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PDA Scotland . Why you do NOT need a formal diagnosis to get Support within Education and Care .
  • Holly59
    Posts: 2,586
    I spoke out Publically once again last week at the Scottish Autism Stratagy Team Consultation Meeting in Edinburgh .

    The outcome of the Petition was interesting . Basically what it failed to address is that if a CAMHS or Adult Services failed to recognise PDA that teachers who failed to implement PDA Stratagies were in breech of the Additional Support for Learning Act , where a formal diagnosis is not required , GIRFEC , and the Wellbeing Wheel , where they have a duty to protect a child’s mental health and make them feel both nurtured and well respected . Failure to use PDA Stratagies has breeched these Laws , it needs based .

    http://enquire.org.uk/parents/assessment/

    This is why the significance of our Petition was important for a number of reasons .This is how in my case everything started , It was Autism Iniative who told me I did t need a diagnosis and it was covered under the ASL act , so many Education Laws were breeched in our case and that’s never been addressed by Education Ministers , SGTC , LA . That is why I am returning to Petition Parliament over this matter and teachers in Scotland can refuse both ASD and PDA training . That’s shocking .We have ASD children being educated by untrained teachers .Farcical . So much for the CfE.

    http://www.parliament.scot/S5_PublicPetitionsCommittee/Submissions 2017/PE1625_R_PETS.pdf
    1.6. Is the relevant section . PDA requires specific Stratagies .


    Interestingly the dire response by the Scottish Autism Stratagy Team to Ministers , the Minutes have disappeared off line . They were offensive and shocking . We need answers to why so many on that Committee should have spoken out for us and failed to do so .

    https://www.pdasociety.org.uk/forum#/discussion/5923/scottish-strategy-autism-future-priorities-consultation-meetings-for-parents-and-professionals-

    What happens to all the teachers and LA that have breeched the Additional Support for Learning Act and other Education Laws over the years ?

    It has also left those teachers who have used correct Stratagies in an uncompromising situation . If the CAMHS did not recognise PDA then mental health support could not be given .

    So many teachers are wanting training but have been refused due to funding cutbacks . There is such a lack of Specialist Schools in Scotland , the private ones are so expensive , only a fraction of those who need specialist education are receiving it . Why has the NAS not opened more PDA schools ?

    The Autism Toolbox links to the PDA Society . As far as I can tell PDA has been discussed in the Scottish Parliament since 2006 including theSNP Minister for Childcare and early years . Unfortunately he has had to step down from the Post due to his inappropriate behaviour recently .

    http://www.autismtoolbox.co.uk/

    That the Petition suggests feeding through to the Scottish Autism Strategy Team and others , the information was already in the system .

    If you live in Scotland as a parent if you recognise your child as having PDA that’s all you need otherwise teachers and LA are in breech of the Law .

    Can I suggest anyone in the Borders who needs support or Advice please contact BANG support group in Galashiels who have been amazingly proactive in supporting PDA recently and totally professional .BAAGS at Galashiels too are very helpful. Not like another support group in the Borders who would only support illnesses which the LA recognised. Their behaviour was a disgrace in my case .

    http://www.bordersadditionalneeds.org/contactus.asp

    We are following through with an Awareness Day in St Boswell’s early next year and supporting parents effectively with both emotional and practical support .

    Can I also request that any parent in the Borders contacts Cllr Kris Chapman if they suspect their child has PDA . We are making case histories as evidence . We can then advise you what you are entitled to through BANG support group who have taken the lead in supporting parents and who to approach .

    GPs also need to address the situation where this “not requiring a diagnosis”, is being used as a double edged sword . PDAers especially need an accurate diagnosis as other issues such as LD , ADHD , and SPD may also be involved . My GP has written to NHS Borders for Clarification . I believe others are also writing for clarification .

    I hope this explains clearly and simply the situation for Scottish Parents requiring support , in both education and the support side .

    I am making an offer for both Ministers and myself to sit around a table and I will show you and explain where the failures to recognise the issues were over the years .

    Certain Ministers behaviour in my case was shocking . I hope that will be addressed as well in due course .

    It has taken nearly three years of totally unprofessional behaviour by so many , closing ranks and covering up the truth to reach the stage we are at now .

