Putting autism centre stage

Rates of autism among the Somali community have been shown in several studies to be high, yet in the Somali language no word for the condition exists. People in this community with children who have been diagnosed with autism therefore encounter stigma, fear and a general lack of awareness of the condition. Indeed, Nura Aabe faced such a great deal of stigma after her son Zak was diagnosed with autism that she had to change her own social group entirely just to openly love her own son. Aabe wanted to ensure no other British Somali family would go through the same experiences as her.

In 2013 Aabe, now an Educational Psychology MSc graduate (University of Bristol), set up Autism Independence in Bristol to provide a support network for parents, particularly those in the British Somali community, to help them to cope with and understand the condition. After a degree in Early Childhood Studies and hearing anecdotal accounts of the stigma around autism among Somali parents in the city, she wanted concrete evidence of the challenges and barriers many face, not only in accessing NHS services but also in having good support networks from close family and friends.

Aabe said there is stigma towards autism and disability in general in the Somali community: 'I know from my own community as an insider and now a researcher, that there's nothing inbetween normal and not normal. What we perceive of an individual is someone normal or someone who is ill. I had to change my social network to one in which people could accept my son for his autism and in which I could love him for who he is, without being expected to hide away. I focused on helping my son so that he can lead a quality life and have a voice and a choice in life. He's 18 now, he has got language and goes to the gym, he reads and writes… we are not ashamed or afraid to go out with him… for me that's the world, it means so much to me. I never thought I would be able to share that.'

Aabe heard of the work of Consultant Psychiatrist Dr Dheeraj Rai, which examined rates of autism among Somali people living in Sweden. Rai in turn put her in touch with the National Institute for Health Research Collaborations for Leadership in Applied Health Research and Care (NIHR CLAHRC) West. This is one of 13 UK research groups funded by NIHR that works with partner organsations to consider  the needs of patients and how research can be applied to practice in the NHS.

Dr Fiona Fox was assigned to the project and worked alongside Aabe to conduct in-depth interviews with 15 Somali parents about their experiences. Fox, who has a background in Health Psychology, now works for CLAHRC West's Ethnography Team as a qualitative researcher. The research, Fox said, aimed to be truly community led and she and colleagues spent time working with community groups to explain the project and ask what they might want from the research and what could be useful.

After speaking to 15 parents Fox and Aabe found they sometimes struggled to accept their child's diagnosis, and some were confused by the diagnosis itself – particularly the fact it lacks any physical manifestation. As Aabe felt herself, parents also felt the need to hide their child due to the stigma around mental health issues in the community; some also delayed seeking any support. Parents spoke of being told their child would 'grow out' of autism and that they needn't seek help from doctors. When parents did access services, they often felt shocked or disbelieving upon hearing a diagnosis – they pointed to a lack of information about the condition written in Somali, and those with fluent English still struggled with much of the terminology used in meetings or publications about it. Many families spoke of their desire for places in the community where they could safely take their child to play – they felt this could encourage people not to hide, but to socialise with their children and at the same time raise awareness in the community.

Fox said the project had been incredibly interesting to work on, especially alongside Aabe, and that of all her qualitative work in the last 15 years this project had had the widest impact. She said: 'The research came from the community, they were very involved in the design and the materials we used were translated and made appropriate for local families. Nura and I we were co-interviewing in both English and Somali and that enabled parents to talk at length and feel comfortable. Nura bridged that gap, encouraging people to take part and talk about their experiences. The parents face a lot of conflicting messages: they're in a health and social care system which is pointing them towards accessing services but at the same time have friends and families sometimes telling them that there's nothing wrong with their child.'

Around the same time Aabe and her colleagues began their research Aabe decided to contact Acta, a theatre group which aims to create plays based on communities with unheard voices. 'We're not a community that uses lots of leaflets or computers or modern technology and I wanted to create something that would have more meaning to Somali families. I want people to talk about autism: there's no concept of autism in Somali culture but it's my son's story.' The first version of Yusuf Can't Talk was created and performed by Aabe with other Somali mothers in UK and Rotterdam. She has now taken a one-woman version of the show to London and Cardiff, and plans to visit San Francisco this year.

Thanks to the parallels between the production and research Fox and Aabe have developed a presentation of their work, with colleagues, that incorporates both of these elements, using clips from the play to bring to life the stories of the parents involved. Fox and Aabe recently presented their findings at the Houses of Parliament to the All Party Parliamentary Group on Autism (APPGA) and Aabe has appeared in local and national media, including BBC Radio Four's Woman's Hour.

Aabe said the whole experience had been 'unbelievable'. She added: 'Every single time I walk into a situation like talking at the Houses of Parliament it makes me think, what can people do to change the world? It has made me realise that if I can do it anyone can. It makes me so proud to speak to people of my son and what he's achieved. We've got over 50 families under Autism Independence now which have all come forward because I've spoken about it.'

Aabe is now writing a proposal for a PhD exploring autism and ethnicity, and is hoping to write a book based on her son's experiences. 'I've learned skills which empower me to empower others… it's been so powerful to use research, theatre and experience to have an impact, especially coming from a background of women staying in the house… I'm hoping to open doors for the next generation to speak up.' er

Aabe will be performing Yusuf Can't Talk at Ripple Hall in Barking on Thursday 26 January and the following day at Horfield Community Centre in Bristol. To register to attend see: http://tinyurl.com/jo94ng8