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She's driving us mad!
  • Hi Everyone, my wee girl is now 5 1/2 and we have been going through the assessment procedures with her for a number of years now with in school psychiatry observation etc. The trouble is she is like a perfect child at school and doesn't stand out from the crowd - only prob is that she doesn't like to take part in scholl concerts and plays or dancing activities and sing activities but otherwise she is a very quiet child at school, doesn't have many friends and will happily be on her own at playtimes.

    At home she is an absolute nightmare and will scream and tantrum and demand and refuse to do anything she is asked or told, she really does make our life very very difficult, she is still in nappies at night, obsessed with eating and drinking but has a very limited restricted diet, won't eat at the table along with us at meal times, wants to eat first then pester us all through our meal etc. Has to have everything she sees that relates to animals - her major obsession. Lines up toys but doesn't play with them like kids should - eg: have wee conversations between them etc.

    Won't go to bed, is up and down most of the evening, is a light sleeper and is up early. Refuses to speak to people if she decides to and will go into mute mode for hours if she decides to. Can't take her anywhere due to her melt downs and demands. At kids parties she sits under my chair and refuses to join in with them.

    Has to get her own way, tonight i have tried to get her to go and get her pyjamas and she has either sore legs, or it's too far, or it's too hard to open her drawer or she doesn't want to get changed. I have to do everything with her at home and out socially but again at school she seems fine.

    Our Psych says she doesn't quite tick all the boxes for an autistic spectrum because of the home/school difference and can't diagnose her basically. At home she is so oppositional and demanding and strong willed. We are struggling to cope, but Social Work say that there is very limited help for us! Thanks.

    Any comments appreciated, thanks C's Mum
  • Has anyone mentioned PDA to you or did you find it for yourself? You may find reading through the criteria here chime with you or tell you very clearly that this isn't it. My son is actually relatively unusual for a child with PDA (so we were told) in being challenging wherever he is. (I'm learning that this is probably to our advantage!) I don't think he is exactly the best fit but what I read about what are considered the most effective strategies makes sense in terms of our experience - and we felt that his social interaction and social imagination precluded autism (ie his play is very different to what you are describing)

    One possibly comforting (or not!) thing is that it is not at all unusual for a child of 5 to still be wet at night. I forget the figures but intervention point isn't until 7 or 8 because it is so common and believed to be about appropriate levels of hormone that reduce the production of urine at night. There's a really good charity www.eric.org.uk who may be useful - I've consulted them about my son who we now know has PDA (and is unmotivated by rewards or praise on the whole) who soils, and my older son, who doesn't have any developmental difficulties but wets the bed most nights.
  • Thanks for your reply, nobody mentioned PDA, i found it and thought it did describe many of my daughters traits, i feel she lies somewhere between Aspergers and PDA. The trouble is nobody in Scotland seems to recognise the PDA diagnosis. All they say is "it's not in the DSMIV or IDS10 " so won't consider it. I have two older sons with Aspergers but she is much wilder than them by a million miles.

    And... although there are a lot of similarities between them, her behaviour at home and out places is much worse than theirs ever was, her obsessions are stronger and her oppositional behaviour is harder to deal with as she is so strong willed.
  • Amanda
    Posts: 281
    Hiya, many authorities don't recognise PDA as a seperate diagnosis to ASD. My son has both so I wouldn't rule that out, but you're right to need to know because the stratagies for dealing with PDA kids are different.

    Our Psych says she doesn't quite tick all the boxes for an autistic spectrum because of the home/school difference and can't diagnose her basically.




    I can assure you that many many children on the spectrum are passive at school and nightmares at home, your phsych should know this.....Gosh it makes me so cross!!
  • Hya, We had a cross agency meeting last week and her class teacher sid she didn't stand out from the other kids, she did everything she was asked and joined in etc. Then the Psychs opinion was asked, he said that that was apparent to him to - she didn't stand out and was compliant etc but the thing that concerned him was that she was all alone in the playground and made no attempt to interact with the other kids, she was approached briefly by one other child but that was it, the class teacher said this was very unusual as she always plays with the others!

    The conversation was about to end after i had said that i was not about to spill the beans on how my daughter is at home but basically "seeing is believing and you really wouldn't believe it till you saw it" then i asked the Psych what she was like in his clinic (good thinking) he said she was a totally different child to the one the school sees, she was very oppositional, sat under my chair for an hour and refused to come out, either ignored him or shouted abuse at him and hissed at him like a cat, very angry and aggressive. The school just said yes she is a very strong willed wee girl who likes to hold her own council!!!!

