NDIA Accountability Project

Submission 145 — National Eating Disorders Collaboration — Inquiry into the Thriving Kids initiative

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2 October 2025

Thriving Kids initiative inquiry: National Eating Disorders Collaboration (NEDC) submission to the House Standing Committee on Health, Aged Care and Disability

Thank you for the opportunity to provide input to the current Inquiry into the Thriving Kids initiative.

Please find below NEDC’s general comments in relation to Thriving Kids as it relates to our work in the eating disorder sector, as well as responses to selected Terms of Reference. NEDC would welcome the opportunity to provide further clarification or input as needed.

What is the relevance of eating disorders to Thriving Kids?

Eating disorders are a critical public health concern that must be considered in the design and implementation of the Thriving Kids initiative. They are highly prevalent, have among the highest mortality rates of any mental illness, and are increasingly being recognised in younger children (Deloitte Access Economics, 2024).

Evidence shows that:

  • Risk factors for eating disorders emerge very early in life, with signs of food anxiety and body image concerns documented in children as young as three (Spiel et al, 2012). Early childhood feeding and eating problems can progress into more entrenched illness and disability if left unsupported (Dumont et al, 2022). Prevention and intervention in these early years are vital to reduce prevalence and minimise harm and escalation.

  • Children with disability are at heightened risk for eating disorders due to a combination of biological, psychological, social, and systemic factors. These include feeding difficulties, sensory sensitivities, medication side effects, stigma, exclusion from physical and social activities, and higher exposure to weight-related comments and health surveillance (Cobbaert & Rose, 2023). As a result, children with disability are significantly more likely than their non-disabled peers to develop eating disorders either in childhood, during adolescence or in adulthood. In particular, there is a high rate of co-occurrence between eating disorders and neurodivergence. Estimated prevalence across eating disorder diagnosis and neurodevelopmental condition is summarised in the table below. Addressing risks early and bolstering protective factors as far as possible is essential for equity.

Table 1: Estimated prevalence of eating disorder diagnoses by neurodevelopmental condition

Neurodevelopmental condition – all ages Rate of Anorexia Nervosa Rate of Avoidant/Restrictive Food Intake Disorder Rate of Binge Eating Disorder Rate of Bulimia Nervosa
Autism 22-29% 11.4% Large-scale studies needed to confirm prevalence 1-7%
ADHD 2-4.3% Large-scale studies needed to confirm prevalence, however 16.9% of children with ARFID have ADHD 4.1% 5.7%
Intellectual disability There is emerging evidence of cooccurring intellectual disability and eating disorders, however large-scale studies are needed to clarify prevalence.
General population* 0.2% 0.1% 0.9% 0.5%
  • In the general population, 1.2% of people have an Other Specified Feeding and Eating Disorder (OSFED) and 1.5% have an Unspecified Feeding and Eating Disorder (UFED), leading to an combined prevalence of 4.5% across all eating disorders. OSFED and UFED have not been included in the table as no data is available on their prevalence among people with neurodevelopmental conditions.

Sources: Shah et al (2024); Inal-Kaleli et al (2024); Sadler et al (2025); Makin et al (2025), Bertelli et al (2024) ; Nazar et al (2016) ; Nyholmer et al (2025) ; Deloitte Access Economics (2024).

  • Of specific note, the estimated prevalence of Avoidant/Restrictive Food Intake Disorder (ARFID) in Autistic preschool-age children is 28% - close to one in three Autistic children (Nygren et al, 2021). In the same sample, a further 48% of Autistic children experienced other feeding difficulties. This is significant in the context of Thriving Kids given the ages and disabilities of the children involved. A substantial amount of work is needed to reframe views of and responses to “picky eating” in connection with Autism, due to in clear eating disorder risk and potential impact on nutrition and development.

The Thriving Kids initiative provides a timely opportunity to embed protective factors into universal, mainstream supports for children before risks escalate. By building in Eating Disorder Safe (ED Safe) approaches, Thriving Kids can ensure that prevention and harm minimisation are integrated into early childhood services, education settings, primary care, and family supports. This means creating environments that support positive relationships with food, body, mind, and health, and avoiding approaches that may inadvertently increase eating disorder risk for all children, including children with disability.

As new systems of care and support are developed, it is crucial that children with feeding or eating difficulties and those at risk of eating disorders do not fall through any gaps that may be created by implementation lags, particularly when the Thriving Kids initiative is so broad in terms of which mainstream services may become involved. Early identification, skilled support, and continuity of care are essential to minimise harm and ensure better outcomes for children and families. Currently, service system responses to ARFID and other feeding difficulties are particularly fragmented due to (i) lack of coverage for these conditions under Medicare, (ii) lack of clarity regarding scope of practice for providers of feeding therapy in relation to nutritional risk, and (iii) inconsistency in NDIS support.

