The Importance of Takiwātanga (Autism) Support Specialist
Many Whānau are Going Without Takiwātanga (Autism) Support in NZ - Here’s Why.
Despite the surging interest in developing more research and methods for supporting taonga Takiwātanga in New Zealand, many whānau go without the support they need on a daily basis. This is due to the lack of resources or even an official registry nationally, tracking the requirements of whānau needing support for Takiwātanga.
With the assistance of a Takiwātanga (Autism) Specialist, NZ whānau can learn new steps and ways to embrace the differences of takiwātanga within their whānau and the wider community - changing the way they live and enjoy life together, accepting, embracing, and celebrating their differences.
Yet, with so little data on the scope of Takiwātanga within New Zealand, it is hard to fully accommodate everyone to secure the support that could be life-changing.
Are takiwātanga and autism the same thing?
Takiwātanga derives from "Tōku/Tōna anō takiwā", meaning "in my/her/his own space and time", and was developed by linguistic and rangatira Keri Ōpai. Keri created Te Reo Hāpai, a te reo Māori glossary for use in the mental health, addiction, and disability sectors. It was created to provide a glossary of positive terms through a te ao Māori lens.
He mana tō te kupu – Words have power. Takiwātanga is a mana-enhancing term, that regards people with autism as taonga or gifted. This moves away from clinical terminology that characterises our taonga takiwātanga from a deficit perspective.
· Takiwātanga acknowledges individuals are different - they move on their own frequency, at their own pace, and may have alternative routes to achieve tasks.
· Takiwātanga is a life-long condition that affects how people think, behave, communicate, interact with others, and see the world.
· Takiwātanga is not an illness or disease that can or needs to be cured.
· Although some taonga may present similarities, each taonga is unique in their own way.
· Takiwātanga can affect all areas of health and well-being; it is not just a 'neurological disorder' that affects development.
· There is a high prevalence of takiwātanga, which requires more adaptive learning methods for taonga
Autism derives from Western understandings underpinned by medical ideologies of disability. The clinical perspective on autism can often carry negative connotations and looks at taonga from a deficit perspective.
Takiwatanga acknowledges Te Ao Maori perspectives on disability and diversity can be found in Kōrero tuku iho/pūrākau; Whakatauki; Te Reo Māori; Tikanga Māori; and whaakaro Māori to hauora. This is a body of knowledge that has been passed down through many generations and captures the wisdom of our tupuna that provides guidance for whānau on how they can lead positive lives.
How many children and young people are diagnosed with takiwātanga in New Zealand?
Tracking the sheer number of young people with takiwātanga (autism) in New Zealand is difficult, with many people not coming forward to seek a diagnosis and there being no current national registry to collect the data. The resources available to identify, track and quantify the accurate number of people who would appropriately be diagnosed with takiwātanga (autism) in NZ have simply not been allocated to this cause yet.
As cited in this study by researchers seeking to quantify the number of young people living with takiwātanga they found that "In total, 9555 unique individuals aged 0–24 with autism spectrum disorder were identified. The identification rate for 8-year-olds was 1 in 102." Scale this up, and the number of families that could be struggling with takiwātanga is staggering.
In this particular research, a strategy was employed involving linked health and non-health data to create a means of detecting instances of takiwātanga (autism) in children and young individuals residing in New Zealand. Furthermore, they investigated the occurrence rates of simultaneous mental health challenges, neurodevelopmental challenges, and related conditions within this specific group, making comparisons with the broader population. The approach successfully identified nearly 10,000 children and young people in New Zealand with takiwātanga (autism). Surprisingly, more than 68% of this group exhibited co-occurring mental health or related concerns, a figure nearly seven times higher than that observed in the general population. Approximately half of these individuals were identified as having multiple co-occurring conditions. The most frequently encountered conditions among this group included intellectual disability, behavioural challenges, and emotional difficulties. This team of researchers have crafted a valuable method for monitoring trends in service utilisation, treatment patterns, the quantity, and nature of co-occurring conditions, and assessing social outcomes for those with takiwātanga (autism). While the method may potentially underestimate the prevalence of takiwātanga (autism) in New Zealand, it represents a significant stride toward establishing a more comprehensive and evidence-based foundation to inform policies related to takiwātanga (autism) and how to support these families.
Study by Bowden, N., Thabrew, H., Kokaua, J., Audas, R., Milne, B., Smiler, K., ... & Gibb, S. (2020). Autism spectrum disorder/Takiwātanga: An Integrated Data Infrastructure-based approach to autism spectrum disorder research in New Zealand. Autism, 24(8), 2213-2227.
The Current State of Autism Support in NZ
"According to a report in 2021, children, on average, were getting approximately 8.7 hours of intervention per month. However, parents expressed the desire for their children to receive an extra 37 hours of intervention monthly. The predominant type of intervention observed among children was speech and language therapy. These findings suggest that parents would like a wider variety and more hours of educational early interventions than they are currently able to access."
Study by Kasilingam, N., Waddington, H., & Van Der Meer, L. (2021). Early intervention for children with autism spectrum disorder in New Zealand: What children get and what parents want. International Journal of Disability, Development and Education, 68(4), 521-537.
This study focuses on how there is a notable lack of knowledge concerning the nature and extent of intervention services available to young children with takiwātanga (Autism) within the New Zealand community. Additionally, there is a scarcity of data relating to the preferences and requirements of parents regarding the types and quantities of early intervention services in New Zealand. Consequently, this research endeavoured to assess the utilisation of early intervention services, as reported by parents, and their expressed demand for such services for young children diagnosed with takiwātanga (autism) in New Zealand. To obtain the information in this study, the team of researchers administered an online questionnaire to 64 parents and caregivers of preschool-aged children with takiwātanga (autism) residing in New Zealand.
Where to find trusted takiwātanga (autism) support in NZ today
We believe at Kanorau that it is imperative for more resources to be put into the study and support of takiwātanga so that more people can get access to the life changing tools and education to support them and their whānau. We hope our readers find these studies interesting and informative, and encourage anyone seeking information or support to reach out to us directly.
Kanorau is your Takiwātanga (Autism) Support Specialist offering advice, practical solutions, learning tools and access to a support community nationwide.
