About pda.expert

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

Our story

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.

We had no idea what we were dealing with. Until the day that I sat down with 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, which shares some symptoms but differs in a very important way. But that one idea put us on the right path.

We were like the courtier after the ball, visiting every house in the town seeking the foot that fit the glass slipper. We scoured the internet, which, despite its convenience, is like looking for a needle in a haystack in a hurricane. The little signal there is is obscured by engineered and gated content: engineered in the sense of generic mental health content designed for the monetisation of eyeballs; gated in the sense of scholarly articles designed for the monetisation of prestige.

And then, one day, we stumbled upon Cinderella. We found the foot whose symptoms fit the glass slipper of our child perfectly. We found Pathological Demand Avoidance — that very small and unfamiliar star in the constellation of autistic spectrum disorders. Were it not for my aunt, we would have never 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. And that is where the real problems started, because every parent of a PDA child eventually confronts the same two problems.

Issue #1: Ignorance

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

By way of example, we live in France. It is a fact that French psychiatrists are overwhelmingly influenced by psychoanalysis, which means they are generally ineffective in practical clinical environments. PDA is virtually unknown here. There is, as of this writing, exactly one peer-reviewed French-language paper on the subject: a disinterested review that obscures the challenges families face.

This site exists to change that. 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.

Issue #2: Arrogance

But scholarship alone is not enough, because it runs headlong into the second force: professional arrogance. And it is tragically the lived experience of EVERY parent who has ever had to explain their child to a new doctor.

Arrogance takes two forms. One is garden-variety patronizing 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 of PDA and its specific symptom of masking that makes PDA kids appear absolutely ordinary — inevitably ask:

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.

What this site does

I do not expect to find a cure for my child. My purpose is to increase understanding, and in particular to make it easier for non-English speakers to find scientific and high-quality advocacy literature in their own language.

Sources are included in the following order of importance:

1. Medical and academic scholarship, particularly peer-reviewed work
2. High-quality advocacy from associations and para-medical 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

I have deliberately chosen to host and translate articles on this site whose access is restricted by paywalls or copyright. I do this for three reasons.

1. 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. Gating research about a condition that is already poorly understood does not help the people who need it most. I do not lose any sleep making this choice.
2. Translating those articles into other languages extends their reach further, to the benefit of the authors and the publishing journal. My goal is no less than for this site to become the single-best source of PDA scholarship on the Internet.
3. If it’s on this site, that means I found it elsewhere on the Internet in PDF format already. If you aren’t willing to go after those people, please… don’t come after me.

Full citations and links to canonical sources are provided for every article.

For PDAers, parents, family and friends

I see you.

I know.

Best wishes — JD