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.

auntevil Tue 24-Apr-12 18:05:38

I only know of 1 man whose friends are helping to try to get a dx of PDA.
The only thing I know about him and work is that he can only manage voluntary work ( he's reasonably high functioning) because he cannot cope with rules of the workplace.
His theory is that if he isn't paid, he doesn't have to turn up and he isn't expected to do anything that he doesn't want to do, then he can cope. Apparently 1 place put him on the books and it started to go downhill from there - no shows, late, questioning all requests etc
I know that the friends are also helping him with some life skills - at his request. Perhaps thats the way forward when an adult, recognising that sometimes you need to ask others for help - even if your parents have been trying to show you for years!

Yep parents are always the last people you'll listen togrin.

StarshitTerrorise Tue 24-Apr-12 18:18:16

Probably my Dad. He was a teacher and a bloody good one. He was always in trouble for pissing Ofsted/SLT and even health and safety off but his kids in his class always made the most progress than any others in the school.

He argued with everyone about everything and was always right. Not helped by regularly getting excellent results.

sazale Tue 24-Apr-12 19:28:38

My sister who is 36 next week has just been diagnosed with ODD but I've suspected PDA for a long time! I read about PDA when my dd 13 started undergoing assessment with CAMHS and she has been diagnosed mild/moderate ASD with traits of ADHD and demand avoidance problems. When I read the info about PDA to my Mum I though she was going to burst into tears as for the first time she started to realise that things with my sister may not have been her fault. Now 18 months later she has been Diagnosed with ODD.

My sisters story is not a great one unortunately. Ill not post it as i dont want to worry you more than you are already. I posted this to say that her story is because she spent all her life with the wrong support from family and no support from services. You also have to remember that personality still pays a part in all of it as well! Knowledge is power and you already have that by knowing that your son has these difficulties. Amongst all the drama my sister could have sold snow to the Eskimos and never got a prison sentence even though many times she should have! With the right support I do believe she would probably have been as successful as Richard Branson!.

Thanks. Yeah I probably shouldn't have watched One Flew Over The Cuckoo's Nest the other nightgrin. I know he'll be as fine as we can make him, the rest will depend on him - and he is a lovely Dr Jeckyll. He starts infant school in Sep and they will be ready for him.
Plus I have an emergency back-up plan! If things ever do start to go tits up at school I'm pretty sure my folks would be able to pay for him to go a montessori-esque private school that is a do-able drive away (because we'd never afford it!). I think that school would be good with PDA, at conning him into learning, it's a bit like paying someone else to home-ed him.

Chundle Wed 25-Apr-12 09:16:31

My dd has a sports coach who has ADHD and I suspect probably an element of PDA! He is an amazing coach and could've been a pro sportsman. He is very very talented in his chosen sport but his outspokenness and attitude as a youngster prob held him back which is a great shame. He's an amazing guy with a wife who adores the kids he coaches and gives 100% effort

newlife4us Thu 26-Apr-12 11:07:58

I'm really keen to hear replies to this one too!

DS was diagnosed with PDA very recently and from the articles I've read it seems that crime and insitutions is the norm! I was relieved to get a diagnosis but am terrified for his future. From what I've been told, however, PDA has only been recently recognized and , hence, the majority of adults with this have not had the right type of help. My GP drew a picture of the autostic spectrum and said that with help a person with PDA sits on the borderline of aspergers and the bottom end of a normal man. I did find this reassuring and am now pressing for him to get the help he needs.

I don't where you are or whether you are already aware, but there's a conference on 15th May in Bournemouth organized by the Wessex Autistic Society. The experts on PDA from the Elizabeth Newson Centre and Phil Christie who wrote the leading book on this are speaking. I'll come back with a link, if you'd like it.

I'm really hoping someone comes on here with some positive news!

I

HotheadPaisan Thu 26-Apr-12 11:33:17

Have been avoiding answering this all week, arf. Yep, my instant reaction to everything is to resist, but if I am interested in something I pursue it until it's done and done well. Can't explain why, just find it very hard to say 'yes, of course', unless the request comes from my manager in which case I do stuff pretty much instantly, very rule-bound see.

It's not all doom and gloom, I did the bare minimum to get by academically but still have an excellent career, life got better when I could make my own decisions and take responsibility for them.

Your understanding and support and making opportunities available will be invaluable for youe DC, I didn't have much of the former but ironically that may have worked out for the best as it made me quite determined, would have been easier with some interest and good advice though.

