Founder & President of PDA Matters Inc and father of a 10 year old boy with PDA. We established this organization because we wanted to help others avoid the 5 years of searching that we had to do before we had that "lightbulb moment" and figured out what was going on and why the other "normal" approaches hadn't been working!
In other words, we wanted to Raise Awareness & Spread Hope about Pathological Demand Avoidance syndrome (PDA), a form of autism.
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:
On Monday June 22nd 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.
I just wanted to let you know about our cute and innovative donation boxes hitting US stores. Currently there are just a few of the “Version 1.0 Production Standard” boxes (shown below) in a limited test market. There are plans to quickly scale up the number of these boxes (including on hand materials for fabricating them) once the results, including storekeeper feedback, are received from the test market stores. Very exciting stuff!!!
This is a picture of our founding donation from David M. £36 (roughly $57 USD) in beautiful £2 coins. Completely unsolicited, David M. appeared at the front door this morning just as we were setting out for a private trip to the south-west of the UK, and he very generously sprung this amazing donation on us. Apparently David has been collecting £2 coins for good causes for years, and he felt that our cause was worthy.
I have to say that this completely took me off guard (in a really good way) as to be honest with you, I haven’t put much thought into raising money. I know that sounds strange for a US businessman (by profession) to say that money hasn’t been on his mind, but in reality we have been so focused on getting the organization formally established and in parallel forging ahead with making the necessary connections to subject matter experts and institutions knowledgeable in PDA that raising money hasn’t felt like a priority! That being said, we do need to work out a fund-raising strategy. We already have donation boxes in some local US stores and a production plan to ramp up the number of boxes available. Additionally we have set up the mechanism to raise funds via the www.PDAMatters.org/Donate/ section of the website, but other than a test transaction it hasn’t been used yet (hint, hint… I guess I am starting to get the idea ;))
With a touched, and very grateful heart I will get back to the matter of our trip to see family (as well as keeping my brain spinning on how to raise some cash to put to work on the ideas we have!)
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 (http://www.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: