Autistic and Neurotypical Valued Occupations Model (ANVOM): A Proposed Model for Occupational Therapy Practice

Purpose

The purpose of this article is to propose a model of practice for occupational therapy based on research that includes the voices of those who are Autistic, including Autistic adults with the lived experience of autism combined along with their neurotypical counterparts, e.g., parents, caregivers, and society.

Language

Based on a majority of the Autistic community preferring identify-affirming language and autism being a central component, this article will use the phrase “Autistic”, e.g., Autistic person.^[1]Bury, S., Jellett, R., Spoor, J., & Hedley, D. (2020). “It defines who I am” or “It’s something I have”: What language do [autistic] Australian adults [on the autism spectrum] prefer? … Reference List “Autistic” is capitalized to align with the American Psychological Association’s guidelines for the Deaf and Blind communities.^[2]American Psychological Association. (2020). Publication manual
of the American Psychological Association (7th ed.).

Introduction

• There is a lack of research and models of practice that considers the experience and engagement of occupations for Autistic people.
• Occupational therapy interventions (and mainstream interventions) predominantly focus on the perspectives of parents, caregivers, and families, but not the client.
• Applied behavior analysis (ABA) is the most prevalent early  childhood intervention for Autistic children who receive a diagnosis of Autism.^[3]CDC (2015), “Autism spectrum disorder (ASD): treatment”, Center for Disease Control and Prevention, Atlanta, GA, March 10, 2017, available at: www.cdc.gov/ncbddd/autism/treatment.html (accessed … Reference List
• Occupational therapy interventions for Autistic children commonly include Ayres Sensory Integration (ASI), sensory strategies, environmental modification, and task modification. Other OT interventions include animal-assisted therapy and skill development such as self-care, motor, and social skills.^[4]Kuhaneck, H. (2020). Autism spectrum disorder. In J. O’Brien
  (Ed.), Case-Smith’s occupational therapy for children and
  adolescents (8th ed., pp. 786–813). Elsevier.
• Specific OT behavioral interventions for autism may include pivotal response training, contingency methods, positive reinforcement and behavioral support, and ABA.^[5]O’Brien, J., & Kuhaneck, H. (2020). Using occupational theory models and frames of reference with children and youth. In J. O’Brien & H. Kuhaneck (Eds.), Case-Smith’s occupational … Reference List
• ABA and behavioral techniques are reported and criticized to be ineffective, unethical, and even abusive for the clients receiving these interventions.^[6]Sandoval-Norton, A., & Shkedy, G. (2019). How much compliance is too much compliance: Is long-term ABA therapy abuse? Cogent Psychology, 6(1), Article 1641258. … Reference List
• Autism is linked to trauma such as PTSD.^[7]Mehtar, M., & Mukaddes, N. M. (2011). Posttraumatic stress disorder in individuals with diagnosis of autistic spectrum disorders. Research in Autism Spectrum Disorders, 5, 539 –546. … Reference List While autism may be associated with increased vulnerability for trauma, PTSD appears to be underdiagonsed or is prevalent among the Autistic community.^[8]Hoover DW. The effects of psychological trauma on children with autism spectrum disorders: A research review. Rev J Autism Dev Disord. 2015(2):287–299. … Reference List
• Autistic advocates have reported trauma from behavioral interventions such as Applied Behavioral Analysis (ABA) and some occupational therapy interventions that historically focused on changing the autistic client^[9]Anderson, L. K. (2022). Autistic experiences of applied behavior analysis. Autism, 13623613221118216..

Research

The goal is to design and implement a research study to gather data and support the development of (1) this proposed model, (2) an assessment and outcome measure, and (3) intervention for occupational therapy practice informed by this research.

