Tuesday, 16 October 2018

Pathological Demand Avoidance (PDA) in the News

Stephs Two Girls October 16, 2018 ASD, Asperger Syndrome, Asperger's, autism, Autism Spectrum Disorder, Early Day Motion, Pathological Demand Avoidance, PDA, PDA info

When I run training on Pathological Demand Avoidance on behalf of the PDA Society, I always talk through the PDA timeline.

Elizabeth Newson first identified a group of children who were similar to other autistic children but with some differences back in the 1980s, and that's when the term Pathological Demand Avoidance was first dicussed. Hans Asperger first talked about a group of children to be later diagnosed with Asperger Syndrome in the 1940s, but this term wasn't used regularly until 40 years later, in the 1980s. So we can see that Pathological Demand Avoidance (PDA) might be following a similar trajectory in terms of time and common knowledge.

Whilst Asperger Syndrome has now been removed from the American medical journal (DSM-5) in favour of using the over-riding term Autism Spectrum Disorder*, it's clear that those with the characteristics which fitted that Asperger's diagnosis before it ceased to be used as a diagnostic term do still fall into a general group with others similar to them. Some children who are newly diagnosed with ASD rather than Asperger's could still be classified in this group. As identified by Elizabeth Newson, there is definitely a group of children who share similar characteristics for whom the term Asperger's most definitely wouldn't 'fit' but PDA would.

Great news today then, that PDA has been formally acknowledged in the new national guidelines for autism in Australia. Moreover, there has been an Early Day Motion put forward to parliament by an MP in this country, and there has already been some cross-party support for this. The exact wording is:

“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.”

Two high profile cases involving PDA have been in the news recently. Sir Mike Penning, MP for Hemel Hempstead, is leading this motion after listening to the struggles faced by Danielle who writes over at PDA Parenting blog. Please do go and read her post EDM on PDA - we need your help!. Another case which has had much public support is that of Bethany, a 17 year old girl who was kept in seclusion away from her family for 21 months. I explained a little bit about what had happened in a Facebook post and her Dad wrote a summary of their family's story here.

If you would like to help in some way please do visit the PDA Society webpage where there is a template letter which you can send to your own MP to ask for support with this motion. Mine has been emailed this afternoon. The more that PDA is discussed everywhere, the more support and understanding families will eventually receive.

Huge thanks must go to everyone at the PDA Society, the PDA Action group following their very successful campaign earlier this year, and the two families who have bravely and openly shared their stories involving PDA to help provoke discussion and encourage support to be forthcoming for more families.

To find out more about our experiences, please check out our 'About Us' page. If you are looking for more information on Pathological Demand Avoidance, the posts below may help.