Understanding Autism Spectrum Disorder in Context: A Comparison of Parent/Caregiver Perceptions of Functioning in a High-Income and Middle-Income Country

Background: Autism Spectrum Disorders (ASD) are heterogenous and functional outcomes can be highly variable in different individuals. The World Health Organization International Classification of Functioning, Disability and Health (ICF) is widely-used to measure functioning. Core Sets for ASD were recently developed. The process included a qualitative preparatory study to explore parent/caregiver perceptions of functioning and environmental factors in five highly divergent countries (Canada, Sweden, India, Saudi Arabia and South Africa). However, the context in which individuals live strongly influences functional ability or disability and it is not known whether functional themes in these diverse environments would have been similar or different.

Objectives: The purpose of this study was therefore to examine the association between context and functional ability/disability in children with ASD by deliberately comparing and contrasting two of the most divergent countries who participated in the qualitative preparatory study. We aimed firstly to compare and contrast the frequency of functional items reported by parents/caregivers between a High Income Country (Sweden) and a Low/Middle Income Country (South Africa). We secondly set out to compare and contrast the content of the functional items reported by parents/caregivers in these two countries.

Methods: For the ICF core sets study focus group and individual semi-structured interview data from 35 participants were analyzed following ICF procedures to link themes to ICF-CY categories. In this secondary analysis we compared South African (22 participants) and Swedish data (13 participants). The identified ICF-CY categories were ranked and compared for similarities and dissimilarities in frequency of reporting and analyzed for similarities and dissimilarities in the content of the themes.

Results: Complete frequency agreement was seen in 4 categories - three ‘Activities and Participation’ (carrying out daily routines, dressing, complex interpersonal interactions), and one ‘Environmental Factors’ (immediate family). Dissimilarities were observed in one ‘Environmental Factors’ category (health professionals), 6 in ‘Body Functions’ (e.g. involuntary movement functions, gait patterns, basic cognitive functions, and mental functions of language) and 3 in ‘Activities and Participation’ (managing one’s own behaviour, speaking, and undertaking a single task). Only four ICF-CY categories differed in content between South Africa and Sweden. Immediate family was reported as both a barrier and facilitator to functioning in South Africa and only as a facilitator in Sweden, attention was reported as a facilitator in Sweden and barrier in South Africa, and products and technology for personal use was reported as a facilitator in Sweden and barrier in South Africa. Interestingly, health professionals were mentioned as a barrier to function in Sweden and facilitator in South Africa.

Conclusions: In spite of the divergent nature of contexts, few differences were observed in parental perspectives about environmental factors relevant to functioning in ASD. Surprisingly, perceptions more frequently differered regarding body functions and activities & participation. The content of perceptions were, with a few exceptions, similar. Our results suggest that the interaction between context and functioning is more complex than we predicted. We recommend that more comparative studies on ASD and functioning should be conducted to gain a better understanding of ASD in different contexts.