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What Is Pathological Demand Avoidance Syndrome (PDA)?: How We Can Help

What Is Pathological Demand Avoidance Syndrome (PDA)

© 2021 Think Social Publishing, Inc.


Have you ever worked with a child who suddenly or persistently refuses to do routine activities that you “know” (or you think you know) they can do? In fact, they seem to engage in all sorts of extreme behaviors or arguments to avoid even the simplest of requests. We certainly have. And in the course of the past couple of decades we have developed strategies that we hope you will find helpful when working with and teaching this group of social learners. But first, who are these students/clients and what do we need to know to be better teachers, parents, and therapists? Here’s a look at what we’ve learned in our own clinical practice, thoughts from the literature, and practical strategies we’ve found to be helpful.


What is PDA?

As treatment professionals, many of us have encountered individuals with profiles that simply fall in between or even defy diagnostic labels and categories used to organize and develop treatment plans. One such subgroup of social learners is described as those whose main characteristic is to obsessively avoid everyday demands and expectations to an extreme extent, often accompanied by high levels of anxiety (National Autistic Society, 2019), with a tendency to resort to what is interpreted as socially manipulative behavior (O’Nions et al., 2014). The term pathological demand avoidance syndrome (PDA) was introduced by Professor Elizabeth Newson in the 1980s to describe the characteristics of this group of individuals, yet because research in this area remains limited, there is no consensus on whether PDA is a separate clinical diagnosis, a syndrome, or whether it’s a subtype on the autism spectrum. The term is most familiar to those who live in the UK, but it’s now becoming more familiar worldwide—although there is still a lot of confusion about this cohort of social learners. As speech-language pathologists who have dedicated our careers to understanding the social mind, social emotional regulation, reading social cues, and understanding perspectives and intentions, we bring a unique perspective when working with social learners who may show resistant/self-protective or PDA-like characteristics.


Base treatment on social emotional learning needs, not diagnostic labels

For over two decades, we have specialized in running treatment groups that teach concepts related to the Social Thinking® Methodology which focuses on teaching social learners to better understand how the social world works to help them learn to then work (navigate to self-regulate) in the social world. In the late 1990s, after the emergence of Asperger’s syndrome as a diagnosis and armed with experience in working with individuals with classic autism, it became clear that we needed to have different types of information available to help individuals with relative challenges in social emotional learning who also had solid to strong language skills. We also realized this type of social learner was not easily defined by a singular diagnostic label but rather a range of characteristics within several diagnostic categories (Asperger’s syndrome, autism spectrum levels 1 and 2, ADHD, language learning challenges, auditory processing challenges, sensory integration, oppositional defiant disorder, twice exceptional, borderline personality disorder, narcissism, etc.). Given the complex combination of characteristics, strengths, challenges, and needs, we quickly realized that designing intervention groups based on diagnosis was not the way to go. Instead, we developed a way to consider the individual’s social emotional learning characteristics as our guidepost for designing strategies and lessons.


The Social Thinking–Social Communication Profile™

The Social Thinking Methodology focuses on helping individuals learn how to self-regulate and adapt broadly to contextually based, ever-changing information and perspectives in the social world. Encouraging metacognitive social emotional learning requires social learners to explore how to engage in a persistent process of evaluating how they are doing in a situation based on the perspectives of others in that situation (social self-awareness) and their own goals for how they want to be perceived and understood in that context. Throughout the methodology, we teach how the social world works, which includes how we all impact each other as we share space or actively communicate. We find that teaching students who have emerging or solid social self-awareness to process and respond to social information based on external reward systems paired to explicit behavioral expectations falls short in teaching social learners to interpret and problem solve dynamically, a core aspect of developing social competencies. To better understand individuals’ specific social emotional learning needs in order to create relevant treatment plans and group them with students with like social learning needs, we have developed what is now called the Social Thinking–Social Communication Profile™ (ST–SCP).


