Pathological Demand Avoidance (PDA) is a subtype of Autism Spectrum Disorder (ASD), which is resistant to traditional behavioral treatments (environmental manipulation, shaping, reward/punishments, etc.) It was first diagnosed in the United Kingdom and at present, is not included in the DSM-V. Nevertheless,it is important that clinicians are able to recognize the symptoms of this ASD variant in order to best inform treatment recommendations. In addition to the traditional diagnostic criteria of ASD (restricted and repetitive behaviors and social communication challenges) the following characteristics have been identified as components of the PDA profile:
- Average to above average cognitive ability as measured by standardized measures
- Ability to communicate using vocal language
- Extreme avoidance of day to day activities that seems to fluctuate regularly
- Extreme desire for control in most situations
- Having a desire for socialization, but lacking skills to elevate relationships from a surface level
- Masking behavior that is often physically and emotionally exhausting
- Presence of restraint collapse (behavioral challenges, tantrum behavior)
- Increased comfort in socialization via social media apps or the internet which often masks underlying social skills deficits
- Extreme sensory sensitivities
For individuals with the PDA profile of ASD, demand avoidance is rooted in anxiety and sensory sensitivity. These individuals may seem oppositional; however, it is the extreme nature of their anxiety and need for control that is the largest contributor to daily behavioral challenges. These challenges are further exacerbated by the presence of ASD symptoms, including deficits in receptive, expressive, and pragmatic language, in addition to social/emotional challenges. Despite appearing to have age appropriate social skills, individuals with this profile often struggle with articulation of their feelings and emotions, which in turn impacts their ability to reflect and problem solve underlying anxiety and rigidity. Taken together, individuals with PDA are often misunderstood, as their behavior tends to be interpreted as symptoms of ADHD or ODD. Because of this, treatment as well as educational placement for these individuals, is commonly ineffective.
The gold standard course of treatment for ASD is Applied Behavior Analysis (ABA), which is prescribed between 10 and 40 hours per week depending on the severity of the symptom presentation. ABA is a therapy modality that uses the principles of behavior to understand and teach behavior. Common treatments utilized involve breaking down tasks and utilizing environmental contingencies to teach behavior. ABA is a highly evidence-based and effective therapy. Given that PDA is a subtype of ASD, it would seem intuitive that ABA would be an appropriate recommendation; however, this is another layer in the complexity of this diagnosis, as ABA is not always a good fit for the individual.
So what are the options if PDA is suspected?
Treatment for PDA is nuanced and highly individualized. As is the case with ASD, PDA also exists along a spectrum, with the associated symptoms having varied impact on day to day functioning of individuals. The first step is always a consultation with a trained professional to share concerns and achieve diagnostic clarity. A full neuropsychological evaluation is not always indicated, although it may be if no recent assessments have been conducted. Although PDA is not part of the DSM-V, there is training available in the UK that clinicians in the USA have completed. These clinicians are able to work with families to explore the diagnosis and treatment planning further.
If a diagnosis is confirmed, treatment planning will occur with a clinician trained in PDA. This clinician often becomes a “quarterback,” working alongside parents, caregivers and professionals to support ongoing treatment planning. Depending on the individual’s age and presenting symptoms, the following treatments may be indicated for the ongoing management of PDA:
- Parent training (modified to the needs of the individual and their family)
- Individual therapy (Cognitive Behavioral Therapy or Acceptance and Commitment Therapy)
- Social Skills Training
- Executive Function Skills Coaching
- Educational consultation
- Functional Behavior Assessment
- Modified Applied Behavior Analysis (ABA)
- Occupational Therapy
- Physical Therapy
- Speech Therapy
- Psychopharmacological intervention
The most critical component of treatment for PDA is responsiveness. Avoidance, which is a key feature of the diagnosis, tends to fluctuate regularly. The individual, as well as their support teams, need to be aware of triggers, how to recognize upticks in anxiety, and how to modify treatment approaches accordingly. Regular team meetings and check ins are critical to the ongoing provision of treatment.
The goal of treatment for PDA is not to “fix” or eliminate the symptoms of PDA. PDA, like ASD and other diagnoses is a form of neurodivergence. The goal is to identify an individual’s unique set of strengths and challenges, and partner with them to support autonomy and goal oriented behavior. This partnership can look different depending on the individual’s age and level of support needed; however, approaching treatment with empathy, respect, and anti-ableism practices are paramount.
I would put something in the bottom here about how I have completed the training out of the UK and am available for consultations.