The 700,000 autistic people in the UK come from all backgrounds, identities and cultures. There is a lack of research about the experience of people from black, Asian and minority ethnic (BAME) groups, but the National Autistic Societies 2014 research Diverse Perspectives suggests it can be even harder for people from BAME backgrounds to get a diagnosis and support.
In order to break down these barriers, we need to improve the understanding of autism and the experiences of autistic people and families from different backgrounds and cultures. This must be accompanied by greater efforts by decision makers, service providers and faith and community groups to listen to autistic people and families from BAME backgrounds and to produce culturally appropriate support.
National Autistic Societies research, participants were asked about their needs and experiences and to consider the role that ethnicity, faith and language could play in this. Five key themes emerged from the discussions:
- Challenges getting a diagnosis: some participants considered levels of understanding of autism to be lower in their communities, which may have delayed a diagnosis. Others said that teachers can fail to spot characteristics of autism due to incorrect assumptions about a child’s behaviour or language abilities
- Barriers to accessing support services: parents reported challenges understanding autism and knowing what services are available due to information often only being available in English, few translation services and professionals’ use of jargon
- Communication problems with professionals: some families reported having low confidence dealing with professionals or feeling they could be patronising or lacking in cultural competence. Others said some people from BAME communities could hold suspicious attitudes towards professionals and authorities
- Awareness and understanding of autism within communities: tight-knit communities can be an important source of support for people, but many participants reported encountering judgemental attitudes. Our charity was told that disability can be stigmatised in certain communities and sometimes blamed on parents. While some participants emphasised that their faith gave them strength, others reported a lack of support from faith groups and at places of worship
- Denial and isolation: some families said they initially refused to acknowledge that they faced a long term problem or that their child was autistic. Others believed that their difficulties should remain private and not discussed outside the home. Alongside feelings of blame and shame, many said that these issues could lead to parents, carers and siblings missing out on support and becoming socially isolated