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

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westie

Pathological Demand Avoidance Syndrome

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westie   

Pathological demand avoidance syndrome, does anyone know what it is?

 

It is a pervasive disorder related to, but significantly different from Autism and Aspergers Syndrome according to Elizabeth Newson (the person who first noted that a group of children who had been diagnosed with ASD - non typical or with PDD NOS had a number of common behaviours/ traits and who discovered (some 20 years ago )PDA

http://adc.bmjjournals.com/cgi/content/full/88/7/595

 

the national autistic society have a slightly different opinion:-

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=306&a=3352

 

I am interested to hear others opinions on PDA

 

Regards

 

:bat: :bat: :bat::bat: (these are from J, my son - he really likes choosing smilies!)

Edited by westie

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westie   

I do not know where you live, but some people are very skeptical about this diagnsosis.

The checklist fits my son 100% so there has to be something in it!

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jayjay   

Our son has got a diagnosis of PDD-NOS and a lot of what has been written could be matched to him aswell i would be interested in reading up a bit more on this.

jayne xx

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westie   

try the PDA website

 

www.pdacontact.org.uk

 

for more information, and you can also get guidelines for handling and education of PDA children

 

The PDA forum is good too

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Lucas   

I've never heard of this before, but my at-a-glance opinion based on what little information I have is that it simply doesn't exist: it's nothing more than a differing interpretation of elements found in other conditions. There doesn't seem to be any justification to mark it out as a seperate diagnosis.

 

I'm pretty much siding with the NAS on this one.

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westie   

Well I am not sure what to think really

 

I do think that if guidelines for dealing with the behaviours for PDA are different, and do work better that following guidelines for ASD, then it may be a useful distinction.

 

But equally it feels like you are excluded from a lot of services and from autism support groups (that is my feeling - not that I or my son have ever been banished from any autism support group or forum because of this diagnosis, its more that I feel like I do not 'fit in' :huh: )

 

I wonder if I could ask the NAS if I could attend their earlybird course?

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westie   
Well I am not sure what to think really

 

I do think that if guidelines for dealing with the behaviours for PDA are different, and do work better that following guidelines for ASD, then it may be a useful distinction.

 

But equally it feels like you are excluded from a lot of services and from autism support groups (that is my feeling - not that I or my son have ever been banished from any autism support group or forum because of this diagnosis, its more that I feel like I do not 'fit in' :huh: )

 

I wonder if I could ask the NAS if I could attend their earlybird plus course with a daignosis of PDA?

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westie   

Hello

 

This week myself, my husband and my son went to the Elizabeth Newson centre in Nottingham for an assessment to confirm the diagnosis of PDA, This centre is expert in Autism, Development disorders and communication disorders. It was a long assesment and very thorough. Tney carried out a number of test and assessments relating to communication and social aspects of his personality and they confirmed that the PDA diagnosis was correct and they are sending us a comprehensice report about our son, which will include ways to help him etc. It was excellent and we are so glad we were given this opportunity to visit this centre.

 

I still have no positive opinion on whether this is separate (but related) to ASD or just one part of ASD but I think that their advice and opinion is very important and valid.....

would still like to see more people's opinions !!!

 

Debbie

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jlp   

Hi

My son was diagnosed with AS at 4 and after the diagnosis his consultant said she felt he was more towards the PDA side of things (he's 6 now).

 

I can see that in him at times but after initially reading the NAS article (and it was just after diagnosis so my eyes really picked out the 'often poor outcome' bit in the NAS article) it scared me (bearing in mind I've only read very limited stuff so couldn't say I'm an expert). AS is something I've come to know and understand and changing everything (eg they say children benefit from changes in routine as opposed to AS where obviously they like routine) I've learnt was just too much so I've veered right away from PDA.

 

It it was screamingly obvious that that was what he had I suppose I'd have to persue it but at the minute I just feel that I can't cope with any more after the AS diagnosis if that makes any sense at all.

 

What a good opportunity you got to discuss it at the Elizabeth Newson Centre - I'd probably be interested in finding out more at a later date and it would be interesting to see if they think G could have this, no one has suggested we take the possible PDA thing further, just suggested that these traits conribute to making him extremely difficult to manage and 'oppositional' (I spotted the word in a report about G and it sums him up rather well)

 

I'm sorry I'm rambling, I should be in bed - I suppose my opinion is (atm) that PDA may well exist but I'd prefer it not too!

Edited by jlp

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westie   

ditto

and thanks for your comments

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madmooch   

OMG, I posted a while ago saying i was concerned about my daughter but it didn't fit autism, well i've just read the bmg journal piece on PDA and it fits her to a t, apart from the passive early history.