    It angers me and i will have words with the psych because within a diagnosis even the gender makes a difference and even psychs tend to stereotype, research shows that girls are naturally more sociable creatures, even autistic girls are more sociable than autistic boys(if you know what i mean)
  • webbwebb
    Posts: 2,566
    Hi

    How about printing off some of the PDA info. from the PDA web-site and handing it to the Psychologist to read (in his own time) or write to The Elizabeth Newsom Centre for info on the criteria for PDA and give it to the Psychologist. It will certainly make them think even if they still won't diagnose PDA.
    I would have thought they could give her the diagnosis of Pervasive Developement Disorder PDD for now even if they can't diagnose PDA; any diagnosis would be better than none in terms of trying to get support from school and claim DLA etc.
    Sometimes as children grow it can become clearer what there true diagnosis is.
    My son wasn't diagnosed with PDA until he was 8.

    Hope this helps
    Paula
  • I'd disagree that any diagnosis is better than none.

    I am so glad we resisted the very considerable pressure to accept a misdiagnosis, but we'd never have got a more accurate one if we had and since the effective strategies can be diametrically different, it really does matter.
  • webbwebb
    Posts: 2,566
    Hi

    I agree it does matter to get the right diagnosis for a child but many parts of the UK still won't accept PDA exsists.
    I agree we deal with PDA children very differently to say Asperger children(I have one of each) so it does matter but at this present time some parents can't get this diagnosis for their children.
    My son was given"Global Development Delay" then at 4"Autistic" then at 8 PDA. Iknow how hard I had to fight to get these diagnosis but I found people that agreed with me about the PDA.
    Many people have to present the paperwork to psychologists in the hope they will see sense.
    However as far as I am aware parents in America still can't get the PDA diagnosis for their children.
    Obviously my advice if you think your child does have PDA is to present the evidence to the proffessionals and keep trying.
    Paula
  • Thanks for your feedback folks. My wee girly has been seeing a Paediatrician since 18 months and i've kept all the correspondance they wrote every year which also helps. In March she was given the diagnosis of Pervasive Developmental Disorder which in my area does nothing more than make people look puzzled.

    Anyone who i've "needed" to tell this to has said "eh, what on earth is that".

    As i have twins that are nearly 10 with Aspergers, then i feel i have enough life experience to say she has many of the traits of Aspergers but that there is definately some PDA too. I can see where some people say any diagnosis is better than none but i think what you mean is that if it is one of the Autistic Spectrum Disorders then surely it won't matter, and why do i need it to be specific?

    Personally i don't need them to be specific i suppose because even children with the same diagnostic label are very different from each other - i know that well from my twins who are on different levels of Asperger spectrum, one is very high functioning academically but very socially disabled and the other has a learning disability and dyspraxia etc but is more socially accepting.

    But i think giving a diagnosis is fine if it's a name that is accepted in this country or area, PDD which she has means nothing to many people and then some professionals say to me "that's autism".

    I invited a neighbour in for coffee with her typically autistic daughter and she said to me that she thought that the professionals had made a mistake - how couldthey possibly think my daughter was autistic because she was so able, wheras her daughter was very autistic.
    I said that she is not "autistic" as in classic autism but had PDD but is high functioning. She didn't know much about the spectrum other than what she sees in her own child and it felt weird explaining to someone about the potential differences who i pressumed should know anyway. Who was being ignorant then? Her or Me?

    Thanks for Listening
  • Oh and thanks Paula, i have printed out all the info on PDA and will take it to the Psych tomorrow! Can i just ask everyone - do any of your PDA kids appear fine at school in class time but are a nightmare at home at age 5 or 6?

    Thanks
  • My son isn't, but I understand that he is relatively unusual in presenting similar behavioural difficulties at home and at school - I believe it is more "PDA" for there to be a marked difference.

    What does happen is that if school tell me he has had a really good day then very often he will be completely horrible the moment he sees me after school.
  • My Asperger sons are very different at school , thier behaviour is disruptive and challenging at school but they are great at home whereas my wee girl is a nightmare at home but great at school! Kids huh.

    We were at a christmas party yesterday where most of the kids there were wither physically disabled or had downs syndrome or other noticeable disabities. What hit us most was that my 3 sat terrified looking at the table, perfectly behaved but almost frozen to their seats whereas all the other kids - even ones in their wheelchairs were on the dancefloor enjoying the party and smiley happy having fun. It was obvious that the most socially disabled were the 3 who looked the most normal if you know what i mean. At the party the organisers were giving out certificates to the kids that had achieved over the past year and my 3 had won an award. All the others went up and smiled for the camera and were clearly overjoyed and excited, my 3 sat still glued to their seats and refused to even look in the direction of the stage. They got their certificates and trophies brought to them and they just sat blank expressions and never even acknowledged the person who ended up handing us their awards.

    In the end we had to leave because my kids were getting clearly distressed, rocking back and forward and repeating the same thing over and over "can we go home now, can we go home now", once we got home they weremuch happier and relaxed. I don't usually insist we do the party thing but i knew they were going to receive an award so felt pressurised to go.
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