The impact of autism in the Somali community in Bristol

Autism Independence and Healthwatch Bristol engaged with Somali families affected by autism to find out their experiences of using health services and their understanding of the condition. Engagement built on research carried out by Bristol University, NIHR CLAHRC

West and Autism Independence in 2015-2016. This work aimed to find out whether Somali families access adequate support from mainstream health and social care services and whether they face particular barriers in accessing care in Bristol. It aimed to find out what Somali families feel could be improved in terms of meeting the needs of their child/young person with autism and what might help their family holistically.

The data was gathered using mixed methods and produced both quantitative and qualitative data. This involved using a structured survey questionnaire with 7 open and closed questions and 8 general demographic questions. Each questionnaire took 20-30 minutes to complete due to interpreting time. Autism Independence and Healthwatch Bristol consulted with 56 families. Of these, 50 (n=50) families took part and the other 6 families decided not to take part. The 6 families who did not take part had children who were newly diagnosed with autism. 51 out of the 56 families who took part are members of Autism Independence. 48 surveys were completed face to face and the other 2 were completed alone by participants. 49 female participants took part in the survey and one male. 49 families had a child/ren with diagnoses of autism and 1 family was in the process of getting an assessment. The 50 families they consulted had 51 children with diagnoses of autism and 4 children in the process of getting a diagnosis.

The main finding of the report, identified 40% of families that were spoke with said that they still do not understand what autism is. 8% of respondents thought autism is an illness or a mental illness and 10% thought autism meant being different or having language needs or problems. Overall, 58% of the families we spoke with did not have a clear understanding of the condition. This report found that the biggest problem for families was the lack of understanding, and this lack of understanding led on to other barriers in the development of their child, resulting severely autistic children costing society in general a fortune in the longer term.

The report identified 6 recommendations which are documented within the report. There is no response from the provider within the report.