Friday August 11, 2017
While rates of autism are seemingly disproportionately high among British Somali people, a new study has revealed that more than half of families do not fully understand the condition, and many face huge barriers to receiving treatment. The report by charity Autism Independence, which supports British Somali families in Bristol, and Healthwatch Bristol paints a picture of the difficulties families face in coping with their child’s autism. Aabe also created a one-woman play, Yusuf Can’t Talk, in collaboration with theatre group Acta, to help portray her own experiences of having a child with autism.
Founder of Autism Independence Nura Aabe (see tinyurl.com/y9qprq77), and author of this research, has been active in trying to raise awareness of the condition in Bristol, as well as supporting families in the British Somali community to understand and cope with autism.She interviewed 50 of the families she works with and made recommendations to health and social care providers based on her findings.
Aabe’s previous research uncovered some initial concerns, with many British Somali parents not fully understanding autism, feeling confused at the lack of physical symptoms, and struggling to find help and support.
Through her interviews Aabe found 40 per cent of families said they did not understand what autism was; 8 per cent thought it was an illness or mental illness while 10 per cent thought it was a term for being ‘different’ or having language problems. This lack of understanding, Aabe writes, was the biggest problem for families leading to other barriers in seeking help.
Many also spoke of a general mistrust of service providers; half didn’t have a social worker out of fear their child would be taken away. Just over 75 per cent were not accessing any social care support.
A majority of families said they were happy with healthcare services, but many spoke of a need for better communication. Close to 85 per cent of parents said they felt their being Somali significantly affected their access to services, largely due to language and cultural barriers.
Aabe recommends, among other things, that healthcare professionals need a better understanding of the challenges faced by Somali families affected by autism. She also suggests that the community needs a better understanding of the condition, and working alongside mosques should help clarify the role of faith in this.
Social care could play a large role too – Aabe suggests giving families who have received a new diagnosis a set of three support sessions. These could help them to understand the condition, signpost them to support in the community, and help with filling in forms.
This could also serve to build trust between Somali people and social care professionals. She also suggests that academics should work towards establishing whether higher rates of autism can be seen among Somali people and why this might be the case.