Submission to the Inquiry into the
Thriving Kids Initiative
Submitted by: Lion and Mouse
Date: 1 October 2025
Executive Summary
Lion and Mouse welcomes the opportunity to contribute to the Thriving Kids initiative. We advocate for a system that ensures no child with developmental delay or autism is left behind. Drawing on the lived experiences of a 42-year-old man diagnosed with Autism Level 3 in adulthood, and a 9-year-old boy, also with Autism Level 3, currently receiving insufficient support through the NDIS, we highlight the systemic risks of under identification, under-support, and misdiagnosis. These cases are supported by Australian research demonstrating the long-term consequences of missed diagnoses, the importance of early, neurodiversity-affirming intervention, and the dangers of overly conservative assessments.
Case Study 1: A Life Without Support
The adult, is a 42-year-old Australian who was diagnosed with Autism Spectrum Disorder Level 3 in September 2025. Despite having superior non-verbal reasoning abilities (Perceptual Reasoning Index = 123), the adult’s adaptive functioning is severely impaired. Their General Adaptive Composite score on the ABAS-3 was 65, placing them in the 1st percentile - meaning they performs as well as or better than only 1 in 100 adults thier age.
Their conceptual, social, and practical skills are all in the “Extremely Low” range. They struggle with communication, self-direction, social interaction, leisure activities, self-care, and community use. For example, when engaged in special interests or video games, they forget to eat, drink, or attend to personal hygiene. They avoid social interaction due to exhaustion and anxiety, and finds small talk and reciprocal conversation difficult. They have a lifelong preference for routines and predictability, and experiences distress when these are disrupted.
The adult also has pronounced sensory sensitivities. They avoid eye contact, dislikes certain clothing textures, and is a fussy eater who requires food to be separated and served in a specific manner. They have an aversion to crowded environments and personal touch, which can trigger negative reactions.
Despite these challenges, and tell tale indicators, they have never received formal support
until their recent diagnosis. They have experienced suicidal ideation, substance abuse, and unemployment. Their presentation meets all DSM-5-TR criteria for Autism Spectrum Disorder Level 3, requiring very substantial support.
This individual, diagnosed with Autism Spectrum Disorder Level 3 at age 42. They have lived a life of social isolation, suicidal ideation, substance abuse, unemployment, and lack of formal support. Their diagnosis came only after decades of struggling without recognition or support. This story is emblematic of what the Western Sydney University study calls the ‘untold histories’ of late-diagnosed autistic adults, who often experience emotional trauma, missed opportunities, and systemic neglect due to outdated diagnostic practices and lack of awareness in earlier decades (Pellicano et al., 2020).
Case Study 2: A Child at Risk of Being Left Behind The Child, is a 9-year-old boy diagnosed with Autism Spectrum Disorder Level 3, Attention Deficit Hyperactivity Disorder (ADHD), and speech apraxia. Their presentation is complex and multifaceted, with profound impairments across communication, emotional regulation, motor skills, and self-care. Their Vineland Adaptive Behaviour Scales scores place them below the 1st percentile in all domains - communication, daily living skills, socialisation, and motor skills - indicating that their functional capacity is significantly lower than that of their same-aged peers.
The child also exhibits clinically significant maladaptive behaviours, including internalising symptoms (e.g., anxiety, withdrawal, suicidal ideation) and externalising behaviours (e.g., aggression, running away, self-harm). They have spoken about wanting to harm themself and has physically harmed themself by biting, pinching, and banging their head. They have also run away from home and school, placing themself in dangerous situations, such as wandering into traffic.
Despite this, the NDIA has funded supports that fall far short of clinical recommendations:
Only 14 hours per week of support worker time, compared to the recommended 30 hours, which are essential for implementing therapy strategies and ensuring their safety and participation in daily life.
Reduced therapy levels, including occupational therapy and speech pathology, despite clear evidence of regression when therapy is in insufficient.
Inadequate funding for behavioural support, despite the presence of high-risk behaviours.
No funding for dietetics, which are needed to manage their sensory-based food aversions and nutritional safety due to speech apraxia.
Limited funding for assistive technology, despite recommendations for tools to support self-care, communication, and emotional regulation.
Their mother has had to resign from her office-based role to work from home and provide full-time care for the child and their siblings, both of whom also have neurodevelopmental conditions. This has placed immense financial and emotional strain on the family.
Without adequate support, the child is at risk of becoming another “untold histories” participant - missed, misunderstood, and unsupported. His current trajectory mirrors that of adults like Case Study 1, who were not identified or supported in childhood and now live with the consequences of systemic neglect. The childs case highlights the urgent need for early, intensive, and sustained appropriate intervention, and for NDIS planning to reflect the severity of functional impairment, not just diagnostic labels or age-based assumptions.
Systemic Risk: Misdiagnosis and Conservative Assessments
While the NDIS aims to provide reasonable and necessary supports, there is growing concern that government-appointed assessors - particularly those using standardised functional assessment tools in short, one-off sessions - may produce overly conservative conclusions that fail to capture the full extent of a participant’s needs. This can result in inappropriate plans, reduced funding, and long-term harm.
The Melbourne Disability Institute’s analysis of the NDIA’s proposed Independent Assessments (IA) highlights several critical flaws: functional assessment tools trialled by NDIA were found to be invalid or unreliable for the diversity of disabilities covered by the NDIS; assessments were conducted in single sessions by unfamiliar assessors, ignoring best practice multidisciplinary approaches; and there was no evidence that these assessments led to accurate or equitable funding outcomes.