Matching unique social emotional learning needs to unique social learners

The ST–SCP is a valuable tool to help interventionists form treatment groups based on the spectrum of social cognition. The ST-SCP is not solely about the autism spectrum, although many autistic students/clients are included in our treatment groups. This tool also helps interventionists to notice patterns across different elements of social cognition, such as social attention, social interpretation (including but not limited to language), social self-awareness, and level of awkwardness related to the production of social responses. Different patterns of functioning between these characteristics led us to develop five different cohorts of social learners. In addition, we noticed these core patterns also connected to how social learners within specific cohorts were able to interpret and respond to socially based academic curricula (reading comprehension of novels, social studies, concepts in history, written expression) in similar manners. Those cohorts with greater struggles in social learning were unable to access the abstract parts of the curriculum, including math and science. We also noticed that specific cohorts distinguished themselves from others based on the type of anxiety they generally appeared to be experiencing. Cohorts defined as very literal interpreters of the social world tended to demonstrate more extreme anxiety when dealing with change and transition, whereas cohorts with stronger abstract thinking, but not strong social interpretation, tended to have more social self-awareness with a tendency toward elevated social anxiety. The one characteristic that largely defined the cohort in which social learners were placed related to their ability to understand others’ perspectives in contrast to their own. In other words, we defined our cohorts by their levels of social emotional competencies and learning characteristics starting with those with the greatest challenges to those with the least challenges. Important: Each and every social learner, regardless of their social learning cohort, has their own relative and unique strengths. Interventionists should always take the time to explore learning styles, both needs and strengths! The five cohorts include: Significantly Challenged Social Communicator, Challenged Social Communicator, Emerging Social Communicator, Weak Interactive Social Communicator (which also includes Socially Anxious Social Communicator), and Neurotypical Social Communicator. As you can see, we are all included in the continuum of social emotional competencies.


Theory to practical action

We began using the ST-SCP tool to form intervention groups based on these cohorts and found our treatment planning and group dynamics improved significantly. Our students/clients were exposed to a social learning curriculum that catered to and celebrated their abilities and addressed learning challenges through their own learning styles. This enabled us to provide them with targeted lessons to foster the development of their social competencies based on their own baseline—rather than just demanding the production of social behaviors or skills. Furthermore, we noted that social learners were also relating better because they were working with peers who were exhibiting similar strengths and challenges. Now, 20 years later, we have documented years of prognostic information about each of these cohorts. You can read about this in a free article Social Thinking–Social Communication Profile™ (Winner, Crooke, & Madrigal).


Aligning treatment to characteristics of the resistant (self-protective) social communicator

Interestingly, we started to notice a pattern of social learning characteristics or what seemed to be a unique subgroup emerging. Some students in our groups (about 5-8%) were demonstrating strong resistance to working collaboratively; they manifested behaviors such as being argumentative, class-clowning, refusing to let others speak, and/or shutting down in an emotionally aggressive manner. Their struggle to learn in a group had a negative impact on both their learning and others in the group as well. Parents and teachers reported a similar pattern at home and school and confirmed that traditional behavior plans, rewards, and punishments were ineffective in changing behaviors or improving learning. We also noticed that some of the strategies that were helpful to others in the group seemed to backfire with these students. For example, routines and predictability seemed to invoke a negative response and praise was ignored.


We described this subgroup as "Resistant Social Communicators," and subsequently resistant (self-protective) social communicators as our mental health colleagues talked with us about the impact of anxiety on this group of students’ ability to cope in the social world. In terms of the ST-SCP, this group tended to have characteristics similar to stronger “Emerging Social Communicators.” But, we also noticed that other social learners within this cohort were not “resistant.” Therefore, the resistant (self-protective) social communicators are considered to be their own unique subgroup and are very likely the same group of students who are labeled as “oppositional defiant disordered,” “emotionally disturbed,” and/or “behaviorally disordered.”


We began to share what we were learning with audiences around the world. Around 2013, members of the audience in London explained to us that the group we were describing as “resistant” sounded a lot like the category of pathological demand avoidance (PDA) being used to describe some characteristics of social learners with autism spectrum disorder (ASD). Upon further exploration, it appeared we were all describing the same or a very similar subgroup! For those interested in a broader overview of PDA, practical advice, and workable strategies for managing PDA positively on a day-to-day basis, we recommend Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals (Christie et al., 2015).


Knowing that group treatment was not a match for their learning styles, we decided to begin working with each on an individual basis. During these treatment sessions, we explored how to motivate them and eventually foster social emotional learning. We also tried to figure out how they were processing social information and why they seemed to be resistant to our strategies. It was during one of these sessions that Stephanie Madrigal, while working with a 10-year-old, was inspired to create the acclaimed Superflex®...A Superhero Social Thinking® Curriculum, and specifically the treatment characters “Superflex” and “Rock Brain”. Throughout years of treatment practice, we continue to learn more and more about this unique group of social learners, using the literature from mental health, social pragmatics, PDA, executive functioning, clinical experience, and client/family input to determine which strategies are most helpful to these social learners.


Five key points for identifying the social emotional learning needs of individuals who are resistant (self-protective) social communicators or have PDA traits:


  1. They can talk about their own perspective but struggle to understand anyone else’s perspective when it interferes with how they make sense of themselves in the social world. One adult client summarized it well. When pointed out to him that his father thinks he is “argumentative” and others notice it too, he responded by clarifying: “You are just like everyone else. Everyone thinks I am arguing, but I am not. I am stating my ideas and I will continue to state them until people believe them.”

