Jump to content
  • Announcements

    • Kris

      Depression, Mental Health and Crisis Support   06/04/2017

      Depression, Mental Health and Crisis Support   Depression and other mental health difficulties are common amongst people on the autistic spectrum and their carers.   People who are affected by general mental health difficulties are encouraged to receive and share information, support and advice with other forum members, though it is important to point out that this exchange of information is generally based on personal experience and opinions, and is not a substitute for professional medical help.   There is a list of sources of mental health support here: <a href="http://www.asd-forum.org.uk/forum/index.php?showtopic=18801" target="_blank">Mental Health Resources link</a>   People may experience a more serious crisis with their mental health and need urgent medical assistance and advice. However well intentioned, this is not an area of support that the forum can or should be attempting to offer and we would urge members who are feeling at risk of self-harm or suicide to contact either their own GP/health centre, or if out of hours contact NHS Direct on 0845 4647 or to call emergency services 999.   We want to reassure members that they have our full support in offering and seeking advice and information on general mental health issues. Members asking for information in order to help a person in their care are seeking to empower both themselves and those they represent, and we would naturally welcome any such dialogue on the forum.   However, any posts which are deemed to contain inference of personal intent to self-harm and/or suicide will be removed from the forum and that person will be contacted via the pm system with advice on where to seek appropriate help.   In addition to the post being removed, if a forum member is deemed to indicate an immediate risk to themselves, and are unable to be contacted via the pm system, the moderating team will take steps to ensure that person's safety. This may involve breaking previous confidentiality agreements and/or contacting the emergency services on that person's behalf.   Sometimes posts referring to self-harm do not indicate an immediate risk, but they may contain material which others find inappropriate or distressing. This type of post will also be removed from the public forum at the moderator's/administrator's discretion, considering the forum user base as a whole.   If any member receives a PM indicating an immediate risk and is not in a position (or does not want) to intervene, they should forward the PM to the moderating team, who will deal with the disclosure in accordance with the above guidelines.   We trust all members will appreciate the reasoning behind these guidelines, and our intention to urge any member struggling with suicidal feelings to seek and receive approproiate support from trained and experienced professional resources.   The forum guidelines have been updated to reflect the above.   Regards,   The mod/admin team
Sign in to follow this  
pingu

PDA

Recommended Posts

pingu   

Hello everyone.

 

I hope i'm still welcome. :tearful:

 

i hope you are all ok. I have completely by accident come across something which seems to explain my kids in some way in varying degrees and wondered if you would be able to help...? >:D<<'>

 

Pathological demand avoidance syndrome (PDA)

 

Has anyone heard of it? got it? has anyone with it in their family? :whistle:

 

It was whilst watching Young Autistic and Stagestuck the other night and it was mentioned on there, and the little girl with it reminded me of my sons behaviour at that age. and the levels of avoidance both my sons will go to in order to not do something is unreal.... anyhow, i know there is already a topic for the programme but i didn't want to hijack that thread.

 

i have googled the disoder and have ended up with a fact sheet which explains my boys.

 

:robbie:

 

If you remember kieran is home educated and was diagnosed with aspergers syndrome in 2004. but the reason i no longer find the time to come here and post, is because it really has been a full time job for 2 years and i get no time to "reflect" on what i see as his permanamt avoidance to complete even the most basic of tasks. Whilst my eldest (if you recall) is still undergoing assessment... for???? (even they dont know) they thought he had aspergers too, but his social communication is too good for that, then it could have been ADHD but he seems so calm sometimes, then it was OCD because he was obbsessed with stuf - (brilliant imagination) - now they are looking into Bi polar because of his exessive mood swings, and his belief that he is count dracula.... :wallbash: and......He is nearly 18 now, and is still avoiding his GCSE's (the paperwork i found stuffed everywhere yesterday suggests he'd rather not think about the exams)

 

Anyway i just wanted to know if anyone else has had any experience with it in case i'm barking up the wrong tree.??