 

 

Clare

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Elanor   

I'm sceptical about PDA - too many of the behaviours described are indistinguishable from Aspergers, and I'll side with Professor Tantum on this (who I've met and have a lot of respect for).

 

The PDA diagnosis doesn't seem to have reached orthodoxy - ie having a great deal of peer support amongst the expert community, or being demonstrated with a range of scientific studies. That being the case, I am very hesitant (and more than a little worried) to see the 'condition' being suggested in the context of our children.

 

There's something very perjoritive about PDA - ie the kids know what they're doing, and they are just being nasty and manipulative. Haven't we heard all this before?

 

 

Elanor

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darky   

im interested to know more about this as my daughter has been diagnosed with pdd-nos. its very hard to accept, because the pdd-nos just seems like a lip service dx because they cannot pigeon hole her. my opinion of course!

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Trayo   

Well, after an initial diagnosis of HFA, we went to see anothe paediatrician at the Ed Psych's request and we have now been told that Em has PDA in conjunction with Asperger's.

 

I have a few issues with the PDA and I struggle to see her massive meltdowns as anxiety attacks, and in fact trying to treat them as such is proving impossible as she will accept no calming or communication in any form when in this state. We had to make her rom a "safe place" anyway, so we still take her there when it happens.

 

PDA does fit her perfectly, but our paed has a problem in diagnosing it as a condition in itself; in fact, she said she considers it poor practise because some peple then stop looking for other causes of behaviour and thus mniss a bigger picture. For this reason she diagnosed PDA as a complication rather than a separate condition.

 

We only got this diagnosis 2 weeks ago so we are still very new to it, and having just about come to terms with HFA as a probable cause it feels twice as hard being told otherwise. However, I am thrilled that we saw this paediatrician as she was incredibly thorough, vey reassuring and has offered as much help and advice as we want. Preschool alreadty work on her social problems and she has had an IEP now for some time to help socialise her better. This should now just be transferred to school in September, with us applying for a statement currently.

 

Reading the PDA contact group, of which I am now a meber, has proved very scary indeed. I think our saving grace is the early diagnosis, as most there didn't get a diagnosis until much later. By having this already we stand a chance of it being dealt with correctly from the start. Without a doubt, this will be vital in ensuring she has a smoother transition from preschool.

 

I am still rather overwhelmed by all the advice and information, and right now I am rather frightened of my ability to cope (or not, as is more appropriate). I have a very good friend with a severely autistic daughter of 15, and as Em shares so many of these traits (the lack of ability to communicate thankfully not being one) it fills me with dread. I struggle to physically handle her now; what will she be like in 5 years' time?

 

Anyway, the list of signs of PDA fits her perfectly, but there is so much about Asperger's that fits also, so I am pretty happy with the dual diagnosis.

 

I alway sstruggle to see ADHD as a proper condition, but that';s not to say I don't believe it. I have limited knowledge of it and the 2 children I do know wth it have parents who use it as an excuse. One boy (6) was kicking the hell out of someone's car parked near school and his mum stood there watching him, saying "Oh, he has ADHD, I can't help him and it isn't his fault". As she said this she was trying to bribe him away with a can of Red Bull and the promise of a computer game. Go figure... I know she is a shocking example and probably the type who causes such doubts in the condition.

 

IU say this not to rubbish those whose children have ADHD; it obviously is a condition because certain ways of handling it work better than with just simply "naughty" children. I use this just as an example to illustrate why so many people will doubt the existence of PDA. As a condition on its own, I have doubts but can clearly see why it is included in such dianoses as Asperger's.

 

I've probably alienated all who have to live with the effects of ADHD now. I'm not good at this! But I imagine that's how parents of kids with PDA feel at the moment, while it is still quite new to the growing list of behavioural problems. In time it will be accepted but for now there is scepticism.

 

I think it's really important to remember that all parents of children with behavioural or social dysfunctions feel bad about the diagnosis, especially if they are themselves sceptical

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munty13   

It's the first time I've heard of PDA. Surely though, PDA should be recognised more as a coping mechanism for AS, rather than being a syndrome in its own right?

 

Considering myself to be AS, I can see a lot of my symptoms described in PDA.

 

At the last company I worked for, the boss told me people considered me as "weak," and this is why I attracted bullying from my colleagues. In my mind though, I always imagined myself as strong, because of the amount of inner strength I needed, on any given day, to haul my ass out of bed in the morning, or answer the phone, or answer the door, or go to a cafe to order a sandwich and coffee, or walk down the street, or get on a bus... Every day was a fight with the anxiety. Everyday turned into a battle with people. Makes me feel sad thinking about it. :crying: Surely though, it's human nature to want to avoid anxiety?

