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Pathological Demand Avoidance syndrome

Background

Pathological demand avoidance syndrome (PDA) was originally described as a pervasive developmental disorder related to, but different from, Autism and Asperger syndrome (see entry Autism Spectrum disorders, including Asperger syndrome). PDA was first described by Professor Elizabeth Newson, who drew attention to a group of children that often reminded people of children with autism but seemed to be different in other ways. The profile these children displayed didn't easily fall into diagnostic categories. Subsequent clinical accounts and research has led to PDA being increasingly considered as a condition within the autism spectrum.

Individuals with PDA share difficulties with other people on the autism spectrum in terms of social aspects of interaction and communication, together with some repetitive patterns of behaviour.  People with PDA often seem to have better social understanding than others on the spectrum, which means some of their difficulties may be less obvious at first.

Credits

Last updated March 2018 by Phil Christie, Consultant Child Psychologist, Autism Associates, UK.

Although great care has been taken in the compilation and preparation of all entries to ensure accuracy, we cannot accept responsibility for any errors or omissions. Any medical information provided is for education/information purposes and is not designed to replace medical advice by a qualified medical professional.

What are the symptoms?

Pathological Demand Avoidance (PDA) is now widely understood to be part of the autism spectrum.  Individuals who present with this particular diagnostic profile are driven to avoid everyday demands and expectations to an extreme extent.  This is rooted in an anxiety-based need to be in control.

The main features of PDA include:

  • resists and avoids the ordinary demands of life, which might include getting up, joining a family activity or other day to day suggestions.  This may be the case even when the person seems to want to do what has been suggested
  • using social strategies as part of the avoidance eg distracting, giving excuses
  • appearing sociable on the surface, but lacking depth in their understanding
  • excessive mood swings and impulsivity
  • being comfortable in role play and pretend, sometimes to an extreme extent
  • 'obsessive' behaviour that is often focussed on other people. 

What are the causes?

As with other conditions within the autism spectrum it is unlikely that there is a single cause, and it seems that the condition is part of a complex interplay between genetic, biological and environmental factors that account for changes in brain development.

How is it diagnosed?

Diagnosis is based on taking a careful developmental history (both past and present), direct observation of the child and information taken from other sources. This information is considered alongside the criteria and any other potential explanations. Work is taking place to extend questionnaires and schedules developed for research purposes into clinical tools.

How is it treated?

Key features to supporting someone with PDA:

It is often the case that some of the strategies that are typically found to be effective for people with autism (such as the use of routine, predictability and structure) need considerable adaptation. Individuals with PDA respond better to less direct and more negotiative approaches, which may include the following.

  • Choosing Priorities; which demands are necessary and which can be avoided for now?
  • Reduction of demands where possible: eg certain requests and expectations 
  • Being very flexible and creative
  • Giving choice and using negotiation
  • De-personalising of requests eg using written suggestions, attributing reasons for a request other factors such as health and safety
  • Using indirect language, humour and games to obscure demands
  • Use of indirect praise and affirmation

Inheritance patterns and prenatal diagnosis

Inheritance patterns
It seems likely that genetic factors are similar to those in autism, but refer to inheritance of an autism spectrum disorder rather than PDA specifically. Thus perhaps six per cent of children with PDA are known to have a sibling with either PDA or autism/Asperger. Preliminary research is currently underway.

Prenatal diagnosis
None at present.

Is there support?

PDA Society

Email: info@pdasociety.org.uk
www.pdasociety.org.uk

Formerly known as the PDA Contact Group, the PDA Society aims to offer support, advice and information to anyone involved with an individual with Pathological Demand Avoidance Syndrome, whether suspected or diagnosed. 

Group details last reviewed March 2018.

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