New here, Pathological Demand Avoidance

[Nibledbyducks]

Hi, I'm new here and was wondering if any one else has a dc with PDA (not the electronic type!) My ds1 11 years seems to fit the bill from the national autistic society website, and from the explanation on the PDA contact group, and we've had terrible trouble with school refusal since year 3. I'm in west somerset and there doesn't seem to be any relevant special schools around here, so I'm considering home schooling at the moment. Th main problem is ds1 only really badly acts up and shows anxiety at home, so the school rarely see any problems. He also seems irrationaly annoyed by other people doing things he considers "stupid" for example last week when no one in his class knew he answer to what tree trunks are for, he actually gets anxious and angry about that sort of thing, is that common in ASD children? really just wanted to hear from other people in the same boat! it seems PDA is a pretty contensious diagnosis so looks like fun and games ahead for getting help..

Hi there Nibledbyducks. Can't help with PDA (ouch, sounds like hard work!!) but bumping for you!
Welcome to the board.

Be very careful before you go down the PDA route - autism itself can cause 'symptoms' that could be described as demand avoidance - but for very good reasons such as hypersensitivity to noise, lack of cognitive skills etc.

PDA is labelling him 'bad' before you've good to the root of his problems.

PDA is a form of autism though - it doesn't mean that a child is 'bad.'

As the Op said PDA is a contentious dx. Until a couple of years ago there was even some sceptical pages on the NAS site questioning its existence!

Persinally i do think it labels a child 'bad' as it implies that avoiding demnds is within the child's control - which in the case of autism it's not.

I was just trying to point out that before a dx barely known outside Nottinghamshire and then only known by a handful of the followers of Dr Newson is considered, other possibilities should be explored.

And if it is an ASD why did she have to single these aprticular traits out to the extent of naming the dx so? After all ASD is a triad of impairments?

Just my own personal dislike of a PDA dx.

Erm.. not quite the response I was expecting, I didn't mean to start a debate! I understand what's been said regarding ASD, but ds1 doesn't seem to have much trouble with social cues or language, but does have huge anxiety over demands. I can ask him to do something calmly and with fair warning, and he'll be absolutely fine, but being told what to do flips him out.The PDA description fits him far better than aspergers. Personaly I don't see PDA as labelling him as "bad" to me he's just anxious and panicked and happens to react with anger, and he has levels of control that vary day to day or minute to minute, the same way a child with ADHD has good or bad days.
I am going to look into other ASD issues, there's a strong liklyhood that my father has aspergers and I have quite a lot of traits.
As per the irritation with other people doing "stupid" things, anyone got any experience in common?

Have you contacted Elizabeth Newsom Centre in Notts. I know its not near you but think they have experience of diagnosing PDA. I also went to a talk at Robert Ogden NAS School which has a unit for those with PDA or similar. It might be worth trying to get in touch with your nearest NAS school I think there is one in Devon and see if they can offer advice. NAS schools offer residential as well as day places - I'm not saying thats the way you want to go but good to know there are options out there.

J gets furious when he thinks other people are being stupid or not following the rules. This is whether it is classmates or a bad driver on the road! J meets criteria for PDA but is dx with autism and ADHD and those dxs cover those features too.

Would ask your GP to do you a CAMHS (child and adolescent mental health services) referral. Good luck.

According to the PDA Contact Group's website

"PDA is related to, but separate from, what is currently termed the autistic spectrum, namely autism and Asperger syndrome".

So it's not an ASD.

"Individuals with PDA are typically socially manipulative with people, and are thus superficially socially skilled, which sets them apart from autism and Asperger syndrome."

I would move heaven and earth to avoid any child of mine being labelled PDA.

NAS website
'PDA, first described by Elizabeth Newson during the 1980s as a pervasive developmental disorder distinct from autism, is increasingly becoming recognised as part of the autism spectrum.'

WetAugust. This is a bit of a ramble, but I can't not comment.

While my 6 year old DS is undoubtedly autistic, he is high functioning and reading that article about PDA was a lightbulb moment for us. He has always been very difficult and stubborn and reluctant to cooperate with something that's no his idea. He will perseverate asking if tea's nearly ready all the while I'm cooking then refuse to wash his hands when it's cooked because he no longer wants to eat, for example. If there's a pissing match to be had, this boy will take part with gusto and you'll get very wet feet.

He is resistant to rewards - if you're offering something for him to get something done, he'd rather do without. Time outs work sometimes. Other times he'll push and push and push at boundaries. I discovered "love and logic" a few years ago and elements of that work very well with him, so long as it's kept simple and clear, since it gives some feeling control back to him, which he needs.

HIs teacher is very meticulous and ordered and usually does a great job of keeping mischievous little boys under control. Not DS1. To say there is a personality clash inducing much wailing and gnashing of teeth is an understatement. The guidelines on the PDA website have been an eye opener to the staff who work with him. We're lucky the school believes in him and wants to work with him, because some schools would have excluded him permanently by now.

