Psychosocial resources developed and trialled for Indigenous people with autism spectrum disorder and their caregivers: a systematic review and catalogue

Abstract

Background: People with autism spectrum disorder (ASD) face many psychosocial challenges throughout life, highlighting the need for programs and resources promoting psychosocial wellbeing. Indigenous peoples with ASD and/or other neurodevelopmental disorders must overcome cultural and social barriers to access such supports. This study aimed to identify psychosocial programs and resources developed worldwide for this population by systematically reviewing research evaluating programs aiming to promote the psychosocial wellbeing of this population and/or their caregivers; and collating and reviewing resources developed to promote their psychosocial wellbeing. Methods: Searches were last conducted in December 2019. The systematic review searched 28 electronic databases, and 25 electronic databases were searched for resources promoting psychosocial wellbeing. Additional published and unpublished studies were identified from relevant reviews, authors of eligible articles, and experts working in Indigenous Health. Articles and resources were screened for inclusion using pre-defined criteria. Articles included in the systematic review were assessed for quality using the Mixed Methods Assessment Tool. The diversity and paucity of outcomes reported precluded pooling of study findings for meta-analysis. Results: Seven articles situated in the USA (2), Canada (3) and Australia (2); and eleven resources developed in Australia (9), Canada (1) and New Zealand (1) met inclusion criteria. All articles showed some promising findings for improving psychosocial wellbeing for Indigenous children with ASD and/or another neurodevelopmental disorder, and 5 of 7 evaluated the cultural adaptation of an existing evidence-based program for an Indigenous population. However, methodological quality was moderate or low (57% and 43% of articles respectively) and no studies had adult participants. The psychosocial wellbeing supports provided by the 11 resources included psychoeducation, community support, and services/workshops.

Exome Evaluation of Autism-Associated Genes in Amazon American Populations

“…A previous study by Shochet et al [ 16 ] had shown that Indigenous with ASD people living in remote areas had limited access to healthcare services. This is due to cultural and linguistic differences that are potential barriers to the diagnosis and treatment of this condition among the Amerindian population.…”

Sociocultural factors associated with Detection of ASD among Culturally and Linguistically Diverse Communities in Australia

“…Further, what is considered atypical behaviour in Culturally and Linguistically Diverse (CALD) families may differ from families with European ancestry, delaying the recognition of autism traits [21][22][23]. For example, behaviours such as limited eye contact is considered typical behaviour in certain Indigenous Australian and Asian cultures [24,25] and may therefore go unrecognized as a potential indicator of autism. Subsequently, screening policies and early intervention services are largely not tailored towards the needs of CALD families, with various cultural and linguistic needs, many of whom experience challenges in accessing these services [26,27].…”