From Penrith to Hearts Everywhere: John’s Red Nose Day Impact

October 4, 2025

From Penrith to Hearts Everywhere: John’s Red Nose Day Impact

On 28 August, our NDIS participant, John, proudly hosted a Red Nose Day stall at Penrith Westfields, raising an impressive $769.40 in support of life-saving research and support services for families affected by sudden infant death.


As John passionately puts it, this money is for “saving little lives.”


Although the stall was scheduled to run from 10am to 4pm, John kept it open until after 5.30pm, taking full advantage of late-night shopping to maximise donations and sales.


This marks the third year John has run a Red Nose Day stall, with previous events held in Richmond and Windsor. His dedication hasn’t gone unnoticed - Red Nose now contacts him in the lead-up to the event to confirm his interest. John also keeps himself informed by regularly checking the Red Nose website for volunteer updates.


John’s preparation is meticulous. He ensures he has plenty of time to:

  • Place orders for merchandise
  • Organise card payments via an app on his phone
  • Coordinate with the venue
  • Book nearby accommodation to arrive early
  • Prepare his outfit and signage
  • Recruit help from friends and family


This year, John’s brother assisted in the morning, as well as two close friends. Behaviour Support Practitioner Danielle Leek also attended the event to cheer John on and stayed to help pack up.


Danielle shared that John was a familiar face at the centre, warmly greeted by staff and friends. He was professional, polite, and incredibly well-organised—setting phone alarms for reminders, bringing all necessary equipment including a money tin, a wheeled cart, a secure bum bag for transporting funds, red balloons he personally blew up, and clearly marked price signs.


Beyond Red Nose Day, John also supports the Leukaemia Foundation through events like the World’s Greatest Shave and Light the Night - causes close to his heart after losing his mum to leukaemia in 2013.


When asked why he continues to fundraise, John responded with a big smile:

“To connect with people and raise money to save little lives, of course.”


John’s commitment, warmth, and community spirit are truly inspiring. We’re proud to support him and celebrate his efforts.


Pictured above: (L) John and Danielle at the Red Nose stand (R) John standing with his Red Nose Store.


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Common characteristics described in the PDA profile include: A strong need to avoid demands, sometimes using strategies like humour, negotiation, distraction, or retreat A style of communication that may appear socially confident at first but does not always match deeper social understanding Rapid changes in mood, often linked to pressure or anxiety A comfort with imaginative play or adopting roles, which can help manage stressful situations These behaviours are not acts of defiance. They are protective responses from a nervous system that experiences demands as a source of intense stress. Is PDA a Diagnosis PDA is not recognised as an independent diagnosis in the DSM or ICD. Many professionals view it as a profile within autism, while others see it as a pattern that can appear in a range of neurodivergent presentations. There is ongoing debate, and research is still developing. Despite this, PDA is increasingly recognised in multidisciplinary autism assessments, particularly in the United Kingdom. Families and practitioners often find the PDA framework useful because it offers a way to understand demand avoidance compassionately and practically. Why Understanding PDA Matters People with PDA are often described as oppositional or non compliant, when in reality their behaviour reflects: high anxiety sensitivity to expectations a need for predictability a strong drive for autonomy and control When misunderstood, young people and adults with PDA may experience unnecessary conflict, shame, or burnout. A more informed perspective encourages compassion and supportive strategies instead of pressure or discipline. Neuroaffirming Approaches to Supporting PDA Supporting individuals with PDA is most effective when the focus is on reducing pressure, building trust, and supporting autonomy. Reduce Demands Where Possible Small changes can make a big difference. Indirect language, gentle invitations, choices, humour, and collaborative problem solving reduce pressure and help the person stay regulated. Traditional reward systems or consequences often increase anxiety and are less effective. Increase Autonomy A sense of control helps reduce distress. Offering choices, negotiating tasks, and allowing flexibility helps build cooperation and reduces overwhelm. Support Emotional Safety PDA is closely linked to anxiety and uncertainty. Predictable routines, sensory supports, clear expectations, and a calm supportive presence can help reduce stress. Connection and co regulation often pave the way for engagement. Work With Strengths Creativity, quick thinking, focused interests, humour, and imaginative play are often strong tools for learning and communication. Using these strengths helps build confidence and makes participation feel safe. A Neurodiversity Affirming Perspective Some clinicians and advocates argue that the term PDA can be pathologising, because it suggests something is wrong with a person’s natural need for autonomy. Alternative terms like Persistent Drive for Autonomy reflect a more respectful understanding of how the individual experiences the world. This perspective views PDA as a difference rather than a problem and focuses on approaches that prioritise dignity, safety, and empowerment. Summary PDA is a meaningful way to understand how some autistic and neurodivergent individuals respond to demands. It is not about refusing for the sake of it. It is about managing anxiety, protecting autonomy, and navigating a world that often feels unpredictable or overwhelming. Awareness and compassionate understanding help families, educators, support workers, and clinicians create environments where individuals with PDA can feel heard, respected, and supported to thrive. References PDA Society. Identification and Assessment of a PDA Profile. Gerlach, J. (2024). Five Things to Know About Pathological Demand Avoidance. Psychology Today. Naseef, R., Shore, S. (2025). Reframing Pathological Demand Avoidance. Autism Spectrum News. Science Insights (2026). What Is a PDA Diagnosis. AuDHD Psychiatry UK (2026). What Is PDA Autism. PDA North America (2025). Understanding and Supporting PDA.
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