Yesterday was the debut of Harry Thompson’s new book The PDA Paradox.
To mark the event he had a book launch and invited some of his newly aquired friends from the PDA world – something I was privileged to be a part of.
We kicked off the event by an introduction into the distinctive features of a demand avoidant profile, according to the current thinking on PDA, as detailed by the NAS website (view here for a full description on this).
It is important to note these features are not an exhaustive list – current thinking on the criteria for the presentation of PDA has continued to develop over time and with the ability to gather qualitative information on the subject.
Reserach, by leading practitioners in the field, is always ongoing. No doubt, in the future, adults will add even further clarity on the presentation of a demand avoidant profile.
Presently, the overriding key feature is that the individual is driven to avoid everyday demands and expectations to an extreme extent – which is always rooted in an anxiety-based need to be in control.
Steph Curtis, who is a leading SEND blogger and speaker on PDA, mapped us through her family’s journey so far – likening it to ‘riding the rollercoaster.’ This is something I’m sure many could relate to, it certainly represents our timeline too.
For anyone who would like to learn a little more about Steph’s Two Girls you can read their PDA story using this link.
Steph has written many informative posts on the profile, notely the distinction between ODD and PDA (see here), as well as strategies that have proved useful for her individual family (full post can be found here).
I also talked about our own individual story and the troubles we have had with a child being so misunderstood:
One of the key issues I have experienced with my daughter is her lability of mood swings and her instantaneous shift into violent meltdowns.
This is something I have blogged about in the past and led me to document some of the strategies that can often help (see here).
Briefly I discussed some of the methods we use to support my daughter – particularly in our case was the need to rebuild a child who had only been an infant when she went into a severe crisis.
We then introduced Harry Thompson to the audience, who enthralled everyone with his eloquent and charasmatic insights into what life is like living with PDA.
Some of us will have already come across Harry’s YouTube videos in which he speaks about neurodiversity and many viewers have found them to be extremely informative (a link to his vlogging channel can be found here).
Harry cleverly uses so many creative analogies, which then help to visualise the challenges for the audience, with such delicious wit and humour it left many of us reeling for more.
Introducing our next guest speaker was Sally Russell OBE, who is one of the trustees at the PDA Society, and who has contributed a wealth of information, resources and publications into PDA; she is an inspiring advocate within the community.
Sally supported her son, Isaac Russell, to take the daunting place at the front of the audience, enabling him to feel safe and secure enough to participate in a live social event.
This gave way to some very powerful insights into Isaac’s personal experiences with PDA, coupled with his video which is widely viewed on YouTube too – the video clip in its entirety can be found here.
The first time I ever watched this video it gave me so much understanding behind the frustation that can occur when your brain is unable to do the things you really want it to be able to do.
It certainly gave me a pathway into feeling more empathy for my daughter when she wanted to do something, but was powerless because she couldn’t.
It helped to teach me to park my own emotions and put my daughter’s needs at the centre of any challenges we were experiencing.
A short version of Isaac’s video was then played to the audience and then both Harry and Isaac reclaimed the stage to do a collaborative Q&A.
What was great about this process was it gave two separate opinions and experiences (which is truly reflective of living with PDA) as sometimes there will be similarities, but other times there may be extreme differences between each and every individual on the PDA spectrum.
I always feel emotional when I see the lovely relationship that is apparent between Isaac and his mum (who is clearly his emotional rock in his life).
It always reminds me of how my daughter and I are often socially entwined; the partnership that we have developed so that she can navigate being in public places.
The perfect balance that can happen between a parent and a child when you no longer command respect as a parent but instead gather it through gaining your child’s trust.
We finally closed down after many thought provoking questions, to have some social networking time (sadly I had to cut this short due to childcare issues).
In that short space of time I did manage to meet new people – it was lovely to speak to some wonderful family members who were trying their very best to support their young people.
A current theme that kept appearing was questions around the right provision and how so many schools and care placements seem to find it difficult to meet the complex needs of a demand avoidant individual.
There doesn’t seem to be a definitive answer to this topic, but there are bigger discussions to be had on this area as it seems to be the biggest obstacle for most families.
As Harry suggested in his presentation; school is a demand in itself, the teacher is a demand, learning is a demand. It’s almost as if the PDA’er is designed against the very nature of having a school system because it relies on someone else telling them it is now time to learn.
However, it was also great to have professionals in the audience – there were teaching staff who had given up their personal time to learn more to fully support their students and to whom I commend profusely.
Overral, it was a diverse room full of people, who had all travelled far and wide, but who were instantly connected by the need to understand and support their own individuals with PDA.
It would be great if more of these events could happen and reach those families isolated in communities still without any access to support.
Special thanks also go out to Hilary Harvey, who runs the South Bucks PDA Support Group, and also to Felicity Evans who both volunteered their time to help at this event.
Any feedback would be much appreciated and suggestions for future talks would be readily received.
If you would like any further information on PDA please do visit the PDA Society – a link to the ‘Resources’ section can be found here.
To purchase a copy of The PDA Paradox (published by Jessica Kingsley Publishers) – here is a quick link to order it online.
You can also check out books on other autism and/or related conditions from JKP‘s Autism and Neurodiversity catalogue using this link.
Stay tuned to this blog and we will soon be announcing the details for when Harry Thompson will be joining us at our next Parent Network support group in early March.