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

If you have previously used our old forum, please spend some time exploring the new forum. All the discussions have been copied over from the old forum. If you need any help please contact us using the link in the grey bar at the top of the page. Thank you for your patience.
Welcome to the PDA Society Forum. Please take time to read the 'Forum terms and conditions' post, which can be found in the 'announcements' area of the forum. Thank you.
When you log into the new forum for the first time, you may wish to select 'Mark All Viewed' from the blue bar above to stop all messages showing as 'new'
Scottish Parliament PDA Petition. PEO 1625 .
  • Holly59
    Posts: 2,263
    http://www.parliament.scot/GettingInvolved/Petitions/PE01625

    Our submission to Parliament is now online.

    The Scottish Government will meet on the 30 th March to discuss the responses .Mary and I are not required to attend.

    You will be able to watch this live . Once I receive a time and which Committee Room I will post the details .

    Can we once again thank all of those people who responded on and off the Forum . Our sincere thanks go to Euan Robson for his patience and understanding.

    Pat and Mary .
  • Holly59
    Posts: 2,263
    I sincerely hope the research suggested to Parliament highlights articles like these , exactly what we have explained in evidence both verbally and at the initial Petition Stage .

    http://www.pdasociety.org.uk/files/download/14dd731c9fae39a

    http://yvonnenewbold.com/childhood-violence-autism-pda-adhd-or-a-learning-disability-conference/

    https://www.facebook.com/thepdasociety

    Read the evidence for themselves on the PDA FB and Forum of the Worldwide Interest of the Webinar and the massive surge to promote and set up desperately needed support groups .

    As well as the negative we must also promote the positive side with correct Stratagies.

    http://www.berwickshirenews.co.uk/news/hannah-takes-on-ben-nevis-and-wins-1-4148921

    PDA is exactly the same as Aspbergers, each case is unique. How the symptoms present in Mary's Hannah and my two boys are complety different . Hannah is extreme PDA , my youngest was obvious from birth, the elder of the two boys was subtle but as he got older the symptoms intensified.

    http://www.autismassociates.co.uk/

    Training required at all levels.

    At present PDA is very much a Post Code Lottery. We need consistency, early intervention, acurrate PDA Stratagies and most importantly support.

    Pat and Mary xx
  • Holly59
    Posts: 2,263
    FOR SOUTH LANARKSHIRE (but good to see PDA on it):
    Subject: Re: PACT/SLT Training in ARCH
    I’m pleased to let you know that the plans to host a rolling programme of training workshops facilitated by the Paediatric Autism Consultancy Team (PACT) and Speech and Language Therapy Team (SLT) are now in their final stages, and will commence in the next month or so within ARCH.
    These will cover the following areas;
    · The Paediatric Autism diagnosis Process in NHS Lanarkshire
    · How a child or young person with autism is given their diagnosis
    · Information for parents of children with a Demand Avoidant profile (PDA)
    · Information for Professionals supporting children with Autism and Demand Avoidant profile
    · Visual Helpers workshop for pre-school children with Autism.
    · Social Stories and Comic Strip Cartoons for children with Autism.
    The day we’ve identified for these workshops will be on a Tuesday afternoon within the ARCH centre, and there are two of each specific workshop to be held over the course of the next 12 months. This means there should be 12 workshops in total…one per month once they commence.
    I will give you plenty of advance notice when the workshops are scheduled to begin, so you can submit expression of interest.
    There will be a maximum of 20 places on each workshop with a ‘first come; first served’ approach to signing up. We’ll obviously encourage as many parent carers from across South Lanarkshire to participate, although there will be one programme specifically targeted for professionals..
    This training commitment represents a significant investment from our NHS Lanarkshire colleagues into the autism agenda, and I look forward to welcoming the team to ARCH in the coming months.
    Reid Street
    Burnbank
    HAMILTON
    South Lanarkshire
    ML3 0RQ

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

    Posted on the Scottish PDA awareness FB page.

    Pat xx
  • Holly59
    Posts: 2,263
    https://m.youtube.com/watch?v=2t46-yr08vE

    These videos on YouTube of Harry explaining how PDA affects him are amazing.

    One of his statements about late diagnosis Aspbergers but it didn't cover everything rings so true in my family .

    At 19 and 20 we still don't have all the answers , it's exactly the same for Hannah she presents with Hypermobility, SPD and Dyspraxia none of which have been recognised.

    My youngest has just been diagnosed with Hypermobility, like Hannah should have been recognisable since birth.

    Hannah's Autism and Hypermobility were recognised by a nursery teacher but blatently ignored all those years.

    Pat
  • Holly59
    Posts: 2,263
    http://www.smarttalkersblog.com/2016/06/the-delayed-effect-of-anxiety-on.html

    " Masking " always gets a massive response on Forums .