 

I hope the diagnosis for PDA does not take over from AS. I think it will make things even more confusing for everybody.

Edited by munty13

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Munty - Your response really made sense to me. I am still trying to get a diagnosis myself, and I can see elements of both AS and PDA in myself. While it seems a useful distinction to make in terms of how someone reacts to things (if someone tells me I have to do something or asks why I haven't done something I get so anxious that I either switch off altogether, turn into a gibberring wreck or get really confrontational - none of which are useful), it would make a lot of sense if it's a coping strategy for AS, and would explain why my symptoms seem to encompass both diagnoses.

 

In terms of the AS diagnosis being superceded by PDA, as far as I am aware, AS will shortly be encompassed within HFA anyway...

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Trayo   

It's the first time I've heard of PDA. Surely though, PDA should be recognised more as a coping mechanism for AS, rather than being a syndrome in its own right?

 

Considering myself to be AS, I can see a lot of my symptoms described in PDA.

 

At the last company I worked for, the boss told me people considered me as "weak," and this is why I attracted bullying from my colleagues. In my mind though, I always imagined myself as strong, because of the amount of inner strength I needed, on any given day, to haul my ass out of bed in the morning, or answer the phone, or answer the door, or go to a cafe to order a sandwich and coffee, or walk down the street, or get on a bus... Every day was a fight with the anxiety. Everyday turned into a battle with people. Makes me feel sad thinking about it. :crying: Surely though, it's human nature to want to avoid anxiety?

 

I hope the diagnosis for PDA does not take over from AS. I think it will make things even more confusing for everybody.

 

 

Munti,

 

This is why I was pleased that our paediatrician said she considered it to be a bigger picture rather than a solo diagnosis. The information she gave me was telling me how to help my daughter to cope with it, but at the same time she gave me the Asperger's leaflets saying that we needed to use them together. We don't have a firm Asperger's diagnosis yet but she says it is the most likely outcome when we next go for assessment. Her argument for treating PDA as a symptom as opposed to a condition in its own right was for exactly your reasons - that so many children with possible AS will be missed, with PDA being given as a diagnosis without further investigation. My friend has a severely ASD girl and she recognises most of the PDA traits in her daughter, except for the communication side. J has very little speech and avoids eye contact, but in other ways does her very damndest to avoid following demand.

 

It's a rocky road, isn't it? In time they may miss so many people with AS simply because they looked no further than PDA.

 

I'm only now beginning to understand how scary this all is as a parent; I can't begin to imagine how much strength is needed as an actual sufferer.

 

Be proud of yourself for being strong and going to work. Even as a non-AS person I would be horrified at his comments, because in effect he is giving people the right to bully you simply because you don't fight back enough. There is no excuse for bullying of any kind, whatever life someone leads (and especially in those who don't have the choice in their lives)

 

It makes me very sad. I see preschoolers even now picking on Em because she's easily provoked and they can weedle their way around adults who don't understand Em.

 

Hold your head high. You know you're not weak. If being strong means picking on others less so, who wants to be strong anyway?

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trekster   

I have a few questions out of interest...

 

1, Whats the difference between Oppositional Defiance Disorder and PDA?

 

 

2, Could a reaction to a diagnosis of autism be known as PDA?

 

 

3, Could PDA be hidden CPTSD or PTSD?

 

 

4, Is PDA the same as Anti Social Personality Disorder?

 

 

5, How can a diagnostician distringuish between the above mentioned disabilities and PDA?

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I'm pretty much siding with the NAS on this one.

 

Hi Lucas

 

I'm not sure what you mean by this. This is on their website:

 

http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx

 

I can't see anything where they say they don't agree with it.

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Shnoing   

Even if PDA seems to be seen as part of PDD-NOS (http://adc.bmj.com/content/88/7/595.full) or even as part of the autistic spectrum (NAS recently http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx), I cannot see any common grounds between ASD and PDA, apart from that it seems to be the opposite in many ways. Anxiety as described in those texts needs a strong "central coherence", which I (as an autie) totally lack: I just cannot remember to be anxious, even if it would be necessary (in dangerous situations).

