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New Here with a familiar story
  • Hello all,

    My name is Jeff and my Partner's name is Vicki. We have three children and our middle child, Elise, has always been the focus of our trouble.

    Elise was born in 1998 and proved to be a difficult child, with prolonged screaming fits at an early age. We really realised something was wrong when she reached 2 years old. Her speech was late and her reading and writing have been delayed for a good few years. Se has only recently started to read properly.

    Elise has been officially diagnosed with "High Functioning Autism" but over the last 3 years we have called into question the diagnosis with help from teachers and support workers from her school. So far she has been in Mainstream school, but the headmistress does not think she is ready for Junior school (that she is due to start in September).

    At best, Elise has some defiance to instruction about once a day, at worse, she is uncontrollable for up to an hour or more, damages furniture and property, puts the safety of others in jeapody and often is uncontainable by teachers. On many occassions I have had to go to the school and retrieve her and take her home because her behaviour is too unacceptable for her to remain with other children.

    To cut a long story short, no-one who has worked with her believes her to simply be Autistic as she does not fit the behaviour patterns seen in other austic children. It was suggested that I seek some help within the PDA "community" as she does seem to exhibit signs of PDA behaviour.

    My question to the communiy is this... WHAT DO I DO NOW? Is it something my GP needs to action for me? Im really unsure about it as after 5 years of pushing to get her seen by experts, no-one can decide what she actually has wrong with her! Any advice would be greatfully appreicated

    Many Thanks

    Jeff Barber
  • webbwebb
    Posts: 2,566
    Hello Jeff and family,
    Welcome to the forum. The parents who post on this forum all have children with PDA, some of the children are diagnosed but some are not. I have a son, Matthew 12 yrs old. He was diagnosed when he was 4 as Autistic but we were nver sure it totally fitted the bill. Then when he was 8 his Special School teacher showed me the criteria for PDA and we knew it was a perfect match. I tried for a whole year to get a professional to diagnose this condition or to refer us to a Centre that could, we managed neither.
    It isn't easy but one of the best places to get a diagnosis is the Elizabeth Newson Centre, Ravenshead, Nottingham (they have a web site)however I believe you have to get a referal from a GP or health professional to go their. It is very difficult to find a local professional to diagnose this condition but some parents have managed it.
    My son is now at a specialist Autistic School where they fully acknowledge PDA and educate/manage my son accordingly. We didn't need to have him formally diagnosed in the end.
    You have obviously read the criteria for PDA and think it fits your daughter, it sounds like the school think so too. As your daughter is in mainstream school it might be wise to go for diagnosis so that the school hear from a professional about the condition.
    Feel free to post again and ask any more questions.
  • Our son (now four and a half) was diagnosed by an NHS clinical psychologist after an ADI and ADOS. I just thought I'd reply to show that it's not just the Elizabeth Newson centre that will help - although I think I may well have been very lucky to have had the great level of support I've recieved from a a range of understanding and well-informed professionals. Must be so hard without it.
  • Amanda
    Posts: 281
    I agree Mark was diagnosed by his peadiatrician and it's good that PDA is being recognised easier now. If only schools would start recognising it too.
  • Maryann
    Posts: 53
    its down to the group of doctors whether they will diagnose PDA, my daughter was diagnosed higher up than the paediatrician at the complex communications clinic i think its called. they diagnosed her as autistic with particular aspects of demand avoidance. this is because they do not agree with PDA not being on the spectrum, therefore they will not diagnose PDA. but when she was given the diagnosis, it was then i found out about PDA as the paediatrician said she has it but they cannot diagnose it due to "politics" but the aspects of demand avoidance in the diagnosis was enough.

    if your child is at a good helpful school, they should work with you. my daughter is in a mainstream school and i went to the school armed with a ton of information about PDA after the diagnosis they looked through it and although things have changed recently, they have been very good with managing her. i go to school everyday and discuss the problems i have and they have had with her, we discuss ways of dealing with her and how we can both be consistant. they have got extra funding for her since nursery so she has 100% one to one within the classroom. they helped me get her statemented so she has that to back her up where ever she goes. my paediatrician has always backed me up with everything i need to.

    in essence it doesnt matter in my opinion what the diagnisis is as the school should adhere to your childs needs. i aways have information on PDA so when a new professional comes into our life i have information ready for them as alot dont have any idea of it.

    you need to ask the school to apply for funding for one to one, so if the child is disrupting the class, they have someone to remove her and do work with her till shes ready to go back in. you need to get the school or someone to help you get the child statemented so when the child does move up to another school they have to adhere to the statement, although as shes moving soon you may not get this done before but try and see the new school before it starts and sit down and discuss a plan of action.
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