Lived experience is evidence.

When it comes to neurofeedback, parents and carers of autistic individuals are not merely bystanders—they are experts in the daily lives of their children. They observe the nuances, the behaviours, and the shifts that no clinical trial can capture. This makes their experiences an invaluable form of evidence, often overlooked in the larger funding debates.

Take neurofeedback, for example. While studies might present conflicting conclusions, parents report noticeable improvements in focus, behaviour, and emotional regulation. These changes have transformed the lives of families who rely on neurofeedback to manage daily challenges. It’s hard to argue against the reality of progress observed through the eyes of the parent.

The decision to defund neurofeedback under the NDIS dismisses these real-world outcomes.

It prioritises perception over lived experience, ignoring the unique, individualised responses that many autistic children show to this treatment. For families who have seen success, the removal of funding feels like a betrayal, as though their experiences don’t count. It associates us with those who have abused the NDIS program, but that is far from who we are.

But our experiences do count.

This decision was made without consultation of the parents and practitioners who have lived experience. Lived experience should be at the heart of any decision that affects people's lives, especially when it comes to something as personal as autism treatment. Families know what works for their children—and their voices should be heard.

Let’s listen to them.

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