Hand-in-hand

a families journey with Pathological Demand Avoidance (PDA) a form of Autism

[Hand-in-hand @PanDAcornUK]

To maintain my daughter’s anonymity we chose a name for her for my blog and posts on social media: we chose Pandacorn; the Panda from the PDA society ambassador and a unicorn, for her wonderful imagination. I refer to her as ‘Little P’ for Little Pandacorn. #PDA @PDASociety

[Hand-in-hand @PanDAcornUK]

@AspieHuman She wore hearing aids set to emit white noise, my basic understanding was that it effectively ‘retuned’ her auditory perception. She wore them for just over a year. She is now still sound sensitive but manageably so rather than hypersensitive impacting every aspect of life.

[Get PDA recognised @Tracyjtanner]

https://t.co/Iz1Wc94MbH: NAS to prevent their Head of Autism Knowledge and Expertise publically refuting PDA - Sign the Petition! https://t.co/FvG5mYV7wD via @UKChange

[Hand-in-hand @PanDAcornUK]

@princessaspien Watching your videos has helped her be positive about her ASD, thank you for being a great role model for our young girls growing up with ASD #positiverolemodels #ASD

[Hand-in-hand @PanDAcornUK]

@princessaspien Think it really helped her in the car and playing a new board game with the family. She’s also talked about some communication cards you made, wants to show me the video so that we can make some similar ones for here......

[Hand-in-hand @PanDAcornUK]

One of my main aims now ‘little P’ has her official diagnosis, is to do my best to enable her to understand herself; why she feels, thinks and experiences things the way she does and be proud of who she is! #AutisticPride #BeingUnderstood #PDA

[Hand-in-hand @PanDAcornUK]

@princessaspien https://t.co/W5703O3lsp

[Hand-in-hand @PanDAcornUK]

Testing my crafting skills this afternoon - quick fix weighted lap pad - having watched a YouTube video of Princess Aspien explaining how using her weighted lap pad helps her relax when anxious, ‘Little P’ commented ‘ooh that might help me in the car on long journeys’.....

[Hand-in-hand @PanDAcornUK]

......with a 3hr car journey coming up in a few days I’ve tried to make a temporary one for her to try out - if it works I’ll either invest in one or maybe even try and make a better one for her......... #PDA #ASD #sensorycalming #proprioceptiveinput

[Hand-in-hand @PanDAcornUK]

Testing my crafting skills this afternoon - quick fix weighted lap pad - having watched a YouTube video of Princess Aspien explaining how using her weighted lap pad helps her relax when anxious, ‘Little P’ commented ‘ooh that might help me in the car on long journeys’.....

[Hand-in-hand @PanDAcornUK]

@KieranRose7 My PDAer definitely does have this as part of her mask; it may not be as strong an element as for non-PDAers and is over powered by Demand avoidance, but it is definitely an integral part of her mask. #PDA

[Hand-in-hand @PanDAcornUK]

@KieranRose7 Replying with 2 hats on:Hat 1 - self identifying autistic adult - wonderfully written explanation, I can identify with this at several times in my life, Thankyou. Hat 2 - parent of a child with PDA. You imply that PDAers do not have the ‘inability to say no’ part of their mask..

[Hand-in-hand @PanDAcornUK]

@LisaBasham6 @productof1970 @PDASociety At least then you can push for appropriate Demand Avoidant strategies rather than ‘standard’ ASD strategies, as we know these don’t work. REMEMBER - YOU know your child best and YOU are their best advocate, you are unlikely to be making it up. 2/2

[Hand-in-hand @PanDAcornUK]

PDA Action Day - May 15th Adopting this approach has been key to helping our little PDA’er. @PDASociety #PDAday #PositivePDA #pathologicaldemandavoidance #PDA #autism

[Hand-in-hand @PanDAcornUK]

@LisaBasham6 @productof1970 @PDASociety Did the paediatrician recognise ASD? Will they acknowledge demand avoidance behaviours? If so will they go down the line of Autism Spectrum Disorder with Demand Avoidant profile? 1/2

[Hand-in-hand @PanDAcornUK]

@Action4ASD Just seen this ‘Inclusion ABC’s’ on a page on Facebook, lots of ideas - https://t.co/7bx8A6czL3

[Hand-in-hand @PanDAcornUK]

@AnnaKennedy1 2/3. ....the lanyard had a metal clip on, so has to be taken off for security....... I cut ours off, but I got ours beforehand, if I’d got it at the airport on the day, the potential help from lanyard would have been instantly lost!!!!

[Hand-in-hand @PanDAcornUK]

@AnnaKennedy1 1/2 This is great news. We’ve had some awful experiences at Heathrow. Had a great exp at Gatwick with their hidden disability lanyard BUT it’s the small things; daughters biggest problem at airports is the security check.....

[Hand-in-hand @PanDAcornUK]

Our assessment/diagnosis journey - Part 2 https://t.co/edrJuN4Fd4. #PDA #PathologicalDemandAvoidance @Help4Psychology #femaleASD

[Hand-in-hand @PanDAcornUK]

@MsJoBillington @Action4ASD I can access the full papers for both, via your link or a scholar google search. Thanks.