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Late presentation
  • NIKKI123
    Posts: 1
    I wonder if anyone can offer advice. My daughter was a late asd diagnosis in 2016 on the asd spectrum. In 2018 following an increasing inability of school to manage her challenging behaviour despite input from the asd outreach team, with the support of sendias I withdrew her. She was then under the intensive team whilst we went through the process of applying for her EHCP. She received this last summer and in September began at a wonderfully supportive specialist unit that she accessed via transport provided. She had a really positive first term. However following Christmas she struggled to return, anxiety was sky high and we started to see a huge increase in OCD behaviours especially st bedtime, preventing skero for all the family often until the early hours. I took her for hypnotherapy in desperation which helped as long as I was in her bed at night, a situation we had had earlier and managed to break, still at least we were all able to sleep. She had gradually managed ledd and lesd school, down now yo 3 mornings only, she was due to do her GCSE's, now pro ing too much. She has be one unable to travel by taxi so I mow take her in, a huge detour before arriving at my work some 12 miles away.All this could be managed, however her behaviour at school has deteriorated again. She has become friends with s girl there and now seems to live there, rarely returning home. She has begun smoking needing to ho out at school and kicking off if unable, she is only 15. The most recent issue was an inability to dtat on a family holiday, needing to be collected as an emergency, she seems increasingly unable to cope in any setting that Is not with and around this girl. Her language is disgusting, really fowl and she can be totally controlling often preventing us from leaving the room going to bed etc. I work with families and have access to many healthcare professionals. Recently a colleague from teaching services suggested we may be seeing an pda profile of asd behaviour, when I read the information the profile fits my daughter like a glove.
    My questions are, is this a profile that whilst always present could present so forcefully at this stage, I am aware life is do much more demanding at her age?, of course there have always been issues but she is be coming do difficult to manage Wed have asked early hell to become in loved as I dont know that we can manage her adequately, that's another story, for early hell read no help at all. Furthermore, as school are familiar with this presentation and are able to implement some strategies with some effect would a diagnosis still help, given that my daughter is adamant she doesnt have asd let alone anything else. Also does anyone have experience of the Elizabeth newson centre for diagnosis of older children, also cost should we pursue this route? Finally are there any support groups in the leics area initially for parents but also teens am thinking down the line for her possiblyo
  • webbwebb
    Posts: 2,577
    Hi NIKKI123

    Just wanted to say hello and welcome to the PDA Society Forum, I hope we can all provide you with some support and advice.

    If you have read the 'What is PDA' section on the website and you feel your daughter may have the PDA Profile of ASD; a Teaching colleague suggested your daughter may have PDA and your daughter is showing very controlling behaviour and showing an obsessive interest in her friend etc then it could be that she has PDA but only a full diagnostic assessment would be able to identify the presence of PDA or not. The ENC is a good diagnostic centre for all ASD's incl. PDA and was the first to diagnose PDA.
    Costs - approx. £3,500 (waiting time for assessment could be 6-12 months? You would need to phone)

    I am very sorry to hear that the Specialist School isn't working very well for your daughter.
    Are they a school for HFA, AS, PDA and have they had regular PDA Training for their staff?


    It can be common for children with PDA to have a 'honeymoon period' ie they start off OK at their new school but then within weeks or a couple of months the cracks begin to show.

    Is there anyway you can have a meeting with the school to discuss the problems and try to sort out any difficulties?

    Is the friend your daughter has made, also at the same school? If so I would have thought your daughter may want to meet her friend at school? If this isn't a big enough pull for your daughter to attend school, there must be some very good reasons she doesn't or can't attend.

    Below is a link to Support Groups for Parents -

    https://www.pdasociety.org.uk/resources/Support-and-advice/pda-support-groups




  • SGCmum
    Posts: 84
    Hi NIKKI 123. In reply to your question about symptoms showing in new, stressful situations, my daughter started becoming hugely demand avoidant with the stress of starting secondary school. Before this, I didn't really eally notice it, although I did adjust a lot, and I can see signs now going back years.

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