    That and School refusal were mentioned by me in Parliament .

    http://thejigsawtree.org/school-refusal

    Pat xx
  • Holly59
    Posts: 2,263
    http://www.parliament.scot/S5_PublicPetitionsCommittee/Meeting Papers/Public_Briefing_Papers_-_30_March_2017.pdf

    http://www.scottishparliament.tv/

    As you will appreciate it's difficult to give an exact time frame for Thursday , our Petition is last to be heard .

    Pat xx
  • Holly59
    Posts: 2,263
    http://www.scottishparliament.tv/Home/Index/58d93386-a74b-4dfa-9765-0f6927a919e1

    Committee Room 5 .

    Unfortunately no time frame ! Ours is last on the agenda today .

    Pat xx
  • Holly59
    Posts: 2,263
    Hi,

    Just a quick update the Petitions Committee are requesting further evidence .

    They were very disappointed by COSLA not responding .

    We are through to the next stage .

    You can watch it on the screen ,which says Public Petitions Committee with a clock showing.


    If scroll along to near the end .

    Pat xx
  • Holly59
    Posts: 2,263
    http://www.parliament.scot/GettingInvolved/Petitions/PE01625

    Latest submission from Falkirk .

    Petition History PE1625G

    Pat xx
  • PDA_ASD_Parent
    Posts: 3,855
    Well they are factually incorrect in "differentiated disorder from that of the recognised Autistic Spectrum Disorder" because they should have said other ASDs, not just ASD, because PDA is an ASD and then: "there appears to be a need for greater research and practitioner debate, before a substantial decision of this nature should be made" just confirming the government's pathetic response is agreed with, so entirely unhelpful to the cause. And if that's how they feel, why do they admit being aware of PDA and offering local families support with it!
  • Holly59
    Posts: 2,263

    PlanetAutism said:

    Well they are factually incorrect in "differentiated disorder from that of the recognised Autistic Spectrum Disorder" because they should have said other ASDs, not just ASD, because PDA is an ASD and then: "there appears to be a need for greater research and practitioner debate, before a substantial decision of this nature should be made" just confirming the government's pathetic response is agreed with, so entirely unhelpful to the cause. And if that's how they feel, why do they admit being aware of PDA and offering local families support with it!



    Interesting isn't it . Covers all their backs . It's a case of "Yes"and "No"but we support the families with PDA . That's a positive start .

    It proves how misunderstood PDA is among the Professionals.

    Have you noticed Planetautism the huge increase of folks looking for support and advice recently on FB and the Forum about PDA. It nearly takes your breath away . Absolutely terrifying.

    Managed to catch an Independent Councillor today and gave his information for his school. He is on the PTA so gave his a leaflet and a quick briefing !!

    Pat xx
  • PDA_ASD_Parent
    Posts: 3,855
    There are definitely increasing numbers as the public becomes more aware. Born Naughty was probably responsible in part for heightened awareness. Trouble is, professionals who don't want to acknowledge PDA even twist that into parents seeing something on TV and then wanting to excuse their poor parenting with a handy diagnosis. They completely undermine the Eureka moment, of a parent with a child with such a condition finally having the penny drop moment and realising it completely fits and most parents have tried everything already. It's just the snide, parent-blame culture that continues unabated which riles me.
  • Holly59
    Posts: 2,263

    PlanetAutism said:

    There are definitely increasing numbers as the public becomes more aware. Born Naughty was probably responsible in part for heightened awareness. Trouble is, professionals who don't want to acknowledge PDA even twist that into parents seeing something on TV and then wanting to excuse their poor parenting with a handy diagnosis. They completely undermine the Eureka moment, of a parent with a child with such a condition finally having the penny drop moment and realising it completely fits and most parents have tried everything already. It's just the snide, parent-blame culture that continues unabated which riles me.



    The " lightbulb" moment for me was reading Jane Sherwins Book , My daughter is not naughty. The Aspbergers diagnosis answered so many questions but not all.

    “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.”

    Part of our submission evidence to the Scottish Parliament. A very brave mum allowed me to share her email to me . There are so many more like it .


    Says it all really .


    Pat xx

  • PDA_ASD_Parent
    Posts: 3,855
    So many of us have been there, done that and got the T-shirt (and the cement mixer of wine)...
  • PDA_ASD_Parent
    Posts: 3,855
    Oh my God. Trying to stop myself swearing here...

    "A young person with ASD may have a co-existing mental health condition
    (anxiety, depression, attachment disorder) that risks being misidentified as PDA."



    http://etheses.bham.ac.uk/4812/1/Kendall-Jones14ApEd.pdf

    "5.3.2 Concurrent Difficulties
    There is some evidence to support the contention that children with ASD commonly have concurrent difficulties with attachment, not attributable to the way they were parented.

    The research found that the children who went on to be diagnosed with ASD exhibited more disorganised attachment and less involvement than those who did not. However, the parents of these children were found to be equally sensitive as the parents of children who did not subsequently receive a diagnosis. Hence, later impairments in the attachment behaviours of these children could not be attributed to poorly attuned parenting.

