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Anyone know any adults with Pathological Demand Avoidance?

(56 Posts)
SilkStalkings Tue 24-Apr-12 16:57:00

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.

user1499421397 Tue 06-Feb-18 22:56:08

This is a very helpful thread! I’m convinced my 10 year old daughter has PDA and I fear for her (and my) future. It’s been a tough ten years which have become more exhausting as she gets older. I’ve booked an appointment with the GP to start the process of diagnosing which will take years from what I can see, but wanted to ask a couple of questions if anyone could give some advice please.

Does a diagnosis of PDA hinder your career opportunities? Sorry if this is a dumb question, I’ve only started reading into this tonight 😕 Also, is a diagnosis essential or could I try to adapt the way we handle everything by doing lots of research etc. and hope that improves things, as I now realise my way of handling her has probably made things worse 😔

My daughter is very intelligent, she’s currently being home educated and she has her heart set on going to a grammar school but, obviously, getting her to do her work can be very challenging even though this is totally her plan 🙈. She has the ability to get in if she can get overcome avoiding the effort. My biggest fear is that she could do very well in education but not be able to pursue a career of her choice. She wants to be a barrister (put all those years of arguing practice to good use) but I wonder if she would be able to with a PDA diagnosis. TIA x

Aimee1989 Thu 04-Jan-18 17:47:37

I am currently fighting for a diagnosis of PDA as I fully identify and I wouldn’t mind sharing my story with anyone who would like to find out not ebut I’d rather not put it out on the net right now so if anyone would like to contact me please PM me and ask anything you like. There may be a lot of bad but there’s also a lot of good so don’t give up hope!!!! I’m a single mother and I struggle but I’m still doing it 6 years later!!!!

Desperatedan69 Tue 11-Jul-17 20:32:52

Oh my goodness, this describes me entirely, you and I have exact same life patterns, I also totally resonate with the above post of thinking if I'm a volunteer I won't get trapped in having to do stuff.

It's not that I don't like doing stuff, I just like to have the choice about it.

1805 Fri 30-Jun-17 16:35:29

popgoestheweezle

Thank you for your story. My dd has a dx for ASD, but I highly suspect PDA is in the mix too. She dislikes school too. I have always said she needs to leave school at 16, go to college, and become self employed, so it's great to hear it can happen! I hope your business is going well. I am sure you are determined to make it work!! Good luck and thank you.

rikoryuki24 Mon 26-Jun-17 16:43:59

And if anyone wants more information on PDA, how it is for adults and what it is in general then feel free to view my blog: dragonriko.wordpress.com/

rikoryuki24 Mon 26-Jun-17 16:42:19

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.

Rabblemum Tue 06-Jun-17 17:27:00

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.

Rabblemum Sun 23-Apr-17 13:43:41

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.

WingleBerry Sun 04-Aug-13 13:36:59

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

https://www.facebook.com/groups/381608325204854/

Zynda Mon 15-Jul-13 23:29:52

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.

HotheadPaisan Mon 30-Apr-12 14:44:28

Message withdrawn at poster's request.

SilkStalkings Mon 30-Apr-12 14:25:55

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.

HotheadPaisan Mon 30-Apr-12 13:40:02

Message withdrawn at poster's request.

HotheadPaisan Mon 30-Apr-12 13:39:19

Message withdrawn at poster's request.

sazale Mon 30-Apr-12 13:25:32

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!

SilkStalkings Mon 30-Apr-12 13:24:09

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 Mon 30-Apr-12 10:14:16

Message withdrawn at poster's request.

HotheadPaisan Mon 30-Apr-12 10:13:14

Message withdrawn at poster's request.

popgoestheweezel Sun 29-Apr-12 23:02:57

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 biscuit

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 nowgrin at least we have dd who is very well behaved so can be a constant reassurance that it's not all our own fault.

Nigel1 Sun 29-Apr-12 21:26:10

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

HotheadPaisan Sun 29-Apr-12 19:05:46

Message withdrawn at poster's request.

SilkStalkings Sun 29-Apr-12 14:41:33

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?? <<grasps straws and strokes Mrs Beeton's household management bible with hopeful expression>>
Am thinking of doing a visual timetable come September as the staggered part time starts for summer babies might be confusing and I am hoping to have more work so it won't always be me on the schoolrun.

HotheadPaisan Sun 29-Apr-12 09:28:24

Message withdrawn at poster's request.

popgoestheweezel Sun 29-Apr-12 09:17:36

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 sad he just makes life so so hard.

HotheadPaisan Sat 28-Apr-12 21:54:15

Message withdrawn at poster's request.

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