 

thanks. and take care. :thumbs:

 

shaz x

 

:notworthy:

Edited by pingu

Share this post


Link to post
Share on other sites
Kathryn   

Hi Pingu,

 

Of course you're still welcome. Hope the home edding is going OK still. :)

 

Here's some information about PDA from the NAS website in case people want to know a bit more:

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp...581&a=17634

 

Here is more detailed information about the child with PDA in school

 

http://www.pdacontact.org.uk/noframes/guidelines.shtml

 

K x

Edited by Kathryn

Share this post


Link to post
Share on other sites
justine1   

This sounds just like my ex!I suspected he has Aspergers but lots doesnt fit but this(PDA) fits 100%.Never heard of it either until mentioned on the C4 show.

Share this post


Link to post
Share on other sites
Tally   

I've just read the NAS link, and it sounds a LOT like my ex as well. He was diagnosed bipolar, and I always felt this diagnosis did not make sense as he did not seem to have the manic episodes and seemed to have a lot of unrelated symptoms as well. He was investigated for ADHD as a child, but not diagnosed, but I always felt this made more sense - in addition to some kind of mental health issue like Borderline Personality Disorder. The link says that PDA can be confused for ADHD, and it's also possible he had two conditions. Interesting to read about that, as I am still trying to understand things and that might help.

 

ANyway, sorry Pingu that I did not answer your question. I don't have any experience of PDA in children, but I can see that ASD does not quite fit your son, and clearly neither do the other things that have been considered. I hope you can get some answers and get him the right support.

Share this post


Link to post
Share on other sites

omg that is my 4yr old! She avoids doing anything and strops / mood swings abnormally for her age group, and is very obssessive about other peoples belongings! She was very slow to talk and then all of a sudden at nearly 3 the words came tumbling out like a fountain

 

And a lot of her dad, although he can't do the role play thing! Ask him to do something and he won't do it til 'he is ready' drives me batty!

Share this post


Link to post
Share on other sites
Kathryn   

I'm hugely sceptical of PDA as a disorder in itself and not sure what possible help a label which pathologises ordinary learned negative behaviour could possibly be to the individual, or those supporting them.

 

K x

 

 

Share this post


Link to post
Share on other sites
Sally44   

The Elizabeth Newson Centre, part of Sutherland House School Nottingham can assess and diagnose for this. It was EN who found this pathological demand avoidance behaviour that is prevalent in some children on the spectrum and put forward the idea that it was a subtype.

I also wondered about it for my own son as he too has imagination and can come up with all kinds of reasons and excuses for getting out of doing whatever is asked of him. But, along with the avoidance behaviours he is also very self aware and very judgemental of his own behaviour, so he does tend to get very upset/angry at whatever the cause is, and then he becomes angry/upset with himself for being angry/upset about the original trigger. And that seems to diffuse and re-direct him.

I don't know if the avoidance is directly related to an inability to cope with change, or task demands or expectations or even difficulties with language processing. But with my own son he would even refuse to do things he liked and 'no' was his automatic response to everything including 'do you want an ice cream'.

My own son can get immediately flooded with emotions and go from zero to errupting in a matter of seconds. And he even gets distraught about things he doesn't even know if he wanted to do. I posted in this forum about my son threatening to hurt himself ie. stab himself with a knife. If you read that post you will see what is so confusing about the behaviour. He was so upset with himself that he wanted to stab himself, yet when I told him if he really wanted to go with dad then I will take you in the car - but then he got angry and upset again screaming "I don't know". So maybe making choices is also a major problem?? Who knows. Sometimes I just don't have the answers, it doesn't make sense, it isn't a typical response to an incident and no-one involved seems to have any ideas at all.

Having said all the above, although this is a behaviour I have seen and been worried about since he was a toddler, it is not consistent behaviour. So the same incident can get very different responses - but I suppose I see that in other areas as well depending on how he is on any particular day taking into account all the different dx and how they affect him differently day to day.

I know that PDA is not accepted across the medical community. But there is a parental support group as well.

But from my understanding, and from having spoken to parents of a child with PDA it is not a parenting issue. And I presume that if PDA does exist, that whatever the cause it is most likely is on a spectrum too.

Share this post


Link to post
Share on other sites
westie   
I'm hugely sceptical of PDA as a disorder in itself and not sure what possible help a label which pathologises ordinary learned negative behaviour could possibly be to the individual, or those supporting them.

