Are we really helping children and their families by adding more diagnoses?
- PDA has been put forth as an ASD subdiagnosis for a child who's overwhelmed, anxious, and reacting negatively to social or sensory demands.
- These conditions become justification for the American phenomenon of parental anxiety over children experiencing any emotional distress.
- Children must learn to tolerate some of their distress in not getting what is most comfortable to them.
As a frontline behavioral/developmental pediatrician for more than four decades, I knew something was up when a parent of a new patient asked me if I evaluated children for “PDA,” and then, within a month, three other parents made similar inquiries. Trained in general pediatrics, I had known the acronym PDA as patent ductus arteriosus, a congenital heart problem of persistent embryonic circulation after birth.
But this PDA was psychiatric, not cardiac. After admitting to the first parent that I had never heard of the diagnosis, I quickly went online and learned that PDA stands for pathologic demand avoidance. A further quick review of what’s online about PDA revealed the following: The condition was named about 20 years ago in the United Kingdom. I’m not sure how big it is there, but there is already a PDA Society.
PDA is presented as a potential subdiagnosis of ASD (autism spectrum disorder) where a child is overwhelmed, anxious, and reacting negatively to any social or sensory demand. The treatment is appreciating the child’s personality challenges with an expectation of slow improvement fostered by reward and encouragement. Asking the child to remain engaged or any form of negative response from the parent, teacher, or caregiver is felt to make the situation worse and should be avoided. I could find no study or data to support the proposed forms of intervention for PDA.
A recent scholarly review concluded, “if these behaviours are conceptualised as an anxiety-related attempt to increase predictability, it remains possible that this could be just as effectively communicated using existing diagnostic categories, such as anxiety, trauma- and stress-related disorders.” In other words, what does introducing PDA to America really do, if anything, for children, their parents, and teachers?
Alphabet Soup of Syndromes
PDA is the latest in a series of syndromes that have only added to the ever-burgeoning diagnoses of ADHD (attention-deficit/hyperactivity disorder) and ASD. SPD (sensory processing disorder), ARFID (avoidant/restrictive food intake disorder), and SCT (sluggish cognitive disorder) are just the best known of the new alphabet soup of disorders that makes one wonder, are there any normal children left?
All these disorders put the locus of the problem on the children’s brain chemistry, personality, and genetics. An anthropologist, evaluating the fundamental requirement of children’s need to comply (doing what someone else wants you to do, even if you don’t want to do it), would see these conditions coming down squarely on the side of children “can’t” rather than “won’t” put on their scratchy socks, eat what’s been prepared for dinner, or go to bed when told.
To put it another way, most of us would view punishing a child with a congenitally short leg for coming in last in a race with peers as simply cruel and not constructive. It would be so then with these less visible, but nevertheless congenital disabilities. These conditions, crowding out normalcy, also become justification for another American cultural phenomenon, parental anxiety over children experiencing any degree of emotional distress.
Seventy years ago, poor parenting, primarily by the mother, was the reigning explanation for children’s mental illness. Offering an alternative explanation, two child psychiatrists, Stella Chess and Alexander Thomas, proposed that children had innate temperaments (biological and genetically based). Problems developed when there was a poor “fit” between the expectations and responses to specific personalities. I’m not sure I need more of an explanation to account for sensitive, intense, and persistent children struggling to comply with adult demands to account for the range of newly described disorders.
Ironically, temperament theory never caught on with the child psychiatrists but was adopted and is still maintained to some extent by pediatricians today. “Can’t” vs. “won’t” is a false dichotomy for these children. A better choice would be “it’s harder for them to, but they can” cope or comply with the appropriate expectations and responses.
Children need to be encouraged verbally, offered choices, and rewarded for taking chances and coping appropriately. However, simply accommodating and rescuing a child from doing something hard not only fails to free the child from the tyranny of their personality but also potentially enslaves the parents and family as well.
Learning to Tolerate Distress
I’m not sure what in our culture has suddenly made PDA go viral with worried parents. But, whether it’s PDA, ASD, or ARFID, children must also learn to tolerate some of their distress in not getting what is most comfortable to them. And parents must learn to manage their own distress over their children’s distress by not uniformly giving in to children who are avoiding demands pathologically. Accommodation alone may lead to more emotionally disabled children who are unable to cope in the mainstream and increasingly dependent on specialized environments and psychiatric drugs. Maybe only in adulthood will the children, themselves, decide to overcome on their own what their parents were too fearful to offer them as children.