Society’s perception of special educational needs and disability, and how they affect a child’s education and social life is constantly evolving and advancing. However, one profile which remains less understood is Pathological Demand Avoidance (PDA).
A child or young person with a PDA profile is driven to avoid everyday demands and expectations (including things that they want to do or enjoy) to an extreme extent. This might be something as simple as brushing their teeth or putting on their shoes, for example, though they could also resist ‘bigger’ demands such as homework. Even praise or rewards can feel like demands to some kids. Not surprisingly, these challenges can make home life and schooling very stressful, for parent and careers, but especially for the PDAer themselves, who may not understand or even be aware of the difficulties they’re experiencing.
PDA Has its Own Characteristics
PDA Has its Own Characteristics
PDA is widely understood to be profile of Autism. As with all profiles of autism, PDA is a spectrum and presents differently in different people. According to the National Autistic Society, features of a PDA profile can include –
* Giving excuses or using distraction to avoid everyday demands and expectations
* Experiencing mood fluctuations
* Displaying obsessive behaviour often focusing on other people
* Being sociable but lacking understanding
* Appearing comfortable in role play and pretence
Recognition of a PDA profile is currently inconsistent in the UK, and it can be difficult for PDA young people and their families to get the right help. But growing awareness of the challenges of pathological demand avoidance means that more and more parents are recognising traits in their own children, says Duncan, the father of a twelve-year-old daughter with a PDA profile, and the man behind the UK Autism Spectrum Parents Support Facebook support group.
PDA More Widespread Than Previously Believed
A PDA profile of autism is considered to be a relatively rare however Duncan says he’s seeing it more and more. His Facebook group has over 40,000 members who are parents and carers to autistic and neurodiverse kids, and he says that parents and carers seeing PDA traits is becoming far more frequent.
PDA and the unique traits and challenges it presents, made diagnosis far more complicated for his daughter Duncan says, meaning it took several years for her to obtain the correct diagnosis. She is now known to have ADHD and sensory processing disorder as well as being autistic. With PDA not being diagnosed in his local area, his daughter’s autism diagnosis notes that PDA strategies are required. He admits to feeling frustrated that her PDA profile wasn’t identified earlier.
PDA is a Way of Controlling Anxiety
“Demand avoidance is rooted in anxiety,” he continues. “People aren’t behaving that way to be awkward – it’s a subconscious way of feeling in control. We often don’t realise just how many demands there are in a child’s day. They have to get up, get dressed, go to school, go to this lesson then that one, come home at a certain time, and so on. If you’re neurotypical, you just roll with it, but to someone with a PDA profile, it can be overwhelming.”
Bringing up a child with a PDA profile is challenging, Duncan points out, as parents have to constantly monitor their own behaviour and the words they use so that they don’t put pressure on the young person by mistake. “The classic example is saying, ‘Where shall we put this?’ instead of, ‘Go and tidy your room’,” he says. “Because my daughter is autistic, she needs routine. She’s fastidious about timekeeping but if I set her a timetable, it’s not going to work. If she instigates it, she feels in control.”
Duncan, who lives in Devon but hails from Australia, is a full-time carer for his wife and also has a neurotypical son, aged seven, who is very understanding of his sister’s difficulties. In addition to his family responsibilities, Duncan runs his Facebook group and posts podcasts on various aspects of life with PDA for his YouTube channel.
Important for Parents to Recharge Their Batteries
He’s also an ambassador for the PDA Society which, he says, was tremendously supportive when his daughter was first diagnosed. The charity offers extensive advice on their website for families and professionals.
“Take time for yourself and decompress whenever you can,” he advises other mums and dads. “PDA is, in my opinion, the hardest profile of autism to parent. Go for a walk, meet a friend or ask grandparents to help out if they’re available. You have to be in the best shape possible in order to look after your children.”
Duncan also recommends the book, ‘Understanding Pathological Demand Avoidance Syndrome in Children’ by Fidler, Healy, Christie and Duncan, which is published by Jessica Kingsley Publishers for £13.99.
