The cancer journey for paediatric patients and their families is always tough. For young patients who are neurodivergent (with or without an official diagnosis) this journey is even more challenging. This is even further complicated when considering the impacts of trauma from cancer treatment.

Pathological Demand Avoidance (PDA, or pervasive drive for autonomy) is a presentation in autistic children where they resist demands to an extreme level. Those working in a paediatric health setting need to be aware and recognise potential PDA profiles in patients and make accommodations accordingly to ensure the safety of patients, as well reducing challenging behaviours that may impact the ability of staff to provide care and treatment.

There is a balance between meeting the emotional needs of neurodivergent patients’ verses prioritising their medical treatment. Traditionally (and understandably) the latter has been prioritised, however there are small yet extremely impactful changes that can be made by staff that can help to make the treatment journey less painful.

The neurodiversity affirming movement is slowly gaining recognition however the medical system is slow to change. Families of neurodivergent PDA children are often judged and misunderstood. This is a horrific outcome for a family reckoning with a child going through cancer treatment.

This presentation will focus on one family who has a child with a PDA profile. As music therapists we are often privileged to see patients in a different light than the rest of their care team. Our skills in fostering creativity, encouraging autonomy and being able to meet children where they are at has placed us in a position where we can advocate for our patients to best support their wellbeing. Through this particular patient’s story, we hope to effectively communicate the importance of making small, effective accommodations for children with demand avoidance in the medical setting.