Brain research is being undertaken in New Zealand that focuses on the genetic underpinnings of autism. Photo / 123rf
Brain research is being undertaken in New Zealand that focuses on the genetic underpinnings of autism. Photo / 123rf
If you are neurodivergent, or parenting a neurodivergent child, it can often feel like the world doesn’t take you seriously.
The challenges might be huge, but they’re largely invisible and often unpredictable. Life can become a cycle of apologies and explanations. There’s no blood test to prove these experiences arereal, so they are often dismissed as a lack of effort or a character flaw.
But advances in science and technology mean this is starting to change. From brain scans to genetic analysis, we are starting to build a picture that is not just descriptive, but measurable.
In the latest episode of No Such Thing as Normal, Sonia Gray speaks to some of the researchers in New Zealand who are making important contributions to this work.
This includes a team at the Centre for Brain Research at the University of Auckland. Their research focuses on the genetic underpinnings of autism. Dr Jessie Jacobsen is heading the team and says genome sequencing has advanced to a point where they can identify the genetic basis of an individual’s autism in about 30% of cases.
“Sometimes there’s a single gene involved for a family, and for some ... there will be combinations of different genes. We know of about 100 genes that are involved and it’s the variants in those genes that can contribute to autism. But the genetics itself is quite complex.”
For many, even the idea of autism research can ring alarm bells. The autistic community has a long history of being studied, categorised and misunderstood.
But this research is focused on improving outcomes for autistic individuals, not erasing who they are. A precise diagnosis can help with pathways to support, and variants in certain genes often mean a higher risk for other co-occurring conditions.
“The thing that means the most to a lot of families is having an answer, a really specific answer,” Jacobsen says. “There’s an understanding about who they are, or a better understanding of their child. And that’s something I didn’t really appreciate.”
Dr Ruth Monk, the autistic adviser on the project, says the work is about getting clarity, not finding a “cure”.
“Autism doesn’t need curing,” Monk says. “Autistic people tend to know our brains work differently and we want to know why.”
For some, that answer can be life-changing. Especially for those who’ve spent years, even decades, being told they’re not trying hard enough, or that their struggles are somehow their fault.
“Having that confirmation that this is just how we are … It can be incredibly freeing,” Monk says.
The experiences of those with ADHD are also being validated through a separate study on ADHD dynamic brain activity, run out of the Mātai Medical Research Institute in Gisborne.
Sonia Gray (left), host of No Such Thing as Normal, with Dr Jessie Jacobsen and Dr Ruth Monk from the Centre for Brain Research at the University of Auckland. Photo / Supplied
Using advanced imaging, researchers can see changes in blood flow to the brain when participants are allowed to fidget. Activity returns to the areas linked to focus and decision-making. This is concrete evidence for something many have known intuitively, that movement brings clarity for those with ADHD.
It’s a powerful form of validation. Not just for individuals, but for whānau as well. Like the father in Tairāwhiti who, after hearing the research explained, put his arm around his daughter and said, “I’m sorry”. The science helped him understand his child’s behaviour was not deliberate but a reflection of how her ADHD brain functions.
And for many, the shift from doubt to understanding can make all the difference.
Support for the Centre for Brain Research can be made here.
