Supporting Practitioner Responses to Attitudes to Autism and Intellectual Disability in Black and Minority-Ethnic Families in the UK and Beyond

Background: Black and minority-ethnic (BAME) families living in the UK may struggle with the presence of autism and / or intellectual disability in their family members. This is particularly challenging for recent immigrants to the UK and those living in communities where a large majority of people are white British, such as Edinburgh, Scotland.

Objectives: This project combines focus groups, literature review and an online survey to explore the challenges experienced by practitioners supporting BAME families in Edinburgh and to provide evidence-based recommendations for their practice.

Methods: We worked with a charitable organisation providing support to BAME families in Edinburgh. Stage One was a focus group with practitioners from the organisation to discuss the challenges they perceive when providing support to BAME families. Topics were organised into questions about: 1) practitioner challengers; 2) family challenges; and 3) useful resources. Stage Two was a literature review aiming to address two questions derived from the focus group analysis: How do cultural attitudes to autism and intellectual disability vary worldwide? and specifically How can the research literature help practitioners understand attitudes to autism and intellectual disability in BAME families in Scotland? Stage Three (in progress) will be the design and evaluation, via a practitioner survey, of a website sharing evidence based information about cultural attitudes to autism and intellectual disability. The site will report information about how attitudes vary among different ethnic and religious groups and extract some simple tips for practitioners on working sensitively with BAME families.

Results: The focus group data were analysed thematically and revealed challenges in three domains. 1) Practical Challenges – these included isolation, language barriers and financial barriers (e.g. lack of transport to visit clinical services). 2) Attitude Challenges – these included culturally-specific beliefs about disability (e.g. disability as a punishment) and resulting behaviours. 3) Knowledge Challenges – this encompassed practitioner uncertainty about culturally-sensitive ways to respond to stigma. The BAME community in Edinburgh is highly diverse meaning that it is challenging for one practitioner to be familiar with the range of cultural backgrounds they encounter among clients. Furthermore, specialist practitioners must then refer to diagnostic and support services who have even less experience of BAME families. The Stage Two literature review adopted a systematic search methodology to identify texts which either a) described cultural / religious variation in attitudes to autism and intellectual disability or b) reported on mechanisms to support people experiencing stigma associated with disability. These findings are now being organised into a resource designed to address Knowledge Challenges among practitioners so that they in turn can deal with Attitude Challenges in the community.

Conclusions: We will report on a survey-based evaluation of the finished website (Stage Three, in progress) as well as providing further details of the literature search results. This study reveals the challenges presented to autism diagnostic and support services by increasing multi-culturalism and can help researchers, practitioners and the community sensitively address stigma as well as identifying gaps in our knowledge.