An opinion piece by Tanika Davis
Our son, Slade, was diagnosed with autism at two-and-a-half. We had no idea what autism was, what it means for Slade or how to support him. We immediately sought professional advice and support to better understand autism, because we want Slade to live his best life.
As we became more aware of autism, and navigated health and education systems, we realised how ill-equipped and complex service systems are when responding to Aboriginal children and adults who are autistic, or living on the spectrum. Time and time again we were required to educate allied health and education professionals on the cultural differences in worldviews with Aboriginal communities, to better support our family’s needs.
I am a proud Worimi woman from Forster NSW. In any kind of relationship, trust is vital for Aboriginal people - and when engaging or working with Aboriginal people, trust should be the main focus.
There can be an element of fear around mainstream services. It’s a fear based around colonisation. Conversations around child protection and child removal is something we faced many years ago, and are still facing, as a culture. So building trust is always important.
I’ve been able to build a great relationship with our medical team and allied health professionals, however, there’s still a continued conversation around cultural needs and implementing cultural differences in our household into Slade’s therapy. There still needs to be an understanding that we do things differently.
For example, we’ve been able to tell our speech pathologist that we would like Aboriginal and Torres Strait Islander books included in Slade’s learning. We want to make sure that these are the first point of call for his development because they are culturally safe, and tell stories of the lived experience in our world. Slade has been able to relate more to these books than say, Where’s Spot?
We’ve also needed to be really open about our family dynamics - to advocate that, for us, it’s normal to call on the wisdom of extended family, our Elders and our community members. For example, in a child’s NDIS planning meeting, an auntie or a nan might be present. They can be a voice for us. We might have different family members join in at other times, as well, and that’s really important for us.
Health literacy is another huge barrier for our people. What is an occupational therapist? What are they actually going to do with my child in these sessions? What are they going to work towards? What does a paediatrician do? And what does it look like for a support worker to come into our home and do a session with our children? The majority of the time it’s not going to look like the ‘typical’ session - it’s going to look quite different. So how can therapists, specialists and support workers come into our home and be that supportive person for our family?
It’s important that the people we work with gain our trust and gain knowledge of Aboringial communities and the structure of our family. That’s something that we still struggle with every day - and that’s why we started The I Am, Movement, a platform providing culturally safe resources to empower Aboriginal families and share our journey through learning.
So far, those resources take the form of workshops for Aboriginal or Torres Strait Islander people seeking advice, guidance and empowerment throughout their ASD diagnoses journey. We also have a podcast, and have launched sets of culturally inclusive flashcards for children’s homes, educational institutions and learning environments. One set of flashcards teaches numbers 1 – 10, while the other teaches the alphabet alongside images of native animals.
We’ve been able to expand these resources and develop new resources in partnership with allied health professionals and service providers. One partnership has seen us develop a new resource to help families know how to correctly access the NDIS as a possible pathway post-diagnosis of ASD. This will provide streamline and appropriate information for families and carers to easily access.
I believe the NDIS can be supporting Aboriginal and Torres Strait Islander families more by including us in the FIRST conversation around planning how we support our families’ cultural needs. The NDIS could also look at forming authentic partnerships with our communities, and specific ways of improving the outcomes for whole families as well as carers, individuals and service providers.
My hope is for a fully inclusive, accessible and trustworthy scheme - and we at the I Am, Movement will continue to grow our resources, presence and outreach.
Tanika Davis has a graduate diploma in Indigenous Health Promotion. She’s an advocate for autism spectrum disorder awareness and founder of The I Am, Movement, based in Newcastle, NSW, and podcast, Autism Our Way – No Shame in Sharing.
