Thriving Kids Program – Inquiry Submission
Respondent: Alana Beeson
Date: 16 September 2025Executive Summary
Our family faces extraordinary challenges caring for two children with a PathologicalDemand Avoidance (PDA) profile of autism - the neuroaffirming term for which is PersistentDrive for Autonomy profile. mask extensively outside the home butexperience intense post-masking dysregulation at home, including physical and verbalaggression. This results in profound functional impairment, frequent inability or refusal toleave the house or attend school, and a constant need for adult supervision.The withdrawal of sensory aide funding from the NDIS has forced us to spend more than$10,000 of our own savings on sensory and regulatory tools. Despite this, our children’sneeds are often invisible in mainstream settings but devastating in private. As their primarycarer and chosen “safe person,” I am at high risk of carer burnout, depression, and anxiety.We● are asking Thriving Kids to: Recognise masking, post-masking dysregulation, and school refusal as indicators of high● need.● Provide specialist staff trained in PDA and trauma-informed, low-demand practice.● Reinstate or dedicate funding for sensory aids.● Support parental mental health and provide emergency respite and crisis planning.● Publicly educate to reduce stigma around technology use and invisible disabilities. Advocate for broader policies that financially support and value primary caregivers.Without intensive, trauma-informed support, families like ours risk collapse. We believeThriving Kids can be a catalyst for system-wide change by explicitly addressing these needsand the wider cultural factors that affect children’s mental health.Introduction
I am the parent of two children with a PDA profile of autism. While they may appearoutwardly regulated at school or in public, at home they experience severe emotional andbehavioural dysregulation, including aggression and panic-driven avoidance of everydaydemands. This “masking–collapse” pattern places them and our family at a high andcomplex level of need that is not reflected in outward appearances.
Evidence and Context
Research consistently shows that autistic children who mask experience elevated stress andtrauma responses. PDA profiles are linked to extreme anxiety, avoidance, and difficulty withself-regulation. Polyvagal theory explains how prolonged masking depletes nervous systemresources and triggers fight, flight, or shutdown behaviours once the child feels safe athome.Despite decades of early childhood and school-based programs, children like mine remainlargely invisible to systems built on short observations and demand-based models. Thismismatch leaves families unsupported even as behaviours escalate privately.Impact on Daily Life Leaving the House: Our children’s extreme anxiety and dysregulation mean they cannotreliably leave home, attend school, or participate in community activities. At times theyrefuse to leave altogether; at other times their aggression makes outings unsafe.Social Isolation: This unpredictability has forced us into isolation, missing key social,educational, and developmental opportunities.Parent Workforce Impact: Managing their needs has made maintaining regular employmentnearly impossible. I have had to resign from my job to prioritise their care, despite oncebeing a full-time professional.Safety & Supervision: Both children require constant adult presence even for routinetransitions or outings.A typical anecdote: On mornings when I attempt to take my to school, she maybecome physically aggressive, then collapse in tears. Even when successful, she holdsherself together all day only to “unravel” the moment she steps back into the car,overwhelmed by sensory and social demands.Financial Burden The reduction of NDIS support for sensory aides has had a devastating financial impact. Wehave spent over $10,000 of our own savings on sensory and regulatory tools. Many itemsare quickly outgrown or rejected, yet are essential to help regulate our children’s nervoussystems and keep them safe.I recognise our privilege in being able to purchase these items at all — many familiescannot. Yet even for us, the costs are unsustainable. It is deeply unjust that these vitalsupports are treated as optional extras rather than necessities.Parent Mental Health & Carer Burnout As● the primary carer and “safe person,” I carry an intense and unrelenting load: Burnout Risk: Constant co-regulation with little downtime.
● Career & Financial Strain: Reduced income and career progression due to unreliable● work attendance. Administrative Overload: Hours each week on therapy applications, funding requests,● and school meetings. Emotional Stress: Exposure to aggression, unpredictability, and public judgement● contributes to chronic anxiety and depression. Loss of Social Support: Fear of public meltdowns and exhaustion have eroded friendships and community ties.Another anecdote: When my anxiety escalates, cannot leave the house without mephysically present and needs to know where I am in the house at any given moment if I amnot by side. On those days, even showering or taking a phone call becomes impossible,reinforcing the sense of isolation.Broader Cultural Context
Modern life places extraordinary stress on adults even before they conceive children. Whileit is vital that women have the opportunity to achieve professional success, our children arewired to crave connection with their primary caregivers. To maintain financial comfort, weare placing children into childcare at younger ages and for longer hours than ever before.This is not an argument against female achievement but a recognition that our systems havenot adapted to support both economic participation and children’s developmental needs.Without greater financial support for mothers and primary caregivers who wish to nurturetheir children at home, we risk perpetuating cycles of stress and dysregulation in futuregenerations.Proposed Solutions Enhanced Financial Support for Primary Caregivers: Introduce or expand allowancesenabling one parent to remain home without significant financial penalty. (For context, Ireceive $159.30 per fortnight in carer’s allowance — insufficient even to cover my safefoods.)Flexible & Hybrid Work Policies: Normalise part-time or flexible arrangements for parentsof high-needs children, with incentives for employers.Cultural Recognition of Care Work: Campaigns and education initiatives recognising theunpaid work of mothers and caregivers as foundational to building resilient future citizens.Early Parenting & Attachment Programs: Fund programs promoting early attachment andreducing stigma around prioritising parental presence.Integrated Family Support Models: Develop policies where health, education, and socialservices work holistically from conception through early childhood.
Requested Supports
● Specialist staff trained in PDA profiles and trauma-informed, low-demand practice. (Include all personnel who come into contact with kids within a school setting to be● aware of how to get the best out of kids who experience PDA).● Case coordination across school, allied health, and home. Dedicated Learning Support Assistant for 1:1 or small group support in mainstream school environments, or as a minimum smaller student capacity schools (eg. Limit intake to 200 students. For context, we would move to a more rural town to accommodate this, however my husband’s work means he needs to remain reasonably close to an international airport due to the amount of travel he is required to undertake● in his role). Family support programs addressing safety, co-regulation, mental health impacts, and carer burnout prevention, including funding for home-based fitness equipment or● online exercise programs.● Emergency respite and crisis planning resources.● Public education to reduce stigma around technology use and invisible disabilities. Reinstatement or dedicated funding for sensory aids essential to regulation and safety.Conclusion
My children’s masking, extreme anxiety, and post-masking dysregulation have a cascadingimpact on their functional capacity, our family’s ability to participate in community life, andmy own mental health. The withdrawal of sensory aid funding has forced us intounsustainable personal spending. Without high-level, trauma-informed support, bothchildren risk worsening outcomes and our family risks collapse under chronic stress andisolation.I●respectfully request that the Thriving Kids program: Treat children with Persistent Drive for Autonomy profiles of autism under the High● Needs Stream. Explicitly address masking, school refusal, technology as regulation, carer burnout, mainstream school environment, sensory aide funding, and parental mental health toll● as core policy elements. Recognise and address the broader cultural forces that exacerbate stress for children and caregivers alike.By prioritising these issues, Thriving Kids can set a benchmark for trauma-informed, family-centred support that responds to the realities of life for children with PDA and theirfamilies.