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help, daughter with possible PDD, no one's listening!

andyjay

Does anyones daughter have behaviours like mine?

My daughter is 11 Years old and I'm convinced she has some type of PDD. My niece has Asbergers so I have an understanding of different issues.

E has never slept a full night since the day she was born, still wakes 2,3 or 4 times a night. As a young child I could not persuade her to wear clothes, I had to pin her down and drag clothes onto her to get her to school.

Now she has gone the opposite way, she wears two vests and a bra as well as her daytime clothes which all have to be really big on her. At night she wears two vests under her pj,s and hooks her bra around her arm, which she refuses to sleep with out. She has a very rigid routine when she is dressing, in the living room, the dog has to be there with her and she has a set order to which she puts on her clothes, starting with socks before she takes off her PJ bottoms. If she cannot follow this routine the stress and anxiety it causes is unbearable. There are times when her clothes just aren't right and she gets very upset, agitated and angry on days like this. She wears 4 belts everyday because without them she says her trousers will fall down! Shopping for clothes is a nightmare. There are many days when we are late for school and work because of this. Even when she is despirate to go somewhere, the dressing frustrates her so much that we both end up in tears.

She wears her swimsuit in the bath because she doesn't like being naked.

Her temper is unbelievable, she can become aggressive and throws things or breaks things, her temper outbursts are usually caused by frustration.

She is obsessed with animals, dogs in particular and she can tell you all sorts of interesting facts. She likes to recreate her school lessons using chess pieces.

Her social skills seem pretty good and she has quite a complex sense of humour. Although she can be bossy and domineering with her peer group.

I had an initial assessment and I don't feel that the women listened to me at all. She told me to bath her and give her a hot milky drink before bed to help her sleep and that her behaviours were controlling and to put my foot down.

We recently booked a holiday to spain with my extended family, my daughter had to stay at home with her dad because she couldn't cope with the thought of going away for a period of time and leaving the house, even though she was looking forward to a holiday with her cousins and aunts!! I don't understand how that is controlling behaviour!!

She starts comp in September and I'm really worried about how she will cope with PE

Any help or advice any one could give me would be most appreciated.

Thanks



  • Hi wyse61,

    You may want to consider starting another discussion about this issue to see if other people are able to respond. But right now, as the situation sounds so critical we'd recommend you contact our services to see what help they are able to provide.

    As a start it sounds like our Community Care service may be the best place to begin but if they aren't the most appropriate people they can direct you to our other services

    http://www.autism.org.uk/Our-services/Advice-and-information-services/Community-care-service.aspx

  • can anyone out there help my daughter has always been diagnosed as ASD but we think its PDA but need a private diagnoses done as we are being taken to court to put her away in a mental hospital ineed help asap thanks j

  • Hi Wolfbear, thanks for the response.

    I've read this post half a dozen times and found it mind boggling at first but the more I read it, the more sense it makes, very insiteful!

    I've come close to pulling my hair out sooooo many times and those little pills for me are replaced by those evil nicotine sticks!

    I have of course been told by so called professionals that they don't like to 'label' children, just as I was told to try giving my 11 year old a warm bath and a hot milky drink before bed to help her sleep! My response to this was, please don't patronise I am not a fool and I'm as educated as you are!

    The battle has been a long one, I too considered paying for private assessment, but after much pushing, that all important initial assessment has been done and to my relief there has been an agreement to do further testing OCD and Aspergers.

    I know I have a long and difficult road ahead, but the fact that it has finally been acknowledged that I am not an overbearing mother or that I have munchausens by proxy has given me a great boost!

    The obsessions, the bedtime nest building (this happens every night) continue and may never end, but I will survive it, because I have to.

    I have survived this far thanks to humour and an increadilbly large and supportive family network who have constantly reassured me that my daughters behaviour is unusual and that I am not imagining it, as some professionals would have you believe.

    My daughter can be an absolute demon and drive me to despair, but there are also many times when she is an absolute ray of sunshine, which makes the hard bits well worth while.

    Teenage years are creeping up fast, god help me!!!

    Thank you so much, your post really struck a chord and made me think.

    Take care

    Andrea

  • Hi Serafina

    Looks like your message hasn't shown up - if you're having any difficulties please do let us know, using email or feedback in the community pages, and we'll do our best to help. Here's some info about replying to discussions which may be helpful and links for asking for more help at the bottom. http://community.autism.org.uk/help/replyingtodiscussions

    Sandra

  • Hi Hope, thanks for your post

    I'm seeing a child mental health specialist on the 4th July to try and make some sense around what's happening.

    Like you I was very doubtful that she would have AS as I'd always thought her social skills were pretty good. She does lack empathy in many situations and although she doesn't seem to struggle making friends, many of her friends are what I would call superficial. She has one close friend who although is the same age as my daughter is tiny and doll like and my daughter seems to treat her like a doll or baby!

    I always thought it would be obvious with the social skills type stuff, however my niece has been diagnosed with AS and she too is a very socialble young lady! My niece never had any problems at all whilst in primary school but it became very difficult once she got to secondary. Apparently AS in girls presents very differently to boys and the signs are often missed because girls are naturally more sociable and are better at covering problems up.

    My niece and my daughter often clash when they're together because they both want to be the one in charge lol

    I also thought about OCD, have looked into all sorts, I think my head is so full of information at the moment it's going to explode!!

    Thanks again

    Andrea

  • From what you write, it sounds as though there is something not quite right  in your daughter's life. There are many developmental conditions out there, but OCD, possible dyspraxia and Pathological Demand Avoidance immediately spring to mind. It is possible she may have mild asperger's, but you say that her 'social skills seem pretty good' and this is certainly not the case with AS.

    Does your daughter struggle to make friends?.  Does she take things literally? Does she struggle to understand fiction? How good are her motor skills?

    AS is primarily a social disability, this is the core impairment. A need for routine, however, can occur in many other conditions, not just in AS.

    Pathological Demand Avoidance is a condition on the autism spectrum. People with PDA have superficially good social skills, but they are very controlling and rigid in their behaviour. In reality, their social skills are quite poor because they have low empathy. They also often have bad temper tantrums, and they avoid all demands and they tend not to follow instructions.

    I would ask to see a person trained in developmental conditions, as only then can you get a correct diagnosis. If your daughter has a mental health condition like OCD, then she might benefit from Cognitive Behavioural THerapy.