2016; Shakes & Cashin, 2019), though parents were much less likely to endorse “autistic person” than were persons on the autism spectrum (Kenny et al., 2016). The American Occupational Therapy Association (AOTA) recognizes the complexity of determining appropriate identifying language for persons on the autism spectrum. In the absence of a clear consensus regarding the preferred language (Botha et al., 2021; Vivanti, 2020), this document uses “person on the autism spectrum.” Its use aligns with the profession’s core values of altruism, equality, and dignity and has been supported as a suggested more neutral alternative to “person with autism” (Botha et al., 2021; Bottema-Beutel et al., 2020; Bury et al., 2020; Kenny et al., 2016). Practitioners are encouraged to use professional judgment and collaborate with service recipients to guide their selection of language in accordance with the preferences of their clients.
Background
Autism spectrum disorder (ASD) is the diagnosis used in the Diagnostic and Statistical Manual of Mental Disorders (fifth ed.; DSM–5; American Psychiatric Association, 2013) to describe two clusters of symptoms that range in type and severity and include (1) “persistent deficits in social communication and social interaction” and (2) “restricted, repetitive patterns of behavior, interests or activities” (p. 31). Severity ratings are assigned to the core social communication and focused behavior symptom areas, and the presence of other differences (i.e., intellectual, language related) and association with comorbid conditions (e.g., Rett syndrome, Fragile X syndrome, or epilepsy; anxiety or depressive disorders; feeding, elimination, or sleep disorders) is documented. Taken together, the recording of diagnostic feature severity, accompanying differences, and associated conditions (if present) allow the DSM–5 ASD diagnosis to reflect the full spectrum of symptom presentation, removing the need for other historic diagnostic categories (e.g., autistic disorder, Asperger disorder, and pervasive developmental disorder–not otherwise specified) outlined in earlier editions of the DSM.
In contrast to a medical diagnosis, the educational definition of ASD was designed to identify children eligible for special education and related services in publicly funded schools under the Individuals with Disabilities Education Improvement Act of 2004 (IDEA 2004; Pub. L. 108–446). Under IDEA 2004, autism is defined as a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age 3, that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences (IDEA 2004, 34 CFR §300.8[c][1][i–iii]).
The child’s symptoms must adversely impact their educational performance to be determined eligible for services in school. Occupational therapy is recognized under Part B of IDEA 2004 as a related service and as a primary service under Part C. Thus, occupational therapy must be provided to children on the autism spectrum if those services will help the child benefit from special education (IDEA 2004, §602[26][A]). Because educational classification and identification criteria vary considerably from state to state, readers are referred to specific state policies and requirements for additional information.
Prevalence rates for ASD have increased significantly over the past four decades, with a reported 181% increase since 2002 (Centers for Disease Control and Prevention [CDC], 2020; Chiarotti & Venerosi, 2020; Fombonne, 2020). Recent CDC data from the Autism and Developmental Disabilities Monitoring Network on the prevalence of ASD in the United States identified 1 in 54 children as having ASD (CDC, 2020), with boys 4.3 times more likely to have ASD than girls (1 in 34 boys; 1 in 145 girls). Parent-reported ASD data from available national health surveys (i.e., National Survey of Children’s Health, National Health Interview Survey) note a higher prevalence of 1 in 40. The estimated global prevalence of ASD in children is 0.9% to 1.5% (Elsabbagh et al., 2012; Fombonne, 2020; Meyers et al., 2019).
AOTA (2020b) asserts that “Occupational therapy practice emphasizes the occupational nature of humans and the importance of occupational identity to healthful, productive, and satisfying living” (p. 4). Occupational therapy practitioners work collaboratively with people on the autism spectrum, their families, other professionals, organizations, and community members in multiple contexts to advocate for and provide a range of needed resources and services that support individuals’ ability to participate fully in their self-determined life (Case-Smith & Arbesman, 2008; Kuhaneck et al., 2015; Tanner et al., 2015; Tomchek & Koenig, 2016; Watling & Hauer, 2015; Weaver, 2015). The importance of occupational therapy services is demonstrated by the consistent identification of occupational therapy as the second most frequently accessed service by individuals on the autism spectrum (Bilaver et al., 2016; Interactive Autism Network, 2011; McLennan et al., 2008; Monz et al., 2019; Yingling & Bell, 2020).
