PDA Awareness – Surveys, Research, Campaigns and Media Interest

The Current Situation Faced by Many Parents and Families
Recognition, understanding, assessment and diagnosis of PDA, for a variety of reasons, is still very much a post code lottery throughout the UK.

Some local Health Trusts may have a policy to not assess and diagnose PDA which can be problematic for the clinicians working within that specific Health Trust.

Many professionals may not have seen many cases of PDA and so may not be aware of this diagnostic profile and the atypical ‘autistic like traits’ that individuals with PDA may present, which can lead to some children falling through the ASD diagnostic net.  This can lead to confusion about the child’s underpinning difficulties and may lead to the misdiagnosis of other conditions.

Other professionals may be aware of PDA but may be unwilling to recognise this condition and in some cases, may even be dismissive of PDA because it is not currently included in either of the main diagnostic manuals, DSMV or ICD10.  This can happen even if there is no local trust policy prohibiting local clinicians from assessing and diagnosing PDA.

This can often leave parents and their children undiagnosed and unsupported or misdiagnosed with a condition that does not suitably explain their child’s underpinning difficulties or accurately signpost other professionals involved with their child to the most suitable strategies.  In some cases, the wrong diagnosis and the wrong strategies can inflame what is already an extremely complex and challenging condition to manage.


Surveys

Parent Survey Conducted by the PDA Society
Difficulties securing the correct diagnosis and understanding for their child, from professionals, was reported to be one of the most challenging aspects of parenting a child with PDA in the PDA Society’s 2016 pre- conference survey.

A booklet which includes some commentary and photos from the event, plus the key points from the pre-conference survey can be downloaded  by clicking here

The full information gathered from the PDA Society’s pre conference survey (PDA conference for parents – challenges, advice, rewards and thank you’s) can be downloaded by clicking here

Professional Survey Conducted by the PDA Society
The PDA Society conducted a snapshot survey of those who work with, assess and diagnose children and young people with ASD in order to find out about their attitude to the diagnosis of PDA and their current state of knowledge.

The survey showed that:

  1. Around half of those responsible for diagnosis would identify PDA (often as a sub-type of ASD).
  2. When both diagnosing and giving advice around two thirds of respondents felt constrained by lack of awareness of PDA amongst their colleagues locally and a lack of national recognition.
  3. The majority (two thirds) had only come across a small number of children that exhibited extreme demand avoidance, so personal experience was relatively limited. This is to be expected as PDA is relatively rare.
  4. Of those surveyed, knowledge of specific strategies appeared to be limited, with around 40% failing to identify the need for flexibility and almost three-quarters suggesting that clear boundaries and routines would be most helpful.
  5. Many explained that the lag in published research is a problem, but more than two thirds were also unaware of the latest research in the area.

The full survey, results and finding can be read here PDA – The views of professionals


Research

There is a growing amount of peer reviewed research available for professionals and parents to read online. The conclusions of this preliminary research are supportive of the validity of the PDA diagnostic profile, as a differential diagnostic profile within the autism spectrum, which has implications for management and intervention. The results of this research can be read here Peer Reviewed Published Research and Research by Liz O’Nions

The purpose of a differential diagnosis of Autistic Spectrum Disorder (ASD) with a PDA or a Demand Avoidant profile is to provide a clear understanding of the child’s profile of ASD, their central areas of difficulty and the most suitable strategies for intervention and management. The National Autistic Society have explained how this can be achieved, within the guidelines of the current diagnostic manuals.  Diagnostic Profiles and Classifications


Publications
The PDA Society also provide links to other publications, in addition to peer reviewed publications and research, on their website Other Published Documents

The following article has recently been published in ‘SEN – special educational needs magazine’ by Sally Russell OBE.  This is an extremely informative and currently relevant article regarding the present situation of PDA relating to diagnosis SENmagazine-pda


The Development of a Series of Case Studies

In response to the results of the PDA Society’s professional survey the PDA Society developed a series of case studies to highlight the huge benefits that can be achieved, for children and their families, when the PDA diagnostic profile is acknowledged and the recommended strategies are incorporated into daily life across all settings.

You can read the PDA Society’s series of case studies here A Series of Case Studies


Campaigning

The PDA Society are working hard, with many professionals, to campaign for PDA Awareness at a National Level Campaigning.  This could be greatly supported by parents campaigning at a local level with their own service providers. Parent power can provide a very powerful voice at a local level because service providers are answerable to their own service users in respect of perceived gaps in the services that they are providing at a local level. If you would like to support the PDA Society’s National Campaign by beginning a local campaign of your own please read the following information for useful tips and advice Campaigning at a Local Level


Media

Media Coverage
A growing awareness of PDA is beginning to attract mainstream media attention. This can result in much debate and controversy among professionals and the public in general. It can be difficult for parents to read harsh and unhelpful comments from people who simply don’t have the knowledge or expertise to fully understand the difficulties that we face daily. However, healthy debate and media exposure may be a necessary step that needs to be undertaken to promote further awareness and understanding.

Radio 4 have recently featured a discussion on PDA in their programme ‘All in The Mind’.  Liz O’Nions (post-doctoral researcher in Autistic Spectrum Disorders including PDA) and Jane Sherwin (author of ‘My Daughter Is Not Naughty’ and Mum to a child diagnosed with PDA) were invited onto the programme to discuss the difficulties associated with diagnosis, the impact on families and ongoing research into this area.  If you missed the programme you can listen to the podcast here Radio 4 Podcast

In 2016 channel 4 featured children, who subsequently received a diagnosis of PDA, on their TV Programme ‘Born Naughty?’ You can watch the programmes featuring PDA here  Born Naughty?

Surrey Hills Community Radio have aired an extremely informative programme on PDA featuring Dr Judy Eaton and the parent of a child with PDA, Maria Dane. The Send Show – sponsored by Positive Autism Support and Training

Surrey Hills Community Radio have also aired and interview with Julia Daunt, an adult with PDA The Send Show – Sponsored by Positive Autism Support and Training


For more information on PDA please visit The PDA Society and The PDA Resource

 

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About janesherwin

I am the parent of a child diagnosed with Pathological Demand Avoidance Syndrome. My hopes and aims are to raise awareness of this complex Autism Spectrum Condition presentation.
This entry was posted in 5. Campaigning for PDA Awareness, Surveys, Research, Campaigns and Media Interest, Uncategorized and tagged , , , , , , , . Bookmark the permalink.

One Response to PDA Awareness – Surveys, Research, Campaigns and Media Interest

  1. Pingback: PDA Awareness – Surveys, Research, Campaigns and Media Interest — PDA Guidance – lovepda

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