About pda.expert

I created this site to combat the two issues all parents of PDA kids eventually face. Before I explain this, allow me to share our story.

My son

Fifteen years ago, we began to understand there was something unusual about our child.

Five years later we began to seek help.

Two years later we called emergency services and they took our son away to a hospital. They called it depression and sent him home, but it wasn’t that.

We had no idea what we were dealing with until the day my dear aunt, an elementary school teacher who, for forty years, worked with Gifted and Talented kids (as they are called in the US), said, “You know, he sounds like my Asperger’s kids.”

So we started to investigate. It turned out he didn’t have Asperger’s Syndrome, although there are shared characteristics. But that one idea put us on the right path.

Like the courtier after the ball, we carried the glass slipper of our son’s symptoms from house to house across the town of Autism, seeking the foot it fit. We scoured the internet, which, despite its convenience, is like looking for a needle in a haystack in a hurricane. What little signal exists is obscured by engineered or gated content: engineered because mental health content exists to monetise eyeballs; gated because scholarly journals exist to monetise intellectual prestige.

And then, one day, we stumbled upon our metaphorical Cinderella: Pathological Demand Avoidance, that very small and unfamiliar star in the constellation of autistic spectrum disorders. Were it not for my aunt, we would never have looked through the telescope to that part of the sky. It was an emotional time.

That was only the end of the beginning. The next part was trying to get help for our kid, which is where we ran headlong into the two brick walls that every parent of a PDA child eventually hits.

Wall #1: Ignorance

If you’re lucky, you will find a psychiatrist or clinical psychologist motivated to understand your kid and not just pump them full of drugs. Yet more often than not, these people are oversubscribed. When they lack the time, they default to their “roots,” the generalities and approaches that are taught in their country’s medical schools.

By way of example, we live in France. French psychiatry has been dominated by psychoanalysis, more so than almost anywhere else in the world. Where autism is concerned, that inheritance still lingers. It is a tradition that treats finding the cause as the finish line. In the cruelest of ironies, even where a clinician genuinely tries to help, the instrument on offer is talk therapy: as if one hour every few weeks of their rationality could rewire a disordered, or differently-ordered, thinker. Add to that the fact that PDA is virtually unknown here. As of this writing, the only peer-reviewed French-language paper on the subject is a dispassionate literature review that is silent on the challenges families face.

The only way to overcome this ignorance is knowledge. The literature is English-dominant. If I can translate it into the languages spoken by the clinicians who need it, then maybe I can help parents bring scholarship to their child’s doctors in their native tongue. It has the potential to be life-changing.

Wall #2: Arrogance

Scholarship alone is not enough, because it assumes that practitioners are open to new information. This is the second wall: professional arrogance.

Arrogance takes two forms. One is garden-variety patronising from practitioners who are certain they have nothing to learn from you, and that both your questions and your advocacy are misplaced. The other, more insidious, arises from practitioners who — by virtue of their own ignorance both of PDA and of the masking so characteristic of these kids that it makes them appear absolutely ordinary — inevitably say:

So. Tell me about your home life.

It is blame. Guilt. The not-always-thinly veiled accusation that you — the parent — are the cause of all this.

My goal

I do not expect to find a cure for my child. Our family’s concern is mere stability. A good day is one without explosions of anxiety and pain. But if I can help others at least begin to understand PDA, and in particular make it easier for non-English speakers to find scientific and high-quality advocacy literature in their own language, then that is a noble cause.

You will find three types of articles on this site, in the following order of importance to the project:

1. Medical and academic scholarship, particularly peer-reviewed work
2. High-quality advocacy from associations and paramedical groups
3. Lived experiences from practitioners, teachers, parents, caregivers, and PDAers themselves

It is the last of these that will be the most subjective and least comprehensive. I can only be opportunistic. To approach it otherwise would require devoting more time than I am able to. If you feel I’ve missed something important, please contact me.

Copyright

In creating this site, I have made the conscious decision to host and translate articles that sit behind paywalls or are under copyright.

Everyone who lives with PDA needs and wants more people — especially clinicians, educators, social workers, and anyone who has an impact on inclusion and integration — to understand what it is. There are so many obstacles families and PDAers must overcome. For those living in non-English-speaking countries, two things stand in the way of getting help: one is language, the other is the commercial machinery of science that limits the diffusion of high-quality knowledge. I can’t help with the former without taking a stance on the latter. As a father, it is a choice I am absolutely comfortable making, and I would hope that the authors of these works would understand.

My goal is no less than for this site to become the single-best source of PDA scholarship on the Internet.

Full citations are provided for every article. Where available, I provide links to canonical sources.

For PDAers, parents, family and friends

I see you.

I know.

Best wishes — J