Recommendations

To ensure the best possible alignment of the Thriving Kids initiative with best practice approaches to universal eating disorder prevention and harm minimisation, NEDC recommends:

  • Embedding the Eating Disorder Safe principles across all Thriving Kids activities, services and resources, including workforce development for all relevant sectors;
  • Consideration of options to ensure access to feeding and eating supports for all children who require these (including for disability-related reasons), such as under Medicare.

These recommendations align with the National Eating Disorders Strategy 2023-2033 (NEDC, 2023), which sets out the key components, standards and actions that are required to achieve an effective, equitable and coordinated system of care that meets the needs of people experiencing or at risk of eating disorders and their families/supports and communities, including people from underserved and higher risk groups.

Responses to selected Terms of Reference

Evidence-based approaches to identifying mild to moderate development delay and supporting families

Evidence-based approaches to support families in identifying mild to moderate developmental delay include validated parent-completed screening tools (Balasubramanian et al, 2024), educational campaigns on developmental milestones (Carr et al, 2021), and strong collaboration with healthcare providers during routine visits (Moser et al, 2023). These strategies, especially when culturally adapted, can improve early detection and intervention. Parent-completed tools may also be favoured in the practice context because they reduce time constraints for care providers to undertake their clinical duties (Vitrikas et al, 2017).

Australian healthcare providers typically use the PEDS, ASQ and Bayley Scales for developmental screening in infants and young children, with ASQ-TRAK as a validated option for First Nations populations. These tools are supported by state and territory guidelines, though uptake varies across settings and practitioners (Garg et al, 2018). Key barriers to the use of validated screening tools include

time constraints, tool awareness, tool specificity, unclear referral pathways and lack of culturally and linguistically appropriate options (Garg et al, 2018).

The effectiveness of PEDS, ASQ, Bayley Scales, and ASQ-TRAK in detecting autism, ADHD, and developmental delay varies by tool, condition, and population, with notable differences by age, culture, and gender:

  • All tools are less sensitive for children under 12-13 months, with accuracy improving in line with age of child (Steenis et al, 2015; Yue et al, 2019);
  • Children from culturally and racially marginalised or culturally and linguistically diverse communities, as well as children from low-income families and children with subtle presentations are more likely to be missed by these tools (Karimi et al, 2025; Balasubramanian, 2024);
  • Girls and children assigned female at birth are more likely to be missed or diagnosed late due to gender bias in both diagnostic criteria and practice (Estrin, 2020).

While precise rates of missed identification are unclear, evidence suggests that there is substantial under identification among girls and children identified female at birth, First Nations children, children from marginalised backgrounds, and children with less externalising or milder[1] presentations (May et al, 2020; Bailey & Arciuli, 2020; French et al, 2023). The effects of missed and delayed identification are:

  • Missed opportunities for early intervention (Kaiser et al, 2022);
  • Increased/prolonged family stress (Zwaigenbaum et al, 2015);
  • Poorer educational experiences and outcomes (Dimian et al, 2020);
  • Poorer mental health, including anxiety, depression, eating disorders and suicidality (Cobbaert & Rose, 2023);
  • Reduced quality of life through lower educational attainment, employment challenges and social isolation (Dimian et al, 2020; Zwaigenbaum, 2015).

Recommendations

It is clear that current approaches to identification support some but not all children and families, and that the children and families currently left behind carry an unfair burden. NEDC recommends:

  • Research investment into screening tools and approaches that may better support identification of those children who, along with their families and communities, are not well served by current tools and/or practices. Such research should be community-led and involve co-design with children, parents and communities.
  • Intersectionality be taken into account when designing any aspect of an approach to identification and support along the diagnostic journey.
  • Use of implementation science approaches to overcome known barriers to effective screening and identification in the existing practice context, and proactively identify and mitigate any anticipated barriers in any new practice contexts for screening and identification.

Evidence shows that early and ongoing access to neuroaffirming (neurodiversity-affirming) supports has positive effects for child and family wellbeing, educational outcomes and long-term mental health (Cobbaert & Rose, 2023). The National Eating Disorders Strategy 2023-33 (NEDC, 2023) reinforces the

[1] We have used the phrase “less externalising or milder” to reflect the range of different diagnostic groups being discussed. We are guided by members of the lived experience community who reject functional labels in relation to neurotypes such as Autism.

importance of neuroaffirming supports as a key preventive measure for the development of eating disorders and related concerns. As such, NEDC recommends:

  • Workforce development for all professionals involved in the diagnosis journey, from the first conversation with a family member and throughout the processes of formal screening and assessment, in neuroaffirming, trauma-informed and Eating Disorder Safe approaches to supporting children and families.

Effectiveness of current and previous programs and initiatives that identify and support children with mild to moderate support needs and their families.