    This pattern was not found in the group without ASD, in which the sensitivity of parents
    positively correlated with the security of their children. In addition, the research found that the level of severity of autistic symptoms displayed in the social domain predicted attachment security, with more severe symptoms predicting less attachment security. The authors contended that these findings called attachment theory’s validity into question, challenging the purported link between attachment security and parenting (Ainsworth et al., 1978).

    Further, they suggest that children with ASD may have a biologically limited ability to form secure attachments (Van Ijzendoorn et al., 2007). If attachment difficulties are, as this study suggests, a feature of ASD, this has implications for the diagnostic process.

    Differential diagnosis employing a measure designed to assess whether a child’s behavioural presentation is more in line with one or the other difficulty would not be valid."



    "- PDA is described as a “pervasive development disorder”

    Providing a biological explanation for behaviour may limit engagement in evidence based interventions (such as parenting programmes). Good clinical practice would consider biopsychosocial models for understanding and responding to the behaviour."



    They have completely misunderstood that PDA is an ASD sub-type and that this is why it's described as a pervasive developmental disorder. (Don't they read the NAS!) Proof that they are pushing parenting programmes by default instead of diagnosing a neurodevelopmental disorder! Talk about failing children. Hang your heads in shame Western Isles.

    How can they recommend ignoring the cause of the behaviours?!
  • Holly59
    Posts: 2,263
    I was shocked but not surprised at the lack of understanding of PDA.

    Just read a report from Citizens Advise about Mental Health Services on one the Islands . GPs quote " Poor" plus the massive transport difficulties , housing , job situation , accessing services . Depressing was an underestimation.

    Wonder if the Trustees should send a few copies of the PDA Clinicians Guide to the folks on the letter so they can research the evidence in detail .Hopefully they could watch the Webinar and read the case histories .



    Pat xx



  • Holly59
    Posts: 2,263

    PlanetAutism said:

    So many of us have been there, done that and got the T-shirt (and the cement mixer of wine)...



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

    Shame someone never followed this up . 1 in 49 then, I reckon that figure is probably 1 in 20 now ! Could even be as low as 1 in 10 if you include the Co Morbid .

    There are still major issues in Inverness by people posting on here .

    Pat xx
  • Holly59
    Posts: 2,263
    http://www.parliament.scot/S5_Education/General Documents/20170222ESASNSubmissions.pdf

    There is a lot of reading in this document .

    Horrific the state of ASL in Scotland .

    Page 24 Planetautism is so true . I am helping a mum in exactly that position. Working class, has struggled herself throughout the Education System with issues and been ignored by teachers .

    Not now , she has the " A" team helping her .

    It's rather Politically Incorrect assuming if you are working class you are not intelligent ! So wrong .


    Pat xx
  • PDA_ASD_Parent
    Posts: 3,855
    They assume everyone living in a deprived area is a crap parent who doesn't give their child boundaries and needs to go on parenting classes.


    "identification with ASN might lead to unnecessary labelling of transient difficulties with potentially stigmatising effects."



    Rubbish. It's not as if it would be announced to all their peers. If a child needs support they need support, you can't not give it in case they get teased. And all of this attitude is down to the cock-up that is inclusion. If children with certain needs were in specialist schools there would be no 'concerns' about stigma!

    "middle class parents may be able to engage more actively with educational professionals, enabling them to secure better support for their children and challenge local authority decisions. Children with less assertive parents, often from less advantaged
    backgrounds, may have their difficulties ignored and parents may lack the social and
    economic resources to secure the type of legal redress associated with a CSP"



    Blatant elitist discrimination.

    "Children from the least advantaged neighbourhoods are more than twice as likely to be identified with social, emotional, and behavioural difficulties, a particularly stigmatising label."



    Well that describes autism, so they could be admitting that children in those areas are less likely to be correctly diagnosed!
  • Holly59
    Posts: 2,263

    PlanetAutism said:

    They assume everyone living in a deprived area is a crap parent who doesn't give their child boundaries and needs to go on parenting classes.


    "identification with ASN might lead to unnecessary labelling of transient difficulties with potentially stigmatising effects."



    Rubbish. It's not as if it would be announced to all their peers. If a child needs support they need support, you can't not give it in case they get teased. And all of this attitude is down to the cock-up that is inclusion. If children with certain needs were in specialist schools there would be no 'concerns' about stigma!

    "middle class parents may be able to engage more actively with educational professionals, enabling them to secure better support for their children and challenge local authority decisions. Children with less assertive parents, often from less advantaged
    backgrounds, may have their difficulties ignored and parents may lack the social and
    economic resources to secure the type of legal redress associated with a CSP"



    Blatant elitist discrimination.

    "Children from the least advantaged neighbourhoods are more than twice as likely to be identified with social, emotional, and behavioural difficulties, a particularly stigmatising label."