 

K x

 

My son has a diagnosis of PDA and no his behaviours are not as a result of bad parenting (and I am by no means saying we are perfect parents). He has many autistic traits. His behaviour is not (now) as extreme as the child on the program but he still has 'moments'. We (us as parents and the school) have worked very hard to change behaviours and after 7 or more years we are seeing a change - this of course may be transient and when he moves to secondary school I fear a return of many of the negative behaviour patterns he has shown since a very early age. I do agree that he had fallen into a pattern of negative behaviour/ response to demands or axniety raising situations that I think he learned at an early age becuase he did have some communication and the throwing/ tantruming/ aggression became his first response to any situation he could not deal with. It took a long time to change this and a lot of effort. I have attended NAS earlybird courses, webster stratton courses, bonding courses and used books and other info (cause support from other services was a long time coming). Look beyond the behaviour as you have to do with a child with autism and see what is causing it, the cause is extreme anxiety and stress because the child has a neurological condition which causes them to feel unable to cope with even the simplest demand. It is also accompanied by the sensory and other issues experienced by many with autism.

 

another point about PDA is that not all children show the extreme behaviour/ tantrums as the girl on the program (or my son when younger)

 

Many children diagnosed with AS show these behaviours (perhaps not to this extent admittedly) so is this also the case for them?

 

I as a parent of a child with this condition think that the PDA diagnosis helps a lot, as you understand that it is important to "pick your battles" and there are ways to place demands on a PDA child without making them so anxious, and you also appreciate that you have to be flexible and adaptable and understand that traditional "parenting" or behaviour management programs may not be as effective, as is the case with approaches used for children with AS. It also helps teachers and other staff supporting the child to better understand how to deal with and manage the child.

 

Have you visited or researched the Elizabeth Newson Centre and/ or spoken to the staff there? They are not some crackpot backstreet organisation making up labels - they specialise in many communication disorders and have published papers and literature about ASD, PDA and other speech and language disorders in many respected published journals.

 

The national co-ordinator for the PDA forum has actually spoken to Lorna Wing regarding PDA and the conversation (in which Ms Wing recognised and acknowleded the condition) led to the writing of the information on the National Autistic Website and as a result the increasing interest in the topic.

 

Remember AS was a little recognised condition a few years ago and many of the skeptics said that was not a "real condition"......

Edited by westie

Share this post


Link to post
Share on other sites
westie   
I'm hugely sceptical of PDA as a disorder in itself and not sure what possible help a label which pathologises ordinary learned negative behaviour could possibly be to the individual, or those supporting them.

 

K x

 

Ha, got a bit carried away (though leaving my earlier post as that is what I think)

Can you explain a little more about what you mean cause on reflection I may have impulsively responded as a parent who feels judged as being 'no good at the job' rather than looking at your comment with a more detached point of view so perhaps I have taken your comment in the wrong way....

 

btw If any adults do wish to be assessed for PDA then I understand that the Lorna Wing centre do assess adults for this condition. The contact details for them are:

The NAS Lorna Wing Centre for Autism

Elliot House

113 Masons Hill

Bromley

Kent BR2 9HT

Tel: +44 (0)20 8466 0098

Fax: +44 (0)20 8466 0118

Email: elliot.house@nas.org.uk

 

Share this post


Link to post
Share on other sites
westie   

oh and there are a couple of facebook groups relating to PDA, one of which has been set up by a young adult with a diagnosis of PDA - so they may be able to provide more personal explanation of their experiences of PDA Pingu (in response to opening post)

 

think its called

PDA (pathological demand avoidance) awareness group

 

 

Share this post


Link to post
Share on other sites

its good to know that PDA kids can improve. having read the NAS info that is K. aspergers never quite fit (imaginitive role play, eye contact are excellent) but everyone is in agreement there is something going on. she's our most challenging placement by a long way, and nothing we say/do gets us any further than managing the behaviours for a short period of time. her tantrums/rages are absolutely exhausting and go on for hours at a time. last night she screamed at the top of her voice for 2 hours because she didn't want to go to bed. the same happens when we ask her to put on a particular pair of shoes/item of clothing/go somewhere/do anything. how can a 4 year old scream for hours over putting her knickers on?! its incredibly dispruptive. i arrived home one day when she was in a rage and i could hear her screaming in her bedroom from 8 houses away, goodness knows what the neighbours think we're doing to her. she is utterly non-cooperative. a typical play session goes along the lines of -

 

(pretending to be a chef)

K - what do you want to eat? we have cake and we have sausages

me - i'll have sausages please

K - no, you can only have biscuits

me - ok

K - what colour cup do you want?

me - i'll have the blue one

K - no... only green.

