At least one in five New Zealanders are classed as neurodivergent, a label that covers conditions such as ADHD, autism and dyslexia - yet society insists everyone should be ‘normal’. No Such Thing as Normal, a 10-part NZ Herald podcast with broadcaster Sonia Gray, explores how we can do better.
Singer-songwriter Victoria Girling-Butcher was destined to be a musician. At age 7 she was singing on stage as Gretl in The Sound of Music. VGB, as she’s known as an artist, went on to release four albums. And for many years she performed as back-up singer and guitarist for music legend Sir Dave Dobbyn.
But school was another story. Girling-Butcher has dyslexia, a condition that wasn’t even recognised in New Zealand until 2007. “I felt completely misunderstood my whole school life,” she says.
“At age 6 they kept me back a year at school. And it was done in a really horrible way, it was like ‘this kid is not getting it, she is stupid’.
“They put me at a desk by myself, so I wasn’t allowed to sit with the other kids. And that was the start of a really poor perception of myself internally. That I was nowhere near as clever as everyone else or there was something wrong with me.”
Girling-Butcher is a guest on Sonia Gray’s NZ Herald podcast No Such Thing As Normal, a series that explores neurodiversity and looks at the experience of New Zealanders with neurodivergent conditions.
There is greater awareness around conditions like dyslexia, ADHD and autism than when Girling-Butcher was a child. But neurodivergent people are still experiencing the kind of trauma she endured.
Gray says one of the biggest obstacles, particularly for parents, is trying to navigate the system. Her daughter, Inez, has several diagnoses, including dyspraxia, dyslexia and ADHD, but even after years in the system Gray says it’s still a struggle.
“There is no roadmap for this. Everything is a battle - getting an assessment, getting support, advocating at school. I had a kid that was constantly running away, wasn’t eating, and was violent at school and at home. And I could not get help. I felt like everyone thought we were just bad parents.”
The lack of a clear roadmap is one of the reasons ADHD NZ, Autism NZ, The Dyslexia Foundation of New Zealand and NZ Centre for Gifted Education have banded together to form the Neurodiversity in Education Coalition. They are campaigning for increased awareness and education around neurodiversity.
The coalition is headed by Justine Munro, who says the lack of a clear path for parents is exacerbating the problem.
“Right now, it is impossible for our families to navigate the education system or the health system, and it’s tragic because there are so many negative outcomes that come with unsupported neurodiversity.
“It’s not just the individuals who suffer. We’ve got to look at the mental health of our parents, their productivity at work when they’re dealing with this. The cost is huge.”
As CEO of the NZ Centre for Gifted Education, Munro was fighting for years for change – but was getting nowhere. The CEOs for the other organisations were equally frustrated, and Munro says that joining forces means they are much stronger.
“It’s a combined fight we’re on because neurodivergent people - no matter what specific diagnosis - have brains that operate in a different way than neurotypical people. Real thought, attention and time needs to be given to recognise those differences and to account for them.”
She says the first step is educating society about the differences, so neurodivergent people are no longer seen as a problem that needs fixing.
“Until we destigmatise neurodiversity, we will never see the behaviour change at the front lines of experience. Without investment in public understanding, nothing will change on the ground for neurodivergent people.”
No Such Thing As Normal was made with the support of NZ On Air.