    Well that describes autism, so they could be admitting that children in those areas are less likely to be correctly diagnosed!


    Stopped at that page so incensed .

    Horrific first hand statements from teachers, Additional Needs Assistants , everyone on trying to cope with so many children with Additional Needs .

    The system is in crisis . The Government has been told for years that inclusion needs trained staff and units like The!Micas Unit at Dyce Academy at Aberdeen for Autism Spectrum . It was suppose to be a flagship unit for Autism Spectrum that would be in every High School. It was never rolled out to every school. Teachers being able to refuse training , absolute joke.

    The system is set up to fail those who need Support.


    Pat xx
  • Holly59
    Posts: 2,263

    PlanetAutism said:

    They assume everyone living in a deprived area is a crap parent who doesn't give their child boundaries and needs to go on parenting classes.


    "identification with ASN might lead to unnecessary labelling of transient difficulties with potentially stigmatising effects."



    Rubbish. It's not as if it would be announced to all their peers. If a child needs support they need support, you can't not give it in case they get teased. And all of this attitude is down to the cock-up that is inclusion. If children with certain needs were in specialist schools there would be no 'concerns' about stigma!

    "middle class parents may be able to engage more actively with educational professionals, enabling them to secure better support for their children and challenge local authority decisions. Children with less assertive parents, often from less advantaged
    backgrounds, may have their difficulties ignored and parents may lack the social and
    economic resources to secure the type of legal redress associated with a CSP"



    Blatant elitist discrimination.

    "Children from the least advantaged neighbourhoods are more than twice as likely to be identified with social, emotional, and behavioural difficulties, a particularly stigmatising label."



    Well that describes autism, so they could be admitting that children in those areas are less likely to be correctly diagnosed!


    http://www.economist.com/news/briefing/21696928-children-rich-world-are-far-more-likely-be-diagnosed-autism-past-why

    The figures in Korea are terrifying. I in 38. I believe UK figures quoted are way out due to the lack of recognition of so many people over the years . With the endemic failure to recognise I really believe by my experience working as a parental helper in schools for so many years that figure could be anywhere between 1 in 20 or even lower in some areas .

    This is what Scottish Government were trying to explain about the Class System and failed !

    Pat xx
  • PDA_ASD_Parent
    Posts: 3,855
    http://bjp.rcpsych.org/content/194/6/500.long

    "Prevalence of autism-spectrum conditions: UK school-based population study" 2009 study by Simon Baron-Cohen et al.

    "By adjusting the estimate derived from the SEN register (that is, based on whole classes and not a 29% response) for the additional number of cases that would be expected if all the children were directly observed, the prevalence estimate is 157 per 10 000 or 1 in 64 (95% CI 99–246).

    Overall, for boys and girls together, for every three known cases, there are at least two undiagnosed cases of autism-spectrum conditions in the primary school population, or a ratio of 3:2 (known:unknown). There is no evidence of a difference in the undetected estimate of cases for boys and girls, despite a clear difference in the overall ratio of boys:girls with autism-spectrum conditions."



    My maths is awful, but perhaps someone could calculate the overall expected figure from those bolded bits.
  • Holly59
    Posts: 2,263
    http://www.parliament.scot/S5_PublicPetitionsCommittee/Submissions 2017/PE1625I_North_Ayrshire_Health_and_Social_Care_Partnership.pdf

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

    PEO1625i

    Please feel free to decipher what this means .

    Additional information doing a quick Google .

    http://www.careinspectorate.com/berengCareservices/html/reports/getPdfBlob.php?id=285234

    Mentioned in this report from North Ayrshire , Page 18 , that people had attended a PDA training course to help a foster child .

    Where staff identi ed training it was sourced and also offered to foster carers as standard. A recent training course was accessed in pathological demand avoidance in order to better understand service delivery for a young person and was attended by the staff member and foster carer. This approach to providing training created excellent opportunities for foster carers to explore current concepts and network with other professionals. The staff team delivered a large amount of informed in-house training and were in the process of developing more programs as the needs of foster carers developed. Where foster carers had asked for speci c training to support their understanding of the needs of a child or young person placed with them, the service either outsourced the training or developed an in-house program drafting in stakeholders, where appropriate. Foster carers consistently told us that the training provided to them was exceptional and integral to them being able to do their job effectively and meet the needs of the children and young people. Furthermore, that the staff team regularly went above and beyond what they would expect .

    Additional Support Needs Submissions Pack - Scottish Parliament
    www.parliament.scot › S5_Education
    17 Feb 2017 - Language Impairment/Pathological Demand Avoidance/Sensory Processing. Disorder due to our ...... her P7 year, North Ayrshire Council provided tutors home for approx 4 hours per week. This was ...

