28/03/2019
Calls to share autism experience
Project looks at support for families of a child with autism
Aboriginal families are being invited to share their experiences with autism, as part of an innovative project underway across the Mallee.
It’s part of efforts by Mallee District Aboriginal Services (MDAS) to listen to the community and learn about the support available for families of a child with autism.
“We are curious to learn from Aboriginal families about their experiences with autism diagnosis, support and education to see if this is an area our community wants MDAS to look at,” explained lead practitioner Kathy Crouch.
“Rather than assume we know, we are asking the community if there is enough support available when you have a loved one with autism, and we want to know if that support is culturally respectful and accessible.”
Defined as a complex neurobehavioral disorder, autism spectrum disorder has a wide range of characteristics and can be difficult to diagnose. It is estimated to occur in one in every 68 people, although there is no known cause.
While education and understanding of autism has progressed significantly in the past 20 years, there’s little documented about the experience of Aboriginal people in relation to autism.
“We are asking Aboriginal community members about their lived experiences of having a loved one seek support for autism, getting a diagnosis and accessing follow-up support,” Kathy said.
“We are listening to what families can share about interacting with professional services and what made this easier or harder for them to get support,” she said.
“We are also asking professionals what they know about autism and how it is perceived and experienced by Aboriginal and Torres Strait Islander families. Maybe there is an opportunity to share resources and wisdom.”
By November this year, MDAS hopes discussions with local families will have helped inform the development of a resource that shares information about autism in a way that honours culture, community and acceptance.
To date, Kathy has spoken a number of Aboriginal and Torres Strait families across the Mallee who have experience with autism. There are some recurring themes in their experiences, but Kathy says it’s too soon to draw any conclusions.
“We are really curious about what our families can tell us and teach us to do better with the services we already have in the Early Years sector, and what services may be needed,” Kathy said.
“If you are willing to share your experience, we want to listen and we want to learn.”
Families who would like to share their experiences with autism can contact Kathy Crouch at MDAS Mildura on 5018 4100 or Malinda Loats at MDAS in Swan Hill on 5032 5277.