    FM has some serious questions to answer over PDA and certain Ministers behaviour .

    It’s about time the truth was exposed .

    We also need Government Funding for the PDA Society . They need full time Staff . It’s totally wrong and unfair that PDA parents are trying their utmost to help so many around the World on a voluntary basis .

    Parents are normally the best judge of their children’s behaviour. As Ruth Fidler and Phil Christie state , “Listen to the Parents “. Yes there may be a number of parents who misdiagnose but surely trying the obvious first and eliminate is better than the Parent blame culture we have at present . Waiting months and months for an assesment , look at Stockton on Tees four years ,being refused an out of area referral , prevention of Mental health issues is the main focus , by my experience that’s certainly not happening .

    PDA is REAL, it does exist .

    Patricia Hewitt

    http://www.parliament.scot/GettingInvolved/Petitions/PE01625
  • You are as I have said before Pat, a one-woman tornado. What you are doing is amazing.

    You are doing the job of the professionals.

    You and I have talked about this needs-based issue. I believe there to be a big loophole in all of the policies and laws that supposedly protect children's educational rights as regards SENs. Yes they all say support should be provided based on the child's needs, but unless there is a professional document stating the needs exist, whether that be an assessment, diagnosis or confirmation of needs, who is going to police and uphold it and on what basis? As we know, parent-blame is rife and especially with the children who mask in school, why will they listen to a parent saying their child has PDA (or any ASD) and needs PDA strategies and support? Why will they be prepared to spend money on supports for a child just on a parent's say-so?

    The reality of EHCPs in England is that most of the time diagnoses are required despite the fact that it too is needs-based. Allegedly.

    Thereby it becomes a con. Looks good on paper, but that's it. I think the governments know they are failing children. The policies and laws have been written to allow their misuse and a hefty dose of discretion. LAs and schools want to save money, of course.

    They just won't take a parent's word for it that a child has either SENs or a condition that warrants support. And this is the loophole. Professionals will say "where's the proof". Of course if a child has fallen below average (affecting the school's league table ranking) and is doing obviously badly, they might do something. But the maskers, the ones who are getting by and not reaching anywhere near their potential, will be ignored and parents will be told they have no concerns.

    And if a parent insists their child has PDA (or any condition) without professional diagnosis of it, they are at very high risk of being falsely accused of FII/MSBP.

  • Holly59
    Posts: 2,586
    Hi,
    I was frustrated that the issue of Education was not followed through by the Petition Committee . That’s how this started .

    It was amazing listening to parents and Support Worker at our table of the lengths we have to go to to receive any support . This amazing support worker spent four hours in a Bank sorting out a clients bank accounts .The complexity of some of the issues she dealt with for her Autistic Clients went far beyond a normal support workers role . One amazing lady .

    The issue is funding . The Charities don’t want to speak out in case they have their funding reduced and the likes of Enquire , your ipsea , and the Scottish Autism Stratagy Team are funded by the Government .

    That’s exactly what someone else said today , “You are doing the job of the Professionals “. My response was “ Someone has to speak out “ .

    It’s about time the facts were taken seriously and Laws upheld .Fed up with Autism Spectrum and Mental Health being at the bottom of the heap . Forgotten and shunned away . So little good practise out there.

    Carers are not appreciated for the role they do. Who would work the hours we do without any suitable respite or support. I am totally “ winging it “ at present . Cllr Euan Robsons support has been brilliant . If he promises to do something he does .Totally reliable and professional. I wish I could say the same for others .

    I believe the Geneva Convention should be used more often . The Government has a duty to protect a child’s mental health and provide them with a suitable education . If you do not use PDA Stratagies you fail to do this .

    It’s as simple as that . Nothing complicated .

    Pat xx

  • Agree with all you say. And there is the UN Convention on the Rights of the Child also. So many laws breached and all those in power rubbing their hands with glee at how much money they are saving. And then misspending on fat-cat salaries, golden handshakes, wining and dining and strewth knows what else.
  • Holly59
    Posts: 2,586

    Agree with all you say. And there is the UN Convention on the Rights of the Child also. So many laws breached and all those in power rubbing their hands with glee at how much money they are saving. And then misspending on fat-cat salaries, golden handshakes, wining and dining and strewth knows what else.