Occupational Therapy Domain and Process
The term occupations refers to “the everyday activities that people do as individuals, in families, and with communities to occupy time and bring meaning and purpose to life. Occupations include things people need to, want to, and are expected to do” (World Federation of Occupational Therapists, 2012, para. 2). They denote personalized and meaningful engagement in daily events by individuals. Occupations are categorized into activities of daily living (ADLs), instrumental activities of daily living (IADLs), health management, rest and sleep, education, work, play, leisure, and social participation within their natural and daily contexts (AOTA, 2020b).
Occupational therapy practitioners’ holistic understanding of person, occupation, and context uniquely positions them to highlight the strengths of people on the autism spectrum and address client-specific goals and priorities for participation in daily occupations. Occupational therapy interventions focus on engaging clients in activities and occupations of daily life. This particular focus on participation in occupations often differentiates occupational therapy from other providers on a care team. Whereas many service providers focus services on skill building with the intent to generalize, occupational therapy services start by considering function and participation in authentic contexts. Practitioners may engage with clients and their support system in various settings, including the home, clinic, workplace, and community. Examples of occupations across the life span that are the focus of evaluation and intervention by occupational therapy practitioners are included in Table 1.
Common Occupations in Which Occupational Therapy Practitioners Partner With a Person on the Autism Spectrum to Maximize Successful Participation
Client-centered occupational therapy service delivery includes evaluation and intervention to achieve targeted outcomes building upon individual strengths and using occupations to promote health, well-being, and participation in life (AOTA, 2020b). The client accesses services at the person, group, or population levels; they may include direct service, consultation, education, and advocacy to support the person, family members, health professionals, educational staff, and communities in which the client engages. The intervention plan is customized to the client’s unique characteristics, needs, desires, and priorities and is built upon the client’s personal strengths and interests. The frequency and duration of intervention are individually determined.
Persons on the autism spectrum can demonstrate complex challenges across multiple occupations and performance areas. Therefore, as goals are achieved, intervention implementation is changed and modified to address all client priority areas. Occupational therapy practitioners work with persons, groups, or populations to promote engagement in occupations. At the person and group levels, practitioners collaborate with family, caregivers, educators, and other team members to understand the daily life experiences of individuals on the autism spectrum and those with whom they interact. At the population level, practitioners may educate staff and design programs and environments for individuals or groups who are served by an organization to be more inclusive of persons on the autism spectrum. At the population level, occupational therapy practitioners may also engage in education, consultation, and advocacy initiatives with communities or ASD consumer groups.
The evaluation and intervention components of the occupational therapy process across all client categories are illustrated through case examples, which are presented in Exhibits 1–8. Specific interventions highlighted in the case examples are based on evidence from the most recent AOTA systematic reviews (Kuhaneck et al., 2015; Tanner et al., 2015; Tomchek et al., 2017; Watling & Hauer, 2015; Weaver, 2015), and guidelines from the National Autism Center (NAC, 2015), and National Clearinghouse for Autism Evidence and Practice (NCAEP; Steinbrenner et al., 2020). Specific discussion of evaluation and intervention components of the occupational therapy process are identified in the sections that follow.
Kamau, Age 2-1/2, in Early Intervention
Jorge, Age 6 Yr, School Setting
Asa, Age 15 Yr, Outpatient
T.J., Age 20 Yr
Sanjaya, Age 34 Yr
Martina, Age 47 Yr, Group Home
Adult Group
Organization
Note. ADLs = activities of daily living; ASD = autism spectrum disorder; EI = early intervention; IADLs = instrumental activities of daily living; IEP = individual education plan; IFSP = individualized family service plan; LMFT = licensed marriage and family therapist; OT = occupational therapist/occupational therapy; SLP = speech–language pathologist.
Evaluation
Evaluation is comprehensive and tailored to the concerns of the specific person, group, organization, or population. Information is collected through records review, interviews, structured observations, and standardized assessments. The evaluation process is designed to provide an understanding of the client’s individual occupational profile and performance. At the group level, evaluation processes may focus on analyzing a program structure, resources, and services that support engagement of people on the autism spectrum in desired occupations. At the population level, practitioners may focus the evaluation process on collaborating with groups who work with or on behalf of people with ASD, or groups of people with ASD, to identify their capacities and needs to support participation in occupations.
