Life changes when you become a parent and even more so when you have a child with special needs. Learning to understand and adapt to their differences can take a lifetime and there are undoubtedly challenging moments along the way.
Possibly one of the trickiest conditions to manage is PDA – pathological demand avoidance. Most health professionals consider it to be a type of autism although some people maintain it should be a diagnosis in its own right. In simple terms, a person with PDA may resist any kind of expectation or request, often to an illogical degree. Although it may appear to be awkward and uncooperative behaviour, experts say it is rooted in extreme anxiety.
In addition, there are other very distinct traits that are associated with the condition that are different from the usual autistic profile. These include higher levels of sociability and imaginative play.
Having a Child with PDA in the Family
Steph Curtis has two teenage daughters, one of whom was diagnosed with PDA as a toddler. As such, she has spent the last fourteen years coming to terms with her daughter Sasha’s needs and finding ways to help her thrive while at the same time cultivating a ‘normal’ family life.
She began by writing a blog called ‘Steph’s Two Girls’ detailing her family’s struggles which attracted a large following and has now completed a book. ‘PDA in the Family – Life After the Lightbulb Moment’ is available to pre-order and will be published in the middle of January 2024 by Jessica Kingsley Publishers for £12.99
“Although PDA was first mentioned in the 1980s, it’s only in the past couple of years that people have begun to talk about it,” Steph explains. “There’s still not a lot of research into it. I always wanted to help other families and the book is a way of reaching people who might not necessarily go online.”
Formal Education too Challenging
Her book covers the years since Sasha’s diagnosis with sections on school, relationships, family and the wider community, anxiety and sensory issues. There is also a chapter written by Steph’s husband, offering a dad’s perspective on PDA.
Now sixteen, Sasha has been mostly educated at home for the last few years as she finds both mainstream and special school environments too challenging. And although she is academically able, sitting exams is also too much pressure for her.
“Maybe one day she will decide to study for formal qualifications but it would have to be of her own accord,” Steph speculates. “She loves gaming and animation and can do amazing things in these areas but she’s taught herself how to do them. As a parent of a child with PDA, you definitely can’t tell them what to do. All you can do is weave suggestions.”
Could your child have PDA?
Steph points out that families wondering whether their child has PDA need to distinguish between demand avoidance – which all humans have to a degree – and PDA. “We all procrastinate to avoid doing things we don’t want to do,” she adds. “And school is one of those things that a lot of children try to avoid. The difference is that PDA stops you being able to do the things you’d like to do as well.”
Another indicator, she says, is that the usual strategies recommended for helping young people with autism – timetables and a structured routine, for example – simply won’t work for a child with PDA.
Positive Developments for a Young Person with PDA
“PDA is a lifelong condition so Sasha will always have these struggles but there have been some improvements as she’s matured,” she continues.
For example, “She understands herself more. She’s also found a group of online friends who also have PDA or autism which gives her a social outlet and makes her happy as she finds people unpredictable in ‘real life’. I think they instinctively understand each other. Playing Dungeons and Dragons online is also a good outlet for her imagination and gives her an opportunity to role play being someone else.”