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  • foxl
    Posts: 7
    DD, age 6, fits many listed criteria, is HIGHLY creative, engages in much dramatic play, manipulative of adults ... but often poor eye contact.

    She occasionally hits other kids at school or her younger sibs, but is not particularly hostile or violent. She rarely has meltdowns unless very tired, in fact. She casts herself in fact as a victim of others' unkindness in talking at home.

    Her avoidance seems more to do with academic performance. She draws on worksheets, ignoring their intended use completely, or else does them partially or incorrectly ... is refusing to read saying it is too hard. Now I am not saying she is perfectly capable, only that her avoidant behavior and manipulation is CONTRIBUTING TO her apparent inability.

    She is not disruptive or violent and in fact appears to be "invisible" to both teachers and peers. She tests poorly and has been assigned a low-normal IQ but her conversations at home reflect giftedness in reasoning and comparative thinking.

    So, is it PDA, in the absence of more difficult behavior?

    Thanks in advance for your thoughts!
  • mango69
    Posts: 967
    Hi there and welcome to the site,
    Are you saying she is only demand avoidant at school? Does she comply with most of your demands at home without much effort or anxiety? - The term pathological demand avoidance syndrome is so called because that is THE main feature ie avoiding demands to a pathological degree, so not just refusng to do some things but refusing to do most things and reading the description of most of the kids here, that is pretty much at home, school or anywhere. Small demands like brushing teeth, getting dressed, coming out, doing this doing that etc etc Thats not to say that some appear very passive at school like your daughter, but that seems to often be coupled with far worse behaviour and demand avoidance at home. Although violent/aggressive behaviour is not one of the criteria per se, it is usually symptomatic of what happens when you try to push a demand as far as you can on the PDA child. So, I'm not sure if your daughter is PDA or not - sorry thats probably not that helpful! Do any of the handling guidelines on this website ring true for what you have found helps with your daughter?
  • dirtmother
    Posts: 897
    My understanding was actually that it was *more* typical for children with PDA to be different at home and at school (and that my own child is relatively unusual in being similar in both places)

    The eye contact is interesting - has it always been like that or is this a learned behaviour to avoid demands. One of our son's teachers made much of his avoidance of eye contact - but it was his way of coping with her and hadn't previously been a feature. I think it was more like social skill rather than disability - as when you are in a meeting and someone asks for volunteers, you know not to make eye contact.

    I've seen it argued that parents may be so used to their children's behaviour that the avoidance at home is less apparent.

    It's also worth looking into other possible *reasons* for demand avoidance such as dyspraxia, dyslexia etc
  • foxl
    Posts: 7
    dirtmother you bring up some interesting points. At age 6, she refuses to dress herself without some incentive like a reward. She will sometimes do minor chores at home, ie, if competing with her younger brother for attention, but that is all.

    We indeed have definitely worked AROUND her so long, it is hard to say other than by comparing with her brother if she is that demand-avoidant at home ... other than HOMEWORK. Which she resists quite heartily ... but, again, not nastily. More manipulatively and sidesteppingly.

    The eye contact could be a learned behavior -- it cycles in and out, and when she was given a lot of diagnostic testing at school it was VERY low for several weeks, but now is increasing to almsot normal again.

    She was only diagnosed by her school district as autism spectrum, last month. She had mild developmental delays, had early intervention speech and OT for fine motor, and was sort of skimming the diagnostic surface from ASD to NT and back again from age 2 to 6.

    In any case I DO think her resistance is a component of her school delay, so I probably will benefit from reading here.

    Thanks both for your responses -- mango, I understand what you are saying ... and the thing is, WE thought she was resistant (IE, would not) when her early intervention therapists were insistent she was incapable ... so of course we are going back and forth on actual ability vs. resistance.

    I will keep reading here ... and asking. It is a pretty slow board!
  • Hiya a welcome along

    I have read ur post and the replies and i dont know what else to say! :? Has ur daughter been seen by a Peadiatrician or a psychologist? Maybe seeing them they could say yes or no to demand avoidance.

    My son was assessed and i was directed to this site by the assessment centre (the only PDA forum in the UK) to find comfort in knowing i wasnt alone with the behaviours my son was displaying.

    My son has very poor eye contact and i dont know if he is really that manipulative, if he doesnt want to do something then he wont and yes he is very violent with the use of foul language (he doesnt care). My son also shows ASD behaviours along with sensory difficulties and he has a lot going on, more than is known as yet (in my opinion).

    I hope u can gain some knowledge and support from the people on here :)

    Bambi x
  • foxl
    Posts: 7
    Thanks, Bambi!