 

and on and on it goes. today she was riding around on her scooter in the kitchen, we said if she wanted to do that she had to take it outside. cue screaming rage throwing scooter across floor. she makes up terrible stories blaming other people for things (in the scooter exaple she would then tell someone that i had thrown the scooter and wouldn't let her play on it) and is generally a nightmare to get to do anything.

 

there's no doubt in our parenting skills fortunately, and if we can't deal with it most other people dont stand a chance with her.

Share this post


Link to post
Share on other sites

My word 4 hours! I thought it bad DD3 was going on and on about a cake for 45 minutes incessantly even though she was continually told no because she didn't eat her dinner (this is a daily thing with food for her)

 

She too take hours to go to bed and is always an emotional rollercoaster, difinuitely agree with the pick your battles thing, however DP cannot do that with her, he can't cope with giving in and she can't cope with him saying she has to do something she doesn't want to

 

Me well I am in the middle, so I go to work for some peace!

Share this post


Link to post
Share on other sites
westie   

I can relate to that play session description! When my son was assessed at the Elizabeth Newson centre they sent me a very detailed report which includes some of the conversations he had with the therapists as part of the assessment and there were a few which read similar to the one you have posted - it seems very PDA like to me!

 

I went to the PDA conference in Nottingham this year and they showed us some clips they had filmed during assessments of children with PDA (obviously with permission!)

 

On clip was about 10 minutes long and it showed the psychologist and the child, and the psych was trying to get the child to do a floor puzzle which put the pieces in numerical order. The psych (who was very experienced and used to dealing with children like this) tried loads of different techniques to get the child to participate and at times (when the pressure from the psych was off) the child did appear to be starting to take an interest but as soon as the psych made any sort of movement or spoke the child would back off, and appear to be rude, and boisterous and confident and cocky I suppose but when the psych approached them they shrank away and you could see at that moment just how vulnerable and scared they were (as the 'demands' were coming thick and fast in his eyes, and then at the point where the Psych got near I think they feared being physically made to complete the task which was a bit too much for them) . The puzzle did get completed but at no point did the child go over and put ANY pieces in themself although they clearly knew which order they should go in. The psych got some responses from him using indirect methods such as pretending to not know which number went between 3 and 5 for example.......

Edited by westie

Share this post


Link to post
Share on other sites
westie   

I would also say that whether or not you want a diagnosis if you have a child that shows 'demand avoidance' and other traits associated with PDA (who is not really responding to the usual AS/ behaviour management techniques) then it is well worth looking at the 'handling guidelines' which Kathryn posted a link to earlier, and the info on the pda contact forum and giving it a try as it may work (sometimes!)

 

A good book to read which many of the parents of PDA childrne have found useful is "The explosive Child" by Ross W Greene.

 

Share this post


Link to post
Share on other sites

we no longer suggest K play with anything, since whatever we say we get the answer 'no, i wont do that. i want to do X'. when shes driving us nuts we resort to putting her in the living room with a stair gate on the door and go to the other side of the house so we can't hear her. she'll then either throw a fit and scream until we come back, or happily wander off and play on her own for hours. no clues on predicting which way it'll go each time. we wont be going for a diagnosis at the moment, theres no benefit to it until she starts school apart from for our peace of mind and we already know shes 'challenging' whatever the label. she does fine at nursery because the only thing she actually has to do each day is eat lunch! they can't get her to do anything when they ask either, but since they rarely ask it isn't much of a problem.

 

it seems to be escalating at the moment, but at least the one redeeming thing is it all goes round in a circle and tomorrow she could wake up happy and be angelic. for us the key is in backing right off. if i put her dinner in front of her and say 'eat it or not, i dont care and walk off' she'll munch her way through the whole lot. if i put it in front of her and say 'eat your dinner up' she will refuse to eat it. is just rather annoying having to watch what we say so much, and very frustrating when we slip up and say the wrong thing.

