Helping Families Understand PDA

Pathological Demand Avoidance (PDA) is a behavior profile often recognized by families of individuals on the autism spectrum.  While this feature is often associated with autism, the true prevalence of extreme, or pathological, avoidance is unknown.  Children and adolescents who present with this profile seem to experience difficulties when presented with everyday tasks and experiences. But why?

While PDA is still being researched and explored, it appears to be driven by high levels of anxiety, with an underlying need for control to help manage the anxiety being a maintaining factor.  PDA may also be maintained by a pathological need for autonomy with an inability to communicate or identify that need. 

While PDA and Oppositional Defiant Disorder (ODD) may seem similar to the untrained eye, ODD is generally recognized as defiant, hostile, and angry behavior, whereas PDA is characterized by resistance to expectations, tasks, and, at times, routines.

PDA is currently not a recognized diagnosis in the DSM-5-TR or ICD-11 and cannot currently be given as a diagnosis by professionals.  While it is not a recognized diagnosis, we can still be compassionate towards the families we serve and families in the community who have a loved one with this behavior profile.  We can recognize their unique experiences and identify ways to support them.

Some of the common themes families with children with demand avoidance may experience include a general lack of understanding and acceptance by others, being blamed for the child’s misunderstood behavior, heightened levels of distress or strain on the family as they attempt to navigate and work through challenging behaviors, and a lack of tailored support for the demand avoidance behaviors.

If you know someone whose child may fit this profile, there are several ways you can show support. 

1.     Encourage them to explore recognized diagnoses if they do not already have one.  Based on the child’s profile, they may meet criteria for one of the many diagnoses within the DSM-5-TR.  By exploring and possibly receiving a diagnosis, access to various services and interventions may become available. 

2.     Validate their experience.  Parenting is rewarding but hard, and parenting through unique behavioral patterns makes it all the more challenging.

3.     Connect them with individuals who are trained in modalities that may help improve, work through, and reframe some of the behaviors they are experiencing.  Some interventions that may be helpful include PCIT and some types of behavioral therapies.  Traditional or conventional parenting techniques and strategies may not be effective with this profile.  Instead, a parenting approach that emphasizes flexibility, trust, and collaboration may be the more effective option.

4.     Underlying anxiety may also need to be addressed at the psychiatric level, given the notion that high anxiety may be one of the underlying causes of pathological demand avoidance.

While PDA is not a recognized diagnosis, we can recognize that families struggle and need support.  Many are doing the best they can, and sometimes the validation and support from those around them gives them that little glimmer of hope that they are indeed seen and their experiences are valid.

Kari A. Wold, MA

LMLP