Subset of as? pathological demand Avoidance syndrome

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A friend sent me alink to this disorder which has been viewed as a subset of as in the uk for a while evidently. http://www.autism.org.uk/about-autism/r ... drome.aspx

Has anyone heard of this? My daughter really fits the profile, especially the part about slipping into imaginary worlds, getting obsessive over people, As well as the excessive mood swings and anxiety.

My daughter also had the language delay and rapid catch up described. I don't know if this is seen as a co-morbid or subset or something different entirely.

One part of this my daughter is lacking is the social piece- she is not social with others at all unless she knows them well.

And btw I think the name of this syndrome makes it sound terrible.

I had not heard of this but it fits me to a remarkable extent.

I don't understand why PDA is considered to be on the autism spectrum.

This is very interesting.

Yes, that name is awful. It sounds worse than ODD, name-wise, I could just imagine what a U.S school would do with that diagnosis, just based on the name. They really need to rename it.

I also have trouble understanding how they want to redefine it so it fits into the spectrum based on how they describe it. I cannot tell if the social/imaginative play definition would be less stringent than for straight up autism, (kind of like how the definition for AS and PDD_NOS are less stringent) or just if these traits lag to the extent of qualifying under the current "classic" guidelines, but not as much as they would for some other autistic people. (Like if a child does imaginative play, but not in a reciprocal way or something like that) In the US they are trying to get rid of all those "extra" categories, so I don't even know if they would consider including these traits.

The notion of "demand apraxia" (I am not using that other horrid name---so I made my own name for it) does make sense. I could definitely see where it would fit in. It might not even be a control thing but an actual inability to follow a command, kind of like regular motor planning apraxia.

The thing about Autism, is it is such a large umbrella term for so many kids who really are different from each other. I know the DSM is moving away from this approach, but I do think it makes sense to try to find grouping subsets that help lead to more customized solutions/strategies for things that crop up.

My son is a different "flavor" of Autism than this but I do think there is merit in trying to suss out the different types.

my 13 year old has a diagnosis of autism and PDA.

these are good resourses

http://www.amazon.co.uk/Understanding-P ... 072&sr=8-1

http://www.pdacontact.org.uk/

[youtube]http://www.youtube.com/watch?v=z_ZDdyMDCa8[/youtube]

because before the PDA diagnosis they were given diagnosis of atypical autism.

like with the beginnings of aspergers, a researcher noticed a bunch of children with atypical autism diagnosis were very similar in their traits and studied it more and came up with the concept of PDA.

They are just like other autistic kids but with more imaginative play (but not like NT imaginative play) and more tantrums and more sensory problems.

my daughter goes to an autism school and there are a few other PDA kids there, they tend to have the most challenging behaviour and poorest outcomes but are definitely on the autistic spectrum.

I came across PDA a while ago, when I was first researching ASDs and other things which might be the cause of my daughter's behaviour (ADHD, ODD, PSD, etc). Then we went down the AS route and the school and ed psych find it useful to see her in this light. But it certainly does not explain everything and she doesn't have a diagnosis yet. She is far from typical (who is, but she's way off), although she ticks most of the boxes for AS. But, the thing is, so do I, but there the similarity ends. I was a dream child and my parents still see me as perfect. I don't think I'm perfect, I'm far from it, but I've always done as I was told. My daughter never does as she's told.

Her mood swings are dramatic, to the extent that I've worried that she might be bipolar. She has extrememly imaginiative play, has been going through the terrible 2s since she was 18 months and she's now 6. She also becomes obsessed with people rather than the typical obsessions for people with AS. There are also attachment issues, resulting in hoarding. But, she's not a bad girl at all and strangers pass comment on how lovely she seems (and she is delightful really). PDA explains so much, which AS alone can't.

We've tried absolutely every behaviour management tool possible. She just does not connect behaviour with punishment or lack of praise. If we shout (which does happen I admit) she gets frightened. If we take a toy away, she gets really upset. Most other kids, in these circumstances, will jump to attention and get on with it. But, she just continues with the behaviour that has caused us to lose our temper or take a toy away. I could go on and on about what we've tried. Praise works better than punishment, but we seldom have cause to praise, on a normal day. And it doesn't take long for her to get fed up with reward charts and sticker books. We've also tried visual scheduling, but she's not interested and gets bored with it after a few days. In all honesty, I feel she knows fine what she's supposed to be doing (e.g. getting dressed, the clothes are right in front of her), but for some reason we can't work out, she just won't. For me, if she had AS, minus this negative stuff going on, life would be just fine.

My husband and I are stumped and we sat for several hours last night talking through our confusion. I was crying and he was saying that he didn't think she would be able to hold down any sort of job, whilst she is so contrary and determined not to do things she doesn't want to do. I can't even foresee her passing any exams, due to her nature, not her ability. She's actually intelligent enough to be a doctor too, which makes it so frustrating for us. He thinks she's going to get a diagnosis of ODD, but I told him she definitely has ASD traits and has significant sensory issues.

So we've agreed and PDA is coming to the fore again, in our thoughts anyway.

WOW...I wonder if we were in the UK if my son would get that diagnosis. He fits it to a T! I just am conufsed casue I have heard all of that about Apergers as well. But my son has always had imaginative play, sure it was reinacting a tv show or something he had seen, but it was imaginative play. He also had catch up communction, he also argues and tries to change or aviod any and all demands made on him. He NEEDS to be in control. Following a direction as it is given seems to be virtually impossible for my son. He HAS to put his own twist on it at all times. To the point of spiting himself. He also know all the rules, but doesnt feel he needs to follow them, just other people.

