Lessons from the demand avoidant children in my life and therapy practice
Last week was #PDAActionWeek2025. I missed it with this post, but not complying with the rules feels appropriate!
I first came across PDA five years ago. Like many parents when I heard about PDA I had a ‘light-bulb’ moment. Something that finally explained what was going on with my child.
(If you aren’t familiar with PDA it stands for Pathologic Demand Avoidance although some people prefer the term Pervasive Drive for Autonomy. It’s a profile of autism where the person has an intense need for autonomy. Any perceived loss of control can trigger their threat response. PDA individuals struggle with internal and external demands)1.
Since that light-bulb moment I’ve also focused my independent occupational therapy practice on supporting demand avoidant children and their families. I’ve learnt so much. Here are some of the top lessons some of them which were learnt the hard way….
ONE. My kids and the kids I work with push back against convention. Traditional parenting doesn’t work. Nor does traditional therapy approaches. I’ve had to question everything I know and have been taught. I’ve thrown out the holy grail of parenting – being consistent. This has meant getting rid of reward charts and many expectations of how my children should behave. As an OT I’ve moved from doing formal assessments to being able to assess a child whilst at a bowling alley or whilst holding their chicken. (Both true examples). I’ve also ditched visual timetables!
TWO. PDA kids won’t be fixed. And nor should they. We, the adults need to change the environment around them and the activities and demands.
THREE. PDAers, when they are not masking, act and live independently. They won’t give in easily on what they believe to be true and right. And I’ve learnt to do the same. To become that difficult and ‘awkward’ therapist who speaks up and challenges.
FOUR. Although I enjoyed school as a child, I’ve learnt that for many kids, Emotional Based School Avoidance2) is often self preservation. I’ve seen so many children nearly broken by the UK education system who finally can take no more and refuse to go, or become too burnt out to be able to attend. In fact, in a survey of PDA parents, 85% of children had experienced EBSA.
FIVE. I no longer believe that ‘school is best for all children’. Many PDA kids thrive learning out of school, learning autonomously through unschooling3.
SIX. I now understand that just because a child has the physical skills to do something doesn’t mean that they can. For example, My 9 year old is physically able of getting himself dressed, but 99% of the time he needs me to do it. It’s not lazy parenting. It’s a way to reduce the demands of something he finds already finds stressful from a sensory point of view.
SEVEN. I now realise how many demands children face. In my book ‘Inclusive PE for SEND Children’ I list the physical, sensory, cognitive, communication, socials and emotional demands of a game of dodgeball – there are over 24 demands in a seemingly ‘simple’ game and over 23 demands in getting changed for PE.
EIGHT. Consent is important. So often in our society we minimise the rights of children. I’ve learnt to ask permission, a lot. Asking before I join in play or draw anything. Just the week I was reminded again of the importance of choice and consent from a PDA client. She was showing me her hamster and asked if I wanted to hold it. I reached out to pick it up and she stopped me saying, ‘no, put your hand out and he can go to you if he wants to’. I was suitably impressed and chastised at her concern for her hamster’s autonomy.
NINE. Helping children to self advocate is vital. They need to be able to say no and say what they need. I’m proud my son can ask people to eat out of his room, or ask professionals to leave. I work with my clients to help them express their needs.
Living and working with PDA children is at times infuriating, challenging and enlightening. The highs are high and the lows are low. I’ve learnt to expect the unexpected and to take their lead. I hope what I’ve shared helps you.
- For more on PDA see the PDA Society’s website – https://www.pdasociety.org.uk/what-is-pda/ ↩︎
- EBSA is when a child is either unable to attend school, or finds it very difficult to go to school, due to emotional distress. Previously referred to as school refusal, the term Emotional Based School Avoidance recognises that students aren’t refusing to go to school because they don’t want to go, but because they are overwhelmed with anxiety. In other words, EBSA is not due to defiance, instead it indicates that a child is struggling significantly and needs help. ↩︎
- For more on unschooling read Naomi Fisher’s book – “Changing Our Minds: How Children can take Control of their Own Learning,” ↩︎