Submission 24
Introduction
I’m a mother a carer to a non verbal 4 year old autistic boy with level 3 autism I do welcome the Australian Government’s proposal to establish a dedicated organisation for autistic children thriving kids initiative but I have my worries This is a significant step towards recognizing the needs, strengths, and challenges of autistic people and their families. However, the way this organisation is designed and implemented will determine whether it becomes a source of genuine support or another layer of bureaucracy that misses the mark.
Why this needs to be done correctly
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Autistic voices must lead the way – Too often, decisions are made about autistic people without their meaningful input. This risks reinforcing stereotypes and overlooking the real needs of autistic children and families.
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Consistency across services – Currently, support for autistic children varies widely across states and regions. Families face long waiting lists, confusing systems, and service gaps. If this organisation is not carefully planned, it could replicate existing barriers instead of removing them.
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Long-term wellbeing – Poorly designed policies can have lifelong consequences for autistic children, affecting education, employment, health, and mental health outcomes. A well-designed organisation, however, has the potential to empower children and their families to thrive.
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Family burnout and stress – Families of autistic children often experience high levels of burnout due to constant advocacy, navigating complex systems, financial pressures, and lack of respite. If supports are fragmented or difficult to access, families become overwhelmed — and this has a direct impact on the wellbeing of both children and parents. Addressing family burnout must be a core part of the organisation’s design.
Steps to ensure this is done correctly
- Co-design with the autistic community
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Involve autistic children, autistic adults, parents, carers, and advocacy groups at every stage of development.
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Ensure lived experience is not just “consulted” but embedded in leadership and decision-making.
- Focus on strengths and inclusion, not just deficits
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Build programs that support autistic children’s strengths and unique ways of learning, rather than focusing solely on “fixing” challenges.
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Promote inclusion in education, healthcare, and community life.
- Accessibility and equity
- Ensure services are accessible across urban, rural, and remote areas.
- Provide culturally safe and inclusive support for Aboriginal and Torres Strait Islander families and families from culturally and linguistically diverse backgrounds.
- Reduce bureaucracy and waiting times
- Streamline referral pathways,Submission 24assessments, and supports.
- Avoid duplicating processes already handled by the NDIS, education, or health systems.
- Evidence-based practice and accountability
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Ground all programs in current evidence while remaining flexible to new research.
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Establish transparent measures of success that are reported publicly and reviewed regularly.
- Support for the whole family
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Recognise that supporting autistic children also means supporting parents, carers, and siblings.
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Provide accessible information, respite services, and financial support where needed.
Conclusion
This initiative has the potential to be transformative for autistic children and their families in Australia. However, it will only succeed if it is developed with authenticity, humility, and genuine collaboration with the autistic community. The government has an opportunity not only to provide services but to set a new standard for how policy is shaped — with autistic people, not just for them.