As the mother of a PDA child it was quite a challenge and a change from the norm for me to get out attend this great little conference organised by the PDA Research collective but I am so glad I made the effort. It may of been only an afternoon but they packed so much in and even found time for a tea and cake break, I say even, I would class this as a must have at any event. The environment was warm and welcoming and we were offered a hot drink on arrival before we took our seats, in all there were around 70 attending parents, professionals and interested parties.
All of the speakers were so knowledgable and engaging, here is a short synopsis of each of their talks in the order they spoke. I am afraid my notes could of been better as note taking is notoriously difficult for a dyslexic like me and an enormous amount of ground was covered so this is a combination of the things that resonated most strongly with me so stuck in my mind and what I could make out from my spidery notes!
Harry Thompson is a PDAer and well known youtuber. He recently wrote a book called the ‘PDA Paradox’ which is available to buy either as traditional format or as an ebook HERE.
Harry is young and passionate and full of life, he delivered his talk while striding around the floor with enormous confidence and animation. A very engaging speaker, with a self awareness and honesty that is rare at any age. His talk was accompanied by powerful eye catching graphics that perfectly illustrated each of his points.
He described PDA as having several heads that took control for different purposes the most extreme of which was ‘the darkness’ (my son has also talked about what he calls the blackness so this really resonated with me) which took over when control was impossible by other means or demands too great and caused the extreme meltdown often associated with PDA. During the meltdowns he said the person shrinks and has no control over what this darkness head is doing even though at times they may be aware that it is wrong. During this time empathy, understanding and reasoning is absent (as I am sure many of us parents can attest) but afterwards the PDAer may feel ‘crushed’ by what has occurred.
He explained that for this ‘head’ to come in to play the PDaer would likely taken a lot of hits. He described these hits as akin to being shot at, painful situations or events where the PDAer felt a loss of control painfully spiking anxiety. He said often a number of hits could be absorbed, at least for a while but when it became to many that is when the darkness took over and meltdown occurred.
What struck me about this was the clarity of just how painful and damaging not getting the right support and environment was for a PDAer. He detailed how that environment and support was very much focused around good strong collaborative relationships based on trust and understanding and how good PDAers were at being able to tell when someone didn’t like them or wasn’t being honest. This was something that also really resonated with me about my son.
Harry then discussed education and how schools in built reward and consequence system (even in the most progressive schools) were completely adverse to everything the PDAer needs, how the very system goes against the grain for a person with this profile. He spoke of a PDAers need to constantly try and level things by taking back an element of control by which ever means necessary in order to feel in a place of safety and balance. He also explained the benefits of following interests and how when interests and collaboration aligned that’s when learning could happen because PDAers are natural curious and want to learn.
He also raised the point that there was constant internal tussle between what the individual wanted or didn’t want to do and the will of the PDA. He talked about when a PDAer wanted to participate in something but the demand was too great and PDA may say no or the times a PDAer didn’t want to be aggressive or manipulative but the PDA insisted as it needed to escape the demand of a situation. He said the goal would be to have the perfect balance so both the PDAer and the PDA could say this, ie a collaborative, demand free environment where yes was easy on all levels.
One of the parts I found really moving was when he described life for a PDAer as being like a Penguin in a rainforest, i.e permanently uncomfortable because it not in its natural environment. He said every now and then they might find a safe haven, an environment that was perfect but that it was so rare and felt so good to be there it was hard to leave. That puts a whole different spin on why our children may be so reluctant to leave the house or even their room doesn’t it?
After the all important tea and cake the next speaker was….
I think most would know Sally cat as the author and illustrator of the wonderful memes that fly around facebook (The Sally Cat Facebook page can be found HERE) and she is also the author/compiler of the book ‘PDAers by PDAers’. (Available to buy HERE).
As the title of the book suggests she is a PDAer herself and has an 8 year old daughter who is also PDA. Her book, all profits from the sale of which go to the PDA society, is available as an ebook or hard copy HERE.
Sally was immediately engaging and funny and her talk was illustrated throughout by her memes and the results of the surveys she has undertaken to better understand herself and PDA. The title of her presentation was ‘Why I think PDA Social Mimicry and Masking is More Hard-wired Than non-PDA autistic Mimicry and Masking’.
Her warmth and passion shone through as she talked about masking and she felt that unlike most autistic masking, it was an inbuilt survival mechanism for a PDAer and not necessarily always a bad or damaging thing for her.
Sally Cat is passionate about changing outcomes for PDAers not least because of her daughters right to be understood. She talked about how she had in younger years had to self medicate at times with drugs and alcohol in order to escape from or cope with the world. She emphasised the importance of PDA being recognised and how her own lightbulb moment had helped her so much.
Sally described a need for freedom and self expression and most of all to do things in her own way without being told it was the ‘wrong way’. Both she and Harry emphasised (and showed by their presence, confidence and knowledge) that PDAers can achieve amazing things as long as they are not limited.
Cassandra Davies is a founder member of PDA Action and a parent of a PDAer. She works tirelessly to educate and helps run campaigns to get PDA more widely recognised and understood. The PDA action has a Facebook page, a Facebook group and a Twitter account. Cassandra comes across as very warm and extremely knowledgable in both SEND in general and PDA in particular.
Cassandra provided us with an excellent hand out packed with information and then opened up the floor to questions.
It was clear from the amount of hands and scramble to be heard that parents are desperate for knowledge to help their children, many felt isolated and as if no one was hearing them. All three speakers with their combined knowledge added to the answers and plenty of time was given so everyone could be heard. There seemed to be three main areas of concern education, managing behaviour and diagnoses. It was clear from answers that:
A. The standard education model did not fit well for autistic children presenting as PDA and although home education worked well for some there was not an effective answer for many. Sally Cat did point out however that education is a lifelong thing and there is no cut off date and many PDAers like herself do much better in higher education where they can follow their interests and have more equality in the classroom.
B. Behaviour that was considered undesirable was a result of the environment and/or poor relationships with those around or a reaction to the environment or relationships being bad at some point previously and bottled up.
C. Diagnosis was a nightmare to get , often virtually impossible on the NHS and even with a diagnoses was often dismissed as not being a valid or recognise condition.
After the questions was the opportunity to mix and mingle.
All in all it was an amazingly inspiring day, with the speakers as living proof of the talent within so many PDAers. With the PDA society’s theme this year being improving outcomes I feel there is so much that needs to change but so much hope too, especially with people like these fighting PDA’s corner.
If you liked the sound of this event PDA Action is hosting its full conference on 18 May 2019. To book your ticket please follow THIS LINK.
PDA or to give its full title Pathological Demand Avoidance is a presentation of autism to find out more click the like to the PDA society’s website HERE.