Practitioners collaborate with clients to develop thorough and comprehensive occupational profiles that guide evaluation methods and support intervention planning (AOTA, 2021). In doing so, it is important to identify individual strengths and preferred interests as meaningful occupations for self-determined intervention planning and self-advocacy. Formal preference assessment often accomplishes this goal through a systematic process that identifies a hierarchy of potentially reinforcing items or activities. The evaluation process also includes an analysis of the client’s strengths and challenges related to occupations, performance skills, performance patterns, body functions and body structures, and activity or occupational demands. It is recommended that practitioners conduct comprehensive, individualized assessments of occupations relevant to life roles in natural contexts, when possible, to allow for accurate activity analysis and to clearly identify the impact of ASD features and the environment on occupational performance (Kanne et al., 2009; Tomchek & Koenig, 2016). Moreover, by recognizing the vital role family members, caregivers, and significant others have in the occupational engagement of the person on the autism spectrum, practitioners often consider the needs and desires of the full family system. Relevant barriers to occupational performance are identified through analysis of the complex relationship among occupations, client performance skills and patterns, and contexts, including environmental and personal factors.
Evidence indicates that people on the autism spectrum may have difficulties in areas of occupation (e.g., ADLs, IADLs, health management, rest and sleep, play, leisure pursuits, social participation, education, work) and performance patterns, performance skills, and client factors (e.g., sensory integration and modulation, self-regulation, praxis, and motor skill and imitation); therefore, occupational therapy evaluations conducted at the individual level should assess these areas (Filipek et al., 2000; Hyman et al., 2020; Rodger et al., 2010; Tomchek & Koenig, 2016; Volkmar et al., 2014; Zaks, 2006). When using direct assessment to evaluate these areas, adaptations to the typical testing situation, environment, and materials may be necessary to obtain the most accurate measure of abilities and ensure optimal performance of the individual (Filipek et al., 1999, 2000; Tomchek & Koenig, 2016; Watling & Tomchek, 2018). Possible modifications may include ▪ using a visual schedule to structure the flow of the evaluation process or test items; ▪ adapting the verbal directions or adding nonverbal cues (e.g., gesture, visual, model, picture) to enhance understanding; ▪ recognizing the benefits of using special interests, consistency preferences, positive reinforcement, and priming principles to sustain engagement for item administration; ▪ scheduling additional visits to allow familiarity and comfort with the environment or evaluator to allow for smoother transition into the testing process; and ▪ modifying the testing environment or position.
A key element of the evaluation process is accurate documentation. An occupational therapy practitioner should always refer to assessment manuals for modification and allowances within standardized procedures, or document when they were not completed according to established standardization. Recent book chapters and practice guidelines have been developed to inform the practice of occupational therapy related to ASD. Many of these include comprehensive guidance on the evaluation process (Kuhaneck & Watling, 2019; O’Brien & Kuhaneck, 2019; Schell & Gillen, 2018; Tomchek & Koenig, 2016; Watling & Tomchek, 2018). These additional resources provide more detailed information on the evaluation process for people on the autism spectrum than is included in this document.
Intervention
Occupational therapy intervention is designed collaboratively by the practitioner and client in response to the results of the evaluation and is implemented to address the identified challenges in occupations, performance patterns, performance skills, body functions and body structures, contextual affordances, and activity and occupational demands. Service delivery reflects the occupational demands characteristic of varying life stages. For example, during early childhood, and with newly diagnosed children, occupational therapy intervention emphasizes social communication, engagement, and behavior regulation, as well as parent education and training and establishment of healthy family routines (Little & Wallisch, 2018). During the childhood years, intervention includes family members and other professionals on the service delivery team, such as school personnel (e.g., teachers, instructional assistants, bus drivers), and focuses on the child’s developmental progression in motor, adaptive, emotional, social, and academic domains (Hilton, 2018). In adolescence, intervention emphasizes the growing independence across domains of function as the client transitions from childhood to adulthood and transitions from secondary education to employment or higher education (Orentlicher & Case, 2018).
Throughout the adult years, intervention may vary widely as the individual moves through different life stages. In all cases, intervention is customized to meet the unique needs of each client in accordance with individual living situations, relationships, the ability to obtain and maintain employment, personal desires for leisure, and opportunities for social and community engagement (Pfeiffer, 2018). Needs vary with life stage, severity of symptoms, community supports and available resources, personal priorities and preferences, and development of new skills and strategies for success. Addressing needs related to mental health, social emotional function, behavior regulation, flexibility and adaptability, and health and wellness is considered by occupational therapy practitioners for clients of all ages and throughout the course of service delivery (Lin & Huang, 2019; Tomchek & Koenig, 2016). Individuals of all ages on the autism spectrum and in society as a whole benefit from population-level interventions, which remove disparities in access to and quality of services by advocating for and implementing practices at the macro level, such as models for health promotion or life course approaches (Benevides, et al., 2018).