Interesting!

As far as I know, there is only one place in the UK that does assessment for PDA. It's not a common diagnosis at all. I'm going to speak to my husband tonight about it, as we're looking at private assessment just now (NHS is far too slow here), but we're getting nowhere with that either. Might as well go with our instincts and see someone who specialises in PDA.

My daughter is the same about rules. She will come out of the line at school (they line up when the bell goes), to tell girls that they should be out in the line - breaking the rule in order to tell them they're breaking the rule. Simple directions also get twisted into something that suits her. Even at art & crafts workshops, she has to do her own thing (sometimes better) or not at all.

I'm a little confused about the development milestones and I'm not sure if it's a red herring and perhaps unrelated. My daughter was talking in sentences at a year (way ahead of her peers) and walking at a year, no delays at all. The problems really started as soon as she started walking. She refused to take hands, wear reins or sit in her buggy and, being only a year old, had no road sense (not that she has much now). That was such a stressful time and should have been a trigger for us to seek help. As it turned out, she was almost 5 before we asked anyone's opinion.

Last edited by Mummy_of_Peanut on 05 Mar 2012, 4:52 pm, edited 1 time in total.

I had not heard of this before now, either. Very interesting.

Mummy of peanut, what you wrote reminds me so much of my own daughter. She also does not connect any result of her behavior to the behavior itself. She can also be quite adept at deflection, which I have been told cannot occur with as. If you ask her a question she does not want to answer she will go mute. If someone she doesn't know speaks to her she will not look at them or respond, even when it is an authority figure. This has me quite concerned. She also is obsessively attached to me, constantly checking to see where I am, constantly in need of voice contact at all times. If there is a cause for her to be seperated from me she gets stomache aches and feels physically sick. She also forms strangely obsessive attachments to a few peers and becomes possessive of them. She commends things to be done a set way. She is bossy with peers, telling them how to play, behaving like their parent much of the time. She does not play with them but almost uses them as her toys. She is very imaginative and writes songs which she sings in a strange voice. She also zones out quite a bit.

While she has an as dx, I know there are parts of as she doesn't fit exactly. When calm and anxiety free she can be quite pleasant and cheerful. But this is the exception not the rule. Most times she is agitated, anxious, and irritable.

What struck me about the PDA is the comment about claiming they can't do something they don't want to do. My daughter can physically freeze, complain of muscle pain or that she can't move her body parts. She has been checked for seizures. It seems to be in her mind.

Mama to Grace, it really explains it so much better than AS, doesn't it. My daughter goes mute too. Often, she will not respond when asked about her day or what she had for lunch and she sometimes doesn't even say, 'Hello' to visitors. When she was younger, we could not get her to say, 'Thank you'. She would say nothing instead. I've actually fallen out with my mother-in-law over this. She blames me for not teaching my child manners, even though she'd witnessed my many attempts to teach her. I'm sure other parents don't have to go to the extremes I go to. Most kids pick these things up by osmosis. She hasn't, due to being on the spectrum and refuses to, probably because of these PDA traits. As for the obsession with other people, at the moment it seems to be OK. But, a few months ago, she was obsessed with my best friend's son. She had to wait for him coming out of school every day, even if we were going to an after school class. He started to pull away from her. Thankfully, he's no longer an obsession, but I'm watchful for it happening again.

As well as the demand avoidance, my daughter has issues with concentration and switching tasks, so it can be hard to tell if she's having difficulty due to these things or if it's purely the demand avoidance at play. At school, she's very pleasant natured (which is a learnt coping strategy in PDA kids). She doesn't always get on with the task and she has a sticker book and personal targets, which isn't standard practice in the school. But she's never cheeky or disruptive and tries to do her best there. The teachers never have a need to speak to me. But, as soon as she comes out, the 'Hyde' character can appear. There will have been no issues giving her cause to be angry with me about. There I am standing with a huge smile and arms out and she might growl and throw her bag at me. It must look to others like she doesn't want to be with me. The irony of the situation is that she hates school and wants to spend more time with me. We're preparing to homeschool her, but understandably I'm really apprehensive. And now that I'm reading more about PDA, my confidence in myself to take on the challenge is waning.
We've actually had the Jekyll character for a couple of days and, when she's like that, there's no better feeling. There's seldom an explanation for the change. We've changed her school uniform to make the dressing thing easier. She wears trousers and a polo shirt on gym days and a blouse, pinafore and tights on the other days. On the gym days, she seems to be much more compliant. She has sensory issues and, although her clothes don't irritate, she does complain an awful lot. So, until summer (when she gets to wear a checked dress and never complains about this) she's going to be wearing gym day clothes every day. This is helping a lot and mornings have a whole different atmosphere. But, it could just as easily change back to the way it was.

I hope you manage to find methods to deal with your daugher better too. xx

Wow this sounds a lot like my late, oldest son. When he wanted something there was no telling him no and he would go after things with wild obsession like light switches and buttons and knobs when he was little. Nothing I did could stop him. I know he had BP but he had other behaviors that our Psychiatrist thought could have been a form of Autism and what many people just though was him being a big brat and I was a bad parent. I used to say, "take him home for a night"