  2. They experience cognitive inflexibility. While we may think they seek to manipulate us to get their way, upon working closely with them, you will see that they are trying to make sense of a situation that they see only one way and others see another way. Anxiety also plays a role in their reactive type responses because their brains cannot perceive the others’ perspectives. Try not to take their responses personally. These moments are more about their own protective mechanisms and not about you. Put on your own emotional armor, try to figure out why they do what they do from their perspective, and check your own reactions.

  3. They likely manifest challenges across a range of executive functions leading to significantly reduced executive functioning. While they can spontaneously tell you with strong language skills about their ideas, they become overwhelmed when asked to form their ideas in a metacognitively based task such as written expression (writing a paragraph or essay). They often refuse when pushed, but remember the combination of anxiety and lack of competencies is the root.

  4. They struggle to read subtle social cues, including emotions conveyed by others. For example, Rudy, a 16-year-old teen, needed to go into individual sessions due to his struggle—inability—to learn in a group with other teens. During the first session, he stated, “If you want me to behave, just humiliate me. That’s what my teachers do, and it works.” Clearly it wasn’t right to humiliate him, and we explained about needing to understand him and his learning style. The question is: Why would he wait for a teacher to humiliate him instead of just changing his behavior? Our thoughts: We professionals can become very frustrated with his telling too many jokes or demanding the group listen to him talk about his area of interest and not allowing others to share their ideas, we provide redirection statements while showing a calm and even smiling face: “Okay, we need to move on, let’s go onto the next activity.” We don’t look or sound distressed or upset, even though we may feel distress. However, when a teacher has truly had enough and commands with an angry-sounding voice and stern face, “That’s it! Go to the principal’s office!”—now this type of student, who struggled to read the social cues before, gets it and stops what he was doing. For Rudy, he needed to hear and understand that his brain struggles to read the social cues. Clearly, he wanted to be in the group, but he couldn’t read the subtle group dynamics. He thought this was an interesting notion. After working successfully to unpack some of these many dynamics, he begged to go back into the group. What was interesting about his eventual re-entry into the group was that he remained completely silent. He didn’t actively participate in verbal discussions or humor, his hallmark. He wasn’t withdrawn; he was unusually quiet and hesitant to respond and without humor in the group. His silence was the indication of a student for whom the group dynamics were overwhelming. In fact, many resistant (self-protective) social communicators have a great sense of humor and enjoy being with people but struggle to understand the social world beyond their own terms without direct intervention.

  5. Effective treatment begins by working with these social learners individually to establish rapport and trust. Individual sessions also can decrease anxiety and the overwhelming nature of group dynamics. The interventionist has to show interest in them to make a connection—then slowly build on that relationship for them to extend their ability to study how the social world works without making them feel ashamed for not figuring this out already. Realize these social learners likely have a history of unintentionally making those around them upset, so they are stuck in a reactionary mode. It is going to take time to develop a relationship where they can trust that people are trying to help rather than “fix” them.

Moving toward deeper understanding and effective treatment

We want to state that we strongly disagree that the group of social learners described in this article are just “part of the autism spectrum” or have mental health challenges. Our sense is that this subgroup has compelling “self-protective” features that are due to overwhelming anxiety given their subtle but very significant social learning challenges. Take a minute to think and reflect about those with whom you work or teach that you perceive as argumentative or manipulative. What tools or strategies do you have in your tool bag that have not been helpful with these students? We know that trying to make them “behave” with a behavior plan often ends up making the situation worse. These frequently misunderstood social learners are often regarded as behavior problems in the classroom—and in society. As a misguided and ineffective intervention, people have resorted to forcing compliance through behavior plans which only confounds the problem. Instead, the Social Thinking Methodology proposes a different pathway toward sustainable, life-long learning: if we want self-protective individuals to learn to interpret and respond to what’s going on around them in the social world in a manner that is expected and acceptable to others, then we need to take the time and energy to teach them how.


Please explore our website for more books and print products, livestream-recorded training events, and free articles and webinars about Social Thinking® treatment frameworks and strategies.


References:


National Autistic Society. (2019, September 25). What is pathological demand avoidance (PDA)? https://www.autism.org.uk/about/what-is/pda.aspx


O'Nions, E., Viding, E., Greven, C. U., Ronald, A., & Happé, F. (2014). Pathological demand avoidance: exploring the behavioural profile. Autism: the international journal of research and practice, 18(5), 538–544. https://doi.org/10.1177/1362361313481861


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