At the age of 2.5 my son Zak was diagnosed with severe autism. ❖ For the first time in my life I had to meet a team of intimidating professionals all with different roles I’d never heard of. I decided to talk with my family about what happened with the ❖ professionals at the meeting. Their response was “what do western doctors know about us”, it is different with us”? They don’t understand us. It was clear my family and friends were thinking, doctors refer ❖ to Zak as though he was mentally ill and they would take him away from us. So my family didn’t want me to share anymore concerns about Zak with the professionals and the outside world. I felt stuck between two worlds, the professional’s and my ❖ community (Aabe 2017 and Guerin et al, 2004)
WESTERN SYSTEM FAMILY/ COMMUNITY (MEDICAL MODEL) Culture barriers ❖ System barriers ❖ Stigma/family face ❖ Medical terminology ❖ Family-denial ❖ Confusion over different ❖ Fear-social services ❖ professional roles High prevalence of autism ❖ The diagnosis process ❖ in the Somali community Paper work (Educational ❖ No word for autism in ❖ Health Care Plan) Somali language Special need schools v ❖ Autism perceived as mental ❖ Mainstream schools illness Language barrier ❖ (Barnevik-Olsson 2010, Hewitt et al 2013, (NICE 2014) Magnusson et al 2012 and Guerin et al, 2004)
RESEARCHING BREAK THROUGH Workshops Understanding Zak’s ❖ ❖ autism Networking ❖ Taking the lead- Understanding what is ❖ ❖ educational provision available Understanding the Special Conferences ❖ ❖ Educational Needs Lots of reading ❖ legislations Meeting other parents ❖ with autistic children This has lead Zak making ❖ significant milestones, the quality life of my whole family improved (Aabe, 2017)
What we offer; calibre provision; a long term vision to optimise the development of full potentials to transform children’s life’s by enabling caregivers… We work with over 75 ❖ families with autistic children/adult Parental and family ❖ education- Culturally appropriate ❖ workshops Advocacy ❖ advice and education around ❖ EHCP Short-breaks ❖ Trips, independent skills, ❖ siblings (Mezirow, 1996)
ACTA THEATRE The West of England ❖ ❖ Centre for Inclusive National Institute for ❖ Living (WECIL) Health Research Collaboration for National Autistic Society ❖ Leadership in Applied Inner City Schools ❖ Health Research and Care Venturer’s Academy ❖ West (NIHR CLAHRC (Special Need School) West) Social Services ❖ Bristol University ❖ We Are The Curious- ❖ Bristol Autism Team ❖ science museum Barnadoes – Children’s ❖ Yoga Furie - wellbeing ❖ services HealthWatch ❖ (Aabe, 2017)
❖ Sharing experiences – accepting ❖ and overcoming the diagnosis ❖ Listening and responding ❖ Building relationships and trust ❖ Using theatre to communicate sensitive information ❖ Therapeutic ❖ Empowerment ❖ Developing scenario by parents living with autism ❖ Play was casted by parents with autistic children initially (Valente and Bharath, 1999) Video: Yusuf Cant Talk 1/6 https://www.youtube.com/watch?v=jWoQ5QddrxQ
Research question: Interviews with 15 parents To understand views about autism 12 mothers & 3 fathers in the Somali Community 17 Children - 5 girls & 12 boys Semi structured interviews To find out what it is like for In Somali & English Somali families who are told Audio recorded & Transcribed that their child has autism Thematic Analysis Findings ❖ My Child is Different To learn about what support is ❖ Perceptions of Autism needed for these families ❖ Navigating the System ❖ Support (Braun and Clarke, 2006)
Link to mental Shame & Stigma Meeting Explaining illness & Understanding Advising disability & Awareness Fear of Stigma Nothing is Wrong Delayed help Never heard of it Something is Wrong seeking No Understanding HCPs Vs Community Hoping for Denial & Disbelief Acceptance improvement Learning, Gratitude Accepting permanent Understanding, Reassurance difference Accepting, Helping
Information Response Unfamiliar Multiple: system appointments Professionals Delays Diagnosis Assessment Requesting Accessing process process Services services Crucial Choice Special Needs or Mainstream Early Missed Transitions School Intervention Navigating Uncertainty about Language the System Barrier Professional Social Services Roles GP Confusion Health Visitor
Presented to: Media: Points West • Community, University, Radio 4 • • BBC Radio Bristol Health professionals, Council & Parliament • The Psychologist Publications: • Fox, F, Aabe, N, Turner, K, Redwood, S and Rai, D (2016) “It was like walking without knowing where I was going”: A qualitative study of autism in a UK Somali migrant community. Journal of Autism and Developmental Disorders. • Selman, L., Fox, F, Aabe, N, Turner, K., Rai, D. & Redwood, S • (2017) You are labelled by your children’s disability’ – A community-based, participatory study of stigma among Somali parents of children with autism living in the United Kingdom. Ethnicity and Health. • Training materials Further research: Increasing being developed for Improving diagnosis Awareness: Practitioners Autism in Somalia Yusuf Cant Talk Parents • Stigma • Siblings Healthy Cities week
Zak achieves • Language significant • Independency milestones • Social interaction • Academia/researching Weak public • Credibility and strength voice to Strong public voice • Skills and expertise
Families are seeking help Support is being Increasing accessed earlier Families are awareness of beginning to learning The quality of child/adult with accept support disability and autism is autism in the from improved professionals Somali community The quality of the Families are whole family is beginning to talk improved about autism in the community
Influencing policies Increased Co- capacity, produced Allied knowledge work AI Community Culturally lead- competent training for Expert by professionals experience Evidence based
Co-produced knowledge accessible & in creative format Knowledge disseminated widely & lasting format Co-produced knowledge reaching multiple audience
Courses specifically designed; culturally sensitive Social service monthly drop in sessions in AI office Autism Independence advising inner Wellbeing activities for carers city schools were there are clusters of BAME children and the whole family Courses for parents for maximising Preparing families in the long-term independence at home to confidently access mainstream services (widening AI ethos) “ Transformative at a broader macro scale where co-produced research combines with other interventions, wider policies or practice priorities to create dynamic synergies” (Beckett et al 2018)
“learning is understood as the process of using a prior interpretation to construe a new or revised interpretation of the meaning of one’s experience in order to guide future action” (Mezirow 1996, p.162).
How are we enabling ALL families ❖ living with autism and avoid disabling them? How can your setting benefit from the ❖ value of lived experience in social change? How can we improve the effectiveness ❖ of existing and developing new services? How can we enhance community ❖ cohesion and cultivating effective partnerships, action and co-production? How can we strengthen the legitimacy ❖ and accountability of social purpose? (Sandhu, 2017)
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