A common enquiry we get when people discover PDA Matters is about connecting with others who are dealing with similar challenges. We have our own Forums, but they are quiet. This is probably for a number of reasons, not the least of which is that there is a far more widely reaching tool with a lot of groups on it…. Facebook!

While it is our policy to not endorse any external entity (Facebook groups or otherwise) we felt it appropriate to acknowledge the existence of several PDA Groups on Facebook.

The following post is reproduced by the kind permission of Graeme Storey, admin for the Facebook groups listed in the article below. Please note that these groups are “closed” meaning that to access them you will be prompted to submit an application. This is to allow the sometimes sensitive topics discussed within them to be shared without fear of them being readily externalized. Even with that protection, good prudence would suggest that individuals use common sense when sharing online in any format, especially when under stressful conditions. The groups have their own, simple and sensible rules for sharing.

The article is below:

“Following on from some recent interaction in another thread, I am sorry you don’t know all the groups we run (although our accredited affiliate groups are all listed on the PDA Resource website smile emoticon:) )
 So, for those interested, we also have other affiliated PDA Groups, which I co-founded and help admin at the moment – meaning I can let you in very easily if you want/need to apply. Please stay in this group, if you want, as well, and that way everyone can benefit from all the mutual support. 🙂 Here we go:-

The PDA Global Group
https://www.facebook.com/groups/pdaglobal/

The PDA-USA Group (incorporates Canada members, too) – The first group that grew from the Global Group
www.facebook.com/groups/pdausa/

The PDA Australia Group – The second group that grew from the Global Group
www.facebook.com/groups/pdaaustralia

The PDA New Zealand Group – The third group that grew from the Global Group
www.facebook.com/groups/pdanewzealand/

I am dealing with applications for all the above groups just now, which makes it easy for me to see if any of you are already in one – that saves everyone time. 🙂

Graeme Storey”

Another resource that Graeme is associated with is:

www.thepdaresource.com

This is a comprehensive site with lots of information. We link to this and other resources on our Links page.

A new year brings with it a new project. Today we mailed our first tranche of letters to North American professionals we have heard are aware of PDA. Our goal is to develop a network of providers by skill (e.g. LCSW, PsyD, etc…), domain (counseling, community support services, therapy, etc…) and geography (state/province) and to provide access to this community to an archive of materials aimed at professionals, which is regularly updated from a global list of sources. In addition to providing this community with resources, we are asking if each of the professionals on this list is willing to be listed as being aware of PDA so that people who contact us for information can be provided their contact info as well.

More to come as this project evolves.

On Monday June 22^nd 2015 the PDAMatters team travelled south to Stratford-Upon-Avon (home of Shakespeare – https://en.wikipedia.org/wiki/Stratford-upon-Avon) to meet with Sarah Eglin of Maverick Productions (http://www.mavericktv.co.uk/) and Paul Kittel, a freelance director. Sarah produced “Born Naughty?” (http://www.channel4.com/programmes/born-naughty) and Paul filmed and directed the recent Channel 4 documentary series which followed two children and their families per episode. The concept of the show was to peer into the lives of two families and, through enabling access to medical and behavioral professionals, determine if the child had an underlying medical condition or if they needed behavioral supports to be put in place to assist them. For those of you who haven’t been able to watch the series, two of the four episodes featured children with PDA (Honey in episode 1 & Charlie in episode 4).

When we arrived in Stratford-Upon-Avon, it was an idyllic British summer day, and we made our way to the restaurant where we had arranged to meet the “Born Naughty?” team. This time we were joined by some additional UK members of PDA Matters, who had travelled up from the south-west of the UK. In addition to enjoying their company, the other team members have a background in TV production and they had actually helped set up the meeting with Sarah and Paul. This support was invaluable!

We enjoyed just over an hour with Sarah and Paul, and from our discussion it was apparent that, besides being top-notch TV professionals, they are also genuine, grounded and thoroughly interesting people. We shared our story with Sarah and Paul, and they reciprocated by telling us about their interests with behaviorally-challenged children and how the show came together over the course of a year. We had a few specific items that we were looking to achieve through the meeting, and we covered every one of them. At the right time in the near future, I hope to be able to share some more details about the progress towards our mission that will hopefully come from this meeting.

