Perceptions, Experiences, and Needs of Parents of Culturally and Linguistically Diverse Children with Autism: a Scoping Review

Abstract

A scoping review of studies carried out in the UK and the USA was conducted to explore the perceptions, experiences, and needs of culturally and linguistically diverse families of children with autism. Overall, 32 articles met the inclusion criteria, 25 studies were conducted in the USA and 7 studies in the UK. Four themes emerged including (a) knowledge and beliefs about autism and their impact on the family; (b) autism and family life; (c) family experiences of accessing services and support, and parents' needs; and (d) multilanguage. Findings highlighted that family perceptions of autism are influenced by an often-reported lack of knowledge; experiences include social stigma as well as difficulties in having access to services. Needs indicate the development of culturally sensitive interventions, information in multiple languages, and parent-professional collaboration. Implications for research, policy, and practice are included.

The information-seeking behaviour of Egyptian parents of children with Autism Spectrum Disorder (ASD): a descriptive study

“…Similarly, the shortage of government centers specializing in the treatment of these children, even if they exist or are available, are not well distributed in the governorates of Egypt (n 5 27), which increases the family's difficulty in reaching them and incur mobility problems, which also increases the resulting expenditure. These findings are consistent with the findings of Papoudi et al (2020), which showed that the family's perception about autism is affected by lack of knowledge, experiences and difficulties in accessing related services, as well the findings the study made by Lwoga and Mosha (2013), which showed that low levels of education, lack of funding and health information illiteracy have been identified as the key factors hindering access to health information, and Abbey (2018) 's findings showing that financial challenge has been described as the most significant challenge faced by parents of autistic children.…”

“…Using a scoping review of studies conducted in the UK (7 studies) and the USA (25 studies), Papoudi et al (2020) attempted to explore the perceptions, experiences and needs of culturally and linguistically diverse families of autistic children. The findings showed that the perception of the family about autism is influenced by an often-reported lack of knowledge; experiences include social stigma as well as difficulties in accessing services.…”

Autistic People's Access to Bilingualism and Additional Language Learning: Identifying the Barriers and Facilitators for Equal Opportunities

“…Additionally, findings suggest a lack of understanding of autism within some communities (Munroe et al, 2016;Hussein et al, 2019) which could also be compounded with social stigma reported by cultural minorities in the UK. In particular, experiences of increased stigma when accessing healthcare (Szczepura, 2005;Kandeh et al, 2020), and stigma around autism within their own and the wider community (Kinnear et al, 2016;Selman et al, 2018;Papoudi et al, 2021), could ultimately lead to increased social exclusion and misunderstanding.…”

Autistic people’s access to bilingualism and additional language learning: identifying the barriers and facilitators for equal opportunities.

“…Additionally, findings suggest a lack of understanding of autism within some communities (Hussein et al, 2019;Munroe et al, 2016) which could also be compounded with social stigma reported by cultural minorities in the UK. In particular, experiences of increased stigma when accessing healthcare (Kandeh et al, 2020;Szczepura, 2005), and stigma around autism within their own and the wider community (Kinnear et al, 2016;Papoudi et al 2021;Selman et al, 2018), could ultimately lead to increased social exclusion and misunderstanding.…”