Ted X Speaker Reveals What it’s Like Having Autistic Son in Somali Community
There is no word for Autism in the Somali language and it often goes ignored
A British Somali woman has organised a ground breaking event in Bristol to raise awareness of autism in her community.
Nura Aabe from Bristol is holding an event at the Watershed to educate, dispel myths, and highlight an unspoken issue.
Research has indicated that Somali people have a higher statistical chance of developing the condition. Yet despite this it often goes undiagnosed and rarely recognised within the culture.
The families with autistic children, therefore, experience difficulties accessing and engaging effectively with local services and Nura wants to create a dialogue.
It is hoped the event will build a bridge for both Somali families and professional practitioners.
Nura’s son Zak has autism and found it very difficult within her own community to get acceptance of the condition.
She said: “There is no word for Autism in the Somali language, it is not recognised or seen as something of concern.”
Many parents of children with mental health issues, can struggle to find the level of support needed for their child, but for Nura it was more acute. Her community didn’t understand, and neither did the professionals.
“I felt stuck between two worlds, the professionals and my community. Neither of which understood me, and neither of which understood Zak,” she explained.
This led her to set up an organisation called ‘Autism Independence’ to initially raise awareness of the condition for families in the Somali community , and to support parents across Bristol and the south west. This then evolved to support the cultural awareness of professional bodies, and practitioners in education, health care and social services many which lacked the necessary understanding.
She explained: “We want to improve understanding and find solutions, and felt it was important to bridge the gap between families and providers. So we provide consultancy, training and guidance for practitioners to be culturally sensitive in their support for families affected by autism.”
The organisation has grown and grown, and is now fully embedded within in the health profession.
Nura has herself conducted a Ted X talk on the subject, commissioned a local film, featured in a BBC documentary, and her story has appeared on international website Buzzfeed.
It is in the field of academic research that much of Nura’s work is embedded.
A national academic paper was commissioned in 2017 which confirmed what she suspected, that there was a disproportionate high degree of autism in Somali children. The reasons for this are currently unclear.
It also revealed misunderstanding and confusion over the developmental disorder in the British Somali community, a hesitation to engage with services, and a sense of community shame attached to mental illness.
The symptoms and tell-tale signs of autism were not being picked up.
In 2015 in partnership with Bristol University and Healthwatch, Nura conducted a report entitled ‘The Impact of autism in the Somali Community in Bristol.’
The key findings highlighted there were significant barriers the Somali community faced in accessing services and being understood, and several recommendations suggested in education, healthcare, social care and for voluntary organisations.
It looked into why Somali families do not access services effectively.
Nura explained: “Somali people are often nervous about social services for example, as its seen as an organisation that takes your children away. So they tend to keep things quiet within their own families.”
The need for more effective dialogue was recommended. Fostering trust, and suggestions put forward ranged from an increase in translation services, effective outreach, and regular drop in events.
It is Nura’s mission to try and support real change. She herself has walked this road, and admits to avoiding her own son’s diagnosis at first, through to now changing the lives of others.
A big step is the first dedicated conference on autism in Somali families in Bristol this week. There will be a screening of the film Nura made and set in Bristol. The aim is to educate families and practitioners, dispel some myths, and offer some practical solutions.
The ‘Overcoming Barriers: Autism in the Somali Community’ event takes place at the Watershed on April 3 and starts at 9:30am.