Imagine that every day the simplest demands make you panic. Not just the demands from other people but the demands that you place on yourself, the things you know you should be doing.
Like getting out of bed. Getting ready for the day. Getting out of the house.
It's not just feeling lethargic. It's the crippling anxiety, the inability to make your body do the movements you know it should be able to…but today it just can't. And what if some days you're not as bad so you manage some things and everyone thinks you are faking it when on other days you are unable to function.
The most important thing to understand about PDA is that it is a "can't" not a "won't".
One of the best videos about Pathological Demand Avoidance is this by a young man called Isaac, who explains what it is like for him. Click here to watch it on Youtube.
Pathological Demand Avoidance (PDA) might just seem like just another 'syndrome' that labels children these days. Certainly, I remember being a little cynical when I first heard about it. But reading the information on the PDA Society website and the research done by Elizabeth Newson I began to see some key characteristics that explained the differences in particular children I worked with. All were diagnosed with Autism, but the usual strategies weren't working and their behaviour was extreme in response to normal demands, even things we knew they liked. Seeing the list of strategies that could be used to support children with PDA, we tried some out and saw that they did indeed reduce the anxiety the child had and enabled them to engage with the activities we had prepared for them. We also found that they responded to less predictability than was usual for our autistic pupils, so every day we were using different strategies.
When you look at the definition to support diagnosis of PDA here, then there are some children who display the characteristics of PDA but without the same developmental history. In that there is some debate as to whether PDA is a suitable diagnosis for every child who displays these demand avoidant behaviours. However, whether it is purely PDA or autism with extreme anxiety, I have found that the strategies are helpful and can make a huge difference. The key seems to be the understanding and skill of the people supporting the child. You have to be calm at all times, flexible but ready to respond to anything, have a sense of humour and be skilled at reading a situation, a mood, an early response and pulling the most suitable strategy 'out of your bag' at a moment's notice. And working with all children to help them understand anxiety cane really helpful in the long term. Here is my blog "8 ways to support autistic pupils manage anxiety".
I do think it would be really useful for all clinicians to be able to diagnose PDA. The problem is that it isn't in the current diagnostic manuals. The National Autistic Society has recognised it as part of the autistic spectrum and some clinicians are diagnosing it. I am coming across more and more children being given the diagnosis and it does help them, their parents and teachers begin to understand that they're not 'doing it on purpose' but that there is a reason and there are things we can do to help that might be quite different from what we've already tried. Especially if the usual autism strategies aren't working. There is a campaign to get PDA officially recognised and you can sign the petition here.
I now know so much more about PDA and have developed my experience as more children that we support are recognised with this condition, often because we have brought it to the attention of parents and teachers. I can provide a training day on PDA for your school or service. We will be putting on an open course here in Lancashire after Easter. I've run this a number of times recently and it's always a valuable day of learning together. We explore anxiety and its effects and look at the core characteristics of PDA and how to recognise them. We then look at the strategies suggested, discuss case studies and our own experiences and build a profile of the child that you know so you have a plan to take away with you. If you'd like this training at your school, college, service, parents group or charity, please get in touch by clicking here.
Get teacher resources, including the mind map above from the PDA Society website.
Steph's Two Girls blog is a lovely blog from a parent of two girls with PDA. She shares stories from other families and lots of good advice.
PDA Parenting blog is another good blog full of stories and resources that support parents.