As Neurodiversity Celebration Week draws to a close, we are shining a light on an important study underway at The Kids Research Institute Australia, led by Dr Thom Nevill, a Research Officer within our Human Development and Community Wellbeing and Child Disability teams.
Driven by both professional expertise and lived experience, Dr Nevill’s research is exploring how families across Western Australia navigate the complex journey to a diagnosis of Specific Learning Disorders (SLDs), including dyslexia, dysgraphia and dyscalculia.
“The inspiration for the study was my own experiences. I was diagnosed with all three SLDs in high school I saw how difficult the pathways could be to getting a diagnosis when you need it,” Dr Nevill said.
Understanding the journey
One of the first studies of its kind in Australia, the research brings together the voices of both parents and young people – capturing not only the practical barriers to diagnosis, but also the emotional and educational impact along the way.
To date, Dr Nevill has conducted interviews with 29 parents and 15 young people, alongside a statewide survey of 58 families.
“No other study in Australia has actually asked young people about their experiences of getting a diagnosis,” he said.
A clear picture is emerging – pathways to diagnosis are often unclear, inconsistent and, at times, overwhelming.
“People are being steered in all sorts of different directions… the pathways to a diagnosis are often unclear.”
For many families, the journey can take years.
“There’s a big gap between when parents first identify their child is struggling and when they get that final diagnosis… sometimes it can be years.”
Barriers that shouldn’t exist
Cost and access remain major challenges. Families can spend thousands of dollars seeking answers, while public waitlists can stretch for months or longer.
“If you can afford private diagnosis, you get in earlier, so disadvantage compounds,” Dr Nevill said.
These challenges are often amplified for regional families, where access to services is limited.
Why support matters
The study highlights how much a child’s experience depends on what happens after diagnosis.
“It really hinges on how schools respond… there’s not a system-wide approach.”
When schools provide the right support, the impact can be transformative—both for learning and wellbeing.
Encouragingly, diagnosis itself can be a turning point.
“Diagnoses help young people understand their difficulties and not blame themselves… that can lead to a restoration of self-confidence.”
Looking ahead
Dr Nevill hopes this research will drive meaningful change, improving access to diagnosis, informing policy, and supporting families with clearer pathways.
“We need to put a real spotlight on this… because these conditions have a significant impact on young people’s wellbeing and educational outcomes.”
As Neurodiversity Celebration Week concludes, this work is a timely reminder that celebrating neurodiversity must go hand-in-hand with improving systems, access and support, so every child has the opportunity to thrive.
First published Friday 20 March 2026.
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