It's amazing how seemingly small things can make such a difference in life.
I'm feeling excited, and positive about the future.
The reason for this may not make sense to some, but let me try and enlighten you.
Awareness of those three little letters, PDA, is growing. Pathological Demand Avoidance is a type of autism which has until now been rarely diagnosed. I don't believe this is because there aren't many cases of it; quite the opposite. I believe there are hundreds and thousands of families around the UK who could benefit from this diagnosis.
It's a relatively 'new' discovery in medical terms; research is only around 30 years old. This partly explains the reticence of healthcare professionals to even talk about it. The other reason for lack of diagnosis is that to the uneducated eye, PDA can present as a child 'just' being 'naughty'. A child who wants their own way and doesn't want to follow the rules of others.
Sigh. Over the past 6 years I have tried to explain how PDA is different, but it's not an easy one to put into words. You could start by reading my 'This is our PDA story' series, where several brave families have tried to put it into words. Or I could maybe offer you the chance to come and live in our household for a while, and then you'd see the difference. If I try and explain it here and now, this post would end up WAY too long.
So back to the small things. For some time, the National Autistic Society did have PDA listed on their website, but as an associated condition. This information has recently been updated and if you visit their webpage 'What is Pathological Demand Avoidance?' you will see that they start off by saying 'PDA is now considered to be part of the autism spectrum'.
Whoop! A small sentence, but a huge step forward. I feel like we're going to the moon! For the largest autism-related organisation in the UK to acknowledge PDA actually brings much needed information and resources to many who were previously unaware. For more information please also visit the PDA Society website.
Then there's the small matter of the Channel 4 television series, 'Born Naughty?'
Uproar over the choice of name for the programme, but let's be honest, if they'd have called it 'Can autism cause bad behaviour?' I don't think quite so many people would have bothered switching on, do you?
I'm still amazed by the number of 'experts' on Twitter giving this opinion on these children featured in the programmes - especially those who don't actually have children themselves. Supernanny anyone?!
Of course I personally don't believe that any children are born naughty. The best guestimate from the NAS is that 700,000 people in the UK, around 1 in 100, have autism. They are born with autism, and I believe a fair number of those have PDA. It's time everybody learnt more about this sometimes hidden disability which can present as challenging behaviour and 'parental issues'. I'm not denying that there are some children who would benefit from a stricter style of parenting, and whose parents have maybe not given them the right boundaries, but they are separate from those born with autism who truly present with PDA.
The spotlight on PDA is so welcome and just the beginning of many more families getting help.
If you've found my blog tonight via the Born Naughty? programme I do hope that you will stick around and read some more posts, ask any questions you like and leave me a comment to say what you thought of the show!
Linking up with the fabulous VeViVos blog and #PoCoLo