Ownership of the Mind: How Neurodiversity Is Taking Charge of Labels for Deeper Understanding, Part 4
Pathological Demand Avoidance (PDA) is yet another idea ahead of its time. As with the “labels” from the previous articles in this series (BP, RSD), Pathological Demand Avoidance is not a diagnosis and is not in the DSM-5-TR. Still, ask anyone who knows and loves neurodiverse individuals (and we hope this includes the self), and they will likely relate to the narrative that forms PDA into a useful container for understanding why some of us do what we do, or won’t do what others want us to do.
In preparing this article, I kept being reminded of an old short story by Herman Melville from 1853 called Bartleby the Scrivener. I had to read this during high school English and vaguely remember it was a bit boring to my taste. Still, the title character’s repeated statement of, “I would prefer not to,” echoes in my head to this day. I came across a critical article by Jane Desmarais about this short story which includes the following quote:
“Bartleby does not like change. ‘I would prefer not to make any change’ he says, and a little later states ‘I like to be stationary’. In fact, he prefers not to go very far at all, working, eating, sleeping all in the same place. He is unable to move out of his private world and make public aspects of himself.”
Perhaps Melville was more than a century advanced in recognizing a person who struggled with PDA. I find it interesting how even avoiding the demands of sustenance are included in the story.
While PDA is more often identified with Autism Spectrum Disorder (ASD), it does overlap with ADHD-related challenges and behaviors. First, I would like to give credit where credit is due with a brief history of PDA.
Pathological Demand Avoidance was first operationalized by British developmental psychologist Elizabeth Newson who passed away in 2014 after a successful career as a neurodiversity pioneer. While I am not deeply familiar with the intricacies of Newson’s work, what I have learned about her is inspiring.
Elizabeth and her husband created a more person-centered style for qualitative assessment of child behavior through their Child Development Research Unit at the University of Nottingham which they formed in 1958. Newson emphasized interacting and observing children through play and understood the importance of involving parents in the process. She was instrumental in creating family support communities for parents of children with autism. She had a son diagnosed with Asperger’s Syndrome (now considered part of the autism spectrum), so her passion was personal and professional. She went on to educate numerous future clinicians and has been described as a tireless and devoted teacher.
I need to point out one important note about PDA before getting into the details of what it is and why it matters: It is much more well known, assessed and treated in Europe than it is in North America. The concept did not come into my own awareness until sometime last year through research I do regularly for self-education to better understand and help my clients. Only recently have I heard one or two parents of neurodiverse children mention it, and none of my friends and colleagues seem to be familiar with it. I do not want to leave the mistaken impression that I am a leading authority on this topic, but for educational purposes, I feel it is important enough to bring more attention to it.
This reality does not reflect superiority of one continent’s understanding over the other. It reflects more the differences in how assessment, diagnosis, and treatments are indicated, researched and paid for by the respective healthcare systems of each continent. I am not a policy expert no matter how many opinions I have about the American healthcare system.
Still, there are interesting disparities between how ASD and ADHD are treated in Europe and North American (and beyond of course, I need to call out my geographically derived western-centric bias here). Applied Behavior Analysis (ABA) is considered the “gold standard” of therapies for ASD by some in the United States. I have much respect for compassionate ABA providers as well as the physical, occupational and speech-language therapists who have worked with many of my younger clients over the years. I will revisit this discussion later, but first...
What Is PDA Anyway?
Put most simply, pathological demand avoidance is “obsessive resistance to everyday demands and requests” according to Newson in her 2003 article titled, Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders (a PDF version of the article is available here).
For those most invested in this label, there is a strong emphasis on PDA being a part of the autism spectrum, perhaps even a core feature alongside “restricted and repetitive behaviors” and “intense and highly focused interests”, but there is also emphasis on PDA being spectrum adjacent or possibly a subcategory of ASD.
The reason for the distinction is likely the subtleties of describing and understanding the children whose behaviors are the opposite of subtle for those who care for them. Caring for a child with PDA can be overwhelming, no matter if is one is “all in” on the validity of the concept or simply wants to default to the opposite end of a continuum of understanding and inflexibly declare a child is a “spoiled brat” in need of more intensive punishment.
According to those who are true believers, some key characteristics of children who display PDA are (as paraphrased from Newson’s research):
- Shifting from passive to “actively-passive” in pre-verbal years, i.e. will noticeably resist actions within their physical ability, leading to some delayed early developmental milestones.
