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.
Scottish Strategy Autism . Future Priorities Consultation .Meetings for Parents and Professionals.
  • Holly59
    Posts: 2,586

    Holly59 said:


    Just a quick reminder the first consultation takes place on Wednesday 22nd in Edinburgh . You must register in advance for any of the locations .
    We must share our experiences of ASD - PDA , it's really important as many parents /Carers / professionals attend these meetings .

    Pat xx
  • Holly59
    Posts: 2,586
    Hi,
    All of us who attended the Consultation in Edinburgh yesterday thought it “showcased PDA “. I felt personally there was massive progress especially with the outcome of the Petition .

    If any PDA parents / Carers / Professionals could attend the other meetings it would make an even bigger impact than we did yesterday .

    There has been a lot of discussion behind the scenes since .

    https://www.facebook.com/groups/1129228007099112/

    Andrea posted her experience of the Consultation yesterday . Worth reading .

    Hi there! I attended the Scottish Strategy for Autism consultation event in Edinburgh today. from a PDA perspective , it was good I thought. Patricia Hewitt( one of the ladies who petitioned Scottish government over wider recognition) got to ask the first question in the opening question section and of course it was a playdoyer (?) for PDA . For the rest of the morning we were split up into smaller groups and I can obviously only feed back from my group ( 5 people) consisting of a support worker, woman from PaSDA , someone from the mental welfare commission and 2 PDA parents . The topics raised and minuted - amongst others- were poor awareness and training of professionals about pda and postcode lottery, a culture of parent blaming in some parts of Scotland and the need for raising awareness of female presentation and masking in autism. also lack of services to address anxiety especially for higher functioning individuals . I said there should be a section on PDA in the Scottish Strategy for autism - even if it is to say that there is a debate ongoing- and case examples should be included in the flagship Autism Toolbox . I commended the section ( in autism toolbox) on girls which described masking , but said the language used is important and the term “ masking” should be used . A person from the Scottish government ( sorry should have remembered her name)sat in on our group and wrote the notes. She was doing the opening and closing remarks of the morning addressing everyone in the room. For her closing remark, she said she hoped everyone enjoyed airing their views and that she had personally learnt a lot . you can fill in the online questionnaire ( see a few posts down) until the 29th Nov , please everyone do! I am cautiously optimistic that things are moving in the right direction.


    Pat xx
  • Holly59
    Posts: 2,586
    Next Meeting Aberdeen 1 st December .

    Inverness 5th December

    Glasgow 23 th December

    You must register for the event by clicking the link .

    http://autismnetworkscotland.cmail19.com/t/ViewEmail/t/DF76907F91744FA0
  • Holly59
    Posts: 2,586
    https://www.pdasociety.org.uk/forum#/discussion/5523/autism-stratagy-for-scotland-response-to-pda-petition-page-5-schools-inundated-with-new-as-cases

    Unless I am looking in the wrong place the Minutes from this meeting have disappeared when the Stratagy Team we’re discussing our Petition .

    Their response was an absolute disgrace to Parliament .

    A Clinician who will give a diagnosis on the Committee , she was absent that day , and Jenny Paterson , Director of the NAS in Scotland who recognise PDA as being on the Spectrum is on one of the Committees .Mrs Paterson signed our Petition and the NAS Scotland submitted evidence to Petitions that PDA is on the Spectrum and the NAS UK recognise PDA . There was a representative from the NAS on this Committee , why didnt she submit evidence that the NAS recognises PDA as being on the Spectrum ?

    “IThe Petition was being pushed by a group of Lothian Parents , I live just outside Kelso and Mary lives in Chirnside in the Borders . Media based . It was a total insult to those who have researched the evidence and promoted the awareness of PDA over the years since Prof Newsons first recognition in the 80s .

    Disgraceful submission .

    Can we ask for a copy under freedom of information ? Has anyone a copy for the next Consultation Meeting so this can be discussed . I have put this in my written submission .

    Pat xx
  • Holly59
    Posts: 2,586

    Try asking on www.whatdotheyknow.com?



    Thanks .

    The “A” team is on the mission . Rather like “Mission Impossible “ some days . Will let you know the outcome . Just pleased you and I commented on the minutes .

    Pat xx
  • Holly59
    Posts: 2,586
    http://autismnetworkscotland.cmail19.com/t/ViewEmail/t/184EA9CB2005F271/9042E33060825E9C2C69F821C9DCC086

    Please note that if there was enough demand an EVENING session could be added .Wonder if they will return to Edinburgh and have an evening meeting there?

    Pat
  • ducky
    Posts: 1
    Hi

    I just wondered if anyone could help? My 10 year old son was diagnosed with Autism in January after 9 years of us fighting for someone to listen to us. We have literally been turned away from every professional possible until 1 teacher last year said to us that she thought he had ASD too and so she started fighting in our corner, wrote letters to anyone and everyone and eventually we got a diagnosis which was great. We have since found out that he has Hyperacusis, which he is using a sound ball at night for and we are currently waiting for an OT appointment to see if he has Dyspraxia and Hypermobility.

