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  • I am completely lost. I've known for a while that something wasn't right with my 7 year old. We had been referred by her old school to SALT and then when we moved schools the referral followed us (her old school treat her as naughty all the time but she wasn't). Her new school is 100% sure that she is on the spectrum but concerned with how referral was done at old school and worried that not enough info about her challenging behaviour for when it goes to panel. She is smart as a button, articulate, well read etc. but she has so many other issues - doesn't sleep, eats hair, repetitive behaviour, creates her own counter productive routines so we never leave the house on time, attachment issues, inappropriate behaviour constantly, steals constantly and a whole host of things that all add up to an interesting time. We have received a letter to say that she will go to panel in 15 months and we have had one assessment with SALT. I have been trying to get the Dr to address sleep but every time I go I end up seeing a locum that can not start any long term interventions apparently. I just feel like we are not getting a clear path for what we should be doing for her. We are even considering pooling our savings and looking at a private route but we don't actually know where to begin. It just feels like we have so little info and its having a hugely detrimental affect on our other child. I know this is a little garbled, just never get to talk about it as the only support group I have found is mainly for parents of low functioning boys and she is so different from them.
  • Holly59
    Posts: 2,586

    Jacksonr1023 said:

    I am completely lost. I've known for a while that something wasn't right with my 7 year old. We had been referred by her old school to SALT and then when we moved schools the referral followed us (her old school treat her as naughty all the time but she wasn't). Her new school is 100% sure that she is on the spectrum but concerned with how referral was done at old school and worried that not enough info about her challenging behaviour for when it goes to panel. She is smart as a button, articulate, well read etc. but she has so many other issues - doesn't sleep, eats hair, repetitive behaviour, creates her own counter productive routines so we never leave the house on time, attachment issues, inappropriate behaviour constantly, steals constantly and a whole host of things that all add up to an interesting time. We have received a letter to say that she will go to panel in 15 months and we have had one assessment with SALT. I have been trying to get the Dr to address sleep but every time I go I end up seeing a locum that can not start any long term interventions apparently. I just feel like we are not getting a clear path for what we should be doing for her. We are even considering pooling our savings and looking at a private route but we don't actually know where to begin. It just feels like we have so little info and its having a hugely detrimental affect on our other child. I know this is a little garbled, just never get to talk about it as the only support group I have found is mainly for parents of low functioning boys and she is so different from them.



    Hi,
    Welcome to the Forum ,

    https://www.pdasociety.org.uk/families

    All you need to know is on this link . Collecting evidence , out of area referrals , private diagnosis , support groups , Webinars .

    There is also a specific link for teaching staff too .

    https://www.pdasociety.org.uk/education

    Personally who I would recommended is help for Psychology in Norwich . They work off Skype and offer a pre assesment and a written report which gives you a good indication of the issues . Cost of this pre assesment is £95 . A full assesment starts at around £1600.

    https://www.help4psychology.co.uk/

    You could try approaching Charities for funding too.

    The Webinars are an excellent way for both yourselves and the teaching staff to learn about PDA .

    There is a link for support for siblings .

    I would definatly emphasise to your GP the situation you are in and hopefully meds can be prescribed .

    There is a PDA Conference in April at Birmingham if you could attend , hopefully with a member of staff . Other training sessions are listed .

    If not look for a support group near you , most of us don’t have a diagnosis .

    https://www.positiveautismsupportandtraining.co.uk/laura-kerbey

    Laura Kerbey is lovely too . She works off Skype , Telephone , email, to help parents . Does great training sessions too .

    You must also check for co Morbid , such as Dyslexia , Dyspraxia , Hypermobility etc . Hypermobility causes pain and adds to the sleep issues .

    You must all work together using the same Stratagies . It won’t happen overnight but be consistent .

    If Social Services become involved be careful . Some SW are lovely but parental blame is common

    You are doing an amazing job . The best information in the World is on this Forum .

    Pat xx
  • Personally who I would recommended is help for Psychology in Norwich . They work off Skype and offer a pre assessment and a written report which gives you a good indication of the issues. Cost of this pre assessment is £95 . A full assessment starts at around £1600.



    Just to clarify, you would have to physically attend for an assessment, it's only the pre-assessment consultation that can be done by Skype, they are in Norwich and are really expert in all ASDs including PDA.

    I would insist on one of the permanent GPs so that you can discuss the sleep issues. If all else fails then they can prescribe melatonin. If she is a constant waker, Circadin which is time-release is best. Lack of sleep makes the autistic behaviours worse!

    Her current school can submit up-to-date information to the panel to include everything they and you think is missing. I would be careful of the attachment stuff as some autistic children are misdiagnosed with attachment disorder and that has a lot of negative implications.

    "The Overdiagnosis & Misdiagnosis of Attachment Disorder"
    http://docs.wixstatic.com/ugd/58c8f1_c414ab0452b94c4bb3a80a5dfd6e54f1.pdf?index=true

    "Parental Recognition of Autism - Professionals Must Listen!"
    http://docs.wixstatic.com/ugd/58c8f1_86f4d0a01e5e4c1485ebfb47dd69dbb3.pdf?index=true
  • Holly59
    Posts: 2,586
    http://www.royalsurrey.nhs.uk/wp-content/uploads/2015/09/Sleep-and-autism.pdf

    I have posted this link separately . You have my total sympathy . I can’t remember the last time I had a full nights sleep !
  • RhanHRhanH
    Posts: 1,138
    Welcome to the forum Jacksonr1023.

    The ladies have shared lots of useful information here, but please feel free to ask any further questions when you’re ready.

    If you haven’t already done so you may also find it helpful to check out our known support groups, as there may be one near you that could help: https://www.zeemaps.com/view?group=1665768&x=-1.363501&y=53.432604&z=13

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