Share this post


Link to post
Share on other sites
Sally44   

Correct me if i'm wrong, but my understanding of PDA is that the child does not respond well to the high level of structure and routine that a typical ASD child might flourish under. And it is the 'being told what to do' that is the problem. With these children sometimes giving a 'choice' works much better. Whereas children with ASD might find 'choice' something harder than a definate 'now you do this' command.

I don't think my son has it. I suspected it when he was a toddler. We had a couple of awful years and I had no idea what was causing the absolute rage.

Am I right in thinking that children with PDA don't feel bad about their behaviour??

 

I wonder whether many of the behaviours that fall under the spectrum are actually 'normal' up to a certain level, and then above that level them become part of a diagnostic criteria for something. In the same way that anxiety is normal. And heightened anxiety is typical for ASD. But when anxiety is the over riding state the child is in then they may get a diagnosis of an anxiety disorder on top of the ASD.

 

To me avoidance behaviour can be seen in every child. But with PDA it is the pathological part of it that is obvious and hard to deal with.

 

My son used to be very controlling with play, to the extent that he had to almost direct it like a film and everyone had to say and do what he said. If anyone went off script all hell would break loose. However he has now developed beyond that because then he had to repeat what he had seen on TV and it had to be that way to control the outcome so that it was predictable. Now he is more spontaneous.

 

One thing I tried with my son which worked and helped to motivate him with play and interaction was Play Therapy. I found a play therapist that worked with children with ASD. And she had set up a group (which a new comer would be aiming towards joining the group). Every child had a play therapist and initially they just worked together. And the Play Therapist joined in and followed whatever the child was doing. There was no demands and no talking to begin with. But eventually the child would begin to enjoy the adult being with them and playing along with them. Then the therapist, still following whatever the child said or instructed would begin to narrate or play back the words and emotions being used.

Anyway, it took a while, but eventually the therapist would be able to introduce something new into the play and see if the child could cope with that item, or the change in direction of the play. I'm not saying my sons interaction skills are very good, because they aren't. But they are alot better than the demanding replay that everyone had to adhere to.

Share this post


Link to post
Share on other sites
Kathryn   
Ha, got a bit carried away (though leaving my earlier post as that is what I think)

Can you explain a little more about what you mean cause on reflection I may have impulsively responded as a parent who feels judged as being 'no good at the job' rather than looking at your comment with a more detached point of view so perhaps I have taken your comment in the wrong way....

 

Hi Westie,

 

I'm at work and don't have time to respond fully now, but I just wanted to quickly say that I did not mean to imply that it stems from bad parenting or that there is no such thing at all. Sorry for any offence caused by my somewhat clumsily expressed opinion.

 

I am just questioning whether it can be seen as a separate condition or whether it should come under the ASD label. Don't the majority of children with ASD exhibit some degree of demand avoidance due to anxiety? That's a genuine question, not a challenge, by the way, and I'm interested to know the views of people who have thought much longer and harder about PDA than I have.

 

K x

 

Share this post


Link to post
Share on other sites
Am I right in thinking that children with PDA don't feel bad about their behaviour??

i dont know whether it applies to PDA but K views herself as entirely seperate from everyone else. we are all here to meet her needs/whims and she is not bound to any social or emotional rule that she places on anyone else. she shows no remorse for her actions apart from feeling sorry for herself when she is punished. if you question why she was punished she will tell you that it is because someone else did something. she wont admit to doing anything wrong herself, its ALWAYS someone elses fault. today she dropped her beaker in the car and started screaming at the wind that it was its fault! if you explain to her she has missed out on something because she behaved badly she says 'ok, i'll do it right next time' and wanders off perfectly happily. of course she doesn't do it right next time and round it goes again. her response to being told off is invariably 'but i wanted to' and thats that. you can't move her off that point no matter how much you explain its upset someone etc, all that matters is that she wanted to do it, so she did.

 

this is very scary when you move it from a 4 year old and imagine her as an adult with that attitude

Share this post


Link to post
Share on other sites
pingu   
this is very scary when you move it from a 4 year old and imagine her as an adult with that attitude

 

which is the problem i have with my 17 year olds son nobbynobbs. very worrying is his avoidance, and failure to see he wrong doing. he seems to be his worst enemy some days..

 

but i also have to pick up on kathryns post which says

 

I am just questioning whether it can be seen as a separate condition or whether it should come under the ASD label. Don't the majority of children with ASD exhibit some degree of demand avoidance due to anxiety? That's a genuine question,

 

because i believe this is the question...

