Inquiry into the Thriving Kids initiative
Submission to the House Standing Committee on Health, Aged Care and Disability
Date: Monday, September 22nd, 2025
Submission by: Eating Disorders Neurodiversity Australia (EDNA)
Website: www.edneuroaus.com
Email: edneuroaus@gmail.com
Executive Summary
Eating Disorders Neurodiversity Australia (EDNA) is Australia’s peak lived-experience, neurodivergent-led organisation at the intersection of eating disorders and neurodivergence, including autism. While we support the goal of Thriving Kids to expand early supports, we are deeply concerned it risks creating service gaps for autistic children with sensory-based feeding challenges and avoidant/restrictive food intake disorder (ARFID). ARFID is a serious eating disorder with consequences ranging from malnutrition and immune deficiency to permanent blindness, cardiac abnormalities, and death. As ARFID is excluded from Medicare’s Eating Disorder Plan (EDP), families currently rely on NDIS-funded supports. Removing these without fully resourced alternatives would cause catastrophic, preventable harm. We recommend: (1) guaranteed continuity of NDIS-funded care during transition, (2) explicit recognition and inclusion of ARFID in Medicare’s EDPs and Thriving Kids support systems, and (3) genuine co-design with autistic-led organisations.
Introduction
EDNA is the national peak organisation at the intersection of eating disorders and neurodivergence, including autism. Our Board is composed entirely of neurodivergent people (most being autistic) with lived experience of eating disorders, ensuring that our advocacy is genuinely lived experience-led.
In addition to lived experience expertise, our Board brings substantial professional and academic authority. Accredited dietitian Dr Maud Achard and PhD candidate Laurence Cobbaert are academic researchers specialising in neurodiversity-affirming eating disorder care. Ruth Minkov is a registered clinical neuropsychologist, and Elysia Thomas is a registered psychologist with clinical expertise in assessing and supporting neurodivergent people with eating disorders. This unique combination of lived, clinical, and research expertise provides EDNA with unparalleled legitimacy in voicing concerns and shaping evidence- and lived experience-informed recommendations.
We are concerned about the current plan to support autistic individuals through the Thriving Kids initiative. At present, there is a lack of clear information and transparency about the scope of what this program will deliver, how autistic people have been (and will be) involved in its design and implementation, and how meaningful supports will be tangibly provided.
Based on published evidence (Whitehouse et al., 2019; Whitehouse et al., 2021), proposed replacement programs for NDIS supports (e.g., Inklings) appear to centre on Applied Behaviour Analysis (ABA), a one-size-fits-all model shown to promote masking and cause serious harm in autistic people. Peer reviewed research demonstrates that autistic people exposed to ABA are significantly more likely to meet post-traumatic stress disorder (PTSD) criteria later in life (Kupferstein, 2018), and many report long-term harm (e.g., anxiety, burnout, low self-esteem, suicidal ideation), coercion, and unethical practices (Anderson, 2022; Sandoval-Norton & Shkedy, 2019; Shkedy, Shkedy, & Sandoval-Norton, 2021; South et al., 2021; Dawson & Fletcher-Watson, 2021).
We are also concerned that decisions related to Thriving Kids have been made without any consultation with or input from Australia’s autistic-led organisations, including Yellow Ladybugs, Reframing Autism, the Autistic and New Zealand Self-Advocacy Network, and I Can Network. These organisations have publicly expressed concern about these decisions and disappointment regarding their exclusion from the decision-making process. Such exclusion
perpetuates epistemic injustice by sidelining autistic voices and lived experience expertise, which is antithetical to the Government’s promise of “Nothing About Us Without Us.”.
Furthermore, we are deeply concerned about the implications of the proposed reforms for autistic children with sensory-based feeding and eating difficulties or challenges, including those with avoidant/restrictive food intake disorder (ARFID). Many autistic individuals require nutritional support due to eating and feeding challenges linked to sensory processing differences. ARFID is a serious and potentially life-threatening eating disorder, characterised by sensory-based eating and feeding difficulties, that is highly prevalent among autistic people. Yet, it remains poorly recognised in clinical practice and excluded from formal care pathways in Australia.