    I am not looking though masses of pages of this document, it's already been mentioned on here , just copied this extract from Google .

    http://www.parliament.scot/S5_Education/General Documents/20170222ESASNSubmissions.pdf


    Pat xx
  • PDA_ASD_Parent
    Posts: 3,855
    So...good old foster carers got PDA support that the birth parents never did, along with a hefty weekly payment that likewise, the birth parents never did...
  • Holly59
    Posts: 2,263
    A school in North Ayrshire has arranged with the LA to provide home tuition for a PDAer because of the comment from the submission to,Parliament and Additional Needs . P7 is the top class in Primary .

    It would be interesting to know if a CAMHS had given a diagnosis, or the child had been referred to Yorkhill, or it was private diagnosis . The positive thing about Scotland is that a diagnosis is not required and if school has implemented correctly the Additional Support for Learning Act and GIRFEC .

    We must be able to find out somehow . At least we have evidence at Parliament from the Additional Needs Submission which is brilliant

    Between the lines of the submission my understanding is that they are starting to recognise PDAers although it's not formally in the manuals . Really disjointed and ambiguous Report.

    Found some more information googling and I am going to contact a PDAer mum later who lives in North Ayrshire .

    Detective Pat is on the Case .

    Pat xx



  • Holly59
    Posts: 2,263

    PlanetAutism said:

    So...good old foster carers got PDA support that the birth parents never did, along with a hefty weekly payment that likewise, the birth parents never did...



    It would be interesting to know if the PDA was recognised before the child was taken into care. I have been at that stage where I nearly threw the eldest out out the house into a homeless unit . The guilt will live with me the rest of my life but I will 100% back any parent who leaves . I can understand how you can feel Absolutly nothing for a child who is violent and cruel Day and after Day and destroys your family .

    Tragically without the correct support its survival of the fittest .

    I have personally seen two sides of foster Carers , one good , the other Absolutly Shocking with a tragic outcome . So many truths hidden . I am not going to let that happen. There is a time and place to expose the truth.

    Pat xx

  • Holly59
    Posts: 2,263
    Email received from Parliament.

    Dear Pat,

    The Public Petitions Committee has received two submission on your petition from:

    · PE1625/H: NHS Western Isles submission of 27 April 2017 (44KB pdf)
    · PE1625/I: North Ayrshire Health & Social Care Partnership submission of 28 April 2017 (118KB pdf)

    If you wish to send us a written response to the submissions, then please do so by 2 June 2017. We do ask that, if you would like to provide a written response to the submissions received, you submit one consolidated response and that your response be no more than three sides of A4.

    Please note that all submissions are published on the petition webpage in line with the Parliament’s policy on the treatment of written evidence. You can find the policy on the Parliament’s website at: http://www.parliament.scot/help/31037.aspx.

    The Committee is provisionally scheduled to consider your petition again on 15 June 2017



    Detective Mary and I have between us come up with some fantastic information this morning for the North Ayrshire submission.

    All will be revealed in due course .

    Pat xx
  • Holly59
    Posts: 2,263
    East Ayrshire Submission is exactly what we need for Petition Evidence .

    It shows the huge discrepancy between LA . It's brilliant that East Ayrshire will recognise and support.

    Some of it is waffle but it's generally positive .

    Pat xx
  • PDA_ASD_Parent
    Posts: 3,855

    "PDA is not considered a disability in isolation and in order to have a PDA diagnosis there requires, in the first instance to be a diagnosis of Autistic Spectrum Disorder (ASD)."



    Bizarre comment however, because this means they see it as a behavioural issue and not an ASD sub-type, which it is!

    It means they think it's a pattern of behaviour in some children who have typical ASD. This is incorrect.
  • Holly59
    Posts: 2,263

    PlanetAutism said:

    "PDA is not considered a disability in isolation and in order to have a PDA diagnosis there requires, in the first instance to be a diagnosis of Autistic Spectrum Disorder (ASD)."



    Bizarre comment however, because this means they see it as a behavioural issue and not an ASD sub-type, which it is!

    It means they think it's a pattern of behaviour in some children who have typical ASD. This is incorrect.


    I thought you would comment on that . Odd to say the least .

    Pat xx
  • PDA_ASD_Parent
    Posts: 3,855
    I just wouldn't let it lie would I!!! ;))

    Call me a pedant...no actually don't because this is way more important than being pedantry, it's simply incorrect in a very significant way. It confuses the issue and feeds into the misunderstandings and rejection of PDA as an ASD subtype or a condition at all, that is rife everywhere.
  • Holly59
    Posts: 2,263

    PlanetAutism said:

    I just wouldn't let it lie would I!!! ;))

    Call me a pedant...no actually don't because this is way more important than being pedantry, it's simply incorrect in a very significant way. It confuses the issue and feeds into the misunderstandings and rejection of PDA as an ASD subtype or a condition at all, that is rife everywhere.



    Can you imagine how many years it's going to take once PDA is formally on the books to give it a description. I agree it's totally confusing .

    I only wish they had left the original separate diagnosis, e.g. Aspbergers, PDA , ADHD . It's so much easier .

