EN ESPANOL

ASL VIDEO

By: Rebecca Sobie, Senior Staff Attorney, DRAZ

April 2, 2024 marks the 17th annual “World Autism Awareness Day,” as designated by a United Nations General Assembly resolution, and April is established as autism awareness or acceptance month. Autism is a neurodevelopmental disability, which means that it impacts how a child develops psychologically and socially. Because it is a spectrum, as noted by the Autistic Self Advocacy Network, “[t]here is no one way to be autistic,” and autism is experienced in different ways.

Despite widespread awareness, we are still learning about the many facets of the autism spectrum. This post explores one lesser-known autism profile called “Pathological Demand Avoidance,” also known as “PDA.” Although PDA is acknowledged in the United Kingdom and Australia, less is known about it in the United States, and it is not identified in the Diagnostic and Statistical Manual of Mental Disorders (DSM).

Characteristics of “PDA”

PDA is characterized by an extreme avoidance of everyday activities due to heightened anxiety and nervous system dysregulation. Individuals with PDA experience an anxiety-related need for control as a coping method, have intense emotions and mood swings, and may experience extreme and uncontrollable anxiety from every day “demands” (including self-imposed as well as external demands), leading to an instinctive “fight/flight/freeze” reaction that can be similar to a panic attack.

Conventional parenting, teaching or support approaches, including approaches that may be helpful for other autism profiles, are often counter-productive for individuals with PDA and may lead to additional anxiety.

Demand avoidance in PDA is described as “can’t, not won’t”; in other words, an individual with PDA neurologically cannot (is unable to) respond to demands of all types, which might include school work and school attendance.

Individuals with PDA are prone to burnout, due to their sensitive nervous systems. “Burnout” in the context of PDA is defined as long term, stress-induced drain that results in behavioral changes such as extreme mood swings, exhaustion, and retreating from socializing.

How PDA May Present in School

• PDA children may “mask” their struggles, making it difficult to identify their disability, while also causing anxiety for the child.
• According to the PDA Society of the UK, PDA children often experience multiple school exclusions from an early age. In our experience, this can include exclusion from classrooms and extracurricular activities, and peer and social exclusion and isolation, in addition to self-imposed school attendance exclusion.
• PDA children may see themselves as equal to adults.
• PDA children may have poor self-esteem, find emotional regulation difficult, be ambivalent about success, and complain that work is boring.
• PDA children are not “disobedient,” but rather experience genuine anxiety that can trigger their nervous system and cause the inability to follow rules or demands, leading to distress and panic attacks.
• PDA children frequently have difficulty with school attendance. A K. report from March 2019 found that 70% of PDA children who participated in the study were not able to tolerate their school environment or were home educated, typically because the stress involved in attending school was so great that they could not effectively access the school environment. This should be treated as a health issue rather than truancy, and schools can work with students and families to address school refusal with proper accommodations.

Addressing “PDA”

Early identification and tailored support that recognizes the profile and provides for individualized accommodations can be beneficial to positive outcomes.

In order to avoid panic, individuals with PDA may utilize and benefit from “social strategies” as a method of avoiding demands, including distraction, procrastination, avoidance, and/or withdrawal into role play or fantasy.

The types of strategies that are typically applied for autistic children (such as rewards and consequences) can be perceived as demands on their nervous system and therefore produce anxiety in children with PDA, which can lead to negative outcomes. Positive feedback based on effort and supports for self-regulation may yield better outcomes. While it can be helpful for children to understand the social rules of the neurotypical world, social skills programming may have the unintended effect of leading to masking and increased anxiety.

The approaches that help children with PDA may seem unconventional, and include flexible thinking in addition to support strategies referred to as “PANDA”:

• Pick battles (minimize rules and enable a level of choice and control)
• Anxiety management (reduction of uncertainty, recognition of underlying anxiety and challenges, treatment of distressed behaviors as panic attacks meriting compassion)
• Negotiation and collaboration (remain calm, collaborate and negotiate to jointly solve challenges and to determine the best accommodations, use indirect and declarative language)
• Disguise and manage demands (phrase requests indirectly, monitor tolerance for demands and adjust demands accordingly)
• Adaptation (try humor, distraction and roleplay, allow plenty of time and space to regain emotional regulation, provide flexibility)

Occupational therapy services with a PDA-aware provider can help with sensory processing, and work on interoception will help to increase the child’s understanding of their emotions and triggers.

For children open to therapeutic approaches, therapy with a practitioner knowledgeable about PDA, with an open, flexible, neurodiversity affirming and regulated-oriented approach is likely to work best, versus Applied Behavior Analysis (ABA) types of therapy.

For children with PDA, visual cues, picture schedules, and checklists can increase anxiety. In addition, routines and schedules can be perceived as demands. Providing flexibility in approach and allowing the child to collaborate in setting their schedule and goals is helpful to reduce demands.

Most children with PDA dislike “busy work.” Changing assignments to align with interests can be useful.

Caregivers may support PDA children by providing low-demand parenting, dropping limits on activities such as “screen time” that may regulate children with PDA, providing as many options as possible, addressing increased sensory sensitivities, advocating for proper educational supports, and increasing self-care to help caregivers and family members avoid their own burnout.

Resources for teaching professionals, parents, providers, and others are provided below.

Resources

For more information on PDA, please see the following:

• PDA North America
• PDA Society (United Kingdom)
• What is PDA? One-Pager
• School Recommendations in PDA
• Strategies and Support Needs for School- Template Letter to School
• PDA for Teaching Professionals
• De-escalation Methods for Caregivers and Teachers
• Homeschooling and PDA
• PDA Affirming Guidelines
• Therapy with PDAers
• Coping strategies and therapies for adults with PDA