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please help
  • dc11
    Posts: 3
    Can anyone please help as my family (myself, husband and 3 kids 18,16 & 14 are struggling to come to terms with our gorgeous 10 year ol boy. He was diagnosed with autism and pda last week and we all just feel as though we are in a storm we have had no support at all and we have all spent the last 4 days in tears wondering where to go. Any help would be greatly appreciated. We live in the Glasgow area. Thank you
  • bagpuss24
    Posts: 18
    You aren't on you own.

    On our initial assessment with Cahms, we were told that once, and if our son received a diagnosis - that's virtually all it is - a bit of paper.
    Support wise, we were told there was not much available - and that it was a lottery where we could receive it. (At least they were honest)

    Though, with a diagnosis - we were told, it should make more things available - such as access to support groups, not only for your PDAer but also siblings and families.

    I am (yet) to find something specifically aimed at PDA in our area.
    So far, we have had to rely on this Forum for suggestions, ideas, strategies, common sense, keeping our sanity and also provide us with a wealth of very useful printed information.

    Our local authority has only started to recognise PDA within the last year or so - and many schools have since had meetings about supporting children with PDA.

    So - hopefully, they may be taking it all a bit more seriously.
    But before long - the age old "Lack of Funding" will raise it's ugly head somewhere.

    In our experience; it's a lack of Understanding by such "professionals".
    When we first suggested PDA - some years ago - we were asked if it was something we had made up to suit our sons behaviour.....

    Maybe, this "Lack of Understanding" is just another method of saying "There's nothing up with your son, if we diagnose him, we'd need to diagnose more people and that would cost more money"...... wouldn't surprise me in the slightest!

    I do hope you find some support - the best place to start would be here; there are plenty of very experienced and knowledgeable members on here - and parents going through the same too.

    OK - our house some days has anything from toys to pieces of furniture flying about at will - enough to give the Enfield Poltergiest a run for it's money! But we just persevere and get through each day - trying different strategies, looking for flashpoints and trying to keep anxieties to a minimum!


  • June67
    Posts: 781
    Number one pause take a breath and remember it's normal to feel shocked upset etc straight after diagnosis that was the not so great news; the good news is you now know what the issue is for this little star and can start to get informed about how to help him. There is lots of information on this site and it will take time to work out which bits are useful and apply to you. Many of us parents and siblings are often clinging on wondering what we can do just to get through each day so you are not alone. Reducing his anxiety and giving him control over small things that don't really matter in the scheme of things will help, our son rarely eats at the table as he finds the smells of others foods too challenging so we let him have his food elsewhere but still in sight, this has made mealtimes a bit better. Small things like this can help to reduce the over all load on you all as a family. Getting the rest of the family on board can be an issue but if you all work together to share the load and begin to understand why he does the things he does you will move forward. There are some good books on this website and the Can I tell you about PDA or Autism books are a good quick read to help siblings.

    You will hopefully get some support from CAMHS and school but I'm unsure how the system in Scotland works but there are many members who are in Scotland who can advise, browse the posts to help you. You can also get help using the contact tab from members who give more 1:1 type advice to help you get started. Sorry I cant be more help but remember you are not alone in your issues and will always find someone who understands on here. Good luck June
  • dc11
    Posts: 3

    Thank you Bagpuss24 and june67 for your kind words. We were informed that our son is unable to access camhs as he does not have a mental health condition!. We honestly feel like we are in a storm and as a mother who can fix anything (as job entails) i feel that extra pressure of trying to hold my family together. Last week when we got diagnosis we were given a leaflet which would offer support. The first number i called stated they onlky deal with over 16s, the second number i was put on hold for ONE HOUR AND 15 MINS before i closed the call, i then tried the parents support line were i was met with an automated message asking me to leave details and someone would get back to me within FOURTEEN DAYS! at this point i could't leave a message as the tears were streaming and i was unable to speak. It comes to no surprise that our boy had something not right as we had him assessed aged 4 which came back as ados classification "autistic" but he could not get diagnosis as he did not have meltdowns, we have recently been advised that this was due to our family scaffolding him in order that he would not have a meltdown. I at this time feel completely let down as all through his appointments i stated that we were struggling to cope and was comforted with once they knew what they were dealing with we would be send to appropriate services. I am usually a positive person but feel like i am failing my beautiful boy as i am drowning with all this going on. We were also advised that he is an essence child (he has parts of everything) which makes it harder. we have joined fb for support and with you beautiful people on here i feel that things are going to be ok so thank you both for that. Dxx
  • June67
    Posts: 781
    PDA is caused in part by high levels of anxiety which stop our kids functioning within the normal ranges of behaviour, it is ridiculous for your camhs to say he won't get help with this as he does not have a mental health condition. If they leave it too long it won't be just him suffering with issues it will be the whole family. This bloody minded buck passing in our overstretched underfunded so called health service is making me very angry, I'm sorry they appear not to be able to help you. My advice make a nuisance of yourself at the GP say you're not coping and you need better support and a referral to CAMHS or other service to help you all, they will hopefully get sick of things and make some kind of referral. If all else fails read as much as you can, reduce his stress levels and focus on one small change at a time trying to work out what it is about things that cause them to be stressful. Spotting any sensory issues may be key here. Be prepared to live life your way (or his) and sod what the rest of the world says. Keep going.
  • Kallie79
    Posts: 27
    Hi dc11.
    I'm in Scotland too and my son is 9, Currently undiagnosed but on the waiting list for CAMHS. I know exactly what you're going through at the moment. I have a19 year old son who went off to live with his dad at 17 as home life with his younger brother was too much for him. We as parents feel pulled in every direction and it's very exhausting. I know.
    Your son's school MUST provide him with all the in school supports he's entitled to with or without a diagnosis. It's the law. I'm not entirely sure about supports in Glasgow but I'm from Edinburgh originally and I know that as a major city, there must be something available within your area which your son and yourself and other children can access right now. Have you heard of Children 1st? They're a good support network and I'm pretty sure they have a Glasgow branch. They've helped me with things like anxiety coping strategies, in school one to one work , day trips out for the family and practical things like clothing and Christmas presents ect. They can also put you in touch with other support agencies if needs be. Worth a Google maybe.
    I hope you're well.
    Here anytime to chat.
    K
  • dc11
    Posts: 3
    Thank you Kellie79 you are a star xxxx

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