    Pat xx
  • PDA_ASD_Parent
    Posts: 3,855

    Holly59 said:

    I only wish they had left the original separate diagnosis, e.g. Aspbergers, PDA, ADHD. It's so much easier.



    Agree. There are brain differences between HFA and AS and also a researcher told me there are differences in research tests between the two as well. So it stands to reason that there will be differences between the subtypes and PDA as we know, is one on it's own! There really was no need to lump it all together and there isn't just one cause of autism so for that reason alone they shouldn't have. The DSM now has SCD (which is classed as non-spectrum) which I think is wrong and results in likely many females especially with AS being undiagnosed I'm sure and I hope the ICD doesn't follow-suit with SCD. Considering the vast heterogenity of ASD to have just one umbrella title is very unhelpful.
  • Holly59
    Posts: 2,263
    http://www.scotlibdems.org.uk/rennie_reveals_appalling_longest_child_mental_health_waits

    Apart from the wait times add on the quality of the staff in the CAMHS. It's OK saying we met our target and then find the staff are poorly trained or clueless then fob you off.

    Also the potential not to see you in the first place.

    http://www.bmj.com/content/353/bmj.i3199/rr-0

    For many the only option is to go private . Getting an out of area referral are few and far.

    I can tick both those boxes and somcan can more parents .
  • Holly59
    Posts: 2,263
    http://www.scotborderslibdems.co.uk/support

    Euan Robson, Kris Chapman and myself at Scottish Borders Council doing our bit for the PDA day .

    We actually met before this photo and discussed how we can progress the awareness locally . We all learnt a lot . Networking already started .

    Please share on FB / Twitter . The more PDA and Petition are mentioned the more it's discussed . Ask your local Councillor what are they doing to help ?

    Pat xx
  • PDA_ASD_Parent
    Posts: 3,855
    (*)
  • Holly59
    Posts: 2,263

    PlanetAutism said:

    (*)



    Thank you for sharing on your FB page xx

    Was concerned my books didn't get soaked . Kris has borrowed the books and using his networking contacts to the full.Typical Scottish Weather, it was sunny after that , honest.

    Had some explaining why grown men were carrying a Panda around Council Offices . Found it quite amusing but it got the PDA awareness across .

    Pat xx

  • gerry
    Posts: 45
    NHS CLINICIAN IN SCOTLAND DIAGNOSES ADULT WITH PDA PRESENTATION

    In response to the above I wish to post the following and I sincerely hope it will help.The Clinician involved has agreed with this being posted on the Forum and for it to be used as evidence for the Petitions Committee. I would like to say a massive thank you to a very caring, compassionate and enlightened NHS professional.

    “My daughter was the first child in Scotland to be diagnosed with Pathological Demand Avoidance Syndrome, PDA, in 1998 by Professor Elizabeth Newson. She was recently referred to her CMHT to look into her concerns that she may also have OCD. As her local CMHT were unfamiliar with PDA and they sought input and guidance by referring her on to NHS GGC Adult Autism Team. Following a formal assessment by one of the clinicians based at the Centre my daughter's difficulties were diagnosed in the following way”

    Excerpt From Diagnostic Assessment.

    "The assessment concluded that X meets the diagnostic criteria for Asperger's Syndrome ICD 10 F84.5.
    X also meets the diagnostic criteria for Pathological Demand Avoidance Syndrome as described by Elizabeth Newson.
    Given the imminent change to diagnostic classifications it would be pragmatic to describe X as having an Autism Spectrum Disorder whose presentation falls within the description of PDA.

    CONTACT DETAILS

    NHS GGC ADULT AUTISM TEAM
    EASTWOOD HEALTH AND CARE CENTRE
    DRUMBY CRESCENT
    CLARKSTON
    GLASGOW
    G76 7HN

    Pat please use as evidence for the Petition.

    Geraldine



  • Holly59
    Posts: 2,263
    Gerry you are an absolute " Star " .


    Pat xx
  • Holly59
    Posts: 2,263
    http://www.parliament.scot/S5_PublicPetitionsCommittee/Submissions 2017/PE1625K_Petitioners.pdf

    Our latest submission is now online . The Committee are to meet again on the 15th June .

    Will post which room and an approximate time once we receive it .

    Pat xx
  • PDA_ASD_Parent
    Posts: 3,855

    "We believe that any objective and impartial reader of the evidence would agree that PDA is either a stand lone diagnosis or is located on the autism spectrum."



    I think this wording is confusing the issue. As PDA is an ASD (as opposed to being 'autism' which is it's ASD own subtype) PDA cannot be standalone in the way this sounds. It is a distinct subtype of ASD.

    "We hope that the Committee agrees with us that the Scottish Government must take action and in our view, given the weight of evidence, the Government would be negligent if it did not do so."



    Great, glad the feedback is getting more firm!

    "Here is a clear expression of current best practice. Whilst we would say that we believe that PDA does stand on its own, the fact that the East Ayrshire Partnership understands the condition and is prepared to countenance responses to it as part of the autistic spectrum is most welcome."