    I have offered to discuss this in a civilised adult manner around a table like I wanted to at the High School.

    If they don’t investigate my complaint to my satisfaction and move forward , Plan B is setting up a FB with all these letters and reports in full view for everyone to see .Would be rather embarrassing for a lot of people , Ministers downover .

    If they think I wouldn’t I, just try yet another cover up and close ranks fiasco .

    Don’t forget as PDA Parents we always have to have an alternative plan .

    Plan B in place after recent responses from those who should have helped me and failed to do so .They offered lip service nothing else .

    You would be surprised what a wee bit of gentle persuasion achieves as we both know from personal experience .



    Pat xx

  • Good for you. You can always put something on the Name and Shame page as URL links to files can be set up in the text describing what's happened.
  • Holly59
    Posts: 2,586
    Had a extremly positive meeting yesterday with Euan Robson how to progress from the Petition yesterday .

    Can I thank Gerry for reminding me of events that have happened in the past .The information provided has been used two fold . Your phone call was spot on time wise . You are an absolute “Star “.

    Please get in touch with BANG support group at Galashiels if you live within the Scottish Borders . We are all working together to promote and support PDAers both diagnosed and undiagnosed , and their families . If you live further afield and have difficulty finding a support group please get in touch and we will try our utmost to help .

    http://www.bordersadditionalneeds.org/contactus.asp

    Pat xx












  • Holly59
    Posts: 2,586
    Latest update .

    I emailed the First Ministers Office with a list of my serious concerns and a brief overview of what had happened in our case .

    The response was basically a whole load of Political Spin avoiding such issues as innapropiate and poor behaviour of Scottish Ministers and cop out Clauses to cover such actions . The normal “work to do “ piffle and “ Are you aware we have had a Consultation recently and had over 1000 responses .” . Yes , I attended the first and told you exactly how NOT ONE of your bloody Stratagies had worked , the only system that does work effectively in Scotland is the system to cover up the truth . It was me a mum who worked everything out after 17 and 18years of missed opportunities . Hence the Scottish Petition evolved .

    As you are now aware a formal diagnosis is not required in Scotland to access both Education and Social care .

    If CAMHS fails to recognise ASD-PDA for the present moment it’s irreleveant, long term a different matter as mental health care relevant to PDA is not available . . As long as you as a parent , or a teacher , GP , whoever , recognises your child as having PDA the Stratagies must be used .

    Oh Yes there is a BUT ........

    Teachers in Scotland can refuse ASD training . Yes I couldn’t believe what I was being told either . So for example teachers could be using PDA Stratagies in P1 to P6 in Primary School but the P7 teacher could refuse the training and all those years work would be in vain , Likewise in Senior Schools certain teachers could accept the training others can refuse .

    So in essence the Principles of GIRFEC , ASL Act and the Wellbeing Wheel where they have a duty to protect a child’s mental health and make the child feel secure and nurtured are being breeched by teachers refusing training and by not using PDA Stratagies .

    If anyone can explain to me the shambolic system we have and why this loophole was not closed please do as the FM has failed to respond to numerous questions I have asked .

    The next unbelievable thing I have learnt is as long as an MSP does something eg writes a letter asking a question , that is considered acceptable under Ministers Code of Practise . That a MSP does not follow through that’s irrelevant . In essence some MSPs are working their socks off trying to support Constituents , others do the least possible and that’s acceptable .

    If a MSP shall we say acts inappropriately there is nothing the Presiding Officer can do if that Minister moves to Westminster and becomes a MP .Strange I though we voted to stay part of the UK .

    If anyone can explain why we have Governments who don’t uphold Laws , has get out clauses for their own Ministers , teachers who can refuse Autism Training which in itself breeches Education Laws .

    That a Rector can illegally exclude a child without any paperwork , refuse to let him sit his prelims , deny him an education he was due , tell me that I needed a formal diagnosis , refuse to put support in which led to failure of two lots of exams and eventual sleep deprivation off the scale ,failure to refer, no transitions ,no CSP in one case , lies in the other ,had to fight tooth and nail to let him sit his exams out of school premises , this is the tip of the iceberg in our case . First time referred back to Council , nothing to answer for, second time Scottish General Teaching Council find this acceptable , case dismissed .