As autistic advocates, clinicians, and researchers, we bring a distinctive and authoritative perspective to this Inquiry. Drawing on lived experience, professional practice, and scholarly expertise, we raise these concerns and put forward recommendations.
1. ARFID and Autism
ARFID is characterised by persistent difficulty eating sufficient amounts or varieties of food, leading to significant weight loss, nutritional deficiencies, dependence on supplements or enteral feeding, and low psychosocial wellbeing. Unlike anorexia nervosa or bulimia nervosa, ARFID is not driven by concerns about weight or body shape but rather by sensory sensitivities, fear of aversive consequences related to eating (e.g., choking, vomiting), or low interest in food (Ramirez & Gunturu, 2024; Fonseca et al., 2024).
Emerging academic evidence suggests ARFID may have a higher prevalence rate than anorexia nervosa (Nicholls-Clow et al., 2024; Galmiche et al., 2019). Autistic children are disproportionately represented among those diagnosed with ARFID. Indeed, recent research evidence shows that up to 54.8% of children with ARFID are autistic while 21% of autistic children are deemed at risk of ARFID according to a genetic study (Cobbaert et al., 2024). This high overlap means that any policy reform impacting support systems for autistic children must explicitly consider ARFID.
2. Risks and Medical Consequences of ARFID
The serious medical, nutritional, psychosocial, and cognitive consequences of ARFID and sensory eating challenges are well-documented in the academic literature (James et al., 2024; Fonseca et al., 2024; Ramirez & Gunturu, 2024; Nadon et al., 2011; Cermak et al., 2010).
Children with ARFID and sensory eating challenges frequently experience malnutrition and nutritional deficiencies because their restricted diets fail to provide the range of vitamins, minerals, and macronutrients needed for healthy growth and development. These deficiencies are not simply matters of short-term concern but carry profound risks for children’s immediate health as well as long-term wellbeing, including throughout adulthood.
ARFID has a significant impact on cognitive functioning. Many children with ARFID report weakness, fatigue, low energy, and difficulty concentrating, all of which affect their ability to participate fully in education and social activities.
One concerning consequence of ARFID is its effect on bone health. Children with ARFID are at heightened risk of low bone mineral density, which increases their vulnerability to osteoporosis and repeated bone fractures later in life. These skeletal impacts are not always reversible, underscoring the importance of early and effective intervention. In addition, ARFID can cause electrolyte abnormalities and muscle damage such as rhabdomyolysis, conditions that can require emergency medical care and carry the risk of long-term complications.
Metabolic consequences are also common. Hypoglycaemia, or low blood sugar, can occur in children with ARFID due to inadequate energy intake, placing them at risk of acute medical crises such as hypoglycaemic coma. ARFID further places strain on the cardiovascular system. Children may experience hypotension, bradycardia, and cardiac arrhythmias, which can lead to cardiac arrest. The tragic case of Alfie Nicholls, an autistic UK schoolboy who died after his ARFID went unrecognised and untreated, illustrates in the most devastating terms the life-threatening risks associated with this condition (Birmingham Mail, 2024).
Beyond these acute risks, ARFID can compromise the body’s ability to fight infection. Immune system impairment caused by prolonged malnutrition leaves children more vulnerable to recurrent and severe illnesses. In parallel, ARFID has profound mental health consequences, with affected children experiencing heightened rates of depression and anxiety
as both direct sequelae of nutritional compromise and as secondary impacts of living with a chronic, poorly understood, and often under-treated condition.
Perhaps most starkly, ARFID can lead to irreversible outcomes such as permanent blindness. Severe and prolonged vitamin A deficiency, which can arise when children eat only a narrow range of foods, has been shown to cause irreversible optic nerve damage and complete loss of vision (Schimansky et al., 2024; Bourke et al., 2025).