Parasaurolophus Thu 26-Apr-12 11:39:35

I don't find PDA to be a useful diagnosis at all, and it is only recognised in the UK and is not, and will not be, in the DSM. Now, I don't think the DSM is the be-all/end-all of diagnosis, but they do some very serious epidemiological work to determine what is, and is not a real diagnosis and PDA does not have that much science behind it. Also, how can an unwillingness to follow demands possibly have a biological basis? This is all about the environment.

What I don't like about it is that it places all the blame on the child, and none on the environment. Now, if a diagnosis of PDA can help parents and teachers more willing to make changes to expectations or environment, then it is great. If a diagnosis of PDA means people stop thinking of a child as "naughty", that is great.

But what I really suspect is that in these cases, the child's ability and the expectations are not aligned. I'd hope that changing the environment and teaching strategies should help a lot, and it isn't necessary to pathologise the child.

The good news is that because PDA isn't a very well understood condition, there isn't any reason to really worry about long term outcomes. If you can teach your child to learn and make friends, then you are doing very well.

HotheadPaisan Thu 26-Apr-12 11:55:55

I think understanding why they resist demands is very helpful, it's all linked to control and sensory issues and is all ASD fundamentally. DS1's diagnisis is HFA with an emphasis on demand avoidance and some other things. At the end of the day the diagnosis doesn't matter (although I'd go with ASD for lots of reasons), it's what the issues are and what to do to help that matter.

I found PDA really helpful in order to understand DS1, the strategies for dealing with DC like this and who are alos very controlling are excellent, but am now caught in that dilemma of to what extent we push him.

Not sure it pathologises the child but more provides an explanation, it's all neurological at root but these DC are a relatively rare but well recognised subgroup within ASD, understanding that traditional approaches will not work helps.

themightyfandango Thu 26-Apr-12 14:12:32

My 11yr old is very demand avoidant. He has ASD traits but is not quite Aspergers or HFA iyswim. I agree with the poster above who said with the right support a person could be at the top end of 'normal'.
Luckily my DS is now in a great school that is managing his needs well and we are trying to do the same at home.
We had an incident this morning, he was getting ready for school fine then I made the mistake of saying why don't you fit in ten minutes of music practise whilst I am getting the other DC ready. Massive mistake! He went into meltdown running around the house, shouting 'i'm lindsay lohan' confused over and over and I ended up having to drag him to the car half dressed. He calmed down by the time we arrived at school though.

We are still learning grin

popgoestheweezel Thu 26-Apr-12 15:11:31

For me, PDA has explained everything about my ds's behaviour and everything about my own too. Discovering PDA has been an incredibly useful and empowering thing.
Ds, me and my dad are all extremely demand avoidant, none of us have a diagnosis (although ds has been seen by paed who feels he 'shows characteristics of PDA'. We are now waiting to see them for a follow up appt).
Ask any of us to do anything and we all immediately resist, whatever the request or even suggestion.
My mum and dad have loads of stories of how I was as a child- they took me to the doctors and I trashed the surgery rather than submit to an examination, the time after that I kicked him blush. My dad once took me to playschool in the car and I refused to get out until he took me home and brought me back in the other car. I refused to dress or feed myself for a long time and there are dozens more examples.
I HATED school with an passion and did the bare minimum of work to get by. I could never work out how my friends could just submit and do as they were told, I couldn't understand that they didn't feel the overwhelming sense of panic that I felt. I managed to comply just enough to avoid repercussions and I ended up with mostly Bs at GCSE, which was a miracle considering the lack of work. My parents were told I 'wasn't sixth form material' and I (gladly) left that school and went to a sixth form college for A levels. I did much better there because the pressure was reduced. Fortunately, I then chose a degree with few lectures, it was pretty much self directed learning, and in the end got a 2:1. It was definitely the case that the less teaching I had the more I learnt.
For the last 15 years though I have been successfully running my own business and I truly believe I could not have worked for anyone else- it just wouldn't have worked out. Now I have people working for me- so much nicer grin So, I've never been in prison grin and I am very happy with the way my life has turned out so far.
I think the thing that made the most difference for me was my parents never putting any pressure on me. They have always been incredibly relaxed, supportive, non-punative parents and used PDA handling techniques intuitively. They say many friends thought that they were spoiling my sister and I, but compared to the children of those same friends, my sister and I look the most well balanced by a long way. With authoritarian parenting though, I am sure I would have chosen a highly self-destructive path.

