It was approximately four years ago that I first heard the term PDA while I was watching a TV show called ‘Autistic and Stagestruck’. Seeing lots of similarities between the little girl on the TV show who had PDA and my own daughter I googled the condition in the hope to find out more. When I googled PDA there were only a handful of sites that offered any information about PDA. The most notable and important ones for me were the PDA Contact Group http://www.pdacontact.org.uk/ and the wonderful You Tube videos made by a fellow parent http://www.youtube.com/user/bluemillicent?feature=watch. I felt like I had hit the jackpot, right here, right now following several years of searching, reading, googling, researching and finding nothing that either fully described or adequately explained my daughter’s extremely complex and challenging behaviour I had finally struck gold. I was blissfully unaware, at that stage, that PDA was not in a diagnositic manual and that it was only recognized and diagnosed in a handful of areas across the UK.
During the last four years awareness has exploded which is apparent when you now google PDA. Instead of a handful of sites you are now met with page after page of information and references to PDA. From facegroup support groups and parent led blogs to reputable Autism Organisations, full to capacity conferences, and published papers in highly respected medical journals everyone seems to be talking about PDA. Below are a few links illustrating just how far and wide awareness is spreading.
- The National Autistic Society http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx
- Autism Education Trust http://www.aettraininghubs.org.uk/wp-content/uploads/2012/05/5.2-strategies-for-teaching-pupils-with-PDA.pdf
- Pathological Demand Avoidance Conference http://www.autism.org.uk/News-and-events/NAS-conferences/Previous-conferences/2013/PDA-London-2013/About-the-event.aspx
- Forthcoming Pathological Demand Avoidance Course Book Now !! http://www.autism.org.uk/our-services/training-and-consultancy/specialist-training/pda-one-day-workshop.aspx
- ‘Understanding Pathological Demand Avoidance In Children’ published by Jessica Kingsley Publishers http://www.jkp.com/catalogue/book/9781849050746
- Research Paper Published, Pathological Demand Avoidance: Exploring the behavioural profile http://aut.sagepub.com/content/early/2013/10/07/1362361313481861.abstract
- Research Paper Published, Development of the ‘Extreme Demand Avoidance Questionnaire’http://onlinelibrary.wiley.com/doi/10.1111/jcpp.12149/abstract
- The development of the PDA resource page, by Graeme Storey, which aims to bring all of the current information together collectively in one place http://www.thepdaresource.com/
- A recent article in ‘Autism Daily Newscast’ http://www.autismdailynewscast.com/parent-carolyn-weighill-talks-about-pathological-demand-avoidance-pda/6222/joworgan/?utm_source=rss&utm_medium=rss&utm_campaign=parent-carolyn-weighill-talks-about-pathological-demand-avoidance-pda
- BMJ a peer reviewed medical journal http://adc.bmj.com/content/88/7/595.full
- Forthcoming PDA Workshop http://www.autismwestmidlands.org.uk/content/856143/training/seminars_and_workshops/pathological_demand_avoidance_workshop/
- Norsaca PDA Publications http://www.norsaca.org.uk/public-download-categories/pathological-demand-avoidance
- PDA Government Petition Please Sign !! http://epetitions.direct.gov.uk/petitions/57807
- This is an Italian site with debate and information about PDA, one of the comments link back to this blog, this is how widespread our information can travel. There is a translation button at the top of the page.http://spazioasperger.it/forum/discussion/2092/che-cose-la-pda-sindrome-da-evitamento-estremo-delle-richieste/p1 and more info http://spazioasperger.it/forum/discussion/2092/che-cose-la-pda-sindrome-da-evitamento-estremo-delle-richieste/p1
The above links are just a taster and really are just the tip of the ice berg.
For, I don’t know how many years, the ‘PDA Establishment’ as I like to call them have been working tirelessly to try and educate and validate the concept of PDA to fellow professionals while also, for some, simultaneously balancing this with offering much needed parental support and assessment. Phil Christie, Ruth Fidler, Margo Duncan, Liz O’nions, Judy Gould, The PDA Contact Group Committee and of course not forgetting Elizabeth Newson to name but a few have steadily made huge inroads into the professional world for PDA recognition.
There is also a surge of pressure from parents and adults with PDA to try and spread awareness, educate professionals and to put pressure on local authorities to assess and recognize that PDA is a distinct and definable sub group within the ‘Autisim Spectrum’ and is a syndrome that cannot be explained by labels that are currently in the diagnostic manuals. Perhaps most importantly is the fact that a diagnosis of PDA is the only sign post to the correct strategies and understanding.
Despite all of the above parents are increasingly hitting brick walls with front line professionals who have either never heard of PDA or have not kept up to date with current information. So how can we help and work in conjunction with the ‘PDA Establishment’ to try and compliment the work that they are currently doing and to promote better awareness on all levels.
- Write a blog like me, not only does it help to spread awareness, help other parents and give a personal insight into PDA it is also a really fab method of helping yourself. I have found that writing about my experiences has really helped me on an emotional level. To get all of those thoughts that frantically run about your head onto paper is a great way of keeping your head clear and knowing that you are simultaneously helping others is a wonderful tonic.
- Tweet your blog and other important information or updates on Twitter. This is another fab way of spreading awareness and another area of social media where we can establish our own community. Remember to hash tag your tweets so that we can find you, I hashtag all my tweets as follows #pdaaware #pda #asd #autism.
- Set up your own community facebook page where you can post your blog posts and any new information that you come across.
- Share your story with respected publications within the Autism Community as Carolyn Weighill did in one of the links above. If you are very brave you may wish to go more public but be prepared for a backlash of ignorance, this area of awareness is not for the faint hearted.
- Tentatively try to make inroads within your own local authority. Stoke On Trent Education Authority and Social Services accept and acknowledge PDA as a result of their experiences with Mollie. Following a four year exile I am steadily making very small inroads with the health authority. I have found the published research papers by Liz O’nions an extremely valuable resource when it comes to trying to encourage interest from fellow professionals. The links above may also add more credence to your argument and help to promote more interest.
- Join the PDA Contact Group Forum and the countless Facebook support groups, the more we link up with each other, the stronger we become.
- I am in the process of writing a book detailing my journey with Mollie, my understanding of what makes her tick and the strategies and approaches that have proved successful for us. Perhaps you could write a book and share your experiences.
- How about more videos on You Tube, I’m a bit shy and certainly don’t have the technical wizardry to produce the kind of videos that are currently available but perhaps this could be your niche.
- Occasionally post something about PDA on your private facebook pages, use the facebook banner or the smaller facebook profile picture created by Graeme Storey. Its all free advertising!!
- If you are a blogger link your fellow PDA bloggers in your blogroll.
- If you have your own PDA facebook page then show your fellow PDA Facebookers’ in your liked pages. It’s all about linking together and showing how many more of us there are.
What ever you can manage to do, no matter how small, it all contributes to the current wave of awareness. We have made massive progress in the last few years we just need to keep the momentum flowing.
For More Information about PDA, Support Groups and Up To Date Information Please Visit http://www.thepdaresource.com/