Abstract

In this episode of the Portal Podcast, Professor Sarah Lonbay and Dr Lesley Deacon speak with writer and author Alice Running about the systemic issue of parent-carer blame in autism and SEND (Special Educational Needs and Disabilities) services. Drawing on her lived experience as an autistic mother of neurodivergent children, Alice explains how she has repeatedly encountered damaging narratives from professionals, ranging from assumptions about her parenting to misinterpretations of her children’s needs.

Alice discusses her research collaboration with parent advocate Danielle Jata-Hall, which surveyed over 1,000 parent carers across the UK, exposing a widespread culture of blame. She highlights how generic, non-individualised interventions, which are often based on neurotypical benchmarks, fail autistic and PDA (Pathological Demand Avoidance/Pervasive Drive for Autonomy) children, and how inappropriate support can create distress while parents are blamed for “non-compliance.”

The conversation explores the biases faced by lone parents and neurodivergent parents, the harmful conflation of disability provision and safeguarding, and the importance of autistic-informed practice, genuine listening, and professional curiosity. Alice also offers practical suggestions for change, including separating safeguarding from provision, adopting a cultural lens to assess autistic families, improving accountability, and increasing professional training.