Pathological Demand Avoidance: A Neurological Condition with Fatal Risks—Stories from Those Who Live It

Pathological demand avoidance (PDA) is a condition that leaves individuals paralyzed by an overwhelming need to resist any form of instruction, request, or expectation. For those affected, tasks as simple as cleaning the oven or filing taxes become insurmountable challenges. Unlike occasional reluctance, PDA is an inborn drive to avoid demands, even when doing so harms their health or well-being. A friend of Sally Cat, one of the co-authors of a new book on PDA, died from pneumonia after refusing outpatient appointments due to her demand avoidance. This is not mere stubbornness; it is a neurological response that can lead to life-threatening consequences.

Sally Cat and Brook Madera, both in their 40s and 50s, have lived with PDA for decades. Despite achieving university-level education, neither has held a traditional career. Cat, from southwest England, and Madera, from Oregon, USA, have faced panic attacks and physical burnout in the workplace. Today, they focus on raising awareness of PDA through their online training business for parents and caregivers. Their work highlights the severity of the condition: PDA-ers may refuse to pick up a drink when thirsty or avoid social invitations entirely, even if they enjoy the event. This resistance is not about willfulness but an innate, almost reflexive, aversion to being told what to do.

PDA was first identified in the 1980s by British psychologist Elizabeth Newson, who studied autistic children at the University of Nottingham. However, the condition has only recently gained traction, partly due to social media. TikTok videos, Facebook groups, and online forums now provide resources and community support for those affected. Izzy Judd, wife of McFly drummer Harry, revealed in a podcast that her autistic child also has PDA. She described how asking the child to dress could trigger emotional distress, forcing her to avoid direct commands. Her experience was met with criticism, but it mirrors the struggles of Cat and Madera, who emphasize that PDA is not simply a form of willfulness but a distinct and severe condition.

The debate over whether PDA is a separate condition from autism remains unresolved. The DSM-5, the primary diagnostic manual for psychiatrists, does not recognize PDA as a standalone disorder. Instead, it is generally viewed as a symptom of autism. The NHS states that children on the autism spectrum with a PDA profile are described in their assessments, but not classified as a distinct condition. Professor Newson, who first defined PDA, argued it should be recognized separately, comparing it to describing a family by the name of one of its members. Cat and Madera agree, stating that PDA's unique traits—such as a love for flexibility, strong social interest, and anxiety—require different support than traditional autism.

Despite these claims, some researchers remain skeptical. The National Autistic Society notes that no strong evidence supports the distinctiveness of PDA's proposed traits. It also warns that promoting PDA-specific products could create a feedback loop where individuals cherry-pick behaviors to reinforce their belief in the condition. Professor Gina Rippon, a neurobiologist and author, argues that PDA falls within the autism spectrum, with no significant differences in behavioral profiles. She acknowledges the overlap in anxiety and sensory sensitivity but notes that brain imaging studies comparing PDA and autism have not yet been conducted.

Cat and Madera believe their PDA identities are more defining than their autism diagnoses. Cat found online autism communities unsupportive, as she wanted to learn social skills, a trait frowned upon in some autistic forums. Madera felt a part of herself was unnamed until she connected with PDA communities. Both cite anecdotal evidence suggesting PDA behaviors begin in the womb. Madera described her eldest child's birth as a struggle, requiring a C-section due to the child's refusal to emerge in the expected way. Others report babies who seem passive or relaxed, avoiding milestones when not on command.

Parenting strategies for PDA-ers emphasize minimizing demands. Instead of imperative language like 'Put your shoes on,' parents are advised to use declarative statements such as 'I'm getting ready to leave.' This approach gives the child space to comply without feeling forced. Professor Rippon notes that understanding autism has evolved beyond the 'Rain Man' stereotype, particularly for women who may mask their traits. She sees PDA-ers' interest in people as part of this broader spectrum, not a separate condition. However, she acknowledges ongoing research into autism's diversity, with potential changes in the DSM-6, possibly released in 2027 or 2028, that could redefine PDA's classification.

Cat and Madera's book, *The Insider Guide to PDA*, offers insights into living with the condition. Their work reflects a growing movement to recognize PDA as a distinct experience within neurodiversity. Whether PDA will gain formal recognition remains uncertain, but their advocacy continues to challenge assumptions about autism, demand avoidance, and the need for tailored support systems.