Sign In

Please sign in using the log in form at the top of this page or click here

Not a member

You need to register before you can start a new discussion or comment on a post.

Click the button below to go to our forum registration page.

In this Discussion

Welcome to the PDA Society Forum. Please take time to read the 'Forum terms and conditions', which can be found via this webpage:https://www.pdasociety.org.uk/terms-and-conditions and also in our NEW Forum User Guide: https://www.pdasociety.org.uk/forum/forum-users-guide-created
Messages in the 'General Discussions' category of the forum are visible to all internet users. You are therefore advised not to post anything of a confidential nature in this category.
Welcome to the PDA Society Discussion Forum. Please read our User Guide for more information and contact forum@pdasociety.org.uk if you would like to join one of our closed Member Forums for registered members only.
how to get a potential PDA diagnosis for my 6 year old son in Scotland
  • Hi everyone ,
    I have just joined the forum and was looking for some help or advice . My son is 6 years old and has been diagnosed with ASD since he was 3 years old . He doesn't show the "normal" signs of autism . For example , he is a great speaker , can read perfectly and has no issues with eye contact or sensory issues . What he certainly does have though is a terrible temper which can be violent a lot of the time and has a real problem with following rules . We as a family can't go to restaurants as 90% of the time his behaviour is explosive and his language is really bad . We have spent countless hours reading about PDA but when we asked CAMHS in Glasgow about it they showed no interest as it's not widely recognised in their eyes . We would really appreciate any advice as we love our son dearly but can see him being alienated in School more and more .
    Thanks
  • Em83Em83
    Posts: 68
    Welcome to the forum Toshmckinlay1. It is really difficult when professionals do not always understand or take interest in what we think or see as parents. I have experienced similar difficulties about a range of things with my son and CAMHS and often it feels like I am telling the professionals , but they do not get it. One thing that may be of use is the extreme demand avoidance questionnaire. https://www.pdasociety.org.uk/resources/extreme-demand-avoidance-questionnaire
    Whilst it is not a diagnostic tool it can help to show professionals exactly what you are talking about. It may be worth trying to get a second opinion, we have done this before with CAMHS, sometimes different doctors are more aware of PDA than others or more open to our thoughts and research as parents. Sometimes we just have to keep bringing it up and repeating ourselves to be heard in my experience.
    It is also worth accessing support from other parents who are in a similar position. Building up a network of support can really help. We have a list of support groups here https://www.pdasociety.org.uk/resources/Support-and-advice/pda-support-groups and facebook groups here https://www.pdasociety.org.uk/resources/blogsandfacebookgroups of which there are some Scotland groups.
    And of course please keep posting on our forum for advice. We also have our enquiry line if you would like to speak to one of our volunteers. https://www.pdasociety.org.uk/contact

    Our information on the diagnostic process may also be of use.
    https://www.pdasociety.org.uk/families/diagnosing-pda
    It includes lots of useful information on how to pursue a diagnosis and some independent autism centres in Scotland that can diagnose PDA.

    I hope you can find some support for your family and your son.

    Em
  • RhanHRhanH
    Posts: 1,133
    Hi Toshmckinlay1 and welcome to our Forum.

    I think Em has shared lots of useful information with you, and I don't want to overload you with too much reading but I'd like to share a link to our family resources: https://www.pdasociety.org.uk/families/strategies and also our free webinars: https://www.pdasociety.org.uk/resources/webinars. Both of these share ideas on different strategies that you may find helpful to explore further.

    My daughter can exhibit very challenging behaviour and at 6 we also felt that we couldn't go out to restaurants or even to see family! However she's now 10 and has a much greater understanding of herself and is beginning to use her own self-regulation strategies. We're also much better at managing her anxities and have learnt to plan any trips out that we do, even a two minute nip to the shops! By taking the time, agreeing a plan and often an exit strategy it means our daughter feels more confident as she trusts us to resolve any difficulties and therefore we're able to achieve more and, have once again been able to enjoy a restaurant!