    An utter total farce . Remind you of the “ Emperors Clothes “ . Four hundred and fourteen million spent on a building , which basically is that complex and has a short shelf life and massively expensive to upkeep , remind me how much you have spent on Additional Support Needs and Mental Health Services ?

    No Legislation behind the Scottish Autism Stratagy , numerous families in crisis , but hey ho we now have a Mental Health Minister . Whoop woop . With pittance in the pot , no long term planning .Remind me when the first Scottish case was recognised 1998:

    Numerous Charities are aware of what’s happening but are doing very little to help our cause . So many could speak out but are failing to do so .

    Nothing ever changes does it . Total denial , total chaos . Swept under the carpet as usual .

    The most ironic thing is that teachers are the answer to help prove PDA does exist . Showing those who are reluctant to research the evidence , the actual evidence from classrooms where PDA Stratagies are being used , plus NAS accepts PDA . No brainer in my opinion .

    Patricia Hewitt .

    PS
    Shall I also remind the FM of my sons horrific second degree burns he received after nothing was done after the Galashiels Accident. No one has addressed this question .

    http://www.itv.com/news/border/story/2013-10-07/50k-fine-for-borders-council/

    I want answers . We know this is a totally false statement . It took a second accident before SBC did anything . School Safety a Priority , REALLY , the effect on my son was massive .

  • the only system that does work effectively in Scotland is the system to cover up the truth



    Same across the rest of the UK. Corruption from the top down. Cover-up all failings at all costs.

    Everything that special needs children need to access their education has to be fought tooth and nail for by their parents, creating a huge stress burden on top of what they already have to endure.

    Almost every single complaint parents make, whether it be education or NHS related are whitewashed, covered-up and denied.

    Every diagnosis even, has to be battled for with parent-blame being the first port of call to fob off parents. If they don't have money to do assessments don't put families through hell to get rid of them from your service, put them on the waiting list, assess them honestly and petition the Government for money funding!

    Parents are frightened off seeking social care support because of the atrocious false allegations so frequently made against them.

    The whole system is a nasty, Kafkaesque nightmare. This is causing a whole pot of trouble to brew which will be catastrophic at some point.
  • Holly59
    Posts: 2,586

    the only system that does work effectively in Scotland is the system to cover up the truth



    Same across the rest of the UK. Corruption from the top down. Cover-up all failings at all costs.

    Everything that special needs children need to access their education has to be fought tooth and nail for by their parents, creating a huge stress burden on top of what they already have to endure.

    Almost every single complaint parents make, whether it be education or NHS related are whitewashed, covered-up and denied.

    Every diagnosis even, has to be battled for with parent-blame being the first port of call to fob off parents. If they don't have money to do assessments don't put families through hell to get rid of them from your service, put them on the waiting list, assess them honestly and petition the Government for money funding!

    Parents are frightened off seeking social care support because of the atrocious false allegations so frequently made against them.

    The whole system is a nasty, Kafkaesque nightmare. This is causing a whole pot of trouble to brew which will be catastrophic at some point.


    I have t even started on DSA and SASS funding . I was reduced to tears last week and it’s no where near resolved . He started the Course in August 17 and Edinburgh College knew about the additional issues in November 16 because I mentioned the latest development in evidence to Parliament in January 17..

    If the issues are not resolved and soon I have no option but to take to the next level . I am sure this is not what the College wants because of what it will expose . I don’t accept “ White Wash “ reports .

    Just get fed up of fighting the system . Well done the Welsh Mum for speaking out to the BBC recently and all others who have spoken to the Press to highlight PDA .

    http://www.bbc.co.uk/news/uk-wales-42791769

    My submission from the Petition .