    Same comment as to the top quote. It stands on it's own as a subtype, but cannot stand on it's own away from ASD and I think Euan's wording makes it sound like he believes the latter. Does he understand this? Standalone subtype, but it is clearly on the autistic spectrum and any diagnosis would need to somewhere state that in the paperwork. Otherwise it risks being seen as a 'bad behaviour' disorder without a neurodevelopmental basis. I'm not sure he grasps this. It has the same roots as any other ASD, it's just that it needs recognising as a distinct subtype due to the severity and also the support needs.

    At the moment, all subtypes are being subsumed under ASD. They will simply say it should be treated the same. The wording is vital that it is not misleading.
  • webbwebb
    Posts: 2,398
    Hi Holly59

    I think it is great that you are continuing with the Petition and so pleased that it will be heard again on 15th June. It was also good to read the reports from other organisations and LA's.

    I do agree with PA, that PDA is an Autism Spectrum Disorder. If it wasn't an ASD it would as PA says just be 'naughty behaviour' like ODD or CD.

    This is why Clinical Psychologists such as Judy Eaton and Phil Christie are using the term ' ASD with a Profile of PDA' as the best term for a diagnosis of PDA.

    I hope that you will be able to clarify this point with the Committee at some point, refer to the Practitioners Booklet again or the new PDA Society Leaflets9see website) and give them a quote.

    Hope you can get more Research done into the PDA Profile :)

  • Holly59
    Posts: 2,263
    Hi Webb and Planetautism ,

    Yes he does . There has been a lot of work done behind the scenes which I can't discuss .I can assure you that more interested Parties have been made aware of this Forum .

    It was so infuriating once again getting only a few responses .

    The easiest simplest way would be to ask Councillors/ MSP s to ask on their FB Twitter Pages who has a diagnosis or is seeking a diagnosis . How long it has taken , was it private or NHS and are you getting support .They can collate the information and forward it onto the Committee .

    That way it gives an overall picture of what's happening in Scotland .

    I met with someone high up in the Autism Spectrum scene in Scotland this week who was unaware you could get a diagnosis for PDA in Scotland . I have shown this person in the way of my children's reports and documentation and a long discussion of what was missed along the way . Not by just CAMHS , but numerous other professionals . They were very shocked at the reality of what's happened to my case and so many others . It's the disparity of how many can get it so wrong but others get it so right . The other issue is that those at the " Top " are not aware of what's happening in reality , exactly what happened on Tuesday's Meeting .

    I have explained developments since the Petition started to others behind the scenes . A handful of children in the Borders are now getting taught with PDA Stratagies including my youngest son at College .. There are a large number still not recognised as being on the Spectrum by CAMHS. There are a number not as far as CAMHS , pareneting cources , being fobbed off .Some have not reached the CAMHS stage yet . Some of the facts which we have been made aware of since the Petition was lodged are shocking . People who would not have spoken out before hand now have .One case is now in the hands of Scottish Ministers still not resolved .

    One Borders parent last week now has a formal diagnosis of ASD with PDA from Help4Psychology . Another is due to visit mid June .

    We are making small inroads but there is masses of work to do . When you think back there were no recognised cases of PDA in Kelso last May we now have seven. There are more to follow .

    Only the other week we found a few more cases of PDA in a neighbouring town we were unaware of .

    I honestly don't think that Ministers writing letters to and fro will not get them much further . The response has been poor . They really need to get out and visit one of the NAS PDA Schools and see for themselves first hand the achievements that can be made .

    If Ministers would visit first hand both a LA School with PDAers using PDA Stratagies , a home schooled PDAer , a Secialist NAS School and see for themselves what is required and how early intervention makes such a huge difference for the child and family .Some children won't fit in anywhere but these children are still entitled to an education . Mainstream does not fit all especially in PDA . Think totally outside the box .

    You will be delighted to know that my youngest has passed his BTEC in Classical Music this week . Since PDA Stratagies have been used the improvement in grades has been outstanding including a Distinction for one section . To think last year he scrapped through a pass .He has now been accepted on the HNC / HND course . It's due to inspiring Tutors who like me had to learn as they went along and a wonderful individual music tutor . Only over these last few weeks another door opened and we are using a students skills to help my son . That happened totally by accident but it works and we are hoping to develop this arrangement from August .

    Thank you to Mary's press Article , Jane Sherwins Book and support from this Forum he would not be in College with the support and PDA Stratagies he required . It's quite simple he would have dropped out the course becausecno PDA Stratagies were being used.

    It's not been easy , we are tweaking as we go along , it's a steep learning curve and what we have learnt this year will help more students achieve in the future .

    We are hoping Ministers will consider holding a Forum at Holyrood to hear first hand the experiences of parents . Likewise at the local Council level .

    We are also looking at ways to help the eldest son . In his own way he too made amazing progress this weekend . Tiny steps but positive .