Now, while I do think my child has some elements of PDA in his behaviours which do benefit from people around him taking note of the given guidelines, I don't consider that that makes him "bad". His behaviour can be very challenging. There are numerous reasons for it stemming from his autism and ADHD but they don't make his behaviour any less difficult. Understanding some elements of his psychology does help to make life easier for us all though and does help us to enjoy the bright, loving boy who is struggling with life so much, at the moment.

ouryve totally agree that PDA approaches can work even if the dx of autism is more appropriate. This book www.amazon.co.uk/Explosive-Child-Understanding-Frustrated-Chronically/dp/006077939X/ref=sr_1_1?ie=UT F8&s=books&qid=1260919815&sr=8-1 was quite useful when J was particularly demand-avoidant.

Do agree though that PDA is a less helpful or accepted dx than ASD, though obviously a wrong ASD dx would be pointless too. I reckon, ime, it's far more likely that most places would dx ODD than PDA.

Thanks for reminding me of the existence of that book. Explosive is a very good word for it.

Guess what I just bought!

Hi, I'm new, I'm Helen, living in Aberdeenshire. I'm desperately hoping my child will be diagnosed with PDA as we might just start getting some help for him. he is 10, sits on the autistic spectrum (After an ADOS test) but there is not enough evidence to diagnose him as Autistic, other than he has autistic traits, he has traits of ADHD, massive anxiety problems and also other traits. He is exceptionally violent, he has put myself and his eldest brother (16 tomorrow) in hospital. We have no life at all. He hasn't been to school for 8 weeks as he can't cope with it. I have never known a child change in a split second for no reason at all. And sometimes these kick offs can last up to 2 hours at a time. Sometimes three a day. just when you have got over one, the next one starts. I am bruised, bitten and mentally exhausted from him. He has more than one persona. He is like a cornered wild animal when he starts. He has damaged so much in our home. He is terrified of older children and children of roughly the same age especially boys. he likes younger girls who all wear spectacles. Very stereotypical. And he gets on brilliant with adults, as he talks like an adult. But he has a maturity age of about 4.
He has been like this since he was 3. But now he is bigger and stronger. And I cannot physically restrain him anymore. My 2 eldest daughters do not live with us anymore as they cannot cope with him, prefering a distance of 300 miles away from us. His brother wants an application form for housing on Monday, as he will be legally old enough to move out tomorrow and live on his own. Our whole family has become ripped apart because of this.
Everyday is a nightmare. I wake up in the morning dreading each day. I have mentioned the tame violence, there is far worse which I really don't want to put on here.
Everyday you think it can't get any worse, and invariably does.
H

Hi Helen,

Poor you. You sound like you are having a horrible time of it.

This thread is over 6 months old though so perhaps it would be better to start a new one to get new interest and more replies!?

Just a suggestion. perhaps. Asking for help in the title will get responses too as we all like to try to help

yes i have a daughter with pda she is 8 years old and we have had alot of problems with school to.the support for pda is not that good but i did phonecontact a family helpline and they were very good

him helen my name is jenny i have a child with pda she is 8 and alot of what u have just said is the same as her she is a very angry little girl but i have found that is i talk to her though a teddy bear before her anxiety gets to high it can work but it has to be in a form of play.

thank lenin already been to CAMHS and got a diagnosis of pda been told a little about it but not much about how to cope with this.been on to the school today and there is a meeting set withids, educational psychologist, and SENCO and than with myself to deside what there going to do about her education,i,m abit worried as ds has been out of school for 4 months and the mention of school brings on a meltdown.at the moment she is having about 4 2 5 meltdowns a day her anxiety is though the roof and not sure how to being it down.we have ds,s in the family with ASD but not PDA been told its alot diffenrent seems much the same to me apart from a few things.thanks for reply great to talk to someone in the same boat

Hi Folks - I have an 8 yr old with PDA. It is an unfortunate name to an unfortunate condition but I do believe that early intervention is essential as these children need a completely different approach compared with other forms of autism. Please check out Facebook for a fantastic support group run by Margaret Duncan (PDA book out last year) and teachers from Sunderland House School which operates in conjunction with the Elizabeth Newson Centre. Hope this helps and very best of luck.

Alex, this is a very old thread. You may be better off starting a new one with your support group's details.

My son is 4 also diagnosed PDA , he is also very physical , impulsive and unpredictable. On the other hand , bright, funny and utterly charming. The PDA web site is fantastic, please take alook.
If you're child has PDA far from avoiding this diagnosis, I feel it is essential. PDA methods really do help, understanding the cause of the behaviour gives insight to an otherwise baffling state. School must be on board too, they need to use PDA methods for children to cope in any way.
Good luck all .