    To understand PDA you must first have a good understanding of Autism Spectrum. It has been my experience over the years trying to find answers for my children's behaviour that there is an endemic failure to recognise and diagnose Autism Spectrum. The understanding in CAMHS is shocking. The strategies and policies we have are not worth the paper they are written on. There was no early intervention. Lack of investment and training in mental health services by governments is to blame. Support to my family has been virtually non-existent, leaving us past crisis point. It's left my children with preventable mental health issues, a failed education, social exclusion and ongoing undiagnosed issues years later. For my family and so many others it's too late. The damage is done. Had the awareness of PDA been available, and it was formally recognised, the horror story my family has encountered was preventable. It has been proved by the early intervention of a child in 1998 PDA strategies do work. Who will take responsibility for my children? Who will care for them 24 hours a day, 7 days a week? They require specific PDA strategies. Normal Autism strategies do not work. Phil Christie and Ruth Fidler, the world's leading experts, emphasise "listen to the parents". So many lives have been destroyed. Scotland, make an inspirational decision and formally recognise PDA. That will set the precedent for the rest of the UK, then the world.
    Patricia Hewitt
    15:05 on 07 Dec 2016

    Pat xx

  • Holly59
    Posts: 2,586
    This parents issues have not changed . Each night she does the same “ Prays and Prays” but no help comes . The only support parents on FB and Forums . Another statement we shared in one of our submissions to Parliament .

    “I am a mum with two teenage daughters wrongly diagnosed. Both present with blatant PDA but it’s not recognised here. Night after night they verbally and physically abuse me. Because the school and CAMHS won’t recognise PDA, the correct strategies are not being used. They have destroyed so many precious things in rages. Medication makes them worse. The bruises and horrible things they say, blatant lies. I am terrified of my children. I can’t find anyone to help or who understands. I can’t tell anyone or they will take my children into care. I will be accused of abuse. They totally control their lives and mine. I rarely leave the house. I get no support, no respite. I fight a system that totally has failed my children and my family. The Children’s Panel are involved, the Social Worker ridicules me. The option is I leave my children and they will be taken into care. I have prayed and prayed but no help comes. I just want all this to end.”

    She was and still is such an inspirational mum for allowing her story to be shared with others . So many other parents have said how this is so much like their own situation .

    Pat xx
  • Holly59
    Posts: 2,586

    Good for you. You can always put something on the Name and Shame page as URL links to files can be set up in the text describing what's happened.



    Unless I get a response from whom I have been fobbed off too that will happen soon . Remember the “erratic “word . Have had inspirational support and dire support .

    My friend is popping along soon to help me set up a FB page and give me lessons . I have no hesitation in sharing the letters from all levels online . That’s includes Ministers Letters.

    Pat xx
  • Holly59
    Posts: 2,586
    wholeheartedly agree with every aspect of the Petition . I am another parent with ASD - PDA children who the system has totally failed . It was myself a parent who recognised ASD issues where so many Professionals failed us . My children have been denied an Education and Childhood , not one of the Autism Stratagies in place has been effective . The Scottish Autism Strategy , GIRFEC , Education Laws , early intervention , not worth the paper they are written on . I was abandoned by my SW , she was very nice but totally clueless on Autism Spectrum . Because my eldest son could not engage with an Autism Charity we were told there was nothing further they could offer . My parentening skills were questioned , I was offered Parentening Classes . One child was handcuffed by Police after a meltdown . Yet after one meltdown the only people who would help were the Police and Ambulance Service . CAMHS didn't want to know , SW on call fobbed us of to GP following morning . Some of my PDA friends have had children removed or threatened by unprofessional SW or the Children's Panel . Parental blame is rife , we do an amazing job with so few resources . Hence as Main Petitioner the Petition PEO1625 evolved . We need to raise awareness of PDA and get the recognition and support to parents and their children . As I said in our Petition " The only system that works effectively in Scotland is the System to cover up the truth " . Named Person should be abandoned , it is unworkable . We need a system that works to keep families together and provide support we desperately require . One of my children , a very intelligent young man will spend his life on benefits , the other due to an inspirational team at Edinburgh College is now doing a HND Music course using PDA Stratagies , the first student to do so . I can't afford a QC to fight the system when people act totally unprofessional and are dishonest. Enough is enough .Parental blame must stop NOW
    Patricia Hewitt
    22:14 on 05 Sep 2017

    A number of PDA Parents have submitted evidence to this ongoing Petition at Holyrood .

    http://www.parliament.scot/GettingInvolved/Petitions/PE01673

    http://www.parliament.scot/GettingInvolved/Petitions/PE01548

    Beth Morrison’s Petition about restraint in schools .

    http://www.parliament.scot/GettingInvolved/Petitions/PE01651

    Issues about prescribing antidepressants . Relevant to PDAers .

