Submission 95 — Dr Matthew Hale — Inquiry into the Thriving Kids initiative

Submission to the House Standing Committee on Health, Aged Care and Disability

Submitted by: Dr. Matt Hale, Paediatrician

Key Messages and Recommendations

• The “overdiagnosis” narrative is a political tactic, not a clinical reality. Policy must be based on the broad clinical consensus that rising diagnoses reflect better community and professional recognition.

• Clinical language is non-negotiable. The use of vague, non-clinical labels like ‘moderate autism’ is a dangerous precedent that undermines evidence-based practice and must be rejected.

• The principle of “Nothing About Us Without Us” must be central to all reforms; people with lived experience must co-design and oversee the system.

• An effective system requires a “No Wrong Door” model. To ensure equitable access, the “Thriving Kids” initiative must be built around local community hubs.

• Recommendation: Establish independent clinical and community oversight, including people with lived experience, to review all reforms before they are implemented.

• Recommendation: Mandate the use of established diagnostic standards (e.g., DSM-5) for all eligibility and support pathways.

Executive Summary

Children’s health and wellbeing are at a crossroads. As a paediatrician working directly with families, I see daily the consequences of fragmented systems and inconsistent policy. With an estimated 1 in 40 Australians now identified as autistic, the stakes of the Thriving Kids initiative are immense.

This initiative presents a critical opportunity to reset our approach—to ensure that every child, regardless of diagnosis or postcode, has the chance to flourish. The detailed clinical and ethical analysis underpinning this submission is provided in the attached Appendices.

This submission highlights four urgent priorities:

1. Protecting diagnostic integrity: Resisting political narratives that undermine clinical expertise.

2. Securing equitable access to services: Addressing the documented delays and costs that create profound inequity.

3. Embedding evidence and accountability: Requiring that reforms are guided by independent clinical expertise and child-centred outcomes.

4. Centring lived experience: Ensuring that autistic people, their families, and carers are at the centre of designing and overseeing any new system, in line with the disability rights principle of ‘Nothing About Us Without Us’.

By acting on these priorities, government can restore trust, strengthen systems, and deliver on the promise of thriving kids.

1. Introduction I am a Queensland-based Paediatrician and the author of Kids Health Decoded, a publication dedicated to providing evidence-based insights on child health and development.

I write this submission not only in my professional capacity but also as a father who has personally navigated the diagnostic and NDIS pathways While I request the specifics of my family’s journe ence is critically relevant to this inquiry. Despite my professional understanding of the system from a clinical perspective, I found the process

a profound understanding of the barriers e system must be fundamentally redesigned to be simpler and more compassionate for parents who do not have the advantage of a medical background. The following analysis and recommendations are therefore informed by both professional expertise and the lived reality of a parent and advocate.

2. Background and Context: Better Recognition, Not “Overdiagnosis”

The narrative of “overdiagnosis” of autism is not a clinical observation but a political strategy. The clinical reality is that the rise in diagnosed prevalence is not an epidemic but reflects a public health success in better recognition. The number of autistic Australians rose by 41.8% between 2018 and 2022..

Australian research has demonstrated that this increase is largely attributable to changes in diagnostic criteria over time, increased professional and public awareness, and crucially, better identification of individuals previously missed, including girls and women. This represents a long-overdue correction of historical under-diagnosis, not a new crisis. To dismiss this progress as “overdiagnosis” risks denying children the interventions that allow them to thrive.

At the same time, families face long wait times and administrative burdens that compound stress. The Thriving Kids initiative must address these systemic challenges, not be driven by flawed narratives.

3. Current Challenges

3.1 Diagnostic Integrity and Evidence-Based Pathways

The foundation of an effective support system is accurate, evidence-based identification. The use of non-clinical, medically inaccurate terms like ‘moderate autism’ has no basis in clinical practice, which uses the DSM-5 standard to define autism by the level of support required (Levels 1, 2, and 3). Using vague labels as a basis for eligibility creates a dangerous loophole and risks denying support to children with a clear clinical need.