    We found Ross Greene's 'Plan B' collaborative approach, as outlined in his book 'The Explosive Child', really helped us as parents to change our thinking, and continues to help us work through difficulties together with our daughter; if she can take ownership of the solution it's more likely to have a positive outcome.

    I'm sure that you will be able to find strategies that work for your son and given time I hope you will be able to return to some activities like we have done. In the meantime please do keep posting and asking questions so that we can try to support you further.

  • KobiKobi
    Posts: 29
    Hi Toshmckinlay1
    When my daughter was still in school we found the PDA Society's strategies for teachers very helpful. The Senco did remove all mention of PDA, but instead typed them up as 'Strategies for dealing with X' and passed it along to her teachers. Can't say it made a huge difference but it was something. I also noticed there's a Facebook page for PDA Awareness in Scotland which might have some relevant information.
  • Holly59
    Posts: 2,586

    Hi everyone ,
    I have just joined the forum and was looking for some help or advice . My son is 6 years old and has been diagnosed with ASD since he was 3 years old . He doesn't show the "normal" signs of autism . For example , he is a great speaker , can read perfectly and has no issues with eye contact or sensory issues . What he certainly does have though is a terrible temper which can be violent a lot of the time and has a real problem with following rules . We as a family can't go to restaurants as 90% of the time his behaviour is explosive and his language is really bad . We have spent countless hours reading about PDA but when we asked CAMHS in Glasgow about it they showed no interest as it's not widely recognised in their eyes . We would really appreciate any advice as we love our son dearly but can see him being alienated in School more and more .
    Thanks


    Hi,
    I live in the Scottish Borders and Petitioned Ministers at Holyrood . You can get a diagnosis in Scotland but it’s very much a Post Code Lottery .
    You don’t need a formal diagnosis in school it’s needs based under the Additional Support for Learning Act .
    Couple of suggestions . Go to your MP/ MSP and get them to fight your case . Grow Communication at Polmont near Falkirk offer a pre assessment at £270 . You get an in-depth report as evidence . If you go for the full assessment this money is refunded. There is also another Private Assessment Centre in Glasgow but as far as I am aware they don’t offer a pre assessment route .

    Laura Kerbey from PAST is doing a training day in Glasgow at Barrhead but unfortunately it’s sold out . There might be a waiting list in case anyone cancels .
    If you want to PM me I can help with local information xx

  • Hi
    I live in Fife and have been told by my sons EdP that there is NO pathway for diagnosis in Scotland but have learned through this site that there is an NHS Psy trained to diagnose ASD with a demand avoidance profile a mile from my front door! I had been told to get GP referral to CAHMS but I am now being told that I have to ask for him to be referred to the Community Paediatric Consultants. So back to GP again. it really shouldn't be this difficult to access help for vulnerable children. This info was provided in a return email to one I sent to the SUPPORT section of this site.

    I have also been in touch with Purple House in Glasgow and they offer a pre assessment telephone call (£65), 1.5 hour appointment (195) to assess if a full diagnosis is required. A full diagnosis is approx 2,200. but will take 4-6 weeks.

    I was told by a knowledgable Educator today that we are often told to get a referral to CAMHS for our kids as they present with such high levels of anxiety (mental health) but the underlying cause of that anxiety is not mental health its the undiagnosed ASD - Community Paediatric Consultants.

    Hope this helpful.
  • I am attending the PAST course in Edinburgh on Monday and can share anything helpful.
  • Holly59
    Posts: 2,586

    I am attending the PAST course in Edinburgh on Monday and can share anything helpful.



    I am going . See you on Monday and will swap some information . It’s infuriatating to say the least!
    .I was at Holyrood today and our next Scottish PDA Petition is now under scrutiny . I was chatting to to the Senior Petitions Clerk . Hopefully it won’t be too long before it’s posted on the Petitions site .
  • Rubytuesday
    Posts: 289
    I went to a PAST course a few months ago. It was really helpful and informative. Lots of practical strategies and ideas. Hope you have a good day xx
  • islandmum
    Posts: 2
    Hello, first post here!

