The first time I ever wrote my thoughts down about how challenging life was in our household, I never expected it to lead to so many new experiences and meetings with like minded people who would be equally as passionate as I was about improving the systems that were in place.
That there would be other families out there who were being just as misunderstood as we were.
I certainly knew nothing about blogging, PR or the sheer influential power of social media.
I had no experience of political campaigning or thinking strategically.
I was only at the start of a journey of really discovering what Pathological Demand Avoidance (PDA) really was and how my mindset on parenting was going to have to change.
The only thing I did have was the passion and the will to want something to change.
Six months later I took my daughter to her first paediatritiac appointment, armed with as much evidence as I could possibly accumulate, and the locum said that he would get eyebrows raised but he felt it was important to discuss PDA in his assessment letter.
His hands were tied because locally he was unable to diagnose this profile, but he wrote that every person involved in my daugther’s care needed to use strategies that were specific to a child with PDA as ‘her disability had become a barrier’ to ever being able to access an education.
Sadly, my daughter still went into crisis from the damage of being misunderstood and from the trauma of being unable to fit into a system that wasn’t able to accomodate her.
Fast forward to this year and I took her with me on an organised PDA Call For Action in Westminster (a peaceful protest which hoped to raise some awareness and clearer pathways to access appropriate support).
I also contacted my MP, Sir Mike Penning, who suggested meeting with us to discuss the campaign and it was then covered in our local newspaper, see here.
Sir Mike offered us his full support with the campaign and suggested to put forward an EDM.
I had no idea what that actually meant!
After a bit of clarification 🤦♀️ I found out it stood for an Early Day Motion, which is a way to draw attention and gauge parliamentary support; the aim hopefully to get PDA debated at the House of Commons.
My heart did a great big leap in the office with pure excitement and gratitude to someone so senior who was taking this matter seriously.
He engaged with my daughter and even joked that we should have brought one of our t-shirts for him to wear.
Sir Mike offered my daughter his hand as he showed her through the building, offering kindness, as he made conversation with her and gave her a quick tour – as a parent I was extremely touched by the support we were given as his constituents.
At last we had a MP who is not only backing the PDA Call For Action, but was being proactive on moving the campaign forwards.
And true to his word, our loyal MP and his constituency office, have set it up as EDM 1669 and already it has gained five signatures showing some cross party support.
But now we have the grand task to gather more supporters – some of the amazing volunteers at the PDA Society have issued a news update to assist with this – see here.
There are ways that you can help with raising awareness and potentially gaining support from your own MP’s such as:
🌟 It would be great if you could find out who your local MP is (if unsure, then please do use this quick search tool)
🌟 You could write or email your MP to ask them for their support (again here is a copy of the Template Word Doc that has been drafted by the PDA Society and can easily be adjusted)
🌟 Another option is to Tweet them – a template has already been created for this by the PDA Society or you can copy and paste this text:
Pls support Sir Mike Penning MP’s EDM1669 about #PathologicalDemandAvoidance: bit.ly/2QTuimV. The #PDA profile of autism needs greater recognition – studies show individuals are being misunderstood & needs aren’t being met: https://www.pdasociety.org.uk/blog/2018/10/early-day-motion-about-pda
🌟 If you take part in contacting your MP and/or receive a positive response then please do let the PDA Society know on email@example.com
🌟 As much positive sharing of this post or the news feature on the PDA Society site would be extremely helpful in gathering signatures
🌟 Families and friends could also support this cause and contact their own MP’s using the template, stating their individual reason/connection to PDA
🌟 Professionals who are working with individuals and families, who may lack the access to specialist support could also contact their MP’s. It may also be frustrating when this diagnostic profile best fits an individual, but they have been unable to diagnose to keep in with their county guidelines. Any experience or support would be greatly received.
If you need to ask a question or want some further support on this matter then please do get in contact on this blog or via the PDA Society on firstname.lastname@example.org.
Let’s see if we can make a difference🤞and make some positive changes.