Pathological Demand Avoidance (PDA) is an unnecessary and dehumanizing label. It has become frequently mentioned in the autism community as a new diagnostic label often driven by anxiety and a need for control describing adamant refusal of everyday demands, often driven by anxiety and/or need for control. (Newson et al., 2003). PDA has been widely discussed and debated which adds an unnecessary new label, discouraging families, caretakers, teachers, therapists, and others in allied fields. Focusing on Neurodiversity Affirming Supports (NAS), we incorporate theoretical overviews of PDA and its alternative terms such as Pervasive Drive for Autonomy and Rational Demand Avoidance (RDA).
For example, twelve-year-old Calishea frequently melts down when asked to clear the dishes from the table after dinner, rinse them off and put them in the dishwasher. After a brief period of whining, she slams her silverware on the table, stands up knocking over her chair backwards, and shrieks as she stomps out of the kitchen. “Get back in here” yells one or both of her parents as Calishea quickly goes to her bedroom and slams the door. Frustrated, her parents try to figure out what to do next.
Situations like this come up frequently for parents raising autistic and otherwise neurodivergent children and for their teachers in classroom settings. Increasingly, behaviors of this sort lead to a diagnosis as PDA.
Coined by Elizabeth Newson, PDA describes autistic children exhibiting obsessive resistance to everyday demands and requests (Newson et al, 2003). Although most people occasionally encounter tasks they would prefer to avoid, some individuals find any demand or request to be completely overwhelming. Since that time, it has been seen as part of the autism spectrum by many professionals and parents who are frustrated when their child refuses to do something that they are asked to. It is important to note that PDA is not an official diagnosis in the DSM-5.
PDA can be mistaken for defiance or oppositionality because it presents as ignoring or avoiding tasks that are asked of someone. Of course, ignoring, avoiding, or refusing a request from parents or teachers may cause functional difficulties. As part of the neurodiversity-affirming movement, we are concerned that the term “PDA” unnecessarily tends to pathologize and demean individuals.
There are V codes in the DSM as a set of supplementary codes used to describe factors that influence or relate to diagnoses but are not recognized diagnoses themselves. The F88 ICD-10-CM code is used to diagnose “other disorders of psychological development,” or other characteristics of psychological development in our view.
Let’s look at the example of Sensory Processing Disorder (SPD). While there is not a specific diagnosis for SPD, therapists and clinicians often use F88 to indicate symptoms related to SPD, as the code can encompass conditions like developmental agnosia and global developmental delay. It serves as a broader code documenting sensory integration issues, facilitating communication, and supporting appropriate intervention plans. Therefore, F88 functions as a catch-all, much like the PDD-NOS designation used in the past. This code provides a way for clinicians to document sensory processing difficulties when a more precise diagnosis like SPD is not available or when the individual’s symptoms overlap with other developmental differences such as autism, ADHD and intellectual disability.
New Perspectives
One perspective, Rational Demand Avoidance (RDA), is based on a cognitive-behavioral concept describing an individual’s avoidance of demands experienced as irrational, illogical, or unnecessary. This differentiates it from PDA and applies the concept to real-world applications in educational, occupational, and social contexts.
Some individuals exhibit extreme resistance to demands due to neurodevelopmental conditions such as autism, while others engage in rational demand avoidance (RDA) because they choose to avoid or delay demands based on logical or strategic reasoning. Unlike PDA, which is often associated with anxiety, RDA is characterized by deliberate, pragmatic decision-making.
Another perspective uses the same acronym to stand for Persistent Drive for Autonomy (PDA). In a society that doesn’t recognize needs, avoiding demands can seem like a rational way to manage the environment. We affirm this decidedly humanistic perspective. When the perceived cost, such as the time, effort, or emotional toll outweighs the benefits, individuals may then engage in avoidance behaviors as an adaptive strategy as described below.