    So far we have the school diagnosis -- in the US you often get that first. She will be assessed at an uatism clinic but the wait is AT LEAST six months to get in ... and some people are having to wait EIGHTEEN months, here! Our wonderful medical system. And our politicians live to threaten us with the rationing of healthcare if it were nationalized ... HAH! But I digress ... we aren ot apt to get a PDA diagnosis as in the US the only things recognized are Autism, PDD-NOS and sometimes Asperger's. And the overlap in differentiation among those three is complicated ... :roll:

    My daughter's greatest resistance seems to be in learning to read ... and completing other school exercises. But then as I said we have tolerated her overall passive way of life, at home, for five years (she was adopted at one year). She just seems to bright, and too sociable, under non-school conditions, for her level of achievement and effort ...
  • kazza
    Posts: 5
    Hi Foxl

    Just thought I would let you know that my local health authority do not recognise PDA as a diagnosis here in England. I had to fight to get it mentioned in a doctors report so it could be presented to the education authority. So your not alone.

    With regard to your daughter, mine was similar at that age and appeared more aspergers than anything else but there was always something you couldn't put your finger on. The fact that your daughter only seems to be avoidant at school is normal in my experience (i also work in an education environment) and can be because of the approach the teachers use towards her, if they dont understand PDA then thats a problem in itself.

    What you may need is a sounding board to air your own frustrations as time goes on so feel free to e-mail.

    best wishes
  • Hi FOXL,

    My daughters PDA was very prevalant at home but came as a shock to all of her teachers. She presents in school as a warm, friendly and on the face of it sociable young girl. At home its the direct opposite...avoidance manifested itself in stomach aches each morning that she had a substitute teacher and meant that she missed several days each year... until we figured it out. since she was diagnosed she HAS changed, her understanding of the condition means that she will now challenge her own behaviours( not always) and, indeed, she has embraced her condition and now sees it as some kind of badge! She has asked us to get her a t-shirt printed with the slogan... " I've got PDA.... whats your excuse?" lol i suggested that it should read " my PDA told me not to do it!"
    It sounds like your experiences are not too dissimilar to ours. But you really need to get her a diagnosis... its been a positive experience for my daughter and ahs helped us all tremendously.

  • foxl
    Posts: 7
    mmmm ... interesting. LOVE the T-shirt idea ...

    Thing with my daughter is, the ONLY person she speaks really intelligently with is my husband. Talk about Daddyitis ... they discuss all kinds of things and I would not believe him when he reported it back to me, until I eavesdropped a few times! She wants me to baby her and comfort her, she tests very poorly at school, and then goes off to discuss electricity and thermodynamics with him!

    I told him, I want tape recordings, because nobody will believe us otherwise ...

    I told the Special Ed teachers and diagnosticians about PDA. They were interested! Clearly, the behavior was familiar, if the diagnosis was not ...

    So, just how DO teachers handle these kids?
  • Garden
    Posts: 329


    I have just joined this site as my 8 year old daughter has just been diagnosed as having PDAS. The thing that caught my eye about your post was when you mentioned that she is adopted - so is my daughter (and her sister, who doesn't have PDAS).

    I have been told that it is common for adopted children to have PDAS (not that any of the adoption therapists that I have spoken to seem to have heard of it - they all think our daughter has Reactive Attachment Disorder, which shares some of the behaviours, but not all of them). The reason for this being that there is a genetic link and often a birth parent will have it, which explains why they didn't care for or keep their child. Our children were badly neglected by their birth parents - reading over the court papers I am pretty sure that our daughter's birth mother has it. And her birth father. So that's interesting I think.

    Unfortunately, if you have an adopted child, you tend to be advised to parent with very strict boundaries and lots of therapeutic parenting - which is totally the opposite of what works with a PDAS child. I struggled for years with our daughter, trying to get her to lose her need for control, aka Reactive Attachment Disorder, and it made not a bit of difference. But now that I'm parenting her as a PDAS child, life at home is completely different.

    Our daughter ticks all the PDAS boxes. She underachieves at school and her school report actually says "she needs more drive within herself to achieve further" despite me telling them all about PDAS. I was in her school helping with swimming lessons the other week and discovered that she's in the bottom class for ability - the teacher said to me "she shouldn't really be in this class but she won't move up". (!) She does NO homework - I don't even try now because of the tantrums, and refuses to learn to read. She pretends she doesn't know her sounds so she can go out with a special teacher in a small group. She plays at being a mummy all the time and never leaves home without her baby buggy and a handbag, toy dog on a lead etc. She loves playing at being a bossy teacher or a waiter at mealtimes. She is clumsy - it has been a standing joke with us for ages that she knocks drinks over in restaurants and is forever knocking into walls on her bike for no apparent reason - and she is terrified of Disney characters (apart from the ones whose faces she can see). Last St Patrick's Day there was a man dressed as a leprechaun in our local shopping centre and we were hiding in shops because she was so hysterical about him. She is obsessive about so many things - where would I start - and will not let anyone in her bedroom (except me). And her tantrums when she's had too much.........