Taken together, these medical, nutritional, and psychological consequences demonstrate that ARFID and sensory eating challenges are not benign or an extension of “fussy eating.” ARFID is a serious and complex condition that carries the potential for long-term harm and even death. Any policy framework that seeks to remove or reduce support for autistic children with ARFID risks exposing them to devastating, preventable outcomes.
3. Recommendations
First, continuity of care must be guaranteed. Nutritional and occupational supports currently funded under the NDIS for sensory-based eating difficulties are key, but not holistic, elements of ARFID care. These services must not be withdrawn simply because a child’s autism is deemed ‘mild.’ A person’s experience of ARFID or sensory eating challenges does not correlate with perceived autism ‘severity.’ Reducing access to these supports would expose autistic children to preventable harm, including life-threatening consequences.
Second, ARFID-specific screening and diagnostic tools must be incorporated into Medicare eligibility assessments for eating disorder care through the Eating Disorder Treatment and Management Plan (EDP). While ARFID is predominantly conceptualised in the context of childhood, academic evidence shows it is a chronic, lifelong disability that also affects adults (Ruiz Fischer & Starr, 2024; MacDonald et al., 2024). ARFID care must therefore extend beyond childhood and include autistic adults. At present, the exclusive reliance on the Eating Disorder Examination Questionnaire (EDE-Q) to determine EDP eligibility excludes people with ARFID, leaving them without access to rebated care. The EDE-Q was designed for anorexia nervosa and bulimia nervosa, not ARFID. Expanding assessment criteria to include validated screening tools such as the Nine Item ARFID Screen (NIAS; Zickgraf & Ellis,
- would prevent autistic children and adults with ARFID from being systematically excluded from essential care pathways.
Third, safeguards must be implemented to prevent gaps in support during the transition away from the NDIS. No autistic child currently receiving NDIS-funded assistance for sensory eating challenges should lose access before alternative, tailored ARFID care pathways are fully resourced, operational, and accessible, whether through Thriving Kids or Medicare. A clear commitment to “no-gap” protections is essential to maintain trust and to prevent catastrophic interruptions to care.
Finally, and most importantly, policy and decision-making processes that affect marginalised populations, including autistic people, gender diverse people, and First Nations communities, must be conducted through genuine co-design and participatory approaches, not tokenistic, after-the-fact consultation. Governments must not undertake major reforms that profoundly affect autistic people without engaging autistic-led organisations from the outset. Failing to do so risks repeating a long history of reforms that have sidelined, silenced, or harmed the very communities they were meant to support.
There are many credible and highly respected autistic-led organisations in Australia, such as Yellow Ladybugs, Reframing Autism, I CAN Network, the Australia and New Zealand Autistic Self-Advocacy Network, and our own organisation, EDNA, whose expertise must guide these reforms. Such organisations bring irreplaceable knowledge grounded in lived experience and should be steering, not merely responding to, national initiatives such as Thriving Kids. Embedding lived experience leadership at the heart of reform is the only way to ensure services are safe, effective, and truly responsive to the real-world needs of autistic individuals and their families.
Conclusion
ARFID is a severe eating disorder with a higher estimated prevalence than anorexia nervosa and disproportionately affects individuals. ARFID has serious consequences ranging from malnutrition to permanent organ damage and death. The exclusion of ARFID from current Medicare-funded eating disorder care plans means that NDIS supports for sensory eating challenges have been vital for the survival of many autistic people, children and adults
alike. Removing these supports without robust replacements under the Thriving Kids initiative or Medicare risks leaving vulnerable individuals without lifesaving care.
We urge the Committee to explicitly recognise ARFID in its deliberations and to implement safeguards ensuring that autistic children with ARFID receive the multidisciplinary and lifesaving support they require.
List of Abbreviations
ABA: Applied Behaviour Analysis
ARFID: Avoidant/Restrictive Food Intake Disorder
EDNA: Eating Disorders Neurodiversity Australia
EDP: Eating Disorder Treatment and Management Plan
NDIS: National Disability Insurance Scheme
NIAS: Nine Item Avoidant/Restrictive Food Intake Disorder Screen
PTSD: Post-Traumatic Stress Disorder
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