While most of these strategies are implemented at the moment of avoidance, other strategies focus on prevention of the challenging behavior before it starts. For example, in a social context children and adults may refuse to engage in social situations involving mostly small talk that provide little personal, professional or relational benefit when taking part in groups that do not line up with their interests. A possible strategy could be to alter expectations that require neurodivergent individuals to attend meetings that do not interest them.
Another example could occur when there is sensory overload such as Bright lights, large groups, noisy restaurants, and overcrowded situations. Some possible supports include dimming lights, noise cancelling headphones, attending noisy crowded events online where possible, shopping late at night, eating at restaurants outside of traditional mealtimes.
In an educational context, a student, whether in grade school or in college, may refuse to complete assignments when they have already demonstrated mastery of the subject. Instead, they pursue their passions. Unfortunately, they wind up with a negative grade. It’s important to note that time in school can be exhausting, leading to meltdowns or shutdowns when additional work is required at home. Supportive strategies might be to individualize homework to the student by adjusting the workload, providing movement breaks, and focusing on quality over quantity.
These new perspectives reflect an adaptive approach to tasks and obligations which may lead to conflict, particularly in rigid environments such as schools or traditional workplaces. Understanding these new perspectives on demand avoidance can foster more flexible expectations respecting the individual differences and autonomy of neurodivergent individuals.
Persistent Drive for Autonomy is characterized by an intense need for autonomy and control over an individual’s environment often resisting external demands or expectations (Milton, 2017). Unlike oppositional defiance, this behavior is not primarily motivated by defiance or rebellion but by an intrinsic need for self-determination (O’Nions et al., 2014).
Specifically, this profile is characterized by resistance to external control, resulting in avoidance behaviors. For example, an office worker insists on taking a break away from their desk at 10:00 AM as a result of a difficult phone session with an irate, unreasonable customer, but break time is not until 10:30. The office worker frequently takes breaks off schedule based on their emotional or sensory needs.
Conclusion
Unfortunately, the neurodiverse-affirming perspective described in this article has not been widely adopted. This approach is still in the beginning stages which we hope will become the standard of care for neurodivergent children and adults through their lifespan. Further research is needed to refine diagnostic criteria and intervention strategies tailored to the needs of individuals. Critical gaps remain in its conceptualization, assessment, and treatment. Further empirical and qualitative work is needed to develop evidence-based interventions.
This view emphasizes the underlying motivation of seeking control in the relatively unpredictable environment the neurodivergent individual experiences as contrasted to the typical world rather than simply being pathological, diseased, disordered, or unhealthy in their avoidance of demands. The concept of a persistent drive for autonomy expands the understanding of demand avoidance beyond neurodevelopmental conditions and highlights the importance of autonomy as a core psychological need.
Robert Naseef, PhD
Stephen Shore, EdD
Robert Naseef, PhD, is a clinical psychologist, author, and parent of an adult son with autism. He is the co-facilitator of a fathers’ support group. He serves on numerous boards and blogs regularly at drrobertnaseef.com.
Stephen Shore, EdD, is an autistic individual who is a clinical associate professor of special education at Adelphi University. He combines his personal, practical, and academic experiences to promote fulfilling and productive lives for autistic people as the rule rather than the exception. Serving on numerous autism-related boards, his website is www.drstephenshore.com.
References
American Psychiatric Association (APA) (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). Washington, DC: American Psychiatric Association.
Milton, D. (2017). “A Mismatch of Salience: Exploring the Nature of Pathological Demand Avoidance from a Neurodiversity Perspective.” Good Autism Practice, 18(1), 14-23.
Newson, E., Le Maréchal, K., & David, C. (2003). “Pathological demand avoidance syndrome: A necessary distinction within the pervasive developmental disorders.” Archives of Disease in Childhood, 88(7), 595-600.
O’Nions, E., Viding, E., Happé, F., & Creswell, C. (2014). “Pathological demand avoidance: Exploring the behavioural profile.” Autism, 18(5), 538-544.