 

my youngest is diagnosed with aspergers but shows so many signs of pda too.

 

thanks for all your replies by the way it makes very interesting reading.. :notworthy:

Share this post


Link to post
Share on other sites
tjw   

hi westie

great advise from a mum who knows, and has first hand expereince with pda, i do hope the information you have provided helps others with partners, children who they think may have pda.

takecare

theresa x

Share this post


Link to post
Share on other sites
emmasmum   

We've wondered about this for our daughter aswell.

 

At 14 she will still curl up on the floor and say she's tired (in the lounge/bedroom) to avoid tidying her room/doing homework etc.

 

Is it PDA or is it lazyness? I don't know - she isn't influenced by any threats of punishment.

 

She also doesn't appreciate the impact of what she does/says on others - if you say she's upset you she just says "but I wanted to...., but I like...." but I put that down to the Aspergers.

 

I didn't mention the lying on the floor thing when she was assessed for AS - I didn't know about PDA at the time and to be honest am embarrassed by this behaviour and fear it will make people less inclined to want to help her.

 

 

Share this post


Link to post
Share on other sites
JsMum   

I researched PDA too when J was younger especially due to his control/power behaviours, and I felt that a lot of the symptoms of Oppositional Defiant Disorder was also very similair to PDA but there was quite a few things in the description of PDA didnt match with J due to his Autistic Behaviours, but I have read that a child can be dx with Both Aspergers Syndrome and PDA together.

 

I did request funding from local Authority for him to have an assessment but our LA refused to fund it even though I had the backing from his Nurologist who was seeing J at the time, in the end he was referred internally and placed on waiting lists in the end I took him to see a private child psychologist who gave J urgent treatment via Art Therapy and councilling because I was struggling to cope with his behaviour as conventional parenting techneques where not working.

 

I would from Js needs say he needs a very different management and its now proven specialist management his special school except boys with PDA so it is recognised there, but when he was in mainstream school no one had ever heard of it, it is not a usual dx in our area at all, so it would be very difficult to access support which is why I didnt go down the road of assessement in the end.

 

All though I found quite a bit information on PDA what I struggled to find was books that gave parents and teachers behaviour management spersifically to help children with PDA.

 

J is a boy that needs to have some chioce so he can feel in some control, but he cant have too much because then he is scared and he becomes more anxious.

 

I think in J there is more Aviodant behaviour but the deep root cause is because he is going to stuggle with a task that is causing him sensroy issues, so then you could say he is avioding the sensory so then it would be related to sensory.

 

Js very defiant and oppositional which has now been recognised as him avioding a situation or been afraid of failing so he uses behaviours to aviod.

 

I understand that AS was a syndrome unknown at one point so you made a good point there and that PDA is going down the same path.

 

I dont really share J has ODD anymore because it brings negativity and it doesnt get to the root of his problems and cause, and there absaloutly NIL support for mums/dads/gaurdians to deal with children with severe behavioural problems.

 

I have tried many parenting programmes and they dont meet the needs of very complex behavioural difficulties.

 

The LA give this DX but then do a good impression of an olympic runner, and your left to deal with it.

 

I feel if it where PDA they would do the same.

 

I will ask his school how they meet the needs of children with PDA and if any are dx.

 

JsMumxxxx

 

Share this post


Link to post
Share on other sites
Sally44   

I think it is the total demand avoidance which is hard to understand unless you actually see it. When my son was younger he would just avoid everything regardless of whether he even liked it or not. I gave the example of an ice cream and that was a real incident. I asked if he wanted an ice cream he said said 'no'. So I put them back in the fridge. Then he had an almight tantrum because he wanted one. But when I offered it he didn't. And that behaviour was with so many things. In the end I had to change my language and began giving choices. And I think all of us as parents do change our behaviour/language etc to accommodate their difficulties. And we don't even realise we are doing it. It is only someone looking from the outside in, or watching a video that can see how we have adapted ourselves and family life.

 

Anyway, because my son is very self aware, he does capitulate. So he might initially avoid, but then he comes round and apologises and then gets upset with himself. So I feel that although he had PDA behaviours when younger, that he now does not fall within that diagnosis. He also could give very good reasons for not doing things such as 'my legs and arms have melted, i'm deaf, let me first ..., i've just got to ..., i'm the parent/teacher and you are the child', 'you are my butler, you are a rubbish parent I don't have to listen to you, etc etc the list went on and on.