A central part of the neurodiversity movement for autism is social justice and rights that align with the broader disability rights movement.^[10]Hughes, J. M. (2016). Increasing neurodiversity in disability and social justice advocacy groups [White paper]. Autistic Self Advocacy Network. Available online at: … Reference List

Ongoing research on this project will emphasize the inclusion of data from minority groups (instead of primarily Autistic white people) for equal representation and generalization due to overrepresentation and minimal consideration for alternative cultures.^[11]Giwa Onaiwu, M. (2020). “They don’t know, don’t show, or don’t
care”: Autism’s White privilege problem. Autism in Adulthood,
2(4), 270–272. https://doi.org/10.1089/aut.2020.0077

Themes that emerged from data of Autistic voices titled, “Autistic Adult Perspectives on Occupational Therapy for Autistic Children and Youth” in 2022 found that (1) the acceptance of Autistic children was important instead of trying to “fix” them, (2) changing the environment or task is preferred over using behavioral strategies, and (3) goals for children in therapy should address self-advocacy and autonomy.^[12]Sterman, J., Gustafson, E., Eisenmenger, L., Hamm, L., & Edwards, J. (2022). Autistic Adult Perspectives on Occupational Therapy for Autistic Children and Youth. OTJR: Occupation, Participation … Reference List These themes inform the model with self-advocacy and neurodiversity in mind.

Themes that emerged from Leadbitter and colleagues (2021) include: (1) the consideration of internal drives and experiences, (2) re-evaluation of intervention targets, (3) emphasis on strengths, pleasure, and well-being, (4) promotion of autonomy, (5) re-framing effectiveness and how to measure success, and (6) promoting partnerships with Autistic people across the lifespan.^[13]Leadbitter, K., Buckle, K. L., Ellis, C., & Dekker, M. (2021). Autistic self-advocacy and the neurodiversity movement: Implications for autism early intervention research and practice. Frontiers … Reference List

Principles of This Theory

• One main goal is to keep this theory simple, concise, and easy to understand, but also allow it to be broad and dynamic enough to be applicable across different client contexts, environments, and occupations.
• Collaboration is should include the experience and perspective of the child as well as the parents, caregivers, educators, and other stakeholders.
• Partnership should include and reflect the engagement of both Autistic and neurodiverse people.
• Outcome measures must not solely rely on parent or caregiver report and should include the client’s data where possible.
• Outcome measurements and efficacy should not focus on symptom reduction, but instead on maximizing function.
• Activities include the occupations of ‘doing’ such as self-care, IADLs, education, leisure, socialization, productivity, rest and sleep, and health management.^[14]American Occupational Therapy Association. (2020). Occupational therapy practice framework: Domain and process (4th ed.). American Journal of Occupational Therapy, 74(Suppl. 2), 7412410010. … Reference List
• Persons can be neurodiverse (Autistic) or neurotypical (Not Autistic).
• Emphasis should be put on the person’s strengths to promote engagement in valued activities.^[15]Burnham Riosa, P., Chan, V., Maughan, A., Stables, V., Albaum, C., and Weiss, J. A. (2017). Remediating deficits or increasing strengths in autism spectrum disorder research: a content analysis. Adv. … Reference List
• All persons share an environment.
  • Physical/virtual
  • Temporal
  • Societal
  • Cultural
• The environment is dynamic and changeable as indicated by a dotted rectangular box (as opposed to a solid outline).
• The environment may support (enhance) or not support the persons and activities.
• Gear icons suggested components of change, e.g, changing the environment or activity (task demands).
• The persons (both Autistic and Neurotypical) do not have gears, but their behaviors should only be changed if they align with their values and goals intrinsically, not due to outside influence.
• Persons can use their values, strengths, and autonomy to guide their behaviors and engagement in activities (whether in isolation or shared socially).
• Neurotypical and neurodiverse groups can learn from each other’s strengths, preferences, and values for the environment and activity engagement.

Proposed Model

• The title and components of this model are subject to change and revisions.

Assessment and Outcome Measure

A work in progress.

Intervention

A work in progress.

Limitations

Collaboration & Research

This is an ongoing project and is in its infancy stages.

I am open to suggestions, collaboration, and research from the public including those who are Autistic (diagnosed or not), occupational therapists, physical therapists, psychologists, speech-language pathologists, educators, caregivers, researchers, and other relevant stakeholders.

Feel free to directly contact me or comment in the Discord server.

Author(s): Jeffrey Kou, MSOT, OT/L

Citing this article: Kou, Jeffrey. (2023). Autistic and Neurotypical Valued Occupations Model (ANVOM): A Proposed Model for Occupational Therapy Practice. Retrieved from https://www.otdude.com/ot-practice/autistic-and-neurotypical-valued-occupations-model-anvom-a-proposed-model-for-occupational-therapy-practice/