PDA: Our journey so far

Notes on PDA gives an insight into the journey she has been on with her daughter, who was diagnosed with PDA at the age of six.

Five years ago, I knew very little about autism and nothing at all about the PDA (Pathological Demand Avoidance) profile.

My husband and I were blindly feeling our way through parenting our then undiagnosed five-year-old daughter. We were desperate to find an answer for why she appeared to always need to be the one in charge of everyone and everything, and to find a way to help her with her daily struggles, because none of the traditional approaches we tried had worked.

Daily challenges

Basic tasks like getting dressed, washing, sleeping and eating were almost impossible, as was starting and finishing anything or leaving anywhere. It was like she hadn’t moved out of the defiant toddler stage, saying “No” to everything we suggested or asked of her but with increasing sophistication. She would negotiate, strike deals and make promises to do it soon, or she’d change the subject with the most detailed role plays and stories or complicated questions.

There were still lots of answers of “No” though, often accompanied by intense emotions and, more frequently as time went on, aggression. It wasn’t just tasks that triggered this; she’d become overwhelmed with emotion when anything went wrong, didn’t go as she wanted or whenever she wasn’t in control of a situation. Tech issues, sudden changes or any uncertainty at all would send her into tears and panic instantly, and if we ever said “no” she’d become extremely upset.

Everything took an incredible amount of effort to achieve – even things she wanted and loved to do. It felt like her natural instinct was either to try to avoid everything she faced or take complete control of it and do it her way. Realising this is what led me to finding information about PDA online. It felt like we had finally found the answer.  

Getting a diagnosis

Six months later (aged six) she was assessed by two independent clinicians, who diagnosed her as autistic with PDA features (now more widely referred to as a PDA profile). We’d considered whether she might be autistic at various times up until this point, but it wasn’t obvious to anyone else (including our health visitor and GP) and she was incredibly imaginative and sociable, which didn’t fit with what we knew or read about autism at the time. Also, whenever we tried to help her with conventional autism support approaches, it made things worse. So, we were left confused about whether autism felt like the right explanation for her difficulties.

Learning about the PDA profile of autism, and the diverse ways in which autism can present and be experienced by individuals, finally made sense of it all and highlighted to us why the conventional approaches didn’t help and, even more importantly, which approaches do help.

We learnt that balancing demands with her capacity for demands at any one time, minimising her anxiety, facilitating her need for control through collaboration and negotiation, and being more flexible and less directive than conventional parenting/autism approaches recommend, are all essential with PDA.

The way we parent and support our child is very different to ‘the norm’. It’s right for our family, though, and we’re seeing real benefits.

Our own mindset is by far the biggest factor in achieving this and it’s something we’re always working on. Learning all we can about PDA and seeing life from a PDA perspective has helped us to pinpoint our child’s individual needs and tailor PDA-friendly support approaches to her personally. It’s also helped us to truly see life from her point of view and appreciate her many amazing qualities – as seen in this video we created.