world. I felt stuck between two worlds, the professionals and my - - PowerPoint PPT Presentation

❖

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)

FAMILY/ COMMUNITY WESTERN SYSTEM (MEDICAL MODEL)

❖

Culture barriers

❖

Stigma/family face

❖

Family-denial

❖

Fear-social services

❖

High prevalence of autism in the Somali community

❖

No word for autism in Somali language

❖

Autism perceived as mental illness

❖

Language barrier

(Barnevik-Olsson 2010, Hewitt et al 2013, Magnusson et al 2012 and Guerin et al, 2004)

❖

System barriers

❖

Medical terminology

❖

Confusion over different professional roles

❖

The diagnosis process

❖

Paper work (Educational Health Care Plan)

❖

Special need schools v Mainstream schools

(NICE 2014)

RESEARCHING BREAK THROUGH

❖

Workshops

❖

Networking

❖

Understanding what is available

❖

Conferences

❖

Lots of reading

(Aabe, 2017)

❖

Understanding Zak’s autism

❖

Taking the lead- educational provision

❖

Understanding the Special Educational Needs legislations

❖

Meeting other parents with autistic children

❖

This has lead Zak making significant milestones, the quality life of my whole family improved

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

❖

National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care West (NIHR CLAHRC West)

❖

Bristol University

❖

Bristol Autism Team

❖

Barnadoes – Children’s services

(Aabe, 2017)

❖

The West of England Centre for Inclusive Living (WECIL)

❖

National Autistic Society

❖

Inner City Schools

❖

Venturer’s Academy (Special Need School)

❖

Social Services

❖

We Are The Curious- science museum

❖

Yoga Furie - wellbeing

❖

HealthWatch

❖ 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

(Braun and Clarke, 2006)

Research question: To understand views about autism in the Somali Community

To find out what it is like for Somali families who are told that their child has autism To learn about what support is needed for these families

Semi structured interviews In Somali & English Audio recorded & Transcribed Thematic Analysis Interviews with 15 parents 12 mothers & 3 fathers 17 Children - 5 girls & 12 boys

Findings ❖ My Child is Different ❖ Perceptions of Autism ❖ Navigating the System ❖ Support

Link to mental illness & disability Fear of Stigma Delayed help seeking Denial & Disbelief Learning, Understanding, Accepting, Helping Shame & Stigma Understanding & Awareness Never heard of it No Understanding Acceptance Gratitude Reassurance Meeting Explaining Advising Nothing is Wrong Something is Wrong HCPs Vs Community Hoping for improvement Accepting permanent difference

Navigating the System

Uncertainty about Professional Roles Special Needs

• r Mainstream

School Assessment process Diagnosis process Accessing Services Early Intervention Language Barrier Social Services GP Health Visitor Transitions Choice

Multiple: appointments Professionals Information Response Unfamiliar system Delays Requesting services

Missed

Confusion Crucial

Presented to:



Community, University,



Health professionals, Council & Parliament Media:

• Points West
• Radio 4
• BBC Radio Bristol
• 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.

Further research: Improving diagnosis Autism in Somalia Stigma Increasing Awareness: Yusuf Cant Talk Healthy Cities week

• Training materials

being developed for Practitioners

• Parents
• Siblings

• Language
• Independency
• Social interaction

Zak achieves significant milestones

• Academia/researching
• Credibility and strength
• Skills and expertise

Weak public voice to Strong public voice

Increasing awareness of learning disability and autism in the Somali community

Families are seeking help Families are beginning to accept support from professionals Families are beginning to talk about autism in the community Support is being accessed earlier The quality of child/adult with autism is improved The quality of the whole family is improved

AI

Influencing policies Co- produced knowledge Community lead- Expert by experience Evidence based

Culturally competent training for professionals

Increased capacity, Allied work

Co-produced knowledge reaching multiple audience

Knowledge disseminated widely & lasting format

Co-produced knowledge accessible & in creative format

Autism Independence advising inner city schools were there are clusters of BAME children Courses for parents for maximising independence at home

(widening AI ethos)

Courses specifically designed; culturally sensitive Social service monthly drop in sessions in AI office Wellbeing activities for carers and the whole family Preparing families in the long-term to confidently access mainstream services

“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

• f 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

• f 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)

❖

Aabe, N (2017) No more Us and Them – Disrupting attitudes to autism. Retrieved from https://tedxbristol.com/speakers.

❖

Aabe, N (2017) The Impact of Autism in the Somali Community in Bristol. Retrieved from https://www.bristol.gov.uk/documents/20182/34748/Autism.

❖

Beckett, K., Farr, M., Kothari, A., Wye, L., & Le May, A. Embracing complexity and uncertainty to create impact: exploring the processes and transformative potential of co-produced research through development of a social impact model. Health Res Policy Syst. 2018; 16(1).

❖

Barnevik-Olsson et al (2010) Prevalence of autism in children of Somali origin living in Stockholm: brief report of an at-risk population. Developmental Medicine and Child Neurology, 52(12):1167-8.

❖

Braun & Clarke (2006) Using thematic analysis in psychology. Qualitative Research in Psychology, 3 (2), 77-101.

❖

Guerin, Bernard., Diiriye, Omar Roda., and Yates, Susan. (2004) 'Somali Concepts And Expectations Concerning. Mental Health: Some Guidelines For Mental Health Professionals ‘. New Zealand Journal Of Psychology 33 (2), 59-67.

❖

Hewitt et al. (2013) Minneapolis Somali autism spectrum disorder prevalence project: Community

• report. Minneapolis, MN: Institute on Community Integration, Research and Training Center on

Community Living.

❖

Magnusson et al. (2012) Migration and autism spectrum disorder: population-based study. British Journal of Psychiatry, 201, 109-115.

❖

Mezirow, J. (1996). Contemporary paradigms of learning. Adult Education Quarterly, 46, 158–172.

❖

NICE Autism Quality Guidelines. Retrieved from: https://www.nice.org.uk/Guidance/QS51

❖

Sandhu, B. (2017) The Value of Lived Experience in Social Change. Retrieved from http://thelivedexperience.org/contact-the-author/

❖

Valente, T., & Bharath, U. (1999). An evaluation of the use of drama to communicate HIV/AIDS

• information. AIDS Education and Prevention, 11(3),203–211.

hello@autism-independence.org www.autism-independence.org @AutismHello