A meta-analysis of community-based implementation of evidence-based early intervention programs for Autistic children found significant gaps between outcomes from programs delivered under research conditions and outcomes from programs delivered by workers in settings such as community services and childcare (Nahmias et al, 2019). This suggests that there is a ‘know-do gap’ in relation to evidence-based programs in the community. However, the meta-analysis also revealed a high degree of bias in the included studies towards the children who are already most likely to be identified and provided access to services, with 80% of participants across all studies being boys or assigned male at birth and 70% of participants being in the culturally dominant group (i.e. White). In addition, the included studies largely focused on intervention models based in behavioural approaches, which is not representative of the full range of evidence-based and evidence-informed approaches to support for Autistic children and their families.

There is growing recognition of the need for neuroaffirming approaches in early intervention for Autism and developmental differences. These models emphasise acceptance, autonomy, and quality of life, rather than aiming to “normalise” behaviour or reduce Autistic traits (Leadbitter et al, 2021; Dawson et al, 2022). The literature highlights that interventions focused on making Autistic children appear neurotypical can lead to maladaptive strategies such as masking and negative mental health outcomes, including but not limited to high rates and long duration of eating disorders (Cobbaert & Rose, 2023).

While behavioural approaches have traditionally received substantially more research attention than newer, neuroaffirming approaches, the vast majority of these studies have not measured or reported on adverse outcomes (Dawson et al, 2021; Pan et al, 2023). It is a concern that these approaches have been floated as a potential model for the Thriving Kids initiative without fuller examination of the potential risks and harms, particularly when children who are subject to intervention are generally unable to report on their experiences until much later in life (Anderson, 2022; Baiden et al, 2022).

Recommendations

As a mental health organisation informed by lived experience, clinical expertise and academic evidence, NEDC recommends:

  • Adoption of a harm minimisation approach in the development and implementation of all Thriving Kids activities, services and resources;
  • Systematic collection and reporting of both positive and adverse outcomes from all interventions, including long-term mental health and wellbeing impacts, to close the current evidence gaps;
  • Commitment to equity in program design and evaluation, ensuring research and service access reflects the diversity of the Australian population, including First Nations children, children from culturally and linguistically diverse backgrounds, girls and gender-diverse children, and children with co-occurring disability;
  • Investment in workforce development and training to build capacity for delivering neurodiversity-affirming approaches across early childhood, health and community settings;
  • Embedding of lived experience expertise (children, young people, parents, and Autistic adults) in the co-design and governance of Thriving Kids, ensuring that interventions are relevant, respectful and acceptable to those most affected;
  • Support for a broad evidence base, including further research into neuroaffirming models of early intervention, and evaluation of outcomes that matter to children and families (e.g. quality of life, autonomy, inclusion, and social and emotional wellbeing).

Transition through mainstream systems for all children with mild to moderate support needs

The successful implementation of Thriving Kids is ultimately a question of culture change. Thriving Kids must not only reshape individual services but also embed a broader shift in how society understands and supports child development. Services will need to carry this culture change, underpinned by specific workforce capabilities, while the wider community also adapts to value inclusive approaches.

The Eating Disorder Safe principles (NEDC, 2024) provide a potential model for achieving this type of systemic culture and practice change. They demonstrate how a consistent framework, embedded across diverse settings, can promote positive relationships with health, food, mind, and body. In the same way, Thriving Kids has the opportunity to embed a shared framework across education, health, and community services that supports children’s development, learning, and social and emotional wellbeing.

Recommendations

To support seamless transitions underpinned by wider culture change, while also avoiding any harms caused by children and families falling through the gaps, NEDC recommends:

  • Embedding a shared, neuroaffirming framework across all mainstream services (education, health, early childhood, community) to ensure consistency of approach and avoid siloed or fragmented support.
  • Building workforce capabilities in inclusive and neurodiversity-affirming practice.
  • Investing in cross-sector training and collaboration, ensuring professionals can communicate and work effectively across systems, rather than children and families having to navigate disconnected services.
  • Adopting a harm minimisation lens across Thriving Kids to ensure that interventions do not inadvertently undermine children’s long-term mental health or quality of life.
  • Embedding co-design and lived experience expertise in governance and implementation, including the voices of children, parents, and people with disability, to ensure that transitions reflect real-world needs.
  • Prioritising equity in all transition processes, so that First Nations children, children from culturally and linguistically diverse backgrounds, gender-diverse children, and those from socio-economically disadvantaged contexts are not left behind.
  • Establishing monitoring and accountability mechanisms that track not only service access but also child and family outcomes across mainstream systems, including measures of cultural safety, inclusion, and wellbeing.
  • Rectifying current service fragmentation and gaps for children with or at risk of feeding and eating difficulties to ensure early intervention and well-informed wraparound supports.

Closing remarks

Thank you for the opportunity to make this submission. Should you wish to discuss the contents or any other matters related to the interface between feeding, eating and disability and how these may be addressed and supported through the Thriving Kids initiative, please do not hesitate to contact us.

Hilary Smith

redacted

Louise Dougherty

redacted

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