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Sharn   

My daughter fits every thing on the list for PDA except passive baby.I have always had to use a gentler non confronting aproach with her as none of the ADHD or ASD ideas have worked.I do think there has got to be something in this as a seperate diagnosis.From what ive read on ODD so called profesionals say it can be caused by parents not giving possitive reinforcement etc well I have been v possitive etc etc but my daughter was like it from birth totally oppositional all the way through on everything even things she likes. Anxiety definately plays a massive role.I think PDA and ODD and ADHD are definate conditions but the problem we have is that there are behaviours that present due to bad or lack of parenting that are similar behaviours. Professionals and society lump them together,like when they used to say autism was caused by depressed or switched off mums, which we know is rubbish. People used to say load of rubbish about additives in food and hyperactivity and when i took my daughter off them at 18 months people thought i was weird, but it definately made a difference, and now research confirms that. I think if you have a diagnosis of ASD you dont need to worry do I have PDA , its only the people who feel ASD dont fit and not primary diagnosis and opposition to the extreme.I agree some of it fits both but no one wants this, but sometimes you need to know what it is for your own sanity.

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Pathological demand avoidance syndrome, does anyone know what it is?

 

It's another one of these sub-syndromes that sits within Aspergers Syndrome but which never quite explains the parent syndrome in itself and never really quite gets to the core of the problem, rather like a

which can be zoomed in on forever thereby denying the observer the truth indefinitely ensuring we're always stuck in a state of uncertainty about ourselves especially when it comes to seeking out solutions to our problems.

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trekster   

My counsellor feels that PDA can be part of another disability in some cases CPTSD.

She has worked with autistics and PTSD survivors.

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aspie2   

So now i am wandering if I might have PDA. Here is how it goes. First I was Diagnosed with ADHD and put on ritalin (Age 6), then I was diagnosed with Aspergers Syndrome (age 18), than the doctors at social services said I had PDDNOS. If a doctor can make one mistake (the diagnosis of ADHD) who is to say that another doctor might not make mistake also.

 

After just reading about PDA it seems it is linked to PDD, having been diagnosed with PDDNOS sevral years after being diagnosed with Aspergers Syndrome, I would like to know which it is I have.

 

Growing up

My mum always said I was a trouble maker, I clearly remember I was very good at getting my own way by the time I was 4 and a half. I used to throw my mums china and crystal if I dident get what I wanted, by the time I was 6 I had masterd the begining stage of verbal manipulation. I only threw my mums china and crystal when I was board after that.

I went threw a lot of abuse as a child, from the so called father, this started when I was 3 and went on till I was 13 and stabbed him in the arm with a pen and threatend to stab him in the neck if he did not go away.

I was constantly bullied in school, and I stayed away from other children, I was phobic about Violence by the time I was 6

I have been diagnosed with many Learning difficulties, most of which are not a problem for me, but the dyscalculia, I will never be able to get a job because of dyscalculia.

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Mihaela   

Does anyone here have a diagnosis of PDA or know somebody who has one, or suspects that they have it? I have a friend who was diagnosed with AS. Those close to her feel that the diagnosis doesn't quite fit, and that her therapy was of a type applicable to AS. I now pretty sure that she has PDA, along with some AS traits (quite typical) which helps me understand her a lot better than I did. I'm particularly looking for anything about adults with PDA, and find that nearly everything I read relates to children.

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Laddo   

Hmm, interesting. This sounds kind of applicable to me, too. I have often thought that my diagnosis of AS didn't quite fit either. I would be interested to hear more from an adult with PDA too

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Mihaela   

I can perfectly understand how PDA traits can co-exist with AS, but a specific diagnosis of PDA (often previously lumped in with PDD-NOS) needs to be recognised in order to provide suitable support and therapy - which is more complex and quite different to the AS approach. I see PDA traits in myself, and I suspect they contribute to my executive dysfunction, but I don't satisfy Newson's diagnostic criteria:

  1. Passive early history in the first year, avoiding ordinary demands and missing milestones. (NOT SURE. I was quiet)
  2. Continuing to avoid demands, panic attacks if demands are escalated. (YES)
  3. Surface sociability, but apparent lack of sense of social identity, pride or shame. (YES generally, but I do have a sense of shame).
  4. Lability of mood and impulsive (led by need to control). (NO)
  5. Comfortable in role play and pretending. (YES generally)
  6. Language delay, seemingly the result of passivity. (SLIGHT)
  7. Obsessive behaviour (YES)
  8. Neurological signs (awkwardness, similar to autism spectrum disorders) (YES)

When comparing my PDA traits with those of my friend, it becomes obvious that I don't qualify. My most accurate diagnostic label would seem to be female-type AS. Unlike AS, PDA affects equal numbers of girls and boys, which suggests that it may have some kind of neurological link with female-type AS. As knowledge of PDA (aka Newson's syndrome) is still in its infancy, I find it quite frustrating as there's a lot more I'd like to learn about it - especially how it affects adults, and also when it's combined with female-type AS.

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Livelife   

I've never heard of this before will read the information on this will be interested to find out exactly what this is

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