Autism Spectrum: South Asian Project

Introduction: Andy Morris Safia Khaliq Mo Hussain

Background Cygnet Parenting Support Programme. Autism training programmes run for parent/carers by Barnardo’s had low levels of take up from parents of children with a South Asian heritage background. Small group formed to develop the project with Healthy Minds Funding.

Aims of the project To better understand the reasons for the low levels of take up from parents/carers of children with autism from a South Asian heritage background on the Barnardo’s Cygnet parenting training programme. To increase the levels of take up of parents/carers with a South Asian heritage background on parenting training programmes for families with a child on the autistic spectrum.

Potential reasons for low parent training take up: The under identification of autism amongst children from a South Asian heritage background in Bradford and Airedale. Parents who are not accessing a range of services are less likely to be aware of parenting support programmes. Programmes were not available in appropriate community languages.

Potential reasons for low parent training take up: Absence of skilled South Asian workers able to deliver training and access community networks. Programme might need adapting to meet the needs of families giving more detail within a relevant cultural context e.g. beliefs around disability/impairment. Programme needed to be more flexible with the opportunity for introductory information to be supplied within the family home, particularly where there were large extended families.

Analysis of parent programme take up

Identification of developmental worker Criteria for development worker:  Sound knowledge of the needs of parent/carers with children on the autistic spectrum.  Community language.  Knowledge of South Asian culture. Part time development worker appointed by Barnardo's meeting the above criteria.

Role & findings of developmental worker: Working in partnership with parents and relevant professionals…what did they tell us?...not just language! More Networking. Development worker with knowledge of autism, community language/communication skills. Adapting, adding to and translating materials from the existing Cygnet parent programme. Delivering parenting support programmes for South Asian parents.

Role & findings of developmental worker: Providing data to evidence best practice. Empowering other parents and professionals to deliver parenting support programmes for South Asian families.

Outcomes of project: Significant increase in the number of South Asian parents attending training sessions. Raising Awareness within wider community Insights gained into the training needs of South Asian parents/carers. Development of materials to address beliefs about and perceptions of disability.

Outcomes of project: Development of training materials addressing issues of puberty and sexual health. Involvement of parents has fostered interest in co-presenting future training programmes. Contribution to winning National Training Award 2010.

Outcomes of project:

Conclusions and recommendations The work of the project strongly suggests that best practice should reflect the following recommendations: Future South Asian autism specific parent training should be managed and presented by trainers with knowledge of autism as well as a similar cultural background and language skills to the parents/carers in the training group. Training should take account of cultural differences in the perception of and beliefs about disability. Training should be adapted and extended to reflect the concerns of parents/carers and particular cultural groups.

Conclusions and recommendations Trainers should be able to network directly with families and the South Asian community to increase confidence in attending training. Long term work should be undertaken to develop insights into the needs of other cultural groups and to extend the current work with South Asian parents. Consideration should be given to extending funding to continue the development work.

Parents comments Attending cygnet has made me stronger, I can now manage my child better. Initially they (family/community), think its the parents fault or someone as done something (black magic), but when you look into it deeper it turns out to be something different l know I'm not the ony parent in this situation During special occasions such as Eid, wedding, funerals have a Really difficult time, but work on Sensory issues helped me a lot.