    We've been struggling with now 9 year old son's behaviour for years and due to his slow growth and poor eating/sleep I had worried initially that there was something physically wrong with him. All checked out fine. Then we noticed meltdowns getting more frequent and intense over the last 2 years along with a lot of anxiety and being increasingly subdued at school and explosive after it. His anxiety has meant it can be almost impossible to get out of the house and he needs a lot of reassurance about any plans. We moved to Scotland last August thinking he needed more time with us as a family but then had a bereavement in February which has added a lot of issues into the mix unfortunately...

    After a particularly bad couple of weeks with outbursts and school refusal we asked to speak to the school and it was actually them who suggested a ASD might be causing the anxiety... this was reaffirmed by the school counsellor and we were told to see the GP. To my surprise the very understanding GP agreed to refer immediately for assessments and so we are now waiting to hear back for the next stage of the process... ASD had never occurred to me - I just used to worry that he had some serious unpleasant personality issues :-( I then did some research of my own and stumbled across this website - having a real lightbulb moment! So many of the PDA behaviours fit my son exactly - he cannot be told to do anything, just getting him dressed and out of the house is an ordeal. He will not be on his own at any time - he will always take a sibling to the toilet with him, his eating habits are pretty disgusting and he really struggles to ever finish a plate of food. He can be charming and witty and funny, but also manipulative and very mean. As he is getting bigger the meltdowns have become more violent and we (and his siblings) are starting to get hurt by him. He's also really escalated the language - so much swearing and telling us hes going to kill us/chop off our heads etc. I've always seen his meltdowns as being overwhelmed and struggling rather than being 'naughty' as physically he's often clearly in fight or flight mode...

    It's been 8 weeks now and I really hope we hear something soon as have had no sleep the last few nights due to multiple wake-ups 'I cant sleep' - barging into our room and refusing to leave or get into bed and the days are very difficult to negotiate with two younger siblings to also take into account...

    How long did you wait for referrals? And was the Purple House process something you'd recommend to speed things up?

    IslandMum

  • Em83Em83
    Posts: 68
    Hi Islandmum welcome to the forum! I am not in Scotland so I cannot advise too much on Scottish process.. we waited about 6 months in Yorkshire for referral but this was a few years ago now and I hear the waiting lists in a lot of places are much longer now. Whilst waiting for the assessment process it may be worth trying different strategies out to see what helps. We did and this helped at the assessment as we could tell them what we had tried and what worked and didn't work! It may also help you through the waiting time, which can be so tough! I would also suggest joining a support group if you can as other parents always provide a wealth of support. We also have the enquiry line and the forum of course so please keep posting. Hopefully some of our members from Scotland will be able to advise further!

    Here are some links that may help:

    https://www.pdasociety.org.uk/families/strategies
    https://www.pdasociety.org.uk/families/managing-meltdowns
    https://www.pdasociety.org.uk/resources/resources-for-families
    https://www.pdasociety.org.uk/contact

    Take Care

    Em



  • Holly59
    Posts: 2,586

    islandmum said:

    Hello, first post here!

    We've been struggling with now 9 year old son's behaviour for years and due to his slow growth and poor eating/sleep I had worried initially that there was something physically wrong with him. All checked out fine. Then we noticed meltdowns getting more frequent and intense over the last 2 years along with a lot of anxiety and being increasingly subdued at school and explosive after it. His anxiety has meant it can be almost impossible to get out of the house and he needs a lot of reassurance about any plans. We moved to Scotland last August thinking he needed more time with us as a family but then had a bereavement in February which has added a lot of issues into the mix unfortunately...

