Too many people affected by autism in Black, Asian and Minority Ethnic (BAME) communities are missing out on essential support, a report has suggested.
While families of all ethnicities living with autism commonly face a battle to access a diagnosis and support, the National Autistic Society’s (NAS) ‘Diverse Perspectives’ report found that language and cultural differences can create additional barriers for people from BAME communities.
The NAS conducted 13 focus groups across England in late 2013 involving about 130 parents and carers of children with autism from BAME communities. Participants were asked about their needs and experiences and encouraged to consider the role that ethnicity, faith and religious beliefs, gender 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 and traditional child development to be lower in some communities than in the wider population, 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 unnecessarily 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 hostile or judgemental attitudes. The NAS was told that disability is stigmatised in certain communities where it is seen as unnatural and sometimes blamed on parents. While some participants emphasised that their faith gave them strength, others reported judgemental attitudes and 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 had autism; 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.
Culturally appropriate support
Dr Laura Cockburn, manager of the NAS’ Lorna Wing Centre, said: “The families we’ve talked to have sent a clear message that many people living with autism in BAME communities aren’t getting the support they need.
"Autism is a complex condition which requires professionals to possess specialised knowledge, skills and understanding, as well as cultural competence. When families are from BAME communities, professionals involved in providing services need to have an awareness of how issues such as culture and language may impact screening, assessment and intervention.
“If we are to improve the lives of BAME families dealing with what can initially be a devastating diagnosis, it’s vital that decision makers, service providers and faith and community groups listen to those families and work together to produce effective, culturally appropriate support.
“Autism is a lifelong condition, but with early diagnosis, improved awareness and smarter commissioning we can ease the strain felt by many families and help those with autism reach their full potential.”