Weʼve raised £1,165 to raise awareness and funds for the PDA Society, who are a small charity (charity number 1165038) and who receive no statutory funding!
- Funded on Saturday, 6th August 2022
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Apologies for the lengthy message but as usual I have much to say!
For those of you that know me well, you will be aware that I am absolutely petrified of heights! So why may you ask am I willing to throw myself out of a plane and hope to land in one piece, with my dry suit still very much dry!?
I have a cause that is incredibly moving, personal and close to my heart – I want to raise awareness and funds for the Pathological Demand Avoidance Society (PDA) which is an Autism Spectrum profile and who’s awareness day this year is 15th May - the day of my jump at Sibson Airfield, Wansford for anyone who wants to pop down and support me!
The PDA Society is a registered charity in England and Wales, led and run by a small team of parents, whom have a direct connection with PDA. They receive no statutory funding, so are reliant on donations and successful grant applications to cover the majority of their activities.
There is no support locally or nationally for children with Autism and PDA, combined with extreme anxiety and mental health issues. CAMHS (Children and Adolescent Mental Health Services) provide support for those children with mental health issues, but not when they are also diagnosed with being on the Autism Spectrum!
I want to see young people on the autism spectrum given the same start in life as any other child. Currently, outcomes simply aren’t good enough, with too many autistic children falling through the cracks and not getting the care and support they need. With the right support, they can live happy, healthy and independent lives within their own communities.
Autism took many years to be recognised by health professionals and sadly PDA is still on the same long journey. Recent cases in the media have highlighted PDA and we need to continue to raise awareness and understanding, it’s vital we have a national autism strategy that works for both children and adults.
PDA explained - Children and adults with the PDA profile of autism are often misunderstood! It is a complex and challenging condition.
The brain (specifically the amygdala) treats even the tiniest expectation (even something they really want to do) as a threat, causing the body to panic. This understandably causes near-constant anxiety.
Add to that the anxiety that arises because the PDAer has so often found that whatever they do tends to lead to an unpredictable or uncomfortable reaction from other people (on top of characteristically autistic social anxiety). This is a reason for many to address even the people they love in blunt or offensive terms, and to clam up with people they’re less close to (situational mutism).
The only times a PDAer is behaving compliantly is either when they are in a comfortable low-arousal setting with someone they trust, or when they are masking (which will be causing them enormous stress and trauma).
PDAers tend to live in the moment (although also keeping very long and detailed memories), so incentives and punishments are pointless; they will learn only from natural unavoidable consequences, not artificial sanctions. Rewards can even become another demand that makes things worse.
A PDAer is likely to see themselves as equal to any other human - parent, teacher, officer etc - and lack of “respect” that has not been earned will wind up those who are seeking compliance. Anyone caring for a PDAer will face hassle from ill-informed and intolerant onlookers and relatives!
Many PDAers assume you know what they’re thinking and want exactly what they want at that moment (perhaps an extreme lack of other-mindedness). Many need time to absorb what they’re hearing and compose a response (repeating or rephrasing your point will simply mean they’ll have to start processing all over again so just wait a bit instead).
So there’s a hard-wired physical reason for constant anxiety, and the persistent drive for autonomy and control (and some of the communication characteristics) arise from trying to limit that anxiety.
Why this means so much to me - My beautiful 12 year old niece is on the Autism Spectrum – She has diagnosed high-functioning Asperger’s Syndrome, undiagnosed PDA coupled with extreme anxiety and OCD.
Despite excelling in school, top in Maths, Science, English and French, she faces many daily struggles and challenges with little or no professional support available.
My sister is incredible and does an amazing job but on occasions it becomes extremely overwhelming for her and Grace. With the right professional support, Grace would have the opportunity to reach her full potential, lead a normal independent life and be even more the superstar she was born to be.
Thank you for taking the time to read my story and if you can support me, either by donating or just by raising awareness, I would be eternally grateful.
Thank you x
- 2 years ago
Tracey Smith2 years ago
THANK YOU 🐼💙
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Jill. Chris, Eliot and Isaac
May 30, 2022
Well done Tracey - full of admiration for you. xxxx
May 30, 2022
Well done Tracey!
May 29, 2022
We are just going through the process of getting our son assessed.Your description of PDA is spot on!Well done on your jump x
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