15 Parent and Clinician Perspectives on 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. There is limited information about the perspectives of parents of autistic children, and clinicians, on the acceptability of these services. This work is part of a larger survey that also explored autistic individuals’ perspectives. Objectives This study explored how parents of autistic children, and clinicians, perceived the acceptability of OT, SLP services, ABA-based therapies, and PT. Design/Methods The survey was built using the Theoretical Framework of Acceptability (TFA), with input from autistic people, parents, and clinicians, and shared online. Demographic data and perspectives were captured. An acceptability sub-score was produced for each therapy, ranging from 0 (least accepting) to 64 (most accepting). These sub-scores were combined into an overall acceptability score. Following the TFA, open-ended questions were qualitatively analyzed using deductive content analysis, and categories within the construct of intervention coherence are presented. Results 140 clinicians completed the survey, and their median (range) sub-scores were: OT 46 (16 – 59), SLP 47 (24 – 60), ABA 34 (9 – 60), PT 40 (14 – 60). 87 parents completed the survey, and their median (range) sub-scores were: OT 40 (16 – 60), SLP 41 (14 – 58), ABA 28 (7 – 54), PT 35 (25 – 57). The construct of intervention coherence reflects an individual’s understanding of a therapy, and respondents viewed goals as unacceptable or acceptable. Acceptable goals included those that are client and family-driven, inclusive of multi-modal communication, and support sensory needs. The goal of behaviour change was variably viewed as acceptable or unacceptable. Respondents who viewed this goal as acceptable identified that ABA could teach skills or decrease behaviours. Conversely, respondents who described the goal of behaviour change as unacceptable were often critical of the promotion of neurotypical behaviors. Conclusion For both groups, how they viewed therapy goals influenced their acceptability. ABA-based therapies have been critiqued elsewhere, and some respondents shared similar criticisms, often related to promoting neurotypical behaviour. However, many respondents viewed skill-building as an acceptable goal. This work contributes to the important conversation as to how therapies can meaningfully support autistic children. Notably, many respondents were wealthy, well-educated, and white. Future work should learn from more diverse samples of parents and clinicians. 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.