3.2 Access, Equity, and System Integration

Families face a fragmented system that creates significant barriers. This is evidenced by national data showing one-third of families wait over two years for an autism diagnosis, with those in regional areas facing delays of 12-18 months. These delays are compounded by significant out-of-pocket costs, with many families reporting expenses of $5,000-$20,000 per year even with NDIS support, creating profound inequity.

4. Impact of Systemic Delays on Children and Families The consequences of these systemic delays are not abstract. Research confirms that early intervention before age 6 leads to significantly better developmental outcomes in language, social skills, and school readiness. Delaying diagnosis and support increases the risk of secondary mental health conditions, with over 75% of autistic children having at least one co-occurring mental health condition. These are not just statistics; they represent preventable, lifelong impacts on educational attainment and community participation.

5. Recommendations Given that individuals with an autism diagnosis represent the largest diagnostic group in the NDIS (around 40% of all participants) it is critical that these reforms are guided by the following evidence-based recommendations:

1.​ Independent Clinical and Community Oversight

○​ Establish a standing advisory panel—including paediatric, allied health, and developmental experts alongside autistic individuals and family/carer representatives—to review all proposed reforms to child health and disability services. This ensures that clinical expertise is integrated with lived experience, in line with the disability rights principle of ‘Nothing About Us Without Us’.

2.​ Diagnostic Integrity Safeguards

○​ Reject policy framings that dismiss legitimate diagnoses as “overdiagnosis” and mandate that all policy be based on data and advice from independent clinical bodies like the Royal Australasian College of Physicians (RACP). ○​ Require that eligibility criteria be based exclusively on established clinical standards (e.g., DSM-5), not on non-clinical labels.

3.​ Equitable Access to Services ○​ Invest in a “No Wrong Door” community hub model to act as the front door for the Thriving Kids initiative, ensuring it is co-designed with local communities. ○​ Expand outreach and funding for culturally safe services for Aboriginal and Torres Strait Islander children and families from CALD backgrounds.

4.​ Evidence-Based Reform

○​ Mandate independent peer review of all NDIS and child health reform proposals before implementation. ○​ Require transparent publication of evaluation metrics, including child wellbeing outcomes, not just fiscal savings.

6. Mapping to Terms of Reference Recommendation Relevant ToR Alignment

   Independent Clinical and Best practice and expert Ensures reforms are guided

   Community Oversight advice by both clinical expertise

and the lived experience of people with disability.

Diagnostic Integrity           Diagnostic pathways and      Protects against political

Safeguards                   equity                      misuse of diagnostic data

and non-clinical labels.

Equitable Access to            Barriers to access,           Addresses geographic,

Services                    disadvantaged groups,         cultural, and systemic

seamless transition inequities via a “No Wrong Door” model.

Evidence-Based Reform       Evaluation and            Embeds independent

accountability review and transparent, child-centred outcomes.

7. Conclusion As a paediatrician, I see the daily cost of policy gaps. As a citizen and father, I believe we can do better. By embedding clinical expertise, equity, and accountability into the Thriving Kids initiative, we can ensure that every child in Australia has the opportunity not just to survive, but to thrive.

Sincerely, ​

Dr. Matt Hale Paediatrician

8. References ●​ Aspect (Autism Spectrum Australia). (2025). Facts and Figures about Autism. ○​ Estimates 1 in 40 Australians are autistic; notes therapy costs of $5,000–$20,000 per year even with NDIS support. ●​ Australian Bureau of Statistics (ABS). (2024). Autism in Australia, 2022. ○​ Reports 290,900 autistic Australians (1.1% of the population), a 41.8% increase since 2018. ●​ Australian Government Department of Health and Aged Care. (2025). National Autism Strategy 2025–2031. ○​ States that early identification and diagnosis lead to better long-term education, social, and economic outcomes. ●​ Australian Government Department of Health and Aged Care. (2025). National Roadmap to Improve the Health and Mental Health of Autistic People 2025–2035. ○​ Officially identifies systemic fragmentation, inequities, and longer wait times in regional and remote areas.