    I went onto Netmums to ask what happened next on the Autism side of things and thats when I was pointed in the direction of PDA, I have contacted everyone I have been pointed in the direction of but keep coming to the same conclusion and that is if you live in Scotland you're pretty much on your own. I contacted a really great woman, Sara from Autonomy but again she could only help me with so much as shes based in England. She did however give me a sort of check list for which my son scored enough to be considered as having PDA.

    We're in Edinburgh and after a 9 year battle getting Autism recognised we are completely and utterly drained but will keep fighting if thats whats it takes.

    I have spoken to my sons head teacher who, as soon as I mentioned PDA, said she has read about it and its interesting that I think my son has it as she sees some traits of it in him too. I've to keep her posted about the progress I make, which so far is nothing. I did however print off a whole information sheet about it and she had her staff read it so I feel hopeful that shes on my side.

    Just totally at a loss as to what to do now? How do I go about getting a diagnosis? Can I travel to England to get one or does it have to be in Scotland? Is it important to get one? Are there support groups in Scotland for people?

    Any information would be very much appreciated.

    Thanks

    Lindsey
  • PDA_ASD_Parent
    Posts: 4,188
    How fabulous to find this teacher, it makes such a difference when someone finally listens and sorry you had such a battle. Many of us have and you are far from alone in that unfortunately.

    Are you sure he has hyperacusis and not auditory hypersensitivity (potentially as part of a sensory processing disorder) as hyperacusis is normally related to hearing damage. They often recommend exposure to noise (auditory integration training) for hyperacusis which is torture for an autistic with auditory hypersensitivity and doesn't work!

    You might find this information useful:

    Here is actual research evidence of the physical ear issues in autism:

    "Controversial study uncovers hearing glitch in autism"

    "The so-called stapedial reflex causes the tiny stapedius muscle inside the ear to contract in response to a loud sound. The reflex pulls the stapes bone away from the inner ear, which dampens the sound’s effect and protects the inner ear from too much vibration.

    In children with autism, the reflex is a split second slower and triggers at sounds a few decibels lower than in typical controls, the study found."



    http://sfari.org/news-and-opinion/news/2013/controversial-study-uncovers-hearing-glitch-in-autism

    Auditory Integration Training does not benefit people with autism (therefore it stands to reason that auditory hypersensitivity in ASD is not the same thing as hyperacusis):

    http://www.aaiddjournals.org/doi/abs/10.1352/0895-8017(2000)105<0118:AITFCW>2.0.CO;2

    http://raisingchildren.net.au/articles/auditory_integration_training_th.html/context/905

    Is the "checklist" this lady gave you the Extreme Demand Avoidance Questionnaire?

    If anyone in the NHS tells you he has an ASD diagnosis and that's enough, it's not, because he needs the specific subtype diagnosed as PDA has different techniques and strategies.

    Help for Psychology in Norfolk do Skype screening for a reasonable fee to see if the PDA assessment is warranted to save travelling for nothing. https://help4psychology.co.uk/ Dr Judy Eaton is fabulous and very expert in PDA.

    It's a real benefit that you have school staff behind you in this.

    Here are the PDA educational support techniques which you can ask the school to follow:

    http://www.aettraininghubs.org.uk/wp-content/uploads/2012/05/5.2-strategies-for-teaching-pupils-with-PDA.pdf

    I'm sure Pat will be on here to advise more about Scotland but if you search Scotland on the forum some threads with relevant information about your area will come up.
  • Holly59
    Posts: 2,586

    ducky said:

    Hi

    I just wondered if anyone could help? My 10 year old son was diagnosed with Autism in January after 9 years of us fighting for someone to listen to us. We have literally been turned away from every professional possible until 1 teacher last year said to us that she thought he had ASD too and so she started fighting in our corner, wrote letters to anyone and everyone and eventually we got a diagnosis which was great. We have since found out that he has Hyperacusis, which he is using a sound ball at night for and we are currently waiting for an OT appointment to see if he has Dyspraxia and Hypermobility.

    I went onto Netmums to ask what happened next on the Autism side of things and thats when I was pointed in the direction of PDA, I have contacted everyone I have been pointed in the direction of but keep coming to the same conclusion and that is if you live in Scotland you're pretty much on your own. I contacted a really great woman, Sara from Autonomy but again she could only help me with so much as shes based in England. She did however give me a sort of check list for which my son scored enough to be considered as having PDA.

    We're in Edinburgh and after a 9 year battle getting Autism recognised we are completely and utterly drained but will keep fighting if thats whats it takes.

