The PDA Society welcomes the Early Day Motion* about PDA submitted by Sir Mike Penning MP and encourages other MPs to show their support – we hope you can help with this by writing to your MP (please see below).
This comes after the Department of Health and Social Care has recently updated its letter about PDA (following PDA Action‘s campaign and importantly removing all reference to ODD (Oppositional Defiance Disorder)), at a time when two high profile PDA cases have been featured in the media (see template letter below for details/links) and PDA has been formally acknowledged in the new National Guideline for ASD in Australia.
Early Day Motion
The Early Day Motion EDM 1669 has already attracted some cross-party support and reads:
“That this House commends the PDA Society and other PDA campaigners for their Call To Action campaign to raise awareness, recognition and understanding of the Pathological Demand Avoidance profile of autism; and supports their calls for Autism Boards, local authorities and clinical commissioning groups to issue a position statement to help health and education professionals provide the support so desperately needed by children and young people with PDA and their families.”
Sir Mike Penning is MP for Hemel Hempstead and submitted the Early Day Motion following a meeting with Danielle Jata-Hall, known to many through her blog PDA Parenting. Thank you to Danielle and Sir Mike for your support. Sir Mike said: “I am very happy to table this Early Day Motion which I hope will raise awareness of PDA amongst MPs. I understand how difficult it is for parents to get the support they need for their children and young people with PDA and that, at times, it must feel that there is nowhere to turn. We need to get the relevant authorities to understand and recognise the PDA profile of autism and prepare the necessary position statements as a first step towards giving these young people and their parents the specific help they need.”
*Early Day Motions draw attention to campaigns and can be used to demonstrate the level of parliamentary support for a cause. They are submitted for debate in the House of Commons for which a date has yet to be fixed.
We need your help
We’d like to encourage more support of the motion and need your help to do so.
Please write to your MP using the template letter below and/or tweet your MP using the template tweet below or by retweeting the PDA Society’s tweets on the topic.
If you don’t know who your MP is, you can check here. It would be really helpful if you could let us know of any positive responses as well via comms@pdasociety.org.uk.
Template letter to send to your MP
Re. Early Day Motion 1669 – Pathological Demand Avoidance (PDA)
Dear (fill in your MP’s name)
I am writing to draw your attention to an Early Day Motion tabled by Sir Mike Penning (EDM 1669) in response to concerns about the treatment of one of his constituents. It calls for greater recognition of a form of autism known as the ‘pathological demand avoidance’ profile. This is particularly relevant to me because (explain your link to PDA).
I would be very grateful if you could support the motion, which has already attracted some cross-party support.
The PDA profile needs greater recognition because studies show that the needs of individuals are currently not being met as diagnosis and needs are frequently misunderstood. Crucially needs cannot be met effectively unless PDA-specific management strategies are used. The nature of PDA means that 70% of young people are unable to attend school and CAMHS services are routinely ineffective. It is also vital for adults to be provided with appropriate understanding, support services and pathways to diagnosis. For further information about PDA please see www.pdasociety.org.uk and www.autism.org.uk/pda
Two recent headline cases clearly demonstrate the difficulties relating to PDA. Bethany has been kept in a seclusion room for 21 months because her needs, in particular her ‘PDA traits’, were not understood – please see this BBC Breakfast interview for more details. The permanent school exclusion of a 13-year old with PDA was overturned in a landmark case against the Secretary of State for Education – please see this Law Gazette article for more information .
The DHSC has recently proposed an update to the ministerial letter/statement in relation to the assessment of the PDA profile of autism in children and young people, as per the below:
“The PDA profile of Autism Spectrum Disorder has been identified relatively recently and we are aware that a professional consensus on its status is still required. The NHS is clinically led, and the Government should not and does not influence individual clinical judgement.
In the NHS, clinicians will diagnose in line with guidance such as the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the American Psychiatric Association’s classification and diagnostic tool, or the International Statistical Classification of Diseases and Related Health Problems (ICD-10), a medical classification list by the World Health Organization.
The National Institute for Health and Care Excellence (NICE) is responsible for creating guidelines on identifying, treating and managing illnesses. It publishes a number of guidelines that provide evidence-based recommendations for the diagnosis and management of autism in children, young people and adults, and for the prevention, interventions and service delivery for people with learning disabilities and behaviour that challenges. These can be found at www.nice.org.uk, by searching for ‘autism guidance’.
Individuals with features of behaviour that are seen in the autism spectrum but do not reach the ICD-10 or DSM-5 diagnostic criteria for definitive diagnosis, should be assessed using NICE’s clinical guideline, “Autism spectrum disorder in under 19s: recognition, referral and diagnosis.” This guideline sets out the recommended procedure for the diagnosis of complex autism and the appendix to the guideline describes a range of signs and symptoms of autism which includes demand avoidant behaviour. The guideline also states that as part of every autism diagnostic assessment a profile of the child’s or young person’s strengths, skills, impairments and needs should be developed so that it can be used to create a needs-based management plan, taking into account the family and educational context.
The autism strategy, Think Autism, was published in 2014 and recommends that every clinical commissioning group commission a diagnostic care pathway for autism in its area. People considered to have a PDA profile should also be able to get support from their GP and a referral for a diagnosis if appropriate.
Reforms under the Children and Families Act 2014 ensure that there is a focus on identifying the specific needs of children with special educational needs and disabilities, with the full involvement of their families. Where their needs are significant, and require support from education, health and social care, children and young people may have an education, health and care plan, which brings together all the support to be provided. When assessing how best to meet these needs, professionals should do so without needing a diagnostic label. The lack of consensus on the status of the PDA profile should not be a reason to fail to identify and consider how best to meet the support needs of an individual. It is essential that health, education and social care providers work together to recognise that as young people’s needs vary, there must be effective and responsive support for those needs.”
Your help in raising awareness to ensure that the group of autistic people who fit the PDA profile can get appropriate diagnosis and tailored support would be very much appreciated. I hope that you will be able to support Sir Mike Penning’s Early Day Motion 1669 about PDA which can be viewed here: https://www.parliament.uk/edm/2017-19/1669
Yours sincerely,
(your name and address)
Template tweet to send to your MP (check here if you don’t know who your MP is)
Pls support Sir Mike Penning MP’s EDM1669 about #PathologicalDemandAvoidance: https://bit.ly/2QTuimV. The #PDA profile of autism needs greater recognition – studies show individuals are being misunderstood & needs aren’t being met: https://bit.ly/2pWD2gy
