Former Radio Hauraki host Angie Grey with her neurodivergent daughters.
Aotearoa has become fluent in the language of neurodiversity. Autism, ADHD, dyslexia, sensory overload and masking are now familiar terms.
But knowing the language, and even the challenges that can come with it, is not the same as understanding the individual.
So what does inclusion and belonging really look like in Aotearoa? And are we really listening to what neurodivergent people and their whānau are telling us? These questions are at the heart of the season finale of the NZ Herald podcast No Such Thing as Normal.
As part of the episode, Sonia Gray visits a family home where sisters Elodie and Coco are getting ready for school. The girls are bright, engaging and bubbly, and their mum Angie describes them as the joys of her life. But there are unseen pressures. Both Coco and Elodie are neurodivergent and find many aspects of life overwhelming.
Some of the biggest challenges these girls face are hidden in the smallest details: like the suffocating sensation of wearing school socks. Gray asks Elodie to describe the feeling of socks on her feet. “It’s sort of fuzzy,” she says “like a lizard shedding it’s skin”.
It is a tiny detail, but a revealing one. For many neurodivergent children and their families, the world is full of sensations and expectations and demands that others don’t register. And while all goes smoothly on the day of Gray’s visit, the calm is fragile.
The previous morning Angie had been on the floor in tears, trying desperately to calm two anxious and dysregulated kids. The meltdowns are unpredictable and often intense.
“No one, apart from Rich, has seen it,” Angie says, referring to the girls’ dad. “No one. No one’s seen it.”
And when people don’t see it, it’s hard for them to believe it.
That invisibility is familiar to many families raising neurodivergent children, particularly those who mask in public. A child may seem settled at school, but the cost is often paid at home, sometimes in ways that become unsafe.
For Angie, the pressure at home became unsustainable. She was forced to quit her job as Weekdays host on Hauraki FM, a job she loved. It is a reality many parents in New Zealand are sadly very familiar with: lost income, lost identity, and a never-ending cycle of trying to both regulate their children, and advocate for them.
Gray had a similar experience with her own daughter, and describes those years as “overwhelmingly hard”.
But she also believes we need to be careful not to let the struggles become the whole story.
“I think there’s a risk of reducing people to their challenges,” she says. “Of course support matters, families need practical help, they need people to really listen to where the struggles are. But if we focus only on that then we’re missing the gold.”
It’s a sentiment is shared by Raiha Tahuri, whose 11-year-old son Tomokia is non-speaking and autistic. She says Tomokia’s diagnosis at 3 years old was validation but does not define him.
Tomokia has changed the way his whānau sees communication, tikanga and belonging. He communicates through sound, movement, emotion and connection, and Tahuri says his presence has challenged assumptions about what participation should look like.
“These children show us day in, day out,” Tahuri says. “They’re pretty much writing the story in front of us. You just have to be willing to stop and listen.”
Tahuri navigates both the Pākehā and Māori worlds as she supports her son. But she believes a Te Ao Māori approach to neurodifferences is what has helped her perspective.
For autism researcher Dr Jessica Tupou, Te Ao Māori offers a powerful lens for neurodiversity. She says its wisdom is naturally aligned with inclusion, through whakataukī, pūrākau and kupu such as aroretini and takiwātanga. “All of these speak to this idea of taking people as they are. Providing that space and that gentleness to just let them be who they are.”
But Tupou says the diagnostic system often asks whānau to do the opposite: focus almost entirely on deficit.
“That doesn’t sit well with many Māori,” she says. “That’s not how we view our children, it’s not how we talk about our children ... it’s not mana-enhancing.”
“We talk about ‘what works for Māori works for everyone’. Through my research, what’s coming out is what works for neurodivergent kids works for everyone.”
And “what works” is not a denial of the difficulties, but a widening of the lens. One that can hold the daily challenges of children like Coco and Elodie alongside their passion and zest for life, and can recognise both the support Tomokia needs and the gifts he brings.
Aotearoa has become better at naming neurodivergence. Now we have to get better at listening to it.
No Such Thing as Normal is an NZ Herald podcast, hosted by Sonia Gray. The latest episode is the last for season three of this series.
Made with the support of NZ on Air.
You can listen to it on iHeartRadio, Apple Podcasts, Spotify or wherever you get your podcasts.