    Sorry, this is a pretty long first post. But I'm so happy to have found out about PDAS and to know that other people out there understand.
  • Maryann
    Posts: 53
    a couple things that strike me is competitivness and possible munipulation. would her dad baby her if she wanted him to? i find with my daughter she will find a weakness she will milk it. can you try a few things please? when my daughter wouldnt get dressed i would say something like, i tell you what, lets see who can get dressed the fastest, she would be up and dressed in the speed of light just tell tell me shes beat me and shes won. try some things along them lines with an avoidant situation. with my daughter competition is a huge issue. i wouldnt offer rewards to get her to do things, as they will milk it and only do things for a reward, you have to reward them, but only reward them for good things, not to get them to do good things she will very quickly learn to blackmail you. if we are going shopping and i tell her what we are doing and she needs to try hard to behave, she went trough a patch of saying, what will i get for being good? i nipped that in the bud straight away and will only reward her after the situation, if she was good (you have to be leniant, they can forget and need to be reminded that what they are doing isnt appropriate) and not offer a reward in return for good behaviour. incase i sound confusing ill give you another example. at the moment im doing a penny system with her. she starts with 30 pennies in the morning and she will lose and gain depnding on her behaviour. when i first started i told her that if she does and she is told first time she will gain pennies and if i have to tell her more than once to stop she will lose pennies. now my daughter very quickly started being naughty knowing that if she stops first time asked she will gain pennies and inturn indirectly i was encouraging bad behaviour and rewarding her when she stops, so very quickly i had to adapt it that if she does something she knows she shouldnt, she will not gain pennies when asked to stop, but not lose pennies if she does stop first time. she will gain pennies if she has had a good morning/afternoon/day or if she does something i ask her to do first time with no argument.

    the other thing i would like you to try is if she is in a avoidant situation munipulate the situation to make her think she is in control. as an example with her homework, sit down with her and with something she does not know you can do, but you know she can do but refusing to, say to her, i will do the homework for you, go to do it and say to her i cant do it can you help me please, pretend you are trying to do it, and get her to help you so basically shes giving you the answer and your writing it down. she will then think she is the one telling you what to do, therefore in control. but in reality she is actually doing to work. PDA children are very intellegent and will work out what you are doing very quickly. so you may have to adapt the control reversal in different ways. another example is if you struggle with them when your shopping, tell her your really tired and struggling to remember things today can she help you with shopping, go to the shop and read out a list of what you need, so like say i need pasta but i cannot remember where it is can you help me find it, she will be so impressed with telling you where to go she will think she is in control she will forget her normal behaviour and your getting your shopping done, although she may get bored of that very quickly :) basically make them think they are in control but in reality your in control just like we do with men ;) those two situations if they work would lean me towards PDA.

    you said she is social do you mean with her class at school?, pda/autistic tend not to be, some not at all but with my daughter shes loves much older children and adults, but would not play with children her own age and treated them like parts of the furnature or things of great interest that shes never seen before. like if they was playing she would stand and watch them or if they was doing class work she would get up and walk over to them and stare at them then pull their eyelashes or take their pencil or something to see their reaction. she was like that up untill about 7 or 8 years old but now she wants to play with them and demands they play with her and if they dont she will go mad. if she can find a child that refuses to play with her, she will stalk and harasss them till they do because shes not in control.

    i know of a few people with pda children that are angels at school and spawn of the devil at home or vice versa to compensate all that time of behaving. my child goes through phases of it, but at some point they normally are unable to control it any longer and its normally school that have the shock of their lives at the sudden change in behaviour.
  • jgoo
    Posts: 1
    Have just read all your posts and found them really interesting and have convinced me even more that our son has PDA. He is 6 years old and has had worsening symptoms since nursery. Only thing we noticed when he was younger was that he was a very late talker but when he eventually started never shut up! We have seen a psychologist, behaviour support worker, paediatrician, gp, autism outreach. Paediatrician agrees he is showing signs of some sort of autistic spectrum disorder (Aspergers was mentioned at first). A lady from autism outreach (Old name, don't know what they're called now) has said it is more likely to be PDA. We have been at crisis point at school since last October. He has temporary full learning support assistants at the moment and is going to a behavious unit for 2 days a week from next week. (This is to try and work on his manipulative behaviour) School have been very good but I know that he is a huge strain on their resources at the moment and will be until a diagnosis is forthcoming. We were told in March by the paediatrician that it could take 18 months and have not heard anything else since. Last meeting we had in July there were 10 people present including me and my husband. He has a new teacher who is excellent. She has introduced a "pencils system" like Maryann's pennies system. If he loses all his pencils he is not allowed to go on his laptop for his reward (he's obsessed with lots of things including computers). They have also incorporated his laptop into the curriculum as some days he refuses to even write his name let alone do any work. I read that some people have been to the Newton Centre for diagnosis. How do you arrange this and how long does it take? Any information will be very gratefully received. Thanks in anticipation.
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