Anyone know any adults with Pathological Demand Avoidance?

[SilkStalkings]

Trying to get a picture in my head of our future as DS2 has just been referred to CAMHs re poss PDA. From the brief bit of reading I've done one would assume that most DX'd adults are in prison! Someone give me some examples of how PDA adults live/cope, positive or otherwise please. Aspie tendencies are fairly easy to spot and we have family role models on the spectrum anyway so I've not had this problem with our AS DS1.

Further to my last post, I'd just like to say right at this minute that my son is a little c*%^ and I hate him. You are probably the only people who understand and who won't be shocked or try to get me to retract it. Right now, after DH has just rescued me from doing something violent to stop another meltdown I just hate my son. And I really resent the way he makes me feel. Today has just been a yoyo and I am shattered.

He's 4 in August. I'm just indulging in a little well-earned self-pity.

I did see a little peek into his mind at softplay today though - he'd been howling all the way there re shoes, then in the lobby he took his shoes off but wouldn't give them to the woman. He hid them in the corner of the room, turned round as if to go into the main room, stopped, turned round again to get his shoes and passed them to me to hand over. It was like a little OCD ritual or something, he HAD to act out getting his way so that he could pretend it was all his idea.

Ah, shoes, my bête noire. Ds (just turned six) has always hated shoes, it has been one of our most persistent battlegrounds. I can't count the number of times he missed out on going to places because he refused to put shoes and socks on. We were persistent for such a long time but in the end realised that he would never give up, no matter what the consequence. It was destroying our family life as we always ended up one of us staying at home with ds and the other taking dd out, we never did anything together.
Tbh, the main way I have got around it is to just not bother, it's a lot better now we have given up the battle. If we are going out we just let him get in the car without them and distract him when we get there and sneakily put them on him. (i cannot believe we have to do that with a 6 yr old).
Now, I let him play in the garden without shoes and If he takes them off while we are out I just stick them in my bag and we carry on. He gets some funny looks in shops and stuff but better than him having a meltdown. When he needs to get them on for school I just put them on him normally distracting him too, he accepts that ok now.
I think ithe problem comes from several sources; I think he needs the sensory input of bare feet, also his dyspraxia tendencies make it really hard for him to get them on, and then of course there is the PDA- no wonder it is a battleground.
Silk stalkings, dont beat yourself up for feeling like that. it is so hard some days and I must confess myself to sometimes wishing we 'd never had him he just makes life so so hard.

Popgoestheweasel, has him learning to read been helpful in any way? For instance, do they respons differently to written or even pictorial demands/suggestions/prompts than hearing verbal ones? Checklists etc? I'm assuming that once they can read confidently we can programme them to some extent by leaving particular books around and hopefully listen to the author??

I know some teenagers who pathologically avoid any demand of mine. I don't know if this is the same thing.

I'm not sure how much difference learning to read has made. A visual timetable is a far better tool cos it doesn't have any actual commands on it. A list of things to do like get dressed, clean teeth, wash face is just as bad as someone telling you what to do. A picture of his uniform, a toothbrush and a flannel is better. Visual timetables have helped they just need to be kept simple.
We did try some books about friendship and anger to try and help with his very immature social skills but he realised he was being manipulated and refused to engage with them. We have left them around and sometimes they do get looked at now.

Hothead, how do you use the calendar to help? Also, who did you get your ds' diagnosis from? We were referred to Camhs 5.5 mths ago by the comm paed but the referral committee said Camhs not suitable so we go back to another paed next week. Only 14 mths since we were first referred by gp, can't believe it is time for our second appt already

Maybe with the crocs let him walk to school in them and when he sees he is the odd one out he might agree to change? that might work or you might end up with an embarrassing playground meltdown- you just don't bloody know do you?
The worst thing I find is that he is much more amenable in novel situations, so if someone new tells him to do something he often complys for them and you feel like a really crap parent then- still I'm pretty used to that feeling now at least we have dd who is very well behaved so can be a constant reassurance that it's not all our own fault.

I think crocs are very sensible shoes for school! Could you get some black ones for him?

Our paed is a neurodevelopmental one, she's referred us to CAMHs I assume for testing in a suitable venue as he won't speak to her lol and I suppose she'll review the evidence with them to decide DX. DS1's autism assessment took place over 3 or 4 play sessions with observations by a nursery nurse, SALT and Clin Psych all reviewed with the same paed.

Have to say DS2 was impeccably behaved at a Harvester restaurant last night! And at home was doing some adorable roleplaying as 'Andy Benches' (Cbeebies Andy's show), even gave me an invisible wrist communicator so I could join in. When he's nice he's very very nice... and lulls me into false sense of security...

Hotheadpaisan, you're the first person I've heard describe my dd 13 with regards to the novelty factor! If it is something that she thinks others would like to do and she's given the impression that it's special, just for her, then she'll give it a go until the novelty wears off!

Other news, my parents have said they will def pay for him to go to the hippy school if mainstream school becomes a real problem. Good to know and good to count my blessings but hope it won't come to that.

Zombie thread I'm bumping here but I have been googling this PDAS and this thread popped up. My son has a dx of autism and I've always felt that that wasn't quite right, but I have stumbled on this and read this link here and it describes my son to a T.

I'm an adult with PDA. I have a support group on Facebook for adults with PDA, their partners and also parents of both adults and children. It's proving to be a very useful tool for us all - here is the link

www.facebook.com/groups/381608325204854/

Thanks for that post. It would be easy if this condition was environmental because most parents would do anything to get their child to behave but some kids are born like this. People love to judge but not just show some compassion, judgment is so much easier.

If you have a child that never does as they're told don't you think parents try to change the environment, I know I have. I took every bit of advice I could about my son's behaviour and it all made him worse. I did think PDA was a shorthand for soft parenting but I now think it's a real problem. I'd love a child who went to school, but school isn't for my child and that's that.

I'm a PDA adult. I've never even been in trouble with the police never mind in prison, nor have I ever been in care home/institution/hospital etc because of PDA. Some of us tend to internalise our frustrations or try our hardest to 'behave' despite our brains trying to stop us doing anything. Some of us mask too so we seem 'normal' in public but let it all out at home. We can hold jobs, many of us have kids and many of us are in or have been in good relationships, we can have lots of friends and get along okay in society. Changing our environment does help to a certain degree, but demand avoidance is so pathological in our genetic make up that even if we had the whole world doing whatever we wanted we would still see demands and try to avoid them. For us, even simple things like breathing and using the toilet are demands we try to avoid, this affects our mental health too in that we become depressed because our bodies are trying to stop us doing the very things we so desperately want to do. We have many coping strategies that help us trick our brains into allowing us to do things but this doesn't always work and is incredibly exhausting. The future for PDA kids can be positive, especially if we understand that we have PDA, if might seem bleak for us during childhood but many of us seem to do so much better as adults, though we are late developers so don't expect us to start managing our own difficulties until late 20's/early 30's.