Many children on the autism spectrum from ethnic minorities are not being diagnosed properly, and their families often struggle to gain support. Dr Mitzi Waltz explains why
Autism is a lifelong developmental condition that emerges in early childhood. Individual profiles and severity differ greatly, so clinicians talk about an autism spectrum representing a range of difficulties and differences. When it comes to diagnostic delay and misdiagnosis among children from ethnic minorities, the issues can be cultural or systemic. There is less awareness of autism in these communities, and alternative explanations for the same characteristics may be given by both well-meaning family members and by professionals who make assumptions.
For example, cultural beliefs can make a difference in where parents look for help when their child is developing differently. Those working with South Asian Muslim families and Afro-Caribbean Christian families need to be particularly aware that belief in possession by djinns or demons persists, and is a cause for concern if religious leaders suggest exorcism or worse.
It’s important for social care professionals to be open to discussing these beliefs, and to remember that people can hold seemingly contradictory ideas about a health condition, accepting both mainstream developmental explanations and other concepts. Denigrating explanations that you see as misguided can drive families away from accessing help.
Professionals may also assess symptoms incorrectly. Lack of or atypical eye contact is one early sign of autism, but the typical level of eye contact is culturally specific: in many Asian cultures direct eye contact from children to adults is considered rude behaviour. Likewise, researchers have found that behaviour consistent with autism in black children is sometimes attributed to emotional or behavioural disturbance instead. In both cases, cultural misunderstandings or biases may lead to misdiagnosis.
Children on the autism spectrum benefit from early, intensive intervention, and families need help to know what to do and how to cope. The National Autistic Society’s Early Bird programme and Barnardo’s Cygnet programme are good places to start. Staff in both education and social care can benefit from using the government’s free Inclusion Development Programmes (IDPs) for autism.
The needs of both children and families change as time goes on, and may include in-home help, respite care and advocacy. Autism is not just a “childhood disability,” so assistance with transition to adulthood, person-centred planning, and ongoing care and support for adults, are also crucial.
Support groups for parents, and specialist provision for children and adults, tends to be clustered in white, middle-class areas. Ethnic minority parents may feel they do not fit in, especially if English is not their first language. Services and information in other community languages are still quite rare in the UK. Social care professionals can help identify unmet needs and liaise with partners in education, health and the voluntary sector to fill them.
Don’t assume that parents are being helped by the extended family, as this often is not the case. Your efforts can be the start of real change.
Signs of autism
People on the autism spectrum experience difficulties in social understanding and interaction, social communication, and flexibility of thought and behaviour. The following signs are often associated with autism in young children:
● No big smiles or warm, joyful expressions by six months or thereafter.
● No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter.
● No babbling by 12 months.
● No back-and-forth gestures, such as pointing, showing, reaching or waving by 12 months.
● No words by 16 months.
● No two-word meaningful phrases (without imitating or repeating) by 24 months.
● Any loss of speech or babbling or social skills at any age.
Dr Mitzi Waltz is a lecturer is autism studies at the University of Birmingham
Inform subscribers: Guide to supporting black and minority ethnic and hard to reach families coping with autism, by Dr Mitzi Waltz