Pathological Demand Avoidance

When you have worked in the field of autism as long as I have, you get in the habit of dismissing new developments as new theories. “Cures” pop up all the time. The majority are untrue. That was the case when I first heard of PDA years ago. Unfortunately, I did not pay attention. A few years ago, a parent sent me article after article about PDA until I finally paid attention, and, boy, did it get my attention. I know these kids. You may as well. They are a subgroup of autistic, often twice-exceptional, children, teens, and adults who have an anxiety-based need for control and resist the demands of everyday life. Elizabeth Newson, an English developmental psychologist, named this profile of autism Pathological Demand Avoidance in 1983. These days, to get away from pathologizing neurodiversity, some people have rebranded PDA as Persistent Drive for Autonomy. However it’s called, anyone who cares about neurodiversity, education, psychology, behavior, healthcare, and humans in general needs to understand PDA. These individuals are often very verbal, have good eye contact, are imaginative, and are socially motivated, characteristics that often prevents them from having an autism diagnosis. In fact, many parents of PDA children have been told firmly that their child is not autistic, only very intelligent, and their problems come from parenting issues. Confused parents are told that they need to be stricter, have firmer boundaries, and use rewards and consequences. But, after parents have created their hundredth sticker chart to get their child to brush their teeth or go to school, insisted on non-negotiable bedtimes, taken away cell phones, and done everything short of martial law, these things not only don’t work but make things worse. [perfectpullquote align=”left” bordertop=”false” cite=”” link=”” color=”” class=”” size=””]If a person stays away from an environment that is bad for them, it is a smart choice.[/perfectpullquote] People with PDA struggle with demands and expectations. Everyday household chores, school assignments, and hygiene related tasks become problematic. Just answering a basic greeting of “Hi, how are you?” can also be challenging. One of the trickiest parts is that these children can’t often do things that they enjoy or want to do because they are flooded with anxiety. This is especially true when the activity is suggested by others or others make a “big deal” of it. Praise can raise anxiety for this population and cause meltdowns, that are better viewed as panic attacks. They may mask their behavior or their anxiety in school or other places in an attempt to fit in and go unnoticed, but this takes a great toll on themselves and their families. It is imperative for those around these children to understand that it is a matter of “can’t” not “won’t.”

       Common Characteristics of PDA:

• • obsessively resisting requests
  • appearing empathic but lacking depth of understanding
  • excessive mood swings
  • comfortable pretending (or lying)
  • language delay
  • excessive focus on people

It is understood that 70% of children and teens who fit the PDA profile do not attend school regularly. That is an astounding figure. One “PDA-er” in London has remarked that we should stop using the term “school refusal.” If a person stays away from an environment that is bad for them, it is a smart choice. We need to look at our school system to include these bright kids who find the environment so anxiety-producing that they simply can’t make themselves attend. I have worked with fabulous parents who have been charged with child neglect because they could not force their children to attend school. Forcing a child with PDA to do anything never works. As a social worker in Chicago area schools, I knew that traditional approaches to behavior were not going to help these children stay in their seats or complete their homework. In fact, traditional crisis intervention procedures only escalate the concerning behavior. The strategies and supports I recommended for these students turned out to be the same ones recommended for PDA. These interventions build on an understanding of the nervous system which quickly goes into fight, flight, or freeze modes. Children need an adult to co-regulate with them if they are to be expected to eventually manage their emotions.

  Strategies for Children with PDA: