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need some help!
  • kog
    Posts: 7
    hi i'm new here and not really sure if i'm in the right place
    my son(13) has a dx of autism with co-morbid bi-polar
    he is in a unit for children with asd but the teacher keeps saying he doesnt fit with the other kids , all the methods they use are just not working!
    he just refuses to do anything unless he has choosen to do it, this even goes for things he has appeared to enjoy, this is at home as well, he just refuses to do anything
    a friend had heard of pda and suggested that it was like my son
    who would i go to ,to find out if he has this?
    everyone involved with my son meets once a month and to sit there and listen to them saying - dealing with him is like banging your head against a wall -thats the teacher
    everything we've tried has fallen flat - the ed psych
    dont know how to get through to him -cpn, it's soul destroying.
    his teacher has many years experience with asd and says there is something different about him, alot of asd traits but something else,
    sorry to go on but need some answers ,i am very afraid he will lose his school place soon, as he is causing alot of trouble in a place that runs quite smoothly as long as routines are followed.
  • webbwebb
    Posts: 2,566
    Hi Kog

    Welcome to the PDA Forum, you certainly appear to have found the right place!!!
    This is the only forum for parents of PDA children and probably the only web-site with info about PDA.
    From what you have already said about your son he could have PDA. I prsume you have read the web-site and list of behaviours that suggest PDA?
    PDA children can resemble Autistic/Asperger's children and usually are diagnosed as ASD to begin with.
    However most ASD teachers/professionals say exactly what your son's have said "your child is not quite the same as the other kids" and "what works for other ASD children dosen't work for your child"
    My own son Matthew also 13 was given the Autism diagnosis at 4 yrs but when he went to special school at 7yrs the teachers realised he had PDA.
    Have you shown your son's teachers the info ie criteria for a diagnosis for PDA ? If so what did they say?
    You don't say which county you are from? There aren't many professionals who can diagnose PDA as it has only recently become understood and recognised but we can try to help you find one.

    All you have said about your son is true for PDA children. I understand your worries about his school placement. My son is in a school for children with Autism but a few do have PDA or PDA and Autism as I often say about my son! Can you tell us if your son has learning difficulties or is average/above average intelligence, as this helps us to understand your son better. Some PDA children do not have learning difficulties they just choose not to learn ie won't do any work rather than can't do the work!

    I've said enough for now but please keep posting and asking questions and hopefully soon you will understand your son better.
    We are all a friendly bunch and are here to help.

    Take Care
    Paula
  • kog
    Posts: 7
    thanks for your reply!
    i did read the list of behaviours and most of it fits - he doesnt do imaginative play of any kind and although he makes eye contact it is very brief.
    i've only just mentioned it to the teacher but am going ask her to read about it
    spoke to my sons c.p.n. last night about it but he had never heard of it.
    i'm from cardiff, dont know who best to ask about this
    he has some learning difficulties, he cant write, they think this is due to a mix of problems with fine motor control problems and working memory problems.
    he scores above average on some tests and right at the bottom on others, ed psych refused to give him an over all score because he takes so long to complete anything, he said to give him a score with the timed tests would put him so low it wouldnt give a true reflection on what he can do given time.
    dont know if i'm being conned here as it means we cant get certain help as he has no iq score !
    do the other disorders that often come with asd ie sensory intergration come with pda ?
    is it possible to have both asd and pda?
    again thanks for your reply
  • Amanda
    Posts: 281
    Yes cog My son has Autism and PDA and it's under the umberella of the spectrum which means it's quite common for it to be present with other conditions.
  • mango69
    Posts: 967
    Sensory problems are very common in PDA, as they are in Autistic spectrum disorders in general even though this is never mentioned in any diagnostic criteria for either!
    Margo
  • My understanding is more that PDA specialists are pragmatic enough to realise that many of those working in ASD are too rigid (sometimes for historical political reasons) to be able to cope with the idea of Pervasive Developmental Disorder as the umbrella term and that *provided it is understood that the approach must be very different much of the time*, we might as well give up and let them believe what they like :-)

    I am quite sure that pathological levels of demand avoidance are exhibited in many disorders. The key thing would be that it is demand avoidance in everyday situations that cannot be explained by some other difficulty eg dyspraxia (lots of sensory issues there) language disorder etc ie there is no apparently sense in it. I would say that if there is a definite impairment of social imagination though it isn't Pathological Demand Avoidance *Syndrome* - which is not to say that the approaches would not be useful.

    All I can say is that people who think my son is autistic don't do very well with him, people who think he has PDA get results...
  • webbwebb
    Posts: 2,566
    Hi Kog

    Good to hear from you.
    PDA is an Autistic Spectrum Disorder. Some children have more than one disorder. For instance a child could have Autism and ADHD or Asperger's and Dyspraxia, etc.
    Your son could have PDA and Autism or PDA and Asperger's or PDA and learning difficulties; I'm just a parent and you need an expert to tell you for sure!
    As you do not know an expert in Cardiff and I'm afraid I don't, why don't you ring The Elizabeth Newson Centre(the best place in the Midlands) and ask them to tell you your nearest PDA/ASD expert? They are a friendly place and understand the problems of finding a professional to diagnose correctly.
    I went to countless professionals before I got to the bottom of my son's problems. It was a waste of their time and mine.

    Paula
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