When we said our goodbyes and departed for the north, I reflected on the meeting and how it came together. Once again I was reminded about the kindness of those who are affected by, or passionate about, behaviorally-challenged children (medically driven or otherwise). I am very grateful to Sarah, Paul and Maverick for making the meeting happen at such short notice and I am excited about the possibilities that may come from the discussion.

On a glorious UK morning at 5am we got up and set out for Lancashire. Once over the now overcast Pennines, we found ourselves arriving at a beautiful higher education campus which was obviously slightly more vacant than usual. The friendly security staff helped us park and we entered the building through an oddly placed, green revolving door. We made our way to the designated meeting spot and waited to connect with the person we had driven 115 miles to see.

Right on time, Dr Judith Brown, Head of Autism Knowledge and Expertise (Child & Clinical), National Autistic Society, appeared and introduced herself to us as “Jude”. The next 80 minutes were amongst the most engaging and enjoyable experience, which left us bubbling over with enthusiasm for what we have embarked on with our PDA Matters organization. Clearly both expert and passionate, Jude is also very lively and engaging. The conversation bantered back and forth between a variety of relevant Autism and PDA topics including Jude’s background and her past and current involvement in Pathological Demand Avoidance.

The most disappointing part of our discussion was learning that despite the all of the UK-based research efforts, the Elizabeth Newson Centre (https://pdamatters.org/pda-gold/), autism outreach and awareness and the recent UK Channel 4 series “Born Naughty?” (http://www.channel4.com/programmes/born-naughty) highlighting PDA cases in 2 of the 4 episodes aired in the last 2 months, there is still a vacuum around PDA in the UK. As unacceptable as this seemed to me at the outset, as the concept sank in through my thick cranium it dawned on me that this was simply another twist in the plot. In fact, if anything it makes what we are trying to do with PDA Matters (Raising Awareness and Spreading Hope about Pathological Demand Avoidance – R.A.S.H.) even more needed and not just in the USA!

With a great “first” meeting in our rearview mirror, we parked back in front of the house in Nottingham just as the clock turned 3pm. A great use of a day, and still time to connect with another PDA family face-to-face and seek some mutual comfort through sharing our experiences.

For those of you out there feeling down, out, scared, lost or alone, whatever your troubles are, get out there and feel like you are doing something for others and you will find great peace for yourself. To quote that notable kids’ TV program “Yo Gabba Gabba!” (http://www.yogabbagabba.tv/), “Try it, You’ll like it!”

We have been digging and digging for four years and finally we found it… PDA gold! Remarkably we didn’t even need a shovel, just a pen, a notebook and a visitor sticker. Today we met with the staff of the Elizabeth Newson Centre (ENC), part of the Sutherland House School in Ravenshead, Nottingham, U.K.

This week I have journeyed from the USA to the UK on a mission to get more information about Pathological Demand Avoidance syndrome (PDA) and to start to work out how we can get it recognized globally. The first important link has been made today (June 18th 2015), through an amazing meeting with the staff at the ENC who are thoroughly grounded, well connected and genuine people with a passion for helping children and families with Autism Spectrum Disorder (ASD) and specialists in cases of extreme demand avoidance, PDA. In the context of PDA Matters, this is the Mother Lode (https://en.wikipedia.org/wiki/Mother_lode).

While these are only our first steps into the world of PDA, the 25 years of research that has been embodied into the programs running at the Elizabeth Newson Centre are clearly paying dividends to those who attend there. The staff are incredible, experienced and happy to make connections.

For those of you who know me, you will get the “Gold Rush” references. For those who don’t know me, check this out:

http://www.discovery.com/tv-shows/gold-rush/

Cheers,

Guy Rotheram

Founder, PDA Matters

Guy.Rotheram@PDAMatters.org

UK Telephone:  07745 870 532

USA Telephone: 1-203-660-7116