HotheadPaisan Thu 26-Apr-12 15:20:10

What pop said.

popgoestheweezel Thu 26-Apr-12 15:28:09

Parasaurolophus, 'If you can teach your child to learn and make friends, then you are doing very well'
I don't think it's necessary for children with PDA to teach them to learn, afterall, learning is what every child does without even trying. What is incredibly hard for a person with PDA is to submit to being taught (very different to learning) as it happens in a conventional school. As mentioned earlier in this thread the montessori method is ideal for PDA types but schools are generally constrained by more traditional teaching methods.
I often fantasise about home ed for my dc, but I know I haven't got enough patience to handle the friction between the two of them. I'm sure if there was just ds though it would very rewarding. My other fantasy is Summerhill school but I don't think I could bear them to be away from me all term.

HotheadPaisan Thu 26-Apr-12 16:12:58

Exactly, DS1's statement talks about a tailored and individualised curriculum and the STT don't see why we won't keep his provision through to secondary where he might go to a specialist resource base. I'd expect him to follow the subjects he's interested in and be tutored at that stage and/or do a lot of self-directed learning.

Of course in the meantime we will keep on keeping on with FT mainstream inclusion with support on its way and see how it goes. So far though it hasn't gone very well.

Parasaurolophus Thu 26-Apr-12 16:58:42

I am glad that the PDA diagnosis can be helpful and I don't want to detract from that. I do hold that the epidemiology is weak and the science behind PDA is thin.

But -- if the diagnosis helps people better understand how to structure the environment, than it definitely has some uses.

A diagnosis of PDA definitely pathologises a child. It is called Pathological Demand Avoidance. Pathology is in the title.

HotheadPaisan Thu 26-Apr-12 17:04:08

Ok, they could have called it extreme. I am really enjoying Michelle Dawson's tweets atm, look her up, all about autism adovacy and research by people who are autistic. You have adults with PDA here telling you it's real, and neurological, you can mitigate it and adapt more as you get older but it doesn't disappear.

HotheadPaisan Thu 26-Apr-12 17:05:31

Actually, they do regret the label, I've heard the main researchers at conference, it is what it is though whatever you call it, can't just magic it away.

HotheadPaisan Thu 26-Apr-12 17:11:02

The real challenge is knowing what to do as a parent knowing what you know, my parents didn't have a clue but I had opportunities which I'm glad of. I have the awareness and understanding and the means to help DS1 but it's tricky to know what to do for the best.

I will not pressure or crush him but I know how easy it will be for him to underachieve/drop out and am aware the other kids know he is different. He would have been marked down as disruptive and naughty and excluded by now if it wasn't for me getting him help, he still is a bit despite all the info and reports.

It's not just for him to learn and adapt, the environment he is in has to too.

Thanks for coming out guysgrin.
I don't think one can say that because something is behavioural it must have environmental causes - if that's what you were saying Parasolofowotsit? I assume there must be a flush of adrenalin perhaps caused by a particular thought process, all happening very quickly in the brain. An Aspergers lady on MN (AmberNNNN) once described her condition as having a brain that takes in environmental data much faster and more comprehensively than NT people, so fast and furious it becomes like interence and noise, which made sense to me. Thinking about the sensory stuff, the communication delay (baby/toddler so busy trying to get through/process the day that speech and social stuff go down the priority list) stimming and focusing for a bit of blessed relief from it all etc.) If PDA is a spectrum thing then perhaps 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
In terms of my DS2's environment, he has an NT sister with no behavioural issues and an AS brother who also has none. He was breastfed, slinged, co-slept, fish oils and all the other clichés SN mums often beat themselves up about if they didn't manage to do every single one (like I did after DS1). We are a remarkably calm, chilled out household considering, though not doormats, and there is just no reason why he should behave the way he does, why he doesn't learn by rote. Why he still goes nuts on the schoolrun 3/5 days of a week as if walking to school is something we've never done and I must be a mad woman to think my little Stewie Griffin could possibly attempt it. Reading the full description of PDA was a revelation for us, it's so much more than just not doing what he's told, it explains a whole load of other eccentricities. The fact that we have naturally developed certain ways of dealing with him that match those of Newson's guidelines, that our experience with NT kids and autistic ones hasn't been any use at all. Getting a proper DX will be useful simply because nobody is going to believe any of us without one.
Newlife4us I'm going to the Bournemouth PDA conference! See you theregrin.

I wonder how people with PDA react to hypnotic suggestion. Will ask at the conference!

HotheadPaisan Thu 26-Apr-12 21:04:05

I nearly managed to go under once (CBT/relaxation thing), it was just a bit too bright and there was some other noise. I was quite tired which would have helped but was interested to see if it'd work. CBT for kids would be great.

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!

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...

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.

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.

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 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.

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

How old is he?

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 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.

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 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.

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 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.

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.

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.

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.

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.

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...

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!

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>

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.

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 14:44:28

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

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.

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/

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