What is pervasive refusal syndrome?

Pervasive refusal syndrome is a severe condition which is significantly different to anorexia nervosa, although some symptoms may seem similar.

The characteristics of persuasive refusal syndrome are:

  • Refusal of food and drink
  • Social withdrawal (this may mean complete silence)
  • Partial or complete lack of self-care
  • Partial or complete refusal to walk or mobilise in any way

Pervasive refusal syndrome is also known as pervasive arousal withdrawal syndrome (PAWS) and was first described by the psychiatrist Professor Bryan Lask who urged professionals to understand the sufferer’s silence as the only means of communication available to them, rather than the withdrawal of speech.

Understanding pervasive refusal syndrome

Unlike individuals with anorexia nervosa, sufferers of pervasive refusal syndrome are not concerned about their weight or weight loss, or body image. The symptoms of pervasive refusal syndrome (or pervasive arousal withdrawal syndrome, PAWS) can arise very suddenly. Symptoms may follow a virus, an episode of illness or the experience of pain (which may be difficult to pin-point). Establishing the cause of pervasive refusal syndrome is challenging.

It is important to rule out other possible biological and/or psychiatric illnesses which could be the cause of food, self-care and social withdrawal. Like other psychiatric disorders, there is no single cause of pervasive refusal syndrome; there will be a number of inter-related factors and these will be unique to each individual. Pervasive refusal syndrome is closely linked to the experience of trauma and the condition has been diagnosed in child refugees.

The condition is most commonly seen in children aged between eight and 15 and is more common in girls than boys. The affected individual is likely to show determined and angry resistance to attempts to encourage eating, drinking and social interaction.

Treatment of pervasive refusal syndrome

Hospital-based treatment and care is normally required for this very serious, life-threatening disorder. Because this is a rare condition which has been only recognised fairly recently (1991), there is not a great resource of evidence-based treatment. However, there are two widely described characteristics of successful treatment for pervasive refusal syndrome: using a carefully planned, multi-disciplinary approach and the acceptance that change will take time (if the pace for therapeutic change is too rapid, this will be counter-productive).

If the right treatment is in place, prognosis is good, but the process of treatment and recovery is likely to take one to two years.

The multi-disciplinary approach may encompass occupational therapists supporting the individual with activities, a dietitian to manage food intake, family therapists and specialists to harness the support and resource of the family and psychodynamic work with an individual therapist.

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