Parenting a child with Pathological Demand Avoidance

As the years have gone by and my experience has grown, I can recognise many other traits in her. Her brain is wired differently, for sure!

I also have two sons, so much of my daughter’s earliest years were spent walking to and from school. This was often quite a struggle. She started off happily enough, but some days she would suddenly stop and refuse to go any further. When playful encouragement and gentle cajoling made no difference, I used a strategy that had worked well with her brothers. Let’s call it the ‘Cheerio, I’ll see you later’ approach. I’d been on a parenting course. I knew what to do. Stop rewarding with attention the behaviour I didn’t want. Refuse to be manipulated by a person a quarter of my size. Keep walking. Surely in a matter of seconds, I’d hear the patter of little feet behind me and a distracting comment about a bird, a flower or what we were having for tea would achieve the desired result.

Oh no… not with this child. I could have ‘walked 500 miles’ and she’d still be sitting there on the same spot, wailing and forlorn. The worst part of this strategy was the frustration welling up in me, because once it failed, I had to walk all the way back to pick her up and then, resentfully, carry her the rest of the way.

Was this an ‘I can’t’ moment or an ‘I won’t’ moment?

At the time I assumed it was an ‘I won’t’ moment. Sometime later she was diagnosed with hypermobility, which can cause joint pain and instability. She certainly excelled at falling over! Perhaps it was an ‘I can’t’ moment? Since she had no language and I had no understanding, it was never going to end well. I still feel guilty about getting it so wrong.

But I didn’t know.

One of the most asked questions at our courses for parents of children with additional needs is: ‘How do I know what is … (insert diagnosis) and what is ‘normal’ misbehaviour?’

I don’t know the answer to that either!

I recently read this: ‘I’m looking for help on how to cope with my son’s PDA. Everything I’m doing currently doesn’t seem to be working. He gets super angry and physically flips out constantly when his needs are not being met, and I’m not sure how I’m even meant to meet them!’

In case you don’t know, PDA stands for Pathological Demand Avoidance (or Persistent Drive for Autonomy) and is a profile of autism or ADHD. According to the PDA Society this is how it impacts on a child:

• Demands feel overwhelming, even small everyday requests can trigger extreme anxiety and avoidance behaviour.
• Traditional discipline raises anxiety: rewards and consequences often fail. Getting something wrong can cause a PDAer to feel a loss of autonomy which can be very triggering and lead to a meltdown.
• Feeling unsafe: PDAers may feel vulnerable and uncomfortable due to overwhelm, anxiety and sensory challenges. This can be worsened by feeling misunderstood or that no one believes you.
• Feeling trapped by rigid rules set by parents and teachers leading to feelings of frustration and loss of control.
• Even from a very young age PDAers show a preference for developing and learning in their own way.
  (PDA Society, ‘What helps? guides, Parenting a PDAer)

What we do know is that PDAers (some psychologists use the term ‘pressure sensitive children’) are generally not being difficult or defiant; they are having an automatic reaction to feeling overwhelmed and out of control. They do much better with low demand parenting.

What is that? You may well ask.

Low demand parenting prioritises anxiety and stress reduction while still maintaining appropriate boundaries, structure and predictability in order to keep anxiety levels down.

Often because we don’t know we mistake ‘I won’t’ for ‘I can’t’. But there are strategies that help, and as is often the case when we improve things for people with additional needs, we improve life for everyone. Let’s be honest – none of us like being told what to do. How much more peaceful might our homes and schools be if we all used declarative language, a communication style that makes statements rather than giving commands or asking questions? Declarative language allows the listener to process information at their own pace without feeling pressured to respond in a particular way.

Here are a few examples:

• Instead of ‘Eat your breakfast’ try ‘Breakfast is ready and, on the table.’
• Instead of ‘put your coat on’ try ‘It’s pretty cold this morning, I’m wondering what might feel cosy?’
• Instead of ‘Let me help you’ try ‘I noticed you seem stuck on your homework.’
• Instead of ‘put your phone away’ try ‘I see your phone is still out.’

To someone who doesn’t know, low demand parenting can look like you are being soft, or allowing the child to ‘get their own way all the time’. A previous generation may have used the term ‘spoilt’. Autistic meltdowns can be mistaken for tantrums. Some may believe that this parenting style is too permissive, but this is not the case. Boundaries still exist but they are applied in a more collaborative, negotiated way.

Coram Family Lives offer the following low demand parenting tips:

• Give choices: Let your child pick between two options to help them feel more in control.
• Make tasks bite-sized: Break things down into small manageable easy steps
• Be flexible: Being flexible is important and things can change at a moment’s notice
• Add fun: Use humour or games to make things more enjoyable.
• Connect first: When your child feels safe and close to you, they’re more likely to listen.
• Celebrate small wins: Praise even little efforts as it boosts confidence and motivation.

What to avoid:

• Too many instructions at once: Keep it simple and express one thing at a time.
• Consequences: Facing consequences for something they cannot help can make neurodivergent children feel even more anxious.
• Making assumptions: Their resistance to instructions or demands may be a sign that they are stressed or overwhelmed.
• Comparing to siblings: Every child is different, making comparisons can feel hurtful.

(Taken from the Coram Family Lives ,’Understanding low demand parenting’, under ‘Parenting neurodivergent and disabled children’.)

Parenting in this way will likely cause those who don’t know to judge and question. But remember, you’re not parenting to win the applause of the masses. You’re parenting in this way because you love your child and want to bring the very best out of them. You have probably learnt the hard way that traditional methods simply bring out the worst and make matters a whole lot more distressing for everyone.

So to conclude: if you see another parent struggling, please be kind. You don’t know what they’re dealing with. What you perceive as an ‘I won’t’ moment may in fact be an ‘I