A couple of months ago the BBC mini-series The A Word premiered in the U.K. and generated a lot of reaction in the online Autism community (I am still waiting for it to be available in the U.S. – apparently SundanceTV has acquired the U.S. airing rights).
One of the articles about the show was a review by a father and daughter: she through the eyes of an adult on the spectrum, he through the eyes of a parent of a child on the spectrum.
Among other things, the article discussed the “little professor” Autism stereotype – the idea that all kids on the spectrum are super-geniuses in specific areas – expressing the wish that the media would not use this stereotype so much: “It would be nice to see an autistic kid in a drama who is not a prodigy.”
Then the dad said this about his daughter:
She has a condition called pathological demand avoidance syndrome. It’s a fairly obscure form of autism, but is rapidly becoming less so. Children with PDA tend to find all forms of learning difficult so they find ways of avoiding tasks, and become hugely manipulative in the process. Which, to be fair, is a skill in itself.
What Maya was, and is, brilliant at is heroic struggling. So she struggled through … [school] and finally, magnificently, struggled through a degree against all possible expectations … Her gift was in her resilience.
I loved reading the way he described his daughter’s brilliant strength. But what stopped me in my tracks was this: Children with PDA tend to find all forms of learning difficult so they find ways of avoiding tasks, and become hugely manipulative in the process.
In a lot of ways he was describing the Navigator, especially with regard to how hard school is for him; except that the Navigator had not been diagnosed with PDA.
When I did more research, I found that PDA, first defined in the mid-1980’s, is not yet recognized by the DSM-5 as a developmental disorder.
Still, for something that is not officially recognized, there is quite a lot written about it. The National Austic Society (U.K.) even includes a description of PDA on its website, explaining that it stems from an anxiety-based need for control, and that kids with PDA can be highly imaginative in how they avoid demands, using social knowledge in their avoidance tactics.
Sometimes the Navigator’s creativity in trying to get out of doing something he does not want to – say, a math assignment, or shutting down the computer at night – can be extraordinary, and I can’t help being impressed while enforcing the demand he is desperately trying to avoid.
So, ok, the Navigator may have PDA. Does it matter that it is not recognized by the DSM? Do I need to have it diagnosed?
What I need is to know how to use an understanding of PDA to guide my parenting – the same mission I have always had, to find tools and strategies can we use to help him, and teach him to use himself.
The NAS offers these suggestions:
People with PDA need a less directive and more flexible approach than others on the autism spectrum. Underpinning this approach is the understanding that a person with PDA does not make a deliberate choice to not comply and they cannot overcome their need to be in control.
The PDA Society also has a page with suggested strategies, including balancing tolerance and demands, indirect praise, and choosing your battles.
I have also recently found a brilliant blog called Riko’s Blog. Written by an adult on the Autism spectrum, specifically with PDA, Riko blogs about his experiences, including tips and strategies for parents. It is a gold mine of invaluable assistance.
He suggests parenting techniques such as “framing demands so as to give the child the appearance of control while the parent actually maintains control and the demand is met” (which we have started doing), and coping strategies that he uses, such as role play, reverse psychology, and giving himself an out, among other things.
I have no doubt that someday PDA will receive official recognition, and professionals will offer newly developed, evidence-based tools, strategies, and techniques.
Until then, we will climb our learning curve on our own, and share together with others on their PDA learning curves.
More information about PDA can be found in the resources below: