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Pathological Demand Avoidance Syndrome


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I don't have professional experience of caring for a child with PDA but I have a daughter with Asperger's Syndrome who has been acknowledged to show strong traits of PDA. I am also a member of a Facebook group for children with this condition and have picked up a few tips there.

Do you have any particular challenges you would like ideas about?

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Ok great... just a few tips really... I have no diagnosis but some strong gut feelings... and let's just say i need to limit the meltdowns that this child experiences as they really cant be good for him(or anyone nearby)!

We have some sensory issues... loud noises, socks feel bumpy, coat has to be done in the exact right way - all of these we have no trouble handling and know how to get around them before they begin.

Mum and Dad see what they would class as scaled down versions of our issues although it took quite a few discussions to get there. They have, over time, simply reduced their demands on him and therefore in their environment he is much more relaxed although Mum comments that he is very needy and wont even let her cook food as he needs her to be with him (this is also timed with a parental break up too)

At first I did feel that this was just 'challenging behavior' but my behavior strategies are simply ineffective and actually making melt downs worse.

 

So - if he is asked to work with a teacher we always get refusal. I have more success getting him to work than my TA. He wants to negotiate everything. e.g.

I ask him to work with me, he comes to me normally and will say ' I don't want to, I'm not going to, my legs hurt, my legs are tired etc. I offer him a chair to rest his tired legs. ' I'm not sitting down/ my legs aren't tired/ I'm not doing that etc and with each breath he gets more agitated and cross. he will complete the activity but the measure of success depends on if he forgets he didn't want to do it. Giving a reward after the event is a real no go... I ask him if he would like to put a point in the tub or if he would like someone else to do it for him..he can choose. This does work.. mostly....

Lining up, having to carry his bag, the end of the day, having to sit with people on the carpet, a new face in the class (I don't like you, why are you here...made me chuckle that one although not to him..).. all could start a debate and meltdown.

We never debate with him but offer him options, I try and get him to choose rather than me telling him what to do but its pretty exhausting as I am always getting him to do what I want without him knowing.

He recovers from huge meltdowns amazingly quickly - full on meltdown before lunch yesterday but then ate lunch happily.

A small class with a TA and a CT... I feel that we should be coping! and to be true we are, at the start of the year we had to (once a week perhaps) just abandon the classroom and leave him and one member of staff just cooling off... him recovering and her ignoring but being there.... we haven't had one of those yet this term (got to hold onto the positives)

He has friends although unless he is well managed he often falls out with others and one of the boys is clearly scared of him...

Bit frazzled really, normally at this point in the year I feel a sense of control in my jolly chaos....not sure if I am there yet.

I discovered the PDAS whilst prepping for a multi disciplinary meeting for an ASD diagnosis. I read the information with utter clarity for this child, it was like it had been written about him...Mum and Dad are as on board as I can get them but I will not be making any movements further for quite some time... and if I mentioned any sort of label I they would wash their hands of me, I understand this but at the same time I need to support a child who has a long journey ahead of him... and year 1 will be a mess if I don't try and work some magic on this needy young man...

Strategies/ Language/Resources or any commentary on your children with this diagnosis would be gratefully received!

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I have a Yr 2 boy perhaps boys with this syndrome or aspects of it and I am findig it really hard to be able to get him involved in learning. I avoid confrontation, if I can, demands and am becoming very creative in getting him to do things taht he doesn't want to do. But writng and reading? He HATES them

 

HELP!!!!!

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I have a Yr 2 boy perhaps boys with this syndrome or aspects of it and I am findig it really hard to be able to get him involved in learning. I avoid confrontation, if I can, demands and am becoming very creative in getting him to do things taht he doesn't want to do. But writng and reading? He HATES them

 

HELP!!!!!

I am feeling your pain.... try reading this

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

Edited by Fairyjojo
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The first thing that I try to remember is that the higher the anxiety or overload is, the more demand avoidant a child can become. Creating an environment which offers calming activities and opportunities to withdraw can help a great deal.

 

One thing that helps my daughter is to let her choose her own targets and next steps. This is now written into her statement. It's also clear that, if she thinks that taking a step means she is committed to maintaining her progress, she will hold back. She has to know that she isn't committing herself to a repeat performance.

 

Have you had advice from your autism outreach teachers? They could perhaps make some suggestions after observing him. I would also suggest that you ask for some extra TA support if you're struggling or even request an EHC assessment. It's clear that this child needs a considerable amount of support and, the better his needs are met, the less avoidant he is likely to be.

 

Lots of children with PDA or other forms of autism find it very helpful to spend a few minutes at the beginning of the day, talking through the timetable, any changes to the normal routine and anything they might be worried about or not want to do. This can also give you an opportunity to find out about something planned that he is expecting to find difficult and remove it from his day to help him be more cooperative during other activities.

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Thank you Upsy Daisy for sharing this.

There are so many things I would like to do but without the parental support (believe me when I say we have come a long way here already!) I am a little stuck. I am the SENCo at school so in some respects I am the best person to be dealing with this child but my role also takes me out of the classroom; something that also provides anxiety!

I love the idea of a meet and greet.. the children all have individual meet and greet already and then some playground time, but he would be better placed talking through the visual timetable 1:1, thank you. The struggle I have is that he isn't going to want to do his number and phonics intervention or any other adult led activity... where does that leave me trying to educate him? I know I cant educate him until he is comfortable and secure but with a top down management approach with SMT who don't see the Prime areas for what they are I struggle....

...and then there are the other children in the class... would be ok if it were just him!

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I know exactly what you mean about the adult-led activities. The biggest problem being that the more you try to get him to engage, the harder he will work to avoid it.

 

I know in this situation it can be easy to turn to rewards but I have found that they are often counter-productive. In fact, the more desirable a reward is, the less likely my daughter is to achieve it. The demand placed on her by the promised reward is too much for her to cope with and she sabotages the process as soon as it starts. We now don't promise any rewards in advance or offer them in any routine. She gets them on the spur of the moment linked to something specific she has done well in the last 24 hours and this works much better.

 

I'm not sure what you can do with the number and phonics work other than only delivering them through play activities which isn't ideal, I know. This is why I think an EHC assessment would be helpful. Do you not feel that his parents would agree? It doesn't need to be linked to any diagnosis of any sort.

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My little boy ( aged 7) already has a Statement for his speech and language needs and the suggestion of PDA is a new one . I avoid, or try to, rewards, although he does get them, but not as a carrot. I try to avoid confrontation and demand, but there are times when his behaviour is distracting to the other children that I have to have 'words'. It is getting really tricky and my group is only a small one (10 children). I love him to bits and he has many other problems and a not brilliant home life. I shall keep plugging away.

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