    There are a number of others relevant including vaccines and ,
    Mental Health issues .

    Pat
  • Holly59
    Posts: 2,586
    http://archive.scottish.parliament.uk/business/committees/petitions/or-06/pu06-1002.htm

    Col 2606

    John MCDonald talks about PDA and the fine work going on in Nottingham to ensure people are not misdiagnosed.

    Look at the date !

    Wednesday 31 May 2006

    First case in Scotland recognised in Glasgow and was diagnosed by Professor Newson with Phil Christie present in 1998.

    John McDonald: I do not want to prolong the discussion, but there has been a process of learning about autism. The condition was identified only in 1943 and there is some way to go towards identifying the features that differentiate one end of the spectrum from the other.

    In Nottingham, the local autism organisation is working on differentiating between autism and pathological demand avoidance syndrome, which at first sight looks like autism, but is entirely different. People with pathological demand avoidance syndrome can engage socially and manipulate social situations, whereas people with autism simply cannot do that. Fine work is going on in Nottingham to ensure that people are not misdiagnosed.


    Pat xx

  • Holly59
    Posts: 2,586
    http://www.parliament.scot/ResearchBriefingsAndFactsheets/S5/SB_17-23_Autism_Spectrum_Disorder.pdf

    Page 8 PDA mentioned .

    http://archive.scottish.parliament.uk/business/petitions/pdfs/PE794.pdf

    Although PDA is not mentioned the huge increase in ASD cases is already on the Radar .


    http://www.parliament.scot/S5_Education/Inquiries/20170222ESASNSubmissions.pdf

    Page 113 Absolute scathing report from a families experience in Fife of their ASD- PDA child

    Page 161 Anon parent ASD - PDAer

    Page 205 Anon ASD- PDAer

    None of the PDA families were getting the support they needed, just the opposite infact .Horrendous .

    Page 29.

    It should also be noted that while teachers are regulated by the General Teaching Council of Scotland (GTCS), there is currently no independent regulatory oversight of classroom support.
    Pat xx
  • Holly59
    Posts: 2,586
    I commented on this enquiry but my comment is not available for public view for a number of reasons . As you can imagine it was scathing of the system we have .

    PDA-ASD-Parent and I have been reading the document together and commenting off line . This document is WORSE than the Clinicians report the PDA Society did a wee while ago and I thought it couldn’t get any worse than that .


    No doubt they will have more consultations to delay the inevitable realisation the majority of the system is in a shambolic mess and the long term damage to both families and children continues .

    No wonder the teachers are threatening to strike . The ANA are put under immense strain . One commented that we are being used to “Police “ the classrooms and not properly supporting the children .
  • Holly59
    Posts: 2,586
    http://www.parliament.scot/parliamentarybusiness/report.aspx?r=9891&mode=html#iob_90577

    17.09 Mark McDonald . 01 April 2015 .

    It is often felt that the view of many organisations is that autism is something that affects children. We need to break down some of those perceptions and make organisations understand that, although the support that an individual requires in childhood will not necessarily need to be absolutely mirrored, it cannot simply be radically altered at the point at which they move to being the responsibility of adult services. We also need to make sure that there is a clear path for individuals as they move through the different age brackets in which social care services address their needs.
    Wider benefits can be realised as a result of Scotland becoming more autism friendly. First, a recognition and understanding of sensory issues will benefit people who are not on the autistic spectrum but who have associated conditions. One group that has come to my Facebook page today is individuals who have children or relatives who have been diagnosed with pathological demand avoidance, which is associated with autistic spectrum disorder but does not always get the support that they feel it deserves.

    This guy has stepped down from his MInister for Early Years Role .

    http://www.thenational.scot/news/16042286.Former_minister_Mark_McDonald_facing_expulsion_from_the_SNP/


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