A model of care which includes motor proficiency and physical activity levels for children with Autism Spectrum Disorder

Abstract

BACKROUND: Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder, characterised by core deficits in communication, reciprocal social interaction and restricted or repetitive interest and/or behaviours. It often also results in an array of motor impairments and reduced physical activity. In general, assessment and management strategies for ASD target the core deficits and neglect comorbidities and other complications. There is no comprehensive model of care (MoC) for the management of motor impairments or reduced physical activity in children with ASD. Developing such a model could address these gaps. AIM: To develop a comprehensive MoC for children with ASD that includes motor proficiency and physical activity by exploring the perceptions and insight of clinical experts, parents, and teachers on the core deficits, current motor proficiency, and physical activity levels of children with ASD. METHODS: A qualitative sequential study comprising three phases was conducted to develop a model of care for children with ASD. Phase one: Semi-structured individual interviews, lasting 25-60 minutes, were conducted with expert clinicians (n=11), parents (n=8) and teachers (n=6) involved with children with ASD. Interviews aimed to explore the perceptions, knowledge and insights on what a model of care should include for managing motor proficiency and physical activity levels. The researcher made use of purposeful as well as snowball sampling techniques. Phase two: A model of care was developed based on phase one data, and using MoC development guidelines and current literature. Phase three: A nominal group discussion, lasting 82 minutes was conducted with nine participants (three expert clinicians, three teachers and three parents) to review the MoC. A discussion was had in terms of whether each groups expectations were met, and their suggested changes were made to optimise the model. For phase one and three data, the interviews and nominal group discussion data were audio-recorded transcribed, and manually coded using a deductive approach. Following the generation of the codes, statements aligning to the codes were extracted and explored using an inductive approach after which categories and themes were generated using thematic analysis. To quantify the content, latent analysis was conducted and data was used to develop the MoC. Demographic categorical data were analysed using frequencies and percentages, while continuous normally distributed demographic data were analysed using means, modes and standard deviations and non-normally distributed continuous demographic data were analysed using median and interquartile ranges. vi RESULTS: Twenty-five participants with a mean age of 43.4 (±12.9) years participated in this study. The group of teachers had a mean age of 39.5 (±8.7) years and a mean of 12.9 (±9.2) years teaching experience; the group of clinicians had a mean age of 39.5 (±11.8), with a mean of 13.3(±11.1) years of clinical experience; and the parents had a mean age of 51.6 (±14.3), with their children having a mean age of 16 (±8.1) years. All of the clinicians came from the private sector, all of the teachers were presently based in the private sector (with 3 having taught previously in the public or tertiary sectors) and the parents represented middle to high socioeconomic groups. Overall, teachers, clinicians, and parents believed that improving motor proficiency and physical activity levels in children with ASD is often neglected and should be included in their assessment and management. Following interviews and the thematic analysis of transcripts, five themes emerged from the teachers, while six themes emerged for both the clinicians and parents. Participants believed that motor proficiency levels were generally poor, albeit varied in individuals with ASD. They reported a need for management strategies to target these deficits since they could reduce independence and effect daily functioning. They believed education and awareness regarding deficient motor profiles, and the importance of meeting physical activity guidelines and developmental milestones was needed. They cited financial constraints and resource availability as the main barriers for access to therapies and that individual considerations would need to be taken into account when developing any exercise based intervention. The MoC developed from participant insights focuses on motor proficiency and physical activity levels, and includes five main domains: education, determining the motor profile, assessment and feedback, implementation of interventions and monitoring of interventions. The model places the individual with ASD at the center, surrounded by key stakeholders and support structures to provide tailored support. CONCLUSION: It was believed that motor proficiency and physical activity levels in children with ASD have been neglected in the past, and that a general mind shift is needed in key stakeholders so that support for these deficits is integrated into managing the disorder more holistically. The developed MoC provides a framework for addressing physical inactivity and reduced motor proficiency in children with ASD. It identifies key stakeholders who should be involved in the process and highlights the need for multidisciplinary, and individualised management for children on the spectrum.