Supporting whanau to navigate Takiwātanga

By Te Kuru o te Marama Dewes

The first indigenous seminar on autism is underway in Tūranganui a Kiwa. It's the beginning of a series of meetings that will be held throughout the region this year to support families dealing with the condition. Another aim is to help health professionals gain a better understanding of an indigenous world view of autism.

Autism affects the nervous system and symptoms can vary. This has an impact on communication, social interaction, obsessive and repetitive behaviour. The Māori term for autism is ‘takiwātanga’.

Shaan Te Kani of Ngāti Oneone, who has a child affected by takiwātanga says, “When we first started on our journey our whānau we didn't even know of this term takiwātanga, we only knew of autism. The moment we heard of takiwātanga, tōku, tōna anō takiwā, my, his or her own time and space, it just fit perfectly for our boy. I know that some people may have never heard of that kupu before, that's okay, it suited us and we can relate to that because that's how we see our boy.”

Supporting whānau

“I don't relate to the word autism but takiwātanga make me feel more relaxed more at ease, and I think it would for many whānau. You engage more with services or support more with a term like that rather than this clinical term.”

The first wānanga of its kind in Aotearoa, the theme is to support whanau to navigate the health system. It platforms indigenous knowledge and ways of thinking to help Māori on their journeys of managing tamariki with takiwātanga.

“For whanau Māori a lot of our people just carry on. They don't know what the processes are in getting support if their child is takiwātanga,” says Dorothy Taare-Smith of Ngati Porou who has worked in the disability sector since 1998. “So our whānau have huge challenges and, more often than not, they just won't go for help - they'll just manage it on their own as whānau.”

Whānau first

The Taonga Takiwātanga Charitable Trust has been established to provide professional development for whānau and services.

“When we first engaged with a service, reaching out for help basically, it was a really cold, clinical process, it was quite foreign to us, I guess it lacked that cultural understanding of how we are as a whānau, coming into our home with a clipboard, I wouldn't recommend that to any service, just come in and get to know the whānau first, treat us as people first as whānau, that probably the best thing that any service could do”, Te Kani says.

The wānanga draws on those lived-experiences and Māori professionals in the areas of special education and speech and language therapy.

Nikki Marie Kōhere-Smiler (Ngāti Porou, Te Aitanga a Māhaki) is a language therapist, “Some of the effects are related to communication. Sometimes a child might be silent for their whole life and, with others, we can help them find ways to communicate,” says Kōhere-Smiler.

With over 22 years' experience in disability health, Dorothy Taare-Smith also has a mokopuna with takiwātanga.

Feeling empowered

“So I guess I'm more fortunate than other whānau because I've worked in the system, I know what our whānau is eligible for, and I know the types of support that I want for my mokopuna.”

“Ko te tino whāinga ki a au nei, I hope that whānau go away feeling empowered to navigate the system, especially for whānau because it's a daunting prospect for some of them so I hope they walk away feeling like yeah we can do this as a whānau and we can do it our way, navigate this from our own waka,”  Te Kani says.

“That the services who do come, the different sectors who come to learn as well, that they take some of that mātauranga and incorporate it throughout their mahi and just with that cultural understanding.”

The event is the first in a series of wānanga in Te Tairāwhiti that will be held throughout the year.