Understanding Autism in the Somali Community of Sheffield

Introduction

As part of the Working Together in Research Initiative, led by South Yorkshire Innovation Hub, South Yorkshire Voluntary Community and Social Enterprise (VCSE) Alliance and voluntary community sector partners, bids were put together to fund research projects that would increase opportunities and diversity in community research participation, addressing health inequalities.

Reach Up Youth, a Sheffield-based charity was selected and conducted an in-depth research project to explore the increasing prevalence of autism within the Somali community. Spearheaded by Fardusa Isse, this study focused on the experiences of Somali mothers raising autistic children. Autism is perceived to be increasing disproportionately in Somali communities across Western countries and was echoed within the Somali community that in Sheffield, nearly every Somali family is to have at least one child with autism. This research aimed to raise awareness, engage families, and explore potential causes behind the perceived rise of autism in the community; identifying gaps in services and areas of improvement.

Progress, Challenges, and Lessons Learned

The project consisted of weekly group support meetings with Somali mothers of children with special needs sessions in early 2025, hosted at the Verdon Centre in Sheffield, an accessible venue for the mothers. Ten Somali mothers participated across seven sessions, each session included a professional guest speaker, including doctors, psychologists, pharmacists, wellbeing coaches and researchers. Topics for each session were co-developed through prior consultation to ensure cultural relevance. Efforts were made to create a non-judgmental safe space to facilitate discussion with mothers, listening to their concerns to encourage honest discussion. To ensure accessibility and engagement, these sessions were facilitated by a bilingual coordinator, who provided translation to in both English and Somali and Somali refreshments were also provided.

The four main topics included:

• Genetics
• Vitamin deficiencies
• Medication and vaccination
• Stress and trauma

Not only were these main topics of discussion, the research also surfaced four commonly believed contributing factors to autism: vitamin deficiencies (notably vitamin D and iron), genetic predispositions (inborn errors of metabolism), vaccination timelines, and maternal stress and trauma during pregnancy. Mothers often attributed the onset of symptoms to developmental regressions following early childhood vaccinations.

Despite scientific consensus refuting vaccine-autism links, many Somali families maintain skepticism, influenced by anecdotal experiences. Others believed dietary and environmental shifts in the UK could play a role. A recurring theme was the lack of culturally appropriate support and long waiting times for diagnoses.

In addition to vaccine hesitancy, throughout the sessions mothers also highlighted the following challenges: cultural stigma, language barriers and limited support from health and education services.

Impact and Successes

The project empowered mothers who felt dismissed by professionals. Many expressed a sense of validation and relief through shared experiences.

The research revealed that some children exhibited signs of inborn errors of metabolism (IEMs), conditions potentially linked to developmental delays and mothers expressed a desire for earlier genetic and metabolic screening through heel-prick tests at birth.

The project strengthened partnerships with universities and health services. A celebratory final session, complete with Somali food and certificate awards, symbolised a strong community milestone. For many participants, the project was their first encounter with health research and left a lasting impression.

Next Steps

Recommendations from the study include:

• A need for further research into the rise of autism within the Somali community and potentially extending this to include other East African communities.
• Conducting a large-scale study similar to the ‘Born in Bradford’ project, which involved 60,000 participants.
• Offering follow-up research to advance this research and keep communities engaged.
• Enhancing communication between professionals and families, especially around autism education.

It was highlighted that most importantly, we listen closely to the Somali mothers who participated in the focus groups, as they represent many voices within the community, for example providing flexibility in vaccine scheduling to address parental concerns.

The findings emphasize the importance of culturally sensitive community health research and the power of lived experience. This project not only spotlighted autism in Somali communities but laid the groundwork for policy advocacy and systemic change.

Read the full report.

Find out more:  reachupyouth@gmail.com Fardusaisse@gmail.com