Daniel Filimoni and Anna Filemoni his wife and two children. Photo: Supplied
Pacific communities with negative perceptions of autism are being challenged to rethink their views and the language that describes people on the spectrum.
Samoan couple address lack of autism awareness
Autism, as defined by Autism NZ, "is a neurodevelopmental condition that affects cognitive, sensory, and social processing, changing the way people see the world and interact with others".
A Samoan couple, Daniel and Anna Filemoni, who lead the Wellington-based Pasifika Autism Support Group (PASG), said the Pasifika way of running the group "is a vehicle for change".
The autism group has a "pacific flavour" with use of Pacific languages, cultural practices and hospitality which makes it a tailored experience for various Pacific communities.
But it also sparked interest from families who aren't Pasifika, which means of Wellington PASG is made up of European/Kiwi families.
It is "open to everyone", he said.
The couple, alongside other advocates, are helping to raise awareness this April for Autism appreciation month in New Zealand.
Daniel Filimoni and Anna Filemoni his wife and two children. Photo: Supplied
In 2007, World Autism Awareness Day (2 April) and the month of April was declared by the United Nations to highlight the need to help improve the quality of life of those with autism and ensure their full and meaningful participation in society.
The Samoan duo took over PASG Wellington in 2022, just two years after their son was diagnosed with autism.
"I am proud to be a father of an autistic child," Daniel siad.
"My son has helped me view the world in a more colourful way. I no longer have a fixed mindset that is black and white. I have become more understanding."
Altogether Autism national manager Catherine Trezona said this month was "about appreciating and celebrating all things Autistic".
Photo: Supplied
Events are being run throughout the country including by PASG Wellington.
"It is important to make more visibe autistic strengths. Austistics are around everyone we are celebrating them everywhere," Trezona said.
There is an overall lack of data on autism within NZ, but a recent study lead by Massey University clinical psychologist Dr Rochelle Nafatali provided a deeper insight for how it affects Pacific families.
Trezona said there were roughly 4000 Pasifika autistic children in Aotearoa.
The research also highlighted only six percent of eligible Pacific families were accessing disability support.
"I think it does speak to how inaccessible our health services are for Pasifika," Trezona said.
"You've got the barriers to diagnosis. It's all those systemic and cultural barriers...having to step into a Western environment."
Pacific translations of autism
Daniel said it was about time they break stigmas around language used to define autism within some Pacific communities, particularly his own language, Samoan.
"I don't like the Samoan word for autism, it casts shadows on autistic individuals and has a negative meaning to the invisible disability," he said.
'Takiwātanga', the Māori term for autism coined by linguist and educator Keri Opai has been widely adopted including by Daniel.
His hope moving forward is for Pacific lingusts to coin a new word for autism in Pacific languages that have a negative meaning.
"It is massive but I would challenge organisations [and] groups to work with us, churches and Pacific elders to come up with a better term for autism that puts it in a positive light."
He said it is time people "normalise and appreciate autism as a beautiful part of someone's identity".
"You are not someone with Samoan, you are a Samoan. Same goes with people who are autistic, they don't have autism, they are autistic. It is not a problem to be fixed, it is who they are," he said.
Resources on autism are available, including a book, vĀsifika, by an all-Pasifika team of writers and illustrators.
vĀsifika presents a rich and diverse Pasifika perspective on autism. It features families from a range of backgrounds, including families with Samoan, Tongan, Niuen, Cook Island, and Tokelauan heritage.