Category Archives: PDA

Young people with PDA at risk of being misunderstood

A report by the UK-based PDA Society shows that young people with a PDA profile are at high risk of being misunderstood. Key findings include:

  • 70% aren’t in school or regularly struggle to attend
  • 70% have found a lack of understanding/acceptance a barrier to getting support
  • 78% have difficulties with daily tasks
  • 49% of young people have a diagnosis that includes mention of a PDA profile
  • Conventional ASD approaches hinder rather than help

The report’s author says,

“Usual good parenting techniques such as use of praise, boundaries and ‘rewards and consequences’ fail; whereas negotiation, collaboration, minimal ground rules and careful use of language helps. Without an understanding of the profile and the approaches which work, one can see why professionals may sometimes look at a family and think that things may be the parent’s fault.”

The full report – Being Misunderstood: Experiences of the Pathological Demand Avoidance Profile of ASD – offers recommendations for service providers, professionals, parents and others. It can be downloaded from the PDA Society’s website here.

Diagnosing PDA Within The Guidelines

The following post is reproduced with kind permission of Graeme Storey from within the Facebook PDA – USA Group and originated on thePDAresource.com at this link:

DIAGNOSING PDA within the guidelines!!

I have posted this in a comment on an existing thread, but it is important enough to give it its own thread… The following is on The PDA Resource website, in PDF form, but here it is in text form for everyone.

Never mind the clinicians’ reluctance to diagnose PDA, they CAN do so, within the guidelines, and it is simply the way they write it down:-

November 2016 (original version in January 2015)

PDA does not appear in the diagnostic manuals published by the World Health Organisation or the American Psychiatric Association. In fact, it only just gets a footnote in an appendix of the guidance produced by the UK National Institute for Health and Clinical Excellence.

It will be a while before it gets into any of those manuals because you need research studies involving thousands of diagnosed patients before the editorial boards will even start to notice it.

However, clinicians who are aware of the diagnostic criteria are free, in both the US and the UK, to diagnose PDA as a sub‐type of an existing diagnosable condition.

Indeed, the latest versions of the diagnostic manuals positively encourage clinicians diagnosing ASD to go on and describe the individual presentation in narrative detail.

The wording now being promoted by NAS, the Lorna Wing centre, and professionals such as Phil Christie is “ASD with a profile of [pathological] demand avoidance”. This fits in with their recommendations for other subtypes of autism such as “ASD with a profile of Aspergers”, “ASD with a female profile” etc.

It is also worth noting this paragraph from the NAS website about the use of the word “pathological”:-
“Demand avoidance can be seen in the development of many children, including others on the autism spectrum. It is the extent and extreme nature of this avoidance that causes such difficulties, which is why it has been described as ‘pathological’.”

For this reason, a diagnosis of “ASD with a profile of [pathological] demand avoidance” (with or without the word pathological) is a perfectly valid means of diagnosing PDA and remaining firmly within the letter and spirit of the American diagnostic manuals.

Thanks to Tom Crellin for the explanation above 🙂

Born Naughty? Highlights PDA!

We have recently provided links to some very interesting videos from the 2015 British Channel 4 series Born Naughty? which highlight children with Pathological Demand Avoidance syndrome (PDA) as compared to children who are “typical” and don’t require medical intervention. You can find those video links here:

www.pdamatters.org/videos/

For most, seeing the children in these videos triggers the “PDA light bulb moment” described by many who have discovered this condition within the lives of their family.

We should note that the videos are hosted on YouTube and we are simply providing convenient links to them from our site (we are not hosting the original materials).

Can’t Help Won’t

Can’t Help Won’t is the catchy title of an interesting article on PDA published recently in the Huffington Post. It’s quite a long read, but well worth it.

The article begins with an outline of what PDA is. It then moves on to note the lack of awareness of the condition:

Unfortunately, until recently there has been limited professional interest in the syndrome and a lack of awareness of its presentation amongst clinicians, despite the huge challenges faced by those with PDA and their families, friends and carers.

The situation in the UK is slowly improving, according to Phil Christie, a leading British clinical psychologist in the field of autism. However, Christie says:

clinicians have been the group that has been hardest to attract to conferences and training events.

More positively, the article gives examples of children whose condition has improved somewhat after a period of following PDA guidelines. It ends on this hopeful note:

If we can help children with PDA through their childhoods feeling for the most part positive about themselves, and teach them to develop the coping methods that they’ll need to get there, then … once they attain adulthood and secure increased control of their lives, there’s little reason that their anxieties won’t reduce.

As I said at the outset, Can’t Help Won’t is well worth a read. Try it!

A Great New Article

I wanted to let you know about a great new article written by Phil Christie describing the symptoms of PDA in children and young people, and explains how therapists – and, through them, teachers and parents – can understand and work with it. It is absolutely worth the read!

This article was first published in BACP Children & Young People Journal, June 2015. Republished here by permission of Phil Christie. We appreciate the opportunity to share this work with you here:

http://www.pdamatters.org/wordpress/wp-content/uploads/2015/07/Christie_article_June_2015.pdf