Here some suggested organisations that offer expert advice on SN.

Anyone know any adults with Pathological Demand Avoidance?

(48 Posts)

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.

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

That is good, definitely worth a look, MS is not working for DS1 atm.

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

Novelty is great, if we can get him out of the door, ironically it's another reason we didn't think he had ASD.

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

We have the wrist communicator! Pixel from Lunar Jim is in control apparently.

I am going to get black crocs, sod it, it's summer anyway.

<fails all ABA classes>

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!

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

Oh and he can't read, too demand avoidant to learn. But he's only just six so I'm not too concerned for another year.

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

pop, the calendar just shows him what happens when, so when helpers come or it's his birthday, it just seems to stop him asking loads of questions. I don't know why he crosses each day off but he does.

We were sent to CAHMS then back to comm paeds and eventually to a neurodevelopmental paed for a diagnosis of HFA/AS, high anxiety, sleep disorder and sensory issues. We also saw Daphne Keen and she mentioned the high levels of demand avoidance consistent with some with ASD. She also said kids like this were a relatively rare but well recognised group within those with ASD, the report was so helpful in understanding him.

Disaster today, no school so far, no shoes at all, crisis. This has been brewing for ten days now.

Mine is good with novelty, as long as it's not accompanied with a load of demands. We're about to see to behaviour analyst just to try and get straight in our minds what we want to do and how we think we can best help him. Things are not good atm.

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

Silk, DS1 (nearly six) still can't read but a calendar with big squares is good, we draw pictures and he crosses the days off, has really helped.

Most of all, get a break, this takes all of you and more. We now have regular helpers and life is better.

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

In order to get him out of the house today he will only have crocs on, no idea what I am going to do about school tomorrow. This has come back from nowhere.

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

Ah softplay, for months and months DS1 would not give his name, he was Fireman Sam, eventually we compromised on him spelling it out.

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

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.

HotheadPaisan Sat 28-Apr-12 18:09:31

How old is he?

HotheadPaisan Sat 28-Apr-12 18:00:21

It is hard. Total refusal with socks and shoes today - so he didn't go for a cake and toy shop visit, it's not as simple as delaying school. Anyway, I got really annoyed, sad, frustrated, disappointed he's missing out for something so 'trivial'.

Got a behaviour specialist lined up to come and observe but I think it's simply the case that he just couldn't get over it today so that was that. He went in the garden (unheard of) just in crocs so I am going with that tomorrow no matter how cold it is. It's better than not going out.

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.

HotheadPaisan Fri 27-Apr-12 12:34:23

Yep if they could see the areas light up when demands are made they would automatically disguise them, offer choices, minimise the stress. But they don't so they don't.

I would rather my child be 'pathologised' than have everyone he meets think he is deliberately badly behaved, lazy or rude which surely they must do. Or ill brought upblush.

PurplePidjin Fri 27-Apr-12 11:46:49

And very very apocryphal anecdote...

A very friendly lady who works in my local shop has a son with a dx of PDA (possibly among other things?) I run into her every few months for a brief chat, we first chatted when I worked in a local pub around 8 years ago when dc was primary age. I last saw her 5-6 months ago. She confides in me both because she's very friendly and she knows what I do for a living.

After 8 years of SS, she is enjoying being a parent and the company of her son, who is mid teens. They have both learned strategies to cope, he has some education behind him, and she generally appears far less stressed and harassed now compared with then.

Like I say, a very distant acquaintance who I see briefly and rarely (apart from a couple of decent chinwags from opposite sides of a bar years ago!) but from the outside/body language etc seems very positive...

popgoestheweezel Fri 27-Apr-12 11:31:32

Silkstalkings, pretty much same environmental factors here; breastfed til 11 mths, fish oils, calm household, very well behaved sister, no upheavals of any kind (no death, no divorce, no health problems, never even moved house), close knit extended family, good diet, limited screen time, regular bedtimes, but still he goes nuts over nothing.

Every little element of life can provoke a meltdown, we still have to dress him, wash his face and clean his teeth, every bath/shower provokes a meltdown, he won't wash his hands, won't put on his own shoes, constantly hurts his sister for no logical reason, the list goes on...

This morning the walk to school was accompanied by screaming, shouting, crying, punching and kicking. I am almost immune to the stares and comments of others but it is still hard to bear. Apparently it was because his shoes were getting wet in the rain but really its the nervous anticipation of another day of school related demands. When we got to school he said ' I don't want to stay here on my own without you, I'm going to get shouted at. I'm not like all these other children, they don't like me' sad

For me, pathological is exactly the right word: "characterised by an unhealthy compulsion". It is a compulsion and it is unhealthy, for me and for ds. Silkstalkings "the concept of demand is a particular neural pathway formula (or something more scientifically accurate, ykim) and theirs has a little alarm on it or maybe it's shorter and gets processed quicker than everything else" I think this is a great way of describing it. The problem with childhood is that your entire life is taken up with doing as adults tell you and that neural pathway alarm is constantly ringing!

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