The Administrative Review Tribunal (ART) and previously the AAT have noted that NDIA decisions based on narrow assessments often fail to reflect the participant’s lived experience. In several cases, tribunal members have overturned NDIA decisions where the assessor failed to consider maladaptive behaviours or sensory sensitivities, the participant’s adaptive functioning was significantly lower than their cognitive ability, and the NDIA relied on generic tools rather than condition-specific assessments.
Evidence from Australian Research
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Early Intervention Improves Outcomes A multisite cohort study across six Autism Specific Early Learning and Care Centres (ASELCCs) found that early intensive intervention (EII) leads to better outcomes in adaptive functioning, communication, and behaviour (Masi et al., 2020).
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Missed Diagnoses Have Lifelong Consequences Western Sydney University’s oral history study documents the emotional toll and systemic failures experienced by late-diagnosed autistic adults. Participants reported feelings of
difference and alienation throughout childhood, barriers to employment, relationships, and mental health, and a lack of formal services post-diagnosis (Pellicano et al., 2020).
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Adaptive Functioning Is a Better Indicator Than IQ A study from the University of Western Australia found that IQ is a poor predictor of functional ability in autism. Children without intellectual disability often have adaptive functioning scores far below their cognitive estimates, challenging the use of ‘high functioning’ labels (Alvares et al., 2020).
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Neurodiversity-Affirming Practice Is Essential Flinders University’s Delphi study defines neurodiversity-affirming psychology as inclusive, strengths-based, and person-centred. Key principles include providing safety to be one’s authentic autistic self, validating autistic experiences, and avoiding pressure to ‘camouflage’ or conform to neurotypical norms (Flower et al., 2023).
Recommendations
A. Early Identification and Intervention Fund universal screening tools in maternal health, early childhood education, and primary care. Train professionals to recognise non-stereotypical presentations of autism.
B. Support for Mild to Moderate and High-Functioning Presentations Use adaptive functioning as a key metric for support eligibility. Ensure children with high IQ but low daily functioning are not excluded.
C. Seamless Transitions Across Systems Create integrated pathways from early childhood to adulthood. Embed support coordinators in mainstream settings.
D. Workforce Development Invest in training for neurodiversity-affirming practice across disciplines. Support peer-led programs and lived experience inclusion.
E. Reform Assessment Practices Mandate multidisciplinary assessments for complex cases. Ensure assessors have lived experience training and cultural competence. Require assessments to consider adaptive functioning, sensory needs, and behavioural history. Allow participant-chosen clinicians to contribute to assessments. Maintain appeal rights and transparency in how assessments influence funding decisions.
Conclusion
The story of the adult, is a stark warning. Diagnosed with Autism Spectrum Disorder Level 3 at age 42, lived through decades of misunderstanding, isolation, and missed opportunities. Despite having high cognitive abilities, their adaptive functioning was profoundly impaired, and they received no formal support until adulthood. A life shaped by the absence of early intervention, the lack of recognition of their needs, and the systemic failure to provide appropriate accommodations. Their experience is not an anomaly-it is a reflection of what happens when children with complex neurodevelopmental profiles are overlooked or under-supported.
In contrast, the story of the child, is a call to action. At just nine years old, they have already demonstrated the same depth of need that the adult lived with for decades. Their Vineland scores place them below the 1st percentile in all domains, and they present with clinically significant maladaptive behaviours, including self-harm and running away. Despite clear clinical evidence and a comprehensive functional capacity assessment, the supports currently funded by the NDIA fall far short of what is required. Their mother has had to resign from her office job to care for him, placing immense financial and emotional strain on the family. Without adequate intervention, this child risks following the same path as the adult - one marked by regression, isolation, and preventable hardship.
These two stories, separated by generations, converge on a single truth: the system is still failing to identify and support children with complex autism profiles early enough and thoroughly enough. The Thriving Kids initiative must be more than a policy framework - it must be a commitment to ensuring that no child is left behind, regardless of how their autism presents or how “mild” their condition may appear. It must recognise that adaptive functioning, sensory sensitivities, and behavioural challenges are not peripheral - they are central to a child’s lived experience and must be reflected in the supports they receive.
We must learn from the past. We must listen to the voices of those who were missed, misunderstood, and unsupported. And we must act now - with urgency, compassion, and evidence-based policy - to prevent another generation from falling through the cracks. The cost of inaction is too great, and the opportunity to change lives is within reach.
Citations
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Pellicano et al. (2020) Documenting the untold histories of late-diagnosed autistic adults: a qualitative study protocol using oral history methodology. BMJ Open, 10(5), e037968. https://doi.org/10.1136/bmjopen-2020-037968
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Masi et al. (2020) Clinical outcomes and associated predictors of early intervention in autism spectrum disorder: a study protocol. BMJ Open. https://opus.lib.uts.edu.au/bitstream/10453/150571/2/Clinical%20outcomes%20 and%20associated%20predictors%20of%20early%20intervention%20in%20autis m%20spectrum%20disorder%20a%20study%20protocol.pdf
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Alvares et al. (2020) The misnomer of ‘high functioning autism’: Intelligence is an imprecise predictor of functional abilities at diagnosis. Autism, 24(1), 221–232. https://doi.org/10.1177/1362361319852831
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Flower et al. (2023)
Defining Neurodiversity Affirming Psychology Practice for Autistic Adults: A Delphi
Study Integrating Psychologist and Client Perspectives. Autism in Adulthood. https://doi.org/10.1089/aut.2024.0305
- Melbourne Disability Institute (2021) Independent Functional Assessment: An Analysis of the NDIA’s Proposed Approach to Independent Assessments. Submission to the Joint Standing Committee. https://disability.unimelb.edu.au/home/news-and-events/independent-functional assessment