    Thank you for all you comments , we do appreciate them .

    Pat xx





  • PDA_ASD_Parent
    Posts: 3,855
    The wording is vital on it being an ASD. Because the crap you've had in some of the responses (contradictory, ambiguous, cop-out etc.) shows how they will manipulate wording to suit their agenda and therefore it has to be categorical and concrete. How Euan's reply is currently worded could cause more confusion because it really does sound like he means not being an ASD is an option. There are no options here, it is what it is. It's what is said by petitioners that is what the government and health authorities will be replying to. You need to give them no quarter! Some of the replies also indicate how much the postcode lottery is at play across the UK, where different professionals have different views, ranging from it doesn't exist, to it exists as just typical spectrum behaviours of ASD, to it exists and we recognise it! So unless the statements made in petition feedback to responses, stick to a firm and clear line, they will be given more leeway to sit on the fence or deny it. If Euan understands that it's an ASD I'm not sure why he's worded it that way.
  • PDA_ASD_Parent
    Posts: 3,855
    So glad you're kicking butt in Scotland Pat! ^:)^
  • Holly59
    Posts: 2,263

    PlanetAutism said:

    So glad you're kicking butt in Scotland Pat! ^:)^



    http://www.bbc.co.uk/news/uk-scotland-scotland-politics-40173012

    It's an uphill battle . I have had personal experience of being left in a very bottomless pit with no support.

    It's not only getting seen promptly but having staff who understand Autism Spectrum. The differences between LA in Scotland in shocking .

    http://www.bmj.com/content/353/bmj.i3199/rr-0

    It was the Police who tried to support me when NHS , Social Work , and CAMHS didn't want to know .

    Ring your GP in the morning was the response . Wait 3 months for an appointment which is cancelled . Waiting months for someone to return your call . It's the sheer desperation in the mean time . Having to hide knives , medication , being on suicide watch 24/7 , whilst trying desperately to exist for the rest of the family . Terrified to leave the house , dependening on the Kindness of friends and neighbours because no one else wants to know or understands .

    Then after all of that the excuses why it was a Mum who worked everything out . High turnover of staff , blah blah , what utter bollocks , most we saw had been there years and getting it wrong for years .

    Admit they were wrong , sit around a table and discuss what was missed like grown ups . Nope , every door slammed shut .

    So pleased my friends daughter in New Zealand has finally got her PDA diagnosis for her child .

    We desperately need someone like Phil Christie , Help4Psychology , one of the accredited PDA Clinninicans to set up a Unit in Scotland for those who can afford to pay . It's desperate the nearest is Leeds , so many have exceptionally long waiting lists .

    We also need regional training hubs for Clinnicians , Educational Psychologists , GPs right through the system.

    Getting the information out there in Scotland " that a diagnosis is not required " to provide support under the Additional Support for Learning Act is imperative . There was £7,000,000 allocated originally by the Scottish Government for training teachers but there seems again to be a wide discrepancy who is aware of the implications of this Law by my experience .

    My original complaint made no difference what so ever . Staff were told they could only give support to those children with a diagnose due to massive financial shortfalls .

    We have only been taken seriously since the Petition was lodged at Parliament .

    Just let us " hope " whatever the results of today's election that Local Councillors , MPs , Ministers listen to our stories and get the Recognition of PDA out there. No more Post Code lotteries .

    We need support NOW not another twenty years discussing in Parliaments .Use the LA who are getting it right to train others . In house training .

    One Consultant has admitted to me off the record that some CAMHS in Scotland are so poor they would not send their children to them.

    Totally agree by my experience and so many others .



    Pat xx









  • webbwebb
    Posts: 2,398
    Hi Pat

    I do hope you can clarify with the Committee on 15th that PDA is an Autism Spectrum Disorder.
  • Holly59
    Posts: 2,263

    webb said:

    Hi Pat

    I do hope you can clarify with the Committee on 15th that PDA is an Autism Spectrum Disorder.



    We will .

    I just hope that the Committee decide to visit a school with PDAers and see for themselves the challenges for the students and staff , but also the rewards that can be achieved .

    You can split the issues into Autism Spectrum and PDA . What we have also got to get over is that mainstreaming will only work for some . We need the full range of education options with support .

    We also need to consider the " Void " for the older students and young people . What happens long term .

    Pat xx


  • Holly59
    Posts: 2,263
    Hi,

    I hope you all are aware that Teresa May has 25 days to form a new Government with the support of other Parties . If not we go back to the Election Campaign again . We then have Purdah Rules .

    http://www.express.co.uk/news/politics/794271/General-election-2017-purdah-what-is-dates

    Suggest if you need the support of your newly elected MP , MSP get in there quick .

    The Petition Committee are elected for four years at the Scottish Parliament , there might be a few minor changes but this won't effect the planned next meeting .



    Pat xx

Please Log in or Register to comment on this discussion.