 

So what I think must be so difficult as a parent of a child that is continually showing this behaviour is how not to get into his head to head deadlock every time. How to give discipline (or even simple instructions) that doesn't turn into a fight every time. And how to be consistent when all day every day you are having this constant battle. It must be so wearing. And if you just leave them to their own devices, or send them to their room as 'punishment' they have then achieved what they wanted 'ie. no demands placed on them'.

 

I think it is a valid behaviour/disorder or whatever it is called. I think it is on the spectrum and at the higher functioning end but the combination of avoidance and lack of social empathy/understanding makes it a very scary behaviour. An autistic child might use others to get their needs met, but a child/adult with PDA takes it a step further because they can also be charming to get what they want and manipulative and then absolutely turn and be vicious. And because it does respond differently to the traditional idea of 'structure and routine' then you do need some kind of behavioural expert input because otherwise home and school life can become unbearable.

Share this post


Link to post
Share on other sites
Sally44   

The other thing I would add is that my son also used to vomit when given demands, or when I took a toy off him etc. This seemed to die down at around 4+. At school he always got headaches, felt sick, stomache ache etc. During the last two years at school he has again begun vomitting. And I think this is all tied in with severe anxiety. However it is not anxiety you can see in his face or other behaviours. It is a knee jerk reaction like the fight or flight response. There is no way he controls it. It happens within seconds. So the avoidance behaviours tied to anxiety maybe tied to this fight or flight response. The PDA child is responding in the fight mode whether that is physically or verbally.

 

What do other parents do when their child is avoiding something. I used to either give a choice, or just say it had to be done. All hell would break loose. He would go to his room to calm down with the understanding that he still had to do the thing I had asked. And I would try to limit these head on episodes because otherwise he would spend all day every day in his room. So I would pick the fights and I would also try to word things in a way that he did not understand he was 'winning' and I was giving in. And I tried to focus on what I was attempting to achieve ie. for him to do the task so that it was a positive outcome if he did complete it eventhough it happened later because we'd had to negotiate on when.

 

I must admit that there were times when I would just pick him up under my arm and physically move him if he was refusing to come outside, go inside, get in the car, leave the park, go to the park etc etc. Sometimes that backfired and he would vomit. And that is easier to do whilst you can lift the child. Now he is 9 that is not an option. And I have always said that if he ever understood that if he refused to go to school now that I would not be able to physically get him out the house, then I think he would refuse. Can't wait to see what puberty brings!!

Share this post


Link to post
Share on other sites
pingu   
Can't wait to see what puberty brings!!
speaking of which ....how do i get him out of bed... ive been trying for 2 hours and its the same thing every ###### day :wallbash: He's late yet again, and everyone else is rallying around to telp him and he's just laid up there refusing to get up/pretending to be asleep..... GGGrrrrr sorry i know i shouldnt waste my time or energy on frustration but for goodness sake......... :whistle::wallbash:

Share this post


Link to post
Share on other sites
Sally44   

I let my son watch one of his favourite 30 min programmes during breakfast. That was the only thing that got him out of bed. Then after that has finished (and hopefully he has eaten something during that time with constant reminders and cajoling to eat his breakfast), I immediately turn off the TV. Because if he even sees the first second of the next programme then we have trouble. On good days he turns it off himself, if he doesn't I immediately do it. Then I brush his teeth and he puts his coat on and waits for the taxi.

Is there a TV programme or some music he likes which he can listen to ONLY during that breakfast slot?? You can record something to re-play during that time.

Share this post


Link to post
Share on other sites

DP's parents could never get him out of bed as a teen, as a working adult he has always managed to get himself out of bed, but he is often 'not well'

 

I guess with age they accept they 'have' to do somethings maybe?

Share this post


Link to post
Share on other sites
this is very scary when you move it from a 4 year old and imagine her as an adult with that attitude

 

that will change it will just take her longer to becomelike an adult, she might never be an adult, but ive found with PDA you come to a sort of aggrement with yourself that you will still avoid stuff but try you best to do it in a less hostile way.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

Sign in to follow this  

×