16 Autistic Perspectives on the Acceptability of Paediatric Autism Therapies

Abstract

Abstract Background Autistic children and their families access services, such as occupational therapy (OT), speech language pathology (SLP) services, applied behaviour analysis (ABA)-based therapies and physiotherapy (PT). There are varying levels of evidence supporting the efficacy of these therapies, and some autistic-led advocacy is critical of the methods and aims of certain services. Exploring stakeholder perspectives is critical to ensure services are appropriate and informed by lived experiences. This work is part of a larger survey that explored the perspectives of autistic individuals, parents of autistic children, and clinicians on these services. Objectives This study explored how autistic people perceive the acceptability of OT, SLP services, ABA-based therapies, and PT. Design/Methods Using the Theoretical Framework of Acceptability (TFA), a survey was built with input from autistic people, parents of autistic children, and clinicians and shared online through social media and autism organizations. Demographic data and perspectives were captured. An acceptability sub-score was produced for each therapy, ranging from 0 (least accepting) to 64 (most accepting). The sub-scores were combined into an overall acceptability score. Open-ended questions were qualitatively analyzed using deductive content analysis following the TFA, and categories within constructs of ethicality are presented. Results 21 autistic people completed the survey, and their median (range) sub-scores were OT 40 (16 – 56), SLP 43.5 (28 – 57), ABA 19.5 (8 – 48), PT 39.5 (28 – 57). Qualitative categories within the TFA construct of ethicality included: 1) concerns about harms and negative experiences that can potentially occur because of therapies; 2) a lack of support for what respondents identified as behavioural techniques or methods. Conclusion Findings are similar to existing perspectives that some autistic people have towards ABA-based therapies. However, these findings highlight that some autistic people may view any therapy as unacceptable if it incorporates behavioural methods. Further work is needed to better understand aspects of behavioral methods that are viewed as unacceptable, given that some strategies, such as positive reinforcement, are used in different therapies and with the general population. Future work should explore perspectives from larger samples. Potential competing interests Melanie Penner has received consulting fees from the province of Nova Scotia and Addis & Associates / Roche, and research grant funding from Autism Speaks.