- As language develops, avoidance of demands intensify, but with very direct social strategies emerging (and again these are “everyday” interactions between caregiver and child like “Please bring me your cereal bowl to the sink” or “Watch what you are doing so you don’t spill the milk” or “Why do you keep throwing your toys across the room after I told you to stop?” or “Go ahead and finish the chicken nuggets you asked for”). A child might try to distract the person making the request, change the subject abruptly, feign illness, run away, hide, go limp, make noises to drown out others’ speech, or simply ignore the caregiver altogether repeatedly.
- Noticeably comfortable with initiating social interactions, but often with some manipulative intent and sometimes with unprovoked and impulsive disrespect for boundaries and with negative communication toward others, which can come across as bullying a sibling or other children.
- Perhaps a stronger than average interest in pretend play (if such an interest can be measured). This point is interesting as role-playing may take on a controlling aspect and is often a behavior some clinicians use as a differential in diagnosing ASD.
- Can display obsessive thoughts and behaviors, but usually are more related to others in the family or group. For example, insisting that a parent wait in the hall for them while they use the bathroom but not communicating any necessary fear-based reason.
- Higher than expected levels of physical risk-taking, clumsiness and accident proneness.
It is normal to dislike being told what to do by someone. This is the most obvious form of demand that human beings often seek to avoid. Usually though, the majority of us can communicate personal reasons for why we tend to avoid certain demands. Even if they are not as logical as others would like, we can at least explain ourselves as needed. One may use a trait model such as a spectrum of agreeableness to explain demand avoidance, for example.
The key word in PDA is pathological. This emphasizes how much distress is involved and how much one’s demand avoidance interferes with their daily functioning for meeting their own needs and respecting the needs of others across multiple situations we would consider routine experiences of existence.
According to UK based PDA Society’s website, it is important to consider the wide variety of routine demands that are placed on individuals. Some examples include: time, schedules, basic survival needs, relationship expectations, questions, making decisions, and even typically positive experiences like being complimented or doing things we actually want to do. Life is filled with demands every day. Avoiding demands becomes pathological when frequency and intensity lead to high levels of distress and consistent deficits in functioning where physical and intellectual ability are not significantly limited.
PDA is not willful defiance, but it is often treated as such. I have worked with oppositional and defiant individuals numerous times in my career, but it was my experience with a handful of “oppositional seeming” children who defied typical interventions that eventually led me to dig deeper into an emerging pattern I was seeing and discover the PDA paradigm.
What did I see?
The pattern I was seeing involved children with an ADHD diagnosis as well as a previous evaluation and rule-out of Autism Spectrum Disorder. It was challenging to build a quick therapeutic rapport with these clients (a process that is typically a professional strength as it is with any competent child therapist). Where I normally might see expected “testing of limits”, observed behaviors were better described as “an extreme need to be in control at all times.” What first might seem like “selective mutism” or a refusal to talk, only seemed to occur whenever I asked a question. No matter how innocuous the question, it was as if the child either couldn’t hear well or simply had a super power for ignoring others. When I just allowed silence to fill the space, the child would initiate conversation on their own terms. The eventual social interest in others and tendency toward pretend play is likely what led to evaluators ruling out ASD. Most of these children had an extensive history of medication interventions that include stimulants, antidepressants, antipsychotics, and supplements in varying combinations and a long list of medication failures. Thankfully their prescribers were sometimes willing to communicate with me and consider the possibility that a medication reset may be indicated since nothing had yet worked well enough to clearly be beneficial. The parents were present in our therapy sessions at a much higher frequency than other children, and these loving and attentive parents were exhausted yet hopeful we would find the right amount of the right kind of help. There was also much more than expected discussion of extremely rigid eating habits (this one is particularly concerning for parents).
Even though competitive games were of interest to them during play therapy, they had an above and beyond need to dominate at all moments and check for reassurance that they were in fact dominating. It is worth noting that I do not believe in letting school age children win games easily in any setting as it is disrespectful and they can tell when you are being patronizing. If they weren’t dominating me, they would abruptly change the rules or quit playing altogether. This behavior was so specific to these clients that I created a whole didactic discussion of the difference between “needing to dominate” and “having an indomitable attitude”. The powers of deflection when we did have decent conversations were incredible and confusing at times. I was rarely allowed to be in control of the conversation. Periodic aggression was often reported by parents and occasionally observed when siblings were present at the appointment.