When planning and implementing interventions, occupational therapy practitioners collaborate with clients and persons in their identified support systems (e.g., families, teachers, employers) to customize intervention plans that address clients’ priorities for achieving greater function. The practitioner shares knowledge of theoretical principles, models, and frames of reference; ethical considerations; and available evidence. Collaborative decision-making processes facilitate the collective consideration of client status, client strengths, contextual affordances, opportunities for self-determination, and available resources for occupational engagement, which in turn inform the selection of intervention types and approaches (AOTA, 2020c; Koenig & Shore, 2018). The practitioner then uses professional reasoning in conjunction with ongoing client collaboration to guide clinical decision-making, both in preparation for and throughout intervention delivery. Occupational therapy practitioners use many established interventions as identified by the NAC (2015) and a wide range of the interventions recognized as evidence based by the National Clearinghouse of Autism Evidence and Practice (NCAEP; Steinbrenner et al., 2020), including ▪ antecedent-based interventions, ▪ augmentative and alternative communication, ▪ Ayres’ Sensory Integration®, ▪ cognitive behavioral and instructional strategies, ▪ exercise and movement, ▪ modeling, ▪ naturalistic and developmental interventions, ▪ parent and teacher implemented interventions, ▪ prompting, ▪ reinforcement, ▪ response interruption and redirection, ▪ self-management, ▪ social skills training and social narratives, ▪ task analysis, ▪ technologically aided instruction and intervention, and ▪ visual supports.
Outcomes
Targeting outcomes of service and transition planning is integral to the occupational therapy process. Outcomes describes what clients aspire to achieve through occupational therapy intervention and encompasses goals that are important to the client within the dynamic physical and social environments and cultural contexts where functioning occurs. Outcomes are important for determining future actions, such as frequency of intervention, progression, and transition out of services. Targeting outcomes involves exploring a client’s priorities, collaborating to design interventions to achieve those priorities, monitoring the client’s responses to intervention, reevaluating and modifying the intervention plan as needed, and measuring intervention success. To facilitate this, occupational therapy practitioners implement data-driven decision-making by regularly collecting and using client-generated data to make clinical decisions regarding intervention implementation, modification, and discontinuation (Schaaf, 2015). Progress is noted through improvement in the client’s occupational performance, adaptation, participation in desired activities, satisfaction, role competence, health and wellness, and quality of life and through prevention of further difficulties and facilitation of effective transitions.
Occupational therapy has been identified by clients and family members as a valuable service that improves understanding and acceptance of ASD characteristics, promotes skill development, reduces interfering behaviors, and fosters functional independence and quality of life (Becerra et al., 2017; Mackintosh et al., 2012; Umeda et al., 2017; Watling & Spitzer, 2018). The interventions provided by occupational therapy practitioners promote positive outcomes in all 13 areas identified by the NCAEP (Steinbrenner et al., 2020) as relevant to people on the autism spectrum: ▪ Academic ▪ Adaptive ▪ Challenging behavior ▪ Cognitive ▪ Communication ▪ Joint attention ▪ Mental health ▪ Motor ▪ Play ▪ School readiness ▪ Self-determination ▪ Social ▪ Vocational
Occupational therapy practitioners are skilled at analyzing the interaction among clients, their engagement in occupations, and the context to support occupational performance and participation. Practitioners collaborate with individuals on the autism spectrum across the life span to understand their unique strengths and challenges, use an array of interventions supported by the evidence to facilitate participation in self-determined occupations, and determine when services are no longer required.
Footnotes
1
The term occupational therapy practitioners includes occupational therapists and occupational therapy assistants.
Authors
Scott D. Tomchek, PhD, OTR/L, FAOTA
Renee Watling, PhD, OTR/L, FAOTA
Caitlin Synovec, OTD, OTR/L, BCMH, Chairperson
Adopted by the Representative Assembly Coordinating Council (RACC) for the Representative Assembly, 2022.
Note. This revision replaces the 2015 document, “The Scope of Occupational Therapy Services for Individuals with Autism Spectrum Disorder Across the Life Course,” previously published and copyrighted in 2015 by the American Occupational Therapy Association in the American Journal of Occupational Therapy, 69(Suppl. 3), 6913410054.
Copyright © 2022 by the American Occupational Therapy Association, Inc.