    After a particularly bad couple of weeks with outbursts and school refusal we asked to speak to the school and it was actually them who suggested a ASD might be causing the anxiety... this was reaffirmed by the school counsellor and we were told to see the GP. To my surprise the very understanding GP agreed to refer immediately for assessments and so we are now waiting to hear back for the next stage of the process... ASD had never occurred to me - I just used to worry that he had some serious unpleasant personality issues :-( I then did some research of my own and stumbled across this website - having a real lightbulb moment! So many of the PDA behaviours fit my son exactly - he cannot be told to do anything, just getting him dressed and out of the house is an ordeal. He will not be on his own at any time - he will always take a sibling to the toilet with him, his eating habits are pretty disgusting and he really struggles to ever finish a plate of food. He can be charming and witty and funny, but also manipulative and very mean. As he is getting bigger the meltdowns have become more violent and we (and his siblings) are starting to get hurt by him. He's also really escalated the language - so much swearing and telling us hes going to kill us/chop off our heads etc. I've always seen his meltdowns as being overwhelmed and struggling rather than being 'naughty' as physically he's often clearly in fight or flight mode...

    It's been 8 weeks now and I really hope we hear something soon as have had no sleep the last few nights due to multiple wake-ups 'I cant sleep' - barging into our room and refusing to leave or get into bed and the days are very difficult to negotiate with two younger siblings to also take into account...

    How long did you wait for referrals? And was the Purple House process something you'd recommend to speed things up?

    IslandMum



    Hi,
    I live just outside Kelso in the Borders and I have had a Private Assessment through Grow Communication at Polmont near Falkirk .
    I run a number of the Scottish FB sites and I am Petitioning Scottish Ministers at Present .
    I will PM you .
    You do NOT need a formal diagnosis in Scotland for both Education and Support it’s needs based .
    Enquire have loads of information to help you .
    If you are based in the Highlands I lend a hand up there too .
    Pat xxx
  • Holly59
    Posts: 2,586
    https://enquire.org.uk/parents/assessment/
    Scottish Education Laws are different to England . You do not require a formal diagnosis of PDA for both Education and Support . Teachers must use PDA strategies . GIRFEC . The Well-being Wheel ensures a child’s mental health is protected , that means using PDA strategies .
    You do not need a formal diagnosis for a Co ordinated Support Plan . A CSP is a legal document and has to be adhered too .
    I would suggest to anyone struggling with support , please get in contact with Enquire and or Govan Law Centre Education section at Glasgow for free legal Advice .
    Pat x
  • islandmum
    Posts: 2
    Thanks Em83 and Holly59 for all of the info - I'll get reading up on the assessment and support side of things. The school has been pretty good so far but the real problem for him has been the loss of his previous support group and difficulties making 'good' new friends. it's left him very isolated... hence the anxiety has skyrocketed.

    IM xx
  • Holly59
    Posts: 2,586

    islandmum said:

    Thanks Em83 and Holly59 for all of the info - I'll get reading up on the assessment and support side of things. The school has been pretty good so far but the real problem for him has been the loss of his previous support group and difficulties making 'good' new friends. it's left him very isolated... hence the anxiety has skyrocketed

    IM xx


    The following independent autism diagnostic centres all assess and diagnose ASD with a profile of PDA in accordance with NICE pathways. These services can be commissioned either privately or by your Clinical Commissioning Group if they have approved funding for an assessment. N.B. discuss local funding pathways and process for independent diagnostic centres with your GP.

    The Elizabeth Newson Centre (ENC) – Nottingham
    The Lorna Wing Centre (LWC) – Kent
    Help for Psychology – Norwich
    Healthcare 4 Kids – Warwickshire
    ​Spectrum North West - Warrington
    ​Axia ASD - Cheshire
    The Spectrum Centre – Northern Ireland
    Grow Communication - Scotland
    Dr Gloria Dura-Vila - London or Psychiatry in London
    Purple House Clinic - Glasgow

    I used Grow Communication as it was the first Independent Centre the PDA Society recognised in Scotland . You can call for a free half hour chat to discuss your case . The need is so great they have expanded their business to meet demand . The pre assessment costs £270 and you receive an in-depth report . They also assess adults and have people travelling from throughout the UK to their diagnostic centre.



Please Log in or Register to comment on this discussion.