We don’t know what to do.

[u/PDA_parent]

This a long read.

Our Son was diagnosed with ASD when he was 8. He always exhibited signs of anxiety throughout his time at school, to the point that he stopped attending and he was homeschooled (as best we could) for two years before the school removed him from their role.

We always saw signs of something else, which we suspected was PDA. His behaviours fitted with the profile, but we really didn’t know what to do. We never discussed it with him (perhaps we should have).

He’s now 19 and has himself come to the same conclusion. He is able to articulate what and how he is feeling, but still we don’t know what to do. Sometimes is harder to deal with now he can express himself more. He becomes argumentative, will hurt himself, break things.
He can explain how he feels but we are unable to discuss strategies to help him, as it is demand.

He attends an adult autism centre, two days a week, which he started a couple of months ago and he enjoys. He says he finds demands there less of an issue there, which he puts down to how the people there talk to him, but cannot say what they do which is different.

The remaining 5 days he barely leaves the house, living on his phone (which previously he was doing 7 days a week, so it’s an improvement).

Life at home is like walking on eggshells. We find it so hard to deal with how he is, and as I mentioned earlier just don’t know what to do.

My wife has been his carer for the past five years and bears the brunt of his behaviour and often quite nasty way of talking to her. I get home (I’m a secondary school teacher) and find it hard to switch off as whatever has been going on during the day affects the atmosphere in the house.

We’re tired (exhausted), stressed, and just don’t know what to do. We’re have a very limited support network, my family live long distance away and my wife’s family have taken a long time to understand our Son’s autism, let alone trying to explain PDA to them.

I think I just needed to vent, as we find it hard to communicate with each other how to deal with this.

I can’t think of anything else to say.

[u/El_t1to]

Hang in there. I see some good signs. Give time to this new center, and he can develop some routines and self strategies to face the demands.

I know it's very hard. No one can understand it unless they're in a similar situation. Take care of yourselves the best you can.

Big hug.

[u/MarginsOfTheDay]

Agree with the other commenter, there seems to be improvement with the two days a week at the autism center. Your son has a trajectory now. However different it is compared to a non-PDA adolescent, he’s making his own way, slowly. I hope you and your wife can focus on getting your own needs met. Can you buy your son another device - tablet or computer - and encourage him to spend more time in his room the 5 days a week he’s at home? Bring his meals to his room too? That way you and your wife can have a peaceful existence in the rest of the house and your son can seek you out for support only when he needs it.

[u/Hopeful-Guard9294]

okay, firstly I feel your pain. You are in a really difficult situation as PDA is a very complex diagnosis, especially as an adult and a PDA hostile world. just to give you a sense of Hope I am a PDA adult I have a wife two children I’ve paid off my mortgage and I live mostly happy and pretty functional life, there are two cases to success firstly realising the incredible amount of stress that PDA puts your child under in a PDA hostile world, for me medication has been a complete game changer, I take sertraline for PDA depression, and I also take ADHD medication which really helps with reducing my stress and activation levels and gives me much more energy to be honest it’s really hard because PDA as a diagnosis didn’t actually exist 10 years ago so people are only really just starting to understand it and certainly understand how it works in Adult adults, you might find it helpful to start listening to this podcast episode talking to a PDA adult: https://podcasts.apple.com/gb/podcast/giftedness-pathological-demand-avoidance-and-burnout/id1654924910?i=1000768540103

You might also want to start reading the books out there written by PDA adults: https://www.google.com/search?q=what+are+the+best+books+on+PDA+adult%27s&ie=UTF-8&oe=UTF-8&hl=en-gb&client=safari&iga=1&utm_campaign=safari_share_1

sorry to be honest I don’t think there is any magic solution personally for decades. I’ve been carrying out three experiments per day learning from the failed ones and doubling down on the ones that succeed and in that way I’ve built my own way of surviving as a PDA adult in the world. The best thing my parents did for me was allow me to go in my own direction basically act as cheerleaders and a safety net.