●​ Australian Medical Association (AMA) South Australia. (2025). Early Autism

Intervention Essential to Give Children the Best Start in Life. ○​ Notes that while autism can be reliably identified by age 2, the average age of diagnosis in Australia remains much later (5–14 years). ●​ Autism Awareness Australia (AAA). (2025). National Survey on Autism Diagnosis. ○​ Found that 32% of families wait more than two years for a diagnosis and that one in four families delay seeking diagnosis due to affordability. ●​ Careable. (2025). Autism, Diagnosis, and the NDIS: What the Evidence Really Shows. ○​ Confirms that autism is the largest diagnostic group within the NDIS, representing approximately 40% of all participants. ●​ Hale, M. (2025). BREAKING: A First Look Inside the Government’s NDIS Reform Plans. Kids Health Decoded by Dr Matt. ○​ Provides strategic intelligence on the reforms, including the official “Thriving Kids” initiative name and the new Minister. ○​ https://drmattpaed.substack.com/p/breaking-a-first-look-inside-the?r=4tv7i p ●​ Hale, M. (2025). The Autism ‘Overdiagnosis’ Ghost: A Political Tactic to Fail Our Children. Kids Health Decoded by Dr Matt. ○​ Deconstructs the “overdiagnosis” narrative as a political tactic and refutes it with evidence of better clinical recognition. ○​ https://drmattpaed.substack.com/p/the-autism-overdiagnosis-ghost-a?r=4t v7ip ●​ Hale, M. (2025). NDIS is Changing - I’m Extremely Concerned for our Kids. Kids Health Decoded by Dr Matt. ○​ Details the initial concerns about the NDIS reforms, including the use of non-clinical terms like ‘moderate autism’.

○ https://drmattpaed.substack.com/p/ndis-is-changing-im-extremely-concern ed?r=4tv7ip

• May, T., & Dissanayake, C. (2018). Explaining the increase in autism spectrum disorder prevalence: a review of Australian and international trends. Journal of Paediatrics and Child Health, 54(9), 920-927. ○​ Provides a peer-reviewed, academic analysis attributing the rise in ASD prevalence to better recognition and diagnostic practices, not a “true epidemic”.

• Medianet. (2025). New Survey: Autism Diagnosis Delays Skyrocket – Peak Body Calls for Action. ○​ Confirms the AAA survey results and notes the long-term disadvantages of delayed diagnosis, including unemployment.

• National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Act 2024. Federal Register of Legislation. ○​ The official legislation that has passed into law, enabling the current NDIS reforms.

• NDIS Review. (2023). Working together to deliver the NDIS. Australian Government. ○​ The foundational report from the Independent NDIS Review panel, which forms the basis of the government’s reforms.

• Royal Australian College of General Practitioners (RACGP). (2025). First ever National Autism Strategy launched. newsGP. ○​ Summarises the National Autism Strategy and reinforces the critical importance of early diagnosis.

• Source Kids. (2025). Autism diagnosis delays surge as families face long waits and rising costs. ○​ Reports on the AAA survey findings, highlighting the significant financial and systemic barriers families face.

• United Nations. (2006). Convention on the Rights of Persons with Disabilities (CRPD). ○​ Provides the international human rights foundation for the disability rights

principle “Nothing About Us Without Us.”

9. Appendices The following articles are attached to provide the full context, detailed analysis, and evidence base for the arguments and recommendations made in this submission.

• Appendix A: The Autism ‘Overdiagnosis’ Ghost: A Political Tactic to Fail Our Children
• Appendix B: NDIS is Changing - I’m Extremely Concerned for our Kids
• Appendix C: BREAKING: A First Look Inside the Government’s NDIS Reform Plans