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Wednesday, 29 April 2015

This is our PDA story (week 12)

Welcome to week 12 of 'This is our PDA story'. This series is all about bringing to light the many challenges of living with PDA (Pathological Demand Avoidance), from those who experience it daily.

PDA is one type of Autism Spectrum Disorder, ASD (now also called Autism Spectrum Condition, ASC). It may seem to be a 'relatively' new diagnosis, but it was actually first realised in the 1980s, over 30 years ago. There's more information about the history of PDA on the PDA Society's website. 


The following words are from a young man who was diagnosed with PDA at the age of 18. As mum to a child with PDA, these words give me great hope for the future.

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At 14 I was diagnosed with Asperger's syndrome, this was a huge relief to my family but something didn't quite sit right. My diagnoses was updated to PDA at 18, by the same woman may I add, she just wasn't too familiar with PDA at the time I was diagnosed.

Prior to my diagnoses I was lucky enough to come across a woman who runs a home from home schooling system from her house, incidentally, the majority of her students display signs of PDA. Her philosophy is "Freedom to learn" What a fantastic little proverb for someone with PDA! 
The emphasis was mainly on enabling us to cope with life. The freedom to learn reduced the anxiety enough to clear our minds. Children with PDA are incredibly receptive to indirect messages/commands. Direct forms of engagement can be a great risk with PDA. And if the message is delivered incorrectly it will more often than not be rejected. Being given a range of things to learn was extremely effective for me because I got to figure out for myself what worked and what didn't.

In my experience, homeschooling is the best way for kids with PDA. The current education system simply can't accommodate the intensity a PDA child exhibits. We fall behind not because of weakness, apathy or an academic disinclination. We are laced with anxiety due to the pressure of abiding by a system which we aren't compatible with. The outbursts aren't naughty, it's a survival instinct. It's what we identify ourselves with, constantly on guard, forever frightened. 

Autism only becomes a disorder when it's placed in an environment where freedom is discouraged. I've met many autistic kids, and I would never dream of calling them disabled or "not all there". When they are put in their true elements they flourish, but the opportunity to flourish is as rare as the alternative system we crave for. We're not bad, we're just waiting for the new paradigm to be built, and together, with a resolute and positive approach we can make it happen, as our frustration grows so does our determination, and we can all raise awareness on these matters. The current system is only viewed uncritically because it's existed for so long and many have served from it. 

I'd rather receive the world in it's entirety and pick out the bits I need, over being spoonfed what society wants me to learn. PDA children have an insatiable appetite for knowledge, but when someone intervenes or attempts to commandeer their ship of learning it just delays everything. Some of this stuff sounds bizarre, but PDA is totally irrational in all it's entity. Bizarre problems require bizarre methods. I find that PDA kids go through obsessive stages, where their entire focus is directed towards one area/subject, and they will indefatigably learn all there is to know about that certain thing before moving on to the next. This is such a wonderful process if left alone. This process can be very easily disrupted through school or needless demands at home. It's just the way of the PDA.

I dropped out of Uni last year. Not because I'm a failure, it's because I am PDA! I'm me, I'm gonna be authentic now: The demand is too high. I need freedom to learn!!! 
I teach guitar lessons for an income. But I have dedicated my life to raising awareness on these things we all have to live with.

I help out at the home from home school I used to go to and give occasional talks to parents. 
If it's too demanding and dictatorial I still can't bring myself to do it. The woman simply offers "Harry there are people who would like to talk to you, are you up for it?" And that's fine for me to gauge what's right for me. If she were to organise it and order me to go Id simply sit home and refuse. I'm more aware of my PDA as an adult but it still effects me. I improvise most of what I talk about.

I write a lot, and I'm working towards a book. Though I don't have a full time career, I'm very happy now. And my life has purpose and value when I never thought it would. I have found a way of making my life work for me because I've followed my passion and nothing has come in the way of it. Other PDA kids all have the possibility of living, rewarding, happy and successful lives. All that energy can be channelled.

 I suppose the thing most integral to my progress was turning my vision inwards. I was under the mistaken belief that everyone was accountable/responsible for everything ever! and I think this just came with age and experience. PDA is such a sensitive, fragile and intimidating thing to bear. I find that it's not only parents and teachers who are intimidated by it but the hosts are just as overwhelmed! We have to lug it around after all. Though it is a heavy burden, there's something about having it that's so precious to us, we subconsciously conceal it, no one can touch it, it's ours, so I guess this is why outbursts and meltdowns occur when we feel people are tinkering it or trying to weed it out of us, I speak metaphorically of course! It's just bloody hard to explain sometimes 
So I got to an age where I self monitored religiously, I learned which foods were right for me, and which environments complimented my energy, and which people would be a catalyst to my inner demon.... 
 





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As always, please do leave any comments of support below as they are much appreciated, and really help to let the writer know they are not alone, and not being judged.

For more reading, and different experiences, please check out previous weeks in this series by clicking below:


Week 11


Week 9 

Week 8 

Week 7

Week 6

Week 5

Week 4

Week 3

Week 2

Week 1 


Please do also visit the website for The PDA Society, www.pdasociety.org.uk, where there is much more information, and also www.thepdaresource.com.


Linking up with the lovely Jenny from Let's Talk Mommy for #ShareWithMe.

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