The Label Isn't the Problem. The Lack of One Is.

A headline in today's Herald Sun declares that Australia's autism diagnosis rate is distorted. I'd like to suggest that the real distortion is in how we're reading that number.

I have spent years working in Australian schools alongside children who have been called quirky, difficult, sensitive, a bit much, a handful, lazy, and worse. I have watched those same children struggle, mask, fall apart, and blame themselves for things that were never their fault to begin with. I have also watched what happens when a family finally gets a name for what their child has been living with. It is not distortion. It is relief.

So when I read today's Herald Sun reporting that Australia's autism rate is distorted by financial incentives, and I see a senior paediatrician suggesting that a diagnosis stops kids looking for solutions and that perhaps some of these children should simply be regarded as quirky, I have something to say. You cannot call a child quirky and tell yourself you are doing them a favour.

Quirky is not neutral. Quirky is what adults say when they don't have the tools, the training, or the will to understand what they are actually seeing. And what comes after quirky? Difficult. Lazy. Troublemaker. Too sensitive. Not trying hard enough. I have heard every one of those words used about children who were later diagnosed as autistic, and not one of them pointed anyone toward a solution. Every one of them pointed the child toward shame.

The Herald Sun article leans heavily on a Stanford University review of 66 studies, covering 213 million children across 26 countries, which found Australia had the highest autism prevalence in the world at 2.18 per cent, nearly three times the global average of 0.77 per cent. That is presented as evidence of a problem. Here is what the Stanford researcher, Jennifer Davis, actually said caused the high rate: Australia's 'highly developed surveillance systems, comprehensive national autism strategy, and strong emphasis on early detection and screening.' Read that again. Our surveillance systems are highly developed. Our national strategy is comprehensive. Our emphasis on early detection is strong. These are not failures. These are achievements.

The question is not why Australia's numbers are so high. The question is why other countries' numbers are so low, and what those children are missing out on. For context, the United States, with one of the most studied autism research bases in the world, reports autism in 1 in 36 children as of 2023. That rate has been rising consistently as screening improves. It is not because more children are becoming autistic. It is because more children are finally being seen.

Professor Frank Oberklaid argues in the Herald Sun that a diagnosis says there's something wrong with them, therefore it stops them looking for solutions. The research does not support this. What the research does show is what happens to neurodivergent children who go without a diagnosis. They are called lazy. Difficult. Fussy. Unmanageable. They grow up believing everyone experiences the world the way they do, which means they believe they are simply failing at something everyone else finds easy. They develop a relationship with themselves built on the conclusion that they are broken rather than different.

The consequences are not minor. Neurodivergent adolescents have ten times the risk of mental health difficulties compared to their neurotypical peers. A 2025 study found that students with ADHD and autism carry twice the emotional burden of their neurotypical classmates. Anxiety and depression in this group are not incidental. They are predictable outcomes of a world that never gave these young people the framework to understand themselves.

“You cannot call a child quirky and tell yourself you are doing them a favour. Quirky is what adults say when they don't have the tools, the training, or the will to understand what they are actually seeing.”

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And here is what the diagnosis does. A 2022 study found that approximately 65 per cent of children diagnosed with autism early showed notable improvements in social symptoms, compared to just 23 per cent diagnosed later. Research demonstrates that early diagnosis and intervention, particularly before age three, leads to substantial gains in communication, cognitive skills, and adaptive behaviour. Brain plasticity is greatest in early childhood. The window closes. Every year we delay costs something that cannot be recovered.

Professor Oberklaid says diagnosis labels children. He is right, it does. But here is what he does not say: those children were already being labelled. They were being called quirky, or difficult, or too sensitive, or attention-seeking, or slow. The question is never whether a child will be labelled. The question is whether the label will be accurate. An accurate label, delivered with care, opens a door. It says: this is what we are working with, and here is how we can help. It changes how teachers approach a classroom. It changes how parents approach a meltdown. It changes how a child understands their own mind.

A 2025 study published in the journal Autism Research found that positive autistic identity is directly associated with better mental health outcomes, including reduced social anxiety and improved psychological wellbeing. Knowing who you are is not a burden. It is a foundation. The diagnosis is not the end of looking for solutions. It is the beginning.

Roughly 40 per cent of all NDIS participants have autism, making it the largest diagnostic group in the scheme. The Federal Government invested $42 million through the 2025 National Autism Strategy specifically for better diagnostic pathways, earlier identification, and reduced wait times. These are not the actions of a system that is failing. They are the actions of a country that has decided, more firmly than almost any other, to take neurodevelopmental difference seriously.

The more interesting statistic is not that Australia has the highest autism diagnosis rate in the world. The more interesting question is: how many of those children are now in early intervention? How many families now have a roadmap? How many teachers now have context that changed how they show up for a student? How many adults, who might otherwise have spent decades wondering why they struggle with things others find effortless, finally have an answer? Australia has built something other countries have not. We have built an environment where a child can be seen, named, and supported rather than pushed through the system with a vague sense that something is a bit off but nobody quite knows what. That is not a distortion. That is leadership.

I want to tell you what our NDIS funding actually looks like. Because when the Herald Sun runs a story implying that families are gaming the system, chasing diagnoses for money, I think about our week. I think about the Occupational Therapist who spent forty minutes with our son working on the sensory processing that makes getting dressed in the morning feel, to him, like a genuine physical assault. I think about the Speech Pathologist who is patiently, methodically building the language he needs to tell us when something is wrong, rather than shutting down or exploding. I think about the Psychologist who is helping him understand his own mind so that he can one day walk into a room and not spend the entire time calculating every exit. I think about the social worker who sits with him and practises, week by week, the invisible rules of friendship that the rest of the world seems to absorb without trying.

None of this is a luxury. None of it is money wasted. Every single one of these professionals is paid from our NDIS support, and every single one of them is working on something that our son's school does not have the capacity or the resources to provide. These are the building blocks of a life. A life where he might one day feel less like a stranger in a world that was not built for him.

I want to be clear about something else: we pay privately for a significant portion of his support. Out of our own pocket. Because the waitlists are long, the funding does not cover everything, and we will not let him go without something he needs because the system has not caught up to the reality of raising a neurodivergent child in 2026. We are not unique in this. Every family I know who has a child with a disability is making the same calculation, every week, between what the funding covers, what they can bridge themselves, and what they simply have to go without.

When Professor Oberklaid suggests that a diagnosis stops families from looking for solutions, I genuinely do not recognise the families he is describing. Every family I know who has fought for a diagnosis has done so precisely because they were desperate for solutions. The diagnosis was not the end of the search. It was the beginning of finally knowing where to look.

The Herald Sun article welcomes the federal government's Thriving Kids program, which will move children with low to moderate support needs off individual NDIS plans and into community-based supports. There is a legitimate policy conversation to be had about how supports are delivered. What is not legitimate is hoping that fewer families seek understanding of their children. Support without understanding is guesswork. A diagnosis is how that understanding begins.

If you are a parent who has been told your child is just a bit quirky and you have a feeling that there is more to the story: trust that feeling. Seek the assessment. The diagnosis is not a ceiling on who your child can become. It is a map of who they already are, and the starting point for everything that comes next. Knowledge is not a label. Knowledge is power.