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The Canberra Times
The Canberra Times
Sarah Lansdown

Why neurodivergent children are falling through the cracks

Tyler Warner love reptiles, cooking and learning scientific facts.

"Do you believe in the five second rule?" he asks.

"Because if you drop food on the ground and you wait five seconds... it would be 20 per cent covered in germs."

Tyler struggled in primary school before getting a dual diagnosis of autism spectrum disorder and attention deficit hyperactivity disorder (ADHD) in year 5.

His mother Kaylee had to borrow money to speed up the diagnosis process to ensure he got into a learning support unit in high school. He's now thriving in his learning support class with seven students and a teacher aid.

His younger brother, Chase, is still on the public wait list to be assessed by Canberra Hospital specialists.

He struggles to regulate his emotions, has difficulty concentrating and is falling behind in class. But until he gets a piece of paper with a diagnosis, the family has been told there is no funding or support for him in school.

"We're really pushing for him because he's very reckless and he just doesn't have that support so he's getting in trouble," Ms Warner said.

Chase will have been on the waitlist for two years before being seen by a specialist.

The family's experience is a common one for children with neurodiverse conditions.

Tyler, 12, Kaylee and Chase, 10, Warner have faced long delays in getting diagnoses for autism and ADHD. Picture by Elesa Kurtz

Australia's health and education systems are plagued by delays, unnecessary roadblocks, misconceptions and under-resourcing. The system in Canberra and the surrounding region is no exception.

This "wait to fail" approach is harming neurodivergent children and preventing them from reaching their potential. Our series on neurodivergence will examine some of the issues families are facing and put forward some achievable reforms.

Diagnosis delays

More and more children and adults are being diagnosed with neurodiverse conditions.

Monash University senior lecturer in inclusion and disability Kate De Bruin said people now have better awareness of various conditions.

"It's far more likely that people are being given that diagnosis where once they would have been given a different diagnosis," she said.

"Kids who would once have been given a label of an intellectual disability are now being labelled as autistic, for example."

Conditions that fall under this umbrella include ADHD, autism spectrum disorder and specific learning disorders, such as dyslexia.

In the ACT, one in five students were recorded as having a disability in 2022. Of this group, more than half fit into the cognitive disability category (which includes learning disabilities), a third had social-emotional conditions and 2.8 per cent had a sensory disability.

More students with disabilities are enrolling in their local mainstream schools, meaning all teachers are having to cater for students with diverse learning needs.

Social Living Solutions founder Patricia Falcetta has clients who wait many months to see specialists for neurodiverse conditions. Picture by Elesa Kurtz

Patricia Falcetta has her own business supporting families with neurodiverse children in and around Canberra. She sees time and time again children waiting many months to be seen by psychologists and paediatricians.

Mrs Falcetta feels angry about the disparity between families who can afford private healthcare and those who cannot.

"In Canberra there's a shortage of specialists. But even when you do go to Sydney to get a diagnosis, there's still a wait list," she said.

"The later you get diagnosed, the worse it is. The early you get diagnosed, the better it is. We know that early intervention is key. So the earlier we can get in and start supporting the better."

Lack of support in schools

There is a misconception that a formal diagnosis is needed before schools can step in to support children.

At the moment, ACT public schools use a student centred appraisal of needs (SCAN) to determine what kinds of support a child should receive. This categorises students into different types of need: intellectual disability, language disorder, physical disability, hearing and vision impairments, autism spectrum disorder, mental health and chronic health.

A recent report from the ACT Audit Office found this process was distressing for families because it focuses on what students can't do. Even after completing the appraisals, schools are not told how much extra resourcing the child has received because the disability loading is not attached to individual students.

Many conditions fall through the cracks, including ADHD and dyslexia, and attract no additional funding at the school level. This is despite these students meeting the criteria for additional support under the Nationally Consistent Collection of Data on School Students with Disability (NCCD).

ACT Education Directorate acting executive group manager for service design and delivery Angela Spence said the disability education budget adds up to about $109 million.

"It's really important that the schools and teachers are required to make those adjustments regardless of a diagnosis," Ms Spence said.

The directorate released it's new disability inclusion strategy which committed developing a new needs-based funding model for students with disabilities.

The plan includes more training for teachers and the rollout of inclusion coaches in Tuggeranong schools.

Ms Spence said that teachers and schools were best-placed to decide what kinds of adjustments are made.

Ms De Bruin said practices in schools often reflected thinking from decades ago, rather than what the latest research shows.

Teachers aids, for instance, are often seen as the gold standard in providing support. However, research from the United Kingdom showed aids were often used poorly in the classroom and that the more time spent with an aid, the worse students performed.

"What tends to then happen is that the child with the most complex support requirements actually end up being supported by the person with the least qualification," Ms De Bruin said.

She said all students need high-quality, evidence-based instruction in the classroom, regardless of their abilities.

"One of the things that we know that every kid needs, doesn't matter what kind of disability that they have, everybody needs really, really high quality classroom instruction.

"But there's a quite a dated view that some kids learn differently or need some different kinds of instruction and there's actually no evidence to show that that's true."

Kaylee saw the difference in her son Tyler once he was accepted into a small support class in high school. But it came after he struggled through primary school.

She would like to see more training for teachers and early intervention in schools.

"Early testing, even with schools, for example. There's just no support at all without the diagnosis."

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