son deteriorating

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Tracker, OH MY GOSH. That describes him to a t. Seriously. Here are the bullet points:

The main features of PDA are:

obsessively resisting ordinary demands

appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)

excessive mood swings, often switching suddenly

comfortable (sometimes to an extreme extent) in role play and pretending

language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'

obsessive behaviour, often focused on people rather than things.

Yes, yes, and yes. It also says "People with PDA tend to have much better social communication and interaction skills than other people on the spectrum, and are consequently able to use this ability to their advantage. They still have real difficulties in these areas though, usually because they need to control the interaction." This is totally him. He controls every aspect of our interactions, or tries to. How long we look at him, what we say in reply, where we should be standing/sitting while he's talking, how soon we should reply, what our breathing should be like. Also how we touch him, and when, and for how long, and other things like walking thru the room, not leaving a room without him, not going down the stairs without him, where we sit at the dinner table. He's always been controlling about that stuff. I'm totally stunned.

Thank you!

It also says "Often in cases of PDA there will have been a passive early history, but this is not always the case. It is believed that there may be neurological involvement in some cases, with a higher than usual incidence of clumsiness and other soft neurological signs."

YES. He didn't talk until age 3 and was very passive, sort of checked out and disengaged. Then when he started talking, he began being controlling. And he was very clumsy, didn't make his milestones in most things, and he's had neuro workups for various issues that don't really point to anything. Amazing.

The interesting question will be how the protocols should be different if it is PDA. On that, I have no clue.

Sorry that I had forgotten all your history when I responded earlier; I should have looked it up, but I was in such a rush ... Anyway, it sounds like you have already done or have been working on the things I suggested, so there probably isn't that much more available on those roads. You may need a new protocol.

I don't know how to get you there, but I think you will know when you have the right one.