Pathological demand avoidance (PDA) is a controversial term.
Over the past 40 years, some clinicians have used it to describe a set of personality and behavioral traits exhibited by people with autism who tend to refuse to cooperate with the demands of others. But the term is absent from the Diagnostic and Statistical Manual of Mental Disorders (DSM) and the International Classification of Diseases, which psychiatrists and psychologists use to make official diagnoses.
Those who prefer the term say it has merit — if not as a diagnosis, then at least as a way to describe a common personality type among people with autism. Other professionals say it is too narrow and subjective to be clinically useful, and that it pathologizes an autistic person’s preferences and autonomy.
Here we explain what scientists know about pathological demand avoidance and its link to autism.
How did the term originate?
The late Elizabeth Newson, professor of psychology at the University of Nottingham in the UK, coined the term in 1983 to describe a syndrome in which a person resists and avoids the ordinary demands of life, even when complying with them is in his best interest. According to Newson, the syndrome’s behaviors can include trying to distract the authority figure who made the request, making excuses, withdrawing into fantasy, and avoiding meaningful conversations, possibly to such a level that it results in meltdowns or panic attacks. Signs of PDA usually show up early in life, Newson noted.
Since then, she and other clinicians and researchers have refined the definition to highlight how people with PDA use social strategies to avoid demands and mask anxiety or underlying processing and communication problems. Newson and his colleagues also explained how to treat children who have a PDA profile, using approaches that differ from those commonly used with autistic children, even if children described as having PDA are autistic. Rather than providing children with a highly structured routine, for example, they emphasize novelty and variety.
Discussion of the PDA has mostly been limited to the UK. With social media dissolving international borders, however, people in the United States are becoming aware of the concept.
What is the relationship between pathological demand avoidance and autism?
Newson originally described PDA as a pervasive developmental disorder, different from “classic autism,” as some then called it. She argued that it was a separate syndrome on the autism spectrum – like Asperger’s syndrome, which was subsumed into “autism spectrum disorder” with the publication of the DSM-5 in 2013.
More recently, clinicians and researchers have described PDA simply as a “profile,” a cluster of behaviors that can be used to describe many people with autism, but not a distinct syndrome or diagnosis. The PDA Society, a UK-based non-profit organization, describes PDA as “a profile on the autism spectrum”. And the UK’s National Autistic Society calls PDA a profile that first requires an autism diagnosis.
There isn’t enough evidence to support PDA as an autism subtype or an independent condition, according to a 2018 study. Others say the concept is still useful, even if it isn’t. not concrete.
“My own clinical view is that this is a pattern of behavior seen in some children and young people with autism. However, what this ‘pattern’ is is not clear – it could be ‘a personality type interacting with autism; it could be something else entirely,” says Judith Eaton, a consultant clinical psychologist and research associate at King’s College London in the UK. “I prefer to think of it as as children with complex needs, who need an individualized support program, whatever we call it.”
Why is the term “pathological demand avoidance” controversial?
PDA has not been widely accepted by clinicians, especially in the United States. Part of the problem is that even though PDA represents a real phenomenon, it means different things to different people, and the usefulness of the designation is unclear, says Catherine Lord, Distinguished Professor of Psychiatry and Education at the University of California at Los Angeles.
Stronger critics of the term argue that people with autism who assert their own choices that are contrary to the wishes of their parents or teachers do not show symptoms of a disease. They are simply exercising their autonomy, wrote Damian Milton, senior lecturer in intellectual and developmental disabilities at the University of Kent in the UK. To call this resistance “pathological” rests firmly on the ableist preferences and values of the person whose demands are not being met.
Another problem is that PDA positions a pattern of behavior as a symptom of a diagnosable condition, without considering the context of the behavior, says Devon Price, clinical assistant professor of psychology at Loyola University in Chicago, Illinois.
That context includes what requests a child refuses and why, Price says. Maybe they need help or are exhausted. Or maybe they don’t want to accept a task being thrust upon them, Price says. “If a child disagrees with what is being asked of them, then what we call PDA is actually a very powerful act of consent and self-defense.”
Many educators and mental health providers expect children to comply with instructions, whether they understand or agree to them, Price says. “So any struggle or hesitation is pathologized.”
What is the evidence supporting the avoidance of pathological demand?
Few robust studies exist to support or refute the validity of PDA, and those that do exist are small.
Children with a PDA profile likely make up a small percentage of the autistic population, and many appear to grow out of it in adolescence or adulthood, a 2014 population-wide study found. According to a 2015 study, in a group of 27 children who scored high on measures associated with PDA, 26 had autism. This study also showed that this group tended not to cooperate with authorities, using strategies such as apparent manipulation or attempts at shocking behavior to create a distraction. Avoidance behaviors in children described as having PDA are often triggered by phobias, novelty and uncertainty, according to a 2017 study.
According to a 2013 study, girls score higher on a measure of PDA traits, the Extreme Demand Avoidance Questionnaire (EDA-Q), than boys. But researchers have not widely adopted EDA-Q. According to a 2018 study, adults who score high on the EDA-Q tend to be antagonistic, disinhibited, and disagreeable.
“Larger scale studies are needed, but I know from talking to people that there doesn’t seem to be any interest or appetite to pursue this as a research project,” Eaton says.
Cite this article: https://doi.org/10.53053/YKGQ6660