In Season 2, Episode 3 of The Autism Podcast, Chris speaks with Venessa Bobb about the difficulties that various ethnic minority autistic people and their families face including stigma and when accessing support.
Venessa is a well-known UK-based autistic campaigner and advocate of autistic people in particular those from Black, Asian and Minority Ethnic Communities. She is the founder of A2ndvoice, a small voluntary group run by parents and carers of autistic children and adults, and Branch Officer of the National Autistic Society (NAS) Lambeth Autism Group (see also https://www.autism.org.uk/get-involved/volunteer/amazing-volunteers/venessa.aspx). She is a member of the Advisory Group All Party Parliamentary Group on Autism (APPGA), an advisor on the National Autistic Society's Diverse Perspectives report, the author of Network Autism's Supporting BAME autistic people and their families article, and supports the organisations Cassandra Centre and GroomSafe.
You can contact Venessa through her Twitter handle (https://twitter.com/BobbVenessa) and LinkedIn page: https://www.linkedin.com/in/venessabobb/.
Timeline:
0 - 2.02: Introduction
2.03 - 9.01: Venessa's experiences of her autistic son when he was young including people's stigmatising and negative reactions across the community, the diagnostic process
9.02 - 15.19: Accessing support after her son's diagnosis and the lack of cultural representation; judgements and stigma towards her parenting, the increase of stigma in the community when her son's diagnosis was revealed, the importance of others accepting the diagnosis, stigma from professionals including judgements from the GP and social services that the underlying issue was parenting skills, the importance of being transparent and communicating with professionals.
15.20 - 21.08: The limitations of the Autism Act 2009 (until the update in 2019) in particular for autistic children, the statutory services not implementing the Act appropriately, lack of representation, the need for the community to come together to support each-other and to hear stories from the BAME autistic community, the need for BAME autistic representation
21.09 - 24.17: The Black community reacting to incidents but not coming together in unity and finding solutions through appropriate representation from the community, the Cassandra Centre, the importance of looking at family dynamics and looking beyond just autism per se to understand the whole picture, the importance of the different communities supporting each-other
24.18 - 27.46: How social services can improve the way they are delivering their support to families, lack of joined up thinking across professionals, the importance of cultural competence, trusting services
27.47 - 30.15: The role of the religious community in supporting autistic people and their families, what led Venessa to set up A2ndVoice and the work the organisation focuses upon, her other roles including the NAS Lambeth Autism Support Group
30.16 - 38.29: How we can reduce autism stigma and discrimination across different communities
38.30 - 40.19: Autistic people in the criminal justice system
40.20 - 51.12 Advice to new carers and parents of recently diagnosed autistic children who are experiencing/vulnerable to stigma