Parliament Workbench

Petition · PE01732 · Session 5

A toolkit for working with the Pathological Demand Avoidance profile of ASD

Closed Submitted 11 Jul 2019 Health
Signatures
0
1,214 online signatures with a country
Comments
101
Considered
2 meetings
in the Official Report

What it asks

Calling on the Scottish Parliament to urge the Scottish Government to-
1. Draw up in co-operation with others, a toolkit for professionals to assist in diagnosing and designing therapeutic support for children, young people and adults who have Pathological Demand Avoidance, a profile within the autism spectrum
2. Offer training in the use of such a toolkit and additionally to signpost, promote and facilitate other training by those who have successfully developed therapeutic programmes
3. Provide access to appropriate education, therapies and interventions to reduce or minimise the effects of the condition for the individuals and their families and carers.

What the petitioner did first

Previously submitted a petition (PE1625) on this issue
Have continued to raise this issue with various MSPs and MPs

Where it was considered

Official Report
  1. 19 Sep 2019
    Public Petitions Committee
    New Petitions
    1 mention
  2. 20 Feb 2020
    Public Petitions Committee
    Continued Petitions
    1 mention

Signatures by country

1,214 online signatures
  1. Scotland723 59.6%
  2. England267 22%
  3. United Kingdom153 12.6%
  4. Wales25 2.1%
  5. United States14 1.2%
  6. Australia9 0.7%
  7. Northern Ireland6 0.5%
  8. Ireland5 0.4%
  9. Canada3 0.2%
  10. New Zealand3 0.2%
  11. 5 other countries6 0.5%

Comments

101 comments, oldest first
101 comments · showing 1–50
  1. Louise Welsh 11 Jul 2019
    Huge lack of awareness and huge reluctance to learn about it or even accept the existence of PDA. Honestly, it has been like I've used a swear word in polite company when I've said the words "pathological demand avoidance." I have had to handle professionals who should know their jobs with kid gloves, referring obliquely to demand avoidance and inviting them to use strategies that I personally find helpful for family members (ie pda strategies!). Eventually they see for themselves that pda strategies have the best chance of success but much distress for family member could have been avoided if they'd just been on board from the start. A PDA toolkit would be useful if it legitimised PDA in the minds of these professionals. They view me with suspicion, like I'm overprotective and asking for special treatment for family member. Well, perhaps I am but for good reason
    - they need special treatment in an unfriendly world and the team around them should provide that for them where possible and not shuffle their feet and change the subject. Teachers have been particularly averse to pda strategies saying things like "we don't believe in pda we treat all our children as individuals." Involvement must come from people with PDA themselves, adults, teens and children, and their parents and siblings. Also please involve Yvonne Newbold who advises on SEND VCB (violent and challenging behaviour). PDA does not cease to exist just because some teachers and social workers are afraid to step outside of their little comfort zones.
  2. George McCann 11 Jul 2019
    Families need a proper diagnosis so proper support can be implemented and not the current one size fits all.
  3. Lynne Shorey 11 Jul 2019
    Very little training and knowledge of professionals in the Borders
  4. Beth Morrison 11 Jul 2019
    We need this approach in Scotland to make sure that education staff have the right tools, skills and expertise in understanding behaviour as a means of communication for children with PDA (Pathological Demand Avoidance). The strategies involved in supporting kids with PDA will help all children but children with ASD conditions and PDA are most in need. At the moment, staff lack the expertise to understand the physical, emotional and sensory challenges of these complex children and resort to methods of control like exclusion, restraint and seclusion in an effort to "manage" these children. This is a reactive strategy and it does not work. The child is always seen to be the "problem" when actually the child is communicating distress due to unmet needs. Instead staff must work pro-actively to avoid distress and anxiety happening in the first instance. Happy children with the right support do not challenge. Well done to the ladies for bringing this to your attention, our children deserve this.
  5. Lynne mckenzie 11 Jul 2019
    Pda needs to be recognised all over and supports given and training on it.
  6. Fred bumble 11 Jul 2019
    I really want you to take heed of disabilities and to involve those with All disabilities. I want you to include us in your policies and take our needs into account. PDA is just as important while at present, authorities can't even understand and involve those with ASD!
  7. Christin Starling 11 Jul 2019
    1. Yes
    2. Awareness that PDA is a real condition, better understanding of it, and tools for both parents and professionals.
    3. Psychologists, therapists, adults and children with PDA, and parents of children with PDA.
  8. MAURA LEE 11 Jul 2019
    please ensure parents and carers are involved as we are the true experts!
  9. Jane Grice 12 Jul 2019
    Have not managed to get a diagnosis via NHS as was told it is not on their list of conditions.
    Teaching those suffering and their relatives how to manage the condition, and general understanding.
    The toolkit should be developed by experts and those with the condition and their carers.
  10. Silvia Palma 12 Jul 2019
    1) Yes
    - took a long time to get the right help (repeating same story, not being believed, being forced to try wrong strategies and then blamed for them not working). Still being told "to be firmer" with family member even though they have a diagnosis. Even if people know the diagnosis, they don't understand what that means in practice. What teachers learn about handling children has exacerbated problems as it seems to be the opposite of what works for kids with PDA
    2) Better understanding and acceptance of how PDA affects people (rather than constant judgement on how its someone's "fault"). Correct strategies at an earlier stage would have saved a lot of heartache (as well as time an money for the system)
    3) Best strategies I use tend to be from PDAers, parents and a few skilled professionals (those with direct experience of correctly supporting PDA'ers)
  11. Rachel McWattie 12 Jul 2019
    As there is no official diagnosis of PDA in Scotland it is often talked around rather than directly. As a professional working with Autistic learners in the education system, I often use the term anxiety driven need to avoid demand. If diagnosis was clearer it would allow the Ed psych teams to lead training and education and increase confidence in discussion, which would undoubtedly improve the outcomes for these young people.
  12. Ceri lloyd 13 Jul 2019
    All of them absolutely appalling ! Needs to be recognised in DSM
  13. Lesley Leishman 13 Jul 2019
    Something needs done.Too many children and young people being failed by the system.
  14. Gillian Tosh 14 Jul 2019
    By recognising PDA it has changed a family member's and family's life. They are finally supported in education.Recognising this earlier and giving compulsory measures to put support in to education system mental health issues could have been avoided and the stress it caused on the whole family. Another family member has also suffered due to the lack of support and I can not get them the support they need because they struggle to trust people now as feel let down. Our family were badly let down and nothing can change the damage it caused.It could be different for others with understanding and correct support