Thankfully, I have developed my own super powers of maintaining authentic calm and effortful positive regard over the course of my career and was up for the challenge. Still, it was the discovery of the PDA model that finally helped me help these children and parents above and beyond what usually works very well.
What can be done to help?
This article is an introduction to PDA primarily, but I do want to share some basic ideas that I found helpful, and at the end of the article I will link to the best resource I have found to date. As always, seek professional help and never rely on a single article as a replacement for working with a knowledgeable therapist.
While the PDA model applies to adults as much as children, my direct experience has been a child-centered and parent support focus. I am just now starting to find others who have heard of PDA in my community and will continue to try to build a local network as more research emerges to be shared among the various disciplines who are most likely to work with those struggling with PDA. The allied health professionals who work with neurodiverse children (OT, PT, ABA, SLT) seem more likely to be a few steps ahead where I am a few steps behind, for example OT/ABA for expanding varied food interests.
Still, some general ideas that have helped include:
- Helping parents think like a scientist is important, as they need to approach the behaviors (or lack of) with an open mind toward understanding first and with a willingness to gently experiment and keep track of what works.
- Tweaking communication seems to help. Analyzing word choice and cloaking demands and questions in language that allows for the perception of being in control. For example, “You know, it would be great to have some help with getting laundry started, I wonder if you would be able to bring me the dirty clothes from your room.” I know it seems like a lot of words, and traditionalists may consider this an insult to the authority of parents, but there are multiple ways to state what you need without telling someone what to do or questioning their autonomy in the moment. Creative communication is important.
- Parents considering that “attitude” can be viewed more as an emotion than a behavior can help reduce the personalization that parents naturally feel when their kiddos grump and huff at Mom or Dad’s gentle requests. Does the thing we wanted to happen actually happen? If so, that may be enough in the moment.
- Remembering that PDA is not a rejection of relationship. All children need and want relationship and support as well as autonomy. The child isn’t mean or rude, they just feel like the world and its demands are mean and rude, and overwhelming to a point of triggering a fight/flight/freeze response. As adults we are always more responsible than a child for helping to make the world less mean and rude and overwhelming where possible.
- Differentiate where sensory challenges are leading the way. Since PDA aligns mostly with Autism and also ADHD, sensory related stress is likely to be a part of the big picture. Remind the self about our own sensory challenges. I can’t stand when green beans squeak on my teeth, and I learned while camping last weekend that I will never be able to sleep well all night in a hammock because I will inevitably feel an intense need to stretch my legs and arms without restriction. Remember how those things feel.
- Experiment a little with reverse psychology to tease out how intentional a behavior may be, but do this sparingly and phase out with older children. It may reveal the need for control in surprising ways.
- Remember that most neurodiverse individuals process verbal information differently. Give more time for response. This is important whether or not PDA is suspected. I can think of numerous times my ADHD brain had to wait for the other numerous thoughts to quiet down before I could respond to a question from a loved one. It is a strange experience, as if I am only hearing the echo of their voice sometimes a full minute or more after they actually spoke the words. It gets in there. It just needs some moments to marinate into meaning. This is more prominent where speech disorders may be also present. In the age of hypnotic technology, this is even more important. Enter their world first with questions about the things on the screen, if you must, to ensure that speech was heard enough to be processed.
- Patience, gentleness, kindness, and self-regulation lead the way. And remember to keep things playful. I have always loved the quote from George Bernard Shaw: “We don’t stop playing because we grow old; we grow old because we stop playing.”
- I find that cooperative games can subtly show that there are other ways to play that do not involve dominating others. The children I have worked with would reveal a very pleasant and engaging attitude when we were facing demands of the game together in solidarity.
- Keep learning, always, and particularly be open to the possibility that the seeming “illogic” of PDA may have a logically individualized intervention discovered through deeper understanding.
Where to learn
The PDA Society’s website is full of information and the best place to begin in my opinion. It is clear that their mission is heart-filled and driven by an intelligent approach. If you believe in their work, then spread the word where appropriate.
Start with this link: PDA Society’s Helpful Approaches and branch out from there. They have plenty of printable and shareable resources available.
Here is a link for cooperative board games, and the creators of the website have another link with more at the bottom of this one: Cooperative Board Games
If you would like to read previous articles in this series you can find them below. For Part 5, I plan to zoom back out and discuss some neurodiversity “labels” of my own creation inspired by shared experience. Thanks for reading!
I apologize in advance if my own understanding falls short where my personal inner experience is lacking on this topic. Feel free to add to the discussion for enhanced understanding.
