For this guest post I’m delighted to feature Steph Curtis who writes the blog: Steph’s Two Girls. Here Steph tells us her story of finding out that her daughter has Pathological Demand Avoidance, a form of autism, and how best to cope with day-to-day life.
Hi, I’m Steph, and I’d love to tell you a little bit about Pathological Demand Avoidance (PDA), which is a type of autism. In a nutshell, children who have this condition experience extremely high levels of anxiety and they struggle to cope with even basic everyday demands.
Our youngest girl was diagnosed with autism at the age of 2 and that day I began my blog: www.stephstwogirls.co.uk
Many parents haven’t heard or learnt anything about autism unless it has crossed their path in some way before children. Although there are many more articles and TV programmes about autism these days, they are still not reaching everyone. Those who have heard of autism or who watch these programmes often end up with a fixed idea of what autism means; the stereotypical ideas such as genius ability, lack of social skills and inability to communicate form the basis of opinion, it seems.
Pathological Demand Avoidance is a whole different ballgame though. Whilst it is considered a type of autism, some of the characteristics are very different to those previously identified for those with classic autism or Aspergers Syndrome. Children with PDA are often said to have great imaginations and to be comfortable with role play, for example. They may use social strategies when trying to avoid demands being placed on them – one example is when asked to go somewhere the child might say ‘I can’t because my legs aren’t working any more’. Distracting and talking about anything other than the question is another example. They can appear sociable on the surface and engage in conversation, but may lack depth in their understanding.
Children with PDA are likely to suffer from extreme anxiety and this can cause them great difficulty in following even simple demands. They have a need to remain in control in order to stay calm, and this may lead to refusal of everyday actions such as leaving the house, even if it would be to partake in an activity which they would enjoy. The demands become too much, and if forced to carry on a meltdown is likely.
Meltdowns are a way of communicating that things have become too much; some children may run, some may become aggressive, others may refuse and avoid. Our girl curls into a mushroom shape; as a parent to a child with PDA, you learn very quickly that it is almost impossible to persuade or force them to do anything at this point. Instead, we cope by using PDA specific strategies such as using indirect language, a lot of humour to de-escalate tense situations, and a lot of planning ahead to ensure that conditions will be as agreeable as possible.
Of course many children resist doing things they are not keen on, so how do you know if your child is autistic or has PDA? It’s the ongoing extreme anxiety and reactions which tend to be an indicator – I’ve written much more in my post ‘Does my child have Pathological Demand Avoidance?‘ Using the PDA strategies is exhausting and not something a parent would choose to do if you were able to use typical parenting strategies. Our eldest girl responds well to praise, rewards and consequences – but we quickly learned that none of these were helpful for our youngest. Society conditions us to believe that these are the only parenting skills which work, but my goal is to help inform others that there is a different way.
So if you know of a family who are struggling with their child’s behaviour, please do suggest they read up on Pathological Demand Avoidance. The PDA Society website is the best place to start and I’m always open to any questions. Thanks for reading!