    I have spoken to my sons head teacher who, as soon as I mentioned PDA, said she has read about it and its interesting that I think my son has it as she sees some traits of it in him too. I've to keep her posted about the progress I make, which so far is nothing. I did however print off a whole information sheet about it and she had her staff read it so I feel hopeful that shes on my side.

    Just totally at a loss as to what to do now? How do I go about getting a diagnosis? Can I travel to England to get one or does it have to be in Scotland? Is it important to get one? Are there support groups in Scotland for people?

    Any information would be very much appreciated.

    Thanks

    Lindsey



    Hi Lindsey,
    Welcome to the Forum ,

    I was the main Petitioner of the Scottish Petition due to the horrendous story I have had with my two boys now 20 and 21 .

    First of all all you need in Scotland is that you as a parent have recognised your child as having PDA . Under the Additional Support for Learning Act a formal diagnosis is not required , it’s needs based . GIRFEC , exactly that , and the Wellbeing Wheel they have a duty to protect a child’s mental health , that means using PDA Stratagies.

    Short term this is all you need but long term you really do need a formal diagnosis preferably before they are 18.

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


    Third link down about a diagnosis . It’s a teachers responsibility to understand the Law !!


    I presume you now have a CSP . You can add the PDA because you do not need a formal diagnosis for a CSP either .

    Couple of options Help4Psychology as suggested . I have read a couple of their reports they are brilliant . Another option , although they are not recommended as yet by the PDA Society is The Autism Academy UK based in St Andrews who will give a ASD - PDA diagnosis .

    Saying that Sick Kids failed to recognise , ASD , PDA. or the type of Epilepsy one of my sons has . I mentioned this in my evidence to Parliament , “ Isn't time to worry when Sick Kids don’t recognise any of these” , it was me a parent who recognised everything in the end . So many so called Professionals failed us over the years .


    https://www.autismac.com/

    Your other option is to fight to get a referral to a unit who will diagnose . There is a Unit in Newcastle too . There is a Unit in Fife who will diagnose , have you tried for a referral to Sick Kids or Yorkhill . There is a Specialist ASD Unit in Glasgow . It’s still very much a Post Code Lottery .

    Support groups are listed .

    https://www.pdasociety.org.uk/resources/blogsandfacebookgroups

    If you are on FB the main one is PDA Awareness Scotland . There are regional FB groups too . We do have BANG in Galashiels in the Borders if you wanted to travel down . They are a friendly really proactive group with quite a few PDAers on their books .

    The Webinars are the easiest way to learn , these are on the link .

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

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

    My youngest son is at Edinburgh College at Sighthill and they are using PDA Stratagies , we don’t have a formal diagnosis it would be illegal if they did not .

    He has been diagnosed with Hypermobility too about 14 months ago . Failure after failure to recognise .

    https://www.tinnitus.org.uk/hyperacusis

    One of mine has been diagnosed with this .

    The eldest was diagnosed with Borderline Dyspraxia at 5 , another missed opportunity . His is off scale , not Borderline .

    http://www.autismtoolbox.co.uk/understanding-autism/diagnosis/

    The Autism Toolbox which every teacher has access to links to the PDA Society .

    http://www.parliament.scot/GettingInvolved/Petitions/PE01625

    This is the relevant section .

    9 November 2017: The Committee agreed to close the petition under Rule 15.7 of Standing Orders on the basis that the Scottish Government is clear in its view that PDA is covered within ASD diagnosis; this position is in line with the international standards of best practice as established in ICD-10 and DSM-5, and is reflected in its national guidance SIGN 145 which has been developed by a multidisciplinary working group which has taken account of the scientific literature and evidence; work is also ongoing in relation to the Scottish Strategy for Autism, and NES has provided additional resources and support tools for the health and social care workforce. In closing the petition, the Committee agreed to write to the Scottish Government to indicate that PDA awareness should be included in the ongoing work on the Scottish Strategy for Autism. Link to Official Report 9 November 2017

    CONTACT , was Contact a family in Edinburgh are also very proactive in supporting PDA .

    https://contact.org.uk/advice-and-support/local-support-services/contact-in-your-area/offices/edinburgh/

    Donna Tomlin is the person you need to contact .

    Enquire will give you information too . If you have any other children they are entitled to extra support, it’s anything that puts a barrier to a child’s education . They need an IEP.

    Have you approached Carers UK for an assesment of your needs . They can also help with paperwork for DLA / Carers if you have not already done so .

    https://www.vocal.org.uk/

    http://www.autism.org.uk/about/in-education/extra-help-in-school/scotland/coordinated-support.aspx

    http://www.autism.org.uk/about/in-education/extra-help-in-school/scotland/individual-plans.aspx

    DONT be fobbed off with an IEP . You need both .

    Agree it’s brilliant you have the support of your Headteacher .

    Have PM you too x

    Once you resurface just ask anything . There is a wealth of information on this site .

    Pat xx

Please Log in or Register to comment on this discussion.