    I'm not sure there is enough understanding from local professionals.Few understand but the clinical psychologist my family member has seen that understands alot should be involved and those that show they can work well with PDA strategies

    Some parents have a good knowledge and obviously those with PDA themselves
  15. Lee Arnold 14 Jul 2019
    Lack of awareness and ignored due to funding its over looked. Our kids need help at a early age disgusting when mps claim for second homes expenses payrises etc then cut out budgets when we need it. Should be ashamed of themselves lining up there own pockets.
  16. Rebecca Black 14 Jul 2019
    Professionals who support the families of children with diagnosis of PDA need to know more about this condition and the impact it has on family relationships. Funding to support the parents of children would support child and adult mental health and well-being in Scotland.
  17. Brooke saxby 14 Jul 2019
    Keep on going!
  18. Ruth Craxton 14 Jul 2019
    1) It took 5 years and 3 referrals to eventually get an inaccurate diagnosis of ASD, which was then expanded to 'with extreme anxiety and avoidant behaviour'. Despite family member's PDA having been made a 'finding in fact' at the Court of Session in 2018, they are STILL not supported and not one of the professionals involved in their 'care' have any understanding let alone knowledge of PDA. It is pathetic.
    2) how can a professional possibly adequately support a person if they have no understanding or knowledge of the person's condition? So, obviously, having a toolkit would help. Help and support that is rooted in understanding and knowledge of PDA would be incredibly beneficial. Help and support that is not based in PDA is incredibly detrimental and has life long negative consequences.
    3) adults with PDA should be at the centre of developing the toolkit, along with professionals who have direct experience in managing PDA.
  19. Carly stewart 14 Jul 2019
    To any professional.Please support familys with children or family with pda just like any other type of autism.The pda community are in crisis and desperatly need support from the nhs and and many other professionals.
  20. Mandy Mitchelmore 14 Jul 2019
    Family member has suffered dreadfully due to undiagnosed PDA. They have a complex and rare neurological condition and epilepsy and has always showed strong characteristics of PDA. Being without a diagnosis of autism of any description till they were 16 has meant that they have been misunderstood for 10 years in education. Hated, demonised, secluded and restrained- we are heartbroken. We were told by CAHMS that they cannot diagnose- but we can use strategies for PDA- to support them- their new school has saved them by adopting this approach but the scars remain. Respected and now a learner they are understood. CAHMS- use an American diagnostic tool that is inflexible and rigid- it doesn't recognise PDA- Nobody can give family member back those years and the stress they and us as a family endured- I welcome this diagnostic toolkit and urge the government to get children's services to get up to speed.
  21. Fiona Tunilla 15 Jul 2019
    These ladies are amazing advocates of every family touched by PDA. with their wealth of experience it should be automatically passed.
  22. Tracey Turner 15 Jul 2019
    Family member has pda, it's very difficult for specialist to work with this condition let alone help families. There are not any fully qualified people working with this condition and there should be more available for families. I also think pda groups should be planned when families can come together and share the pressures of pda and maybe someone that is qualified in this area. In Rotherham we are all learning together it isn't always helpful and strategies can run out.
  23. Michelle Graham 15 Jul 2019
    Crucially important individuals, families and teachers are in crisis
  24. Claire Mooney 15 Jul 2019
    I support this petition 100% and the ministers should start listening to the petitioners who are active dealing with PDA and are the experts on this matter.
  25. Melissa Costin 15 Jul 2019
    I am British Citizen living in New Zealand. A family member has a private diagnosis of PDA. I strongly urge there be more awareness and resource for this condition of mind. I fully support this petition.
  26. Fiona hardie 15 Jul 2019
    Please roll out the diagnosed of pda. I believe family member has this infliction. However it's not being accepted in Inverness.
  27. Jayne Scollay 16 Jul 2019
    Human rights have been taken away! No one should be put into isolation. We are failing so many with disabilities
  28. Catherine Worrall 16 Jul 2019
    Please acknowledge and support appropriately
  29. Stephen Gray 16 Jul 2019
    Personal experience suggests lack of awareness of this contain in CAMHS Scottish Borders and YPU Edinburgh as well as teaching staff and social services
  30. Pauline Grigor 16 Jul 2019
    Support this as we been supporting many families in Borders with PDA Profiles.....Education on this and strategies to help families will have a positive impact and ensuring the best outcomes for families
  31. Anne clewer 17 Jul 2019
    I hope they let his daughter out and back at home
  32. Denise Murphy 17 Jul 2019
    This really needs to be put in place all over the UK as thousands of children are not getting the help they desperately need & just being labelled naughty
  33. Amanda Crozier 17 Jul 2019
    I've fought for years with doctors,CAMHS,teachers etc since family member was very young and now a teenager they have been in 2 secure units.I really think they have P.D.A
  34. Anya Rae 17 Jul 2019
    Total lack of understanding from professionals regarding this diagnosis
  35. Angela mcfarlane 17 Jul 2019
    This is very important to many people and children lives please sign
  36. Rhian keenan 18 Jul 2019
    I think this is not just something that may help. this is an essential kit to support kids that are being currently failed in the system . a family member is being let down in their current school , there is nothing in place for them to follow . There needs to be clear guidelines on how to support children with PDA , that schools and professionals must follow regardless of whether PDA Is recognised in that area .
    Parents should be listened to , not dismissed . Collaboration is needed between the education system , medical professionals and parents to achieve the best outcome.
  37. Catherine a sneddon 19 Jul 2019
    Lack of awareness and so called professionals not listening to parents cries for help.
    There needs to be a full dementia overhaul of the mental health services and PDA should be recognised throughout.
  38. Lorraine Marshall 19 Jul 2019
    This would be a positive step to help awareness and educate support workers and carers
  39. Susan Walls 19 Jul 2019
    The more our politicians, professionals and the general public are informed and understand PDA, do something about it, then the more our children, young people and families in Scotland will be understood, properly supported and included in getting it right for children
    - development of a PDA toolkit will put policy into practice.
  40. Mrs Clare Chalmers 20 Jul 2019
    I think the Care Commission should be called to give evidence over recent reports of unlawful restraint and seclusion. Too many children have suffered as a result, we need to ensure change takes place as quickly as possible so that all practitioners, schools and organisations understand how best to treat children and fully respect their rights.
  41. Michael Duck 20 Jul 2019
    We need NHSE to stop sending vunerable people into hospitals. This has to stop
  42. Sam Duck 20 Jul 2019
    MA family member deserves better and has done nothing wrong. 11 years of their life locked away and family were not fighting then they would be in for many more years. This has to stop
  43. Fiona Murray 20 Jul 2019
    Defaintly a lack od understanding PDA or recognition in my area so kids are left to struggle and can not be assessed for it so no support and training takes place.
    Its needs to change PDA should be diagnosed in all areas..
  44. Susie Perkins 20 Jul 2019
    Family member has severe challenging behaviour
  45. Patrick McIntyre 20 Jul 2019
    Done,xxxx
  46. Charlotte Dowds 20 Jul 2019
    Desparetly needs research and more support right now.
  47. Nicola Nash 20 Jul 2019
    I had to move away from moray area due to the mis treatment of family member. This needs looked at on a massive scale, esp when counsellors call for 'these kind of children ' to be put in 'special schools '
  48. Lyn Mason 21 Jul 2019
    Everyone needs to be well informed so that children get the best possible help.
  49. Ann Johnstone 21 Jul 2019
    Without proper diagnosis of what mental health services refer to as a behaviour profile of autism PDA specific support does not get provided. Family member has already been threatened with exclusion for not coping in a mainstream school in North Lanarkshire but cannot get a place in specialist provision which would enable them to progress according to their abilities as they have no places for all the children who require a different setting to mainstream, another catastrophic Scottish Government policy to presume mainstreaming when some children simply cannot cope there but are punished for their condition affecting their behaviour there. Shame on this Government.
  50. Mandy Mitchelmore 21 Jul 2019
    Family member suffered seclusion and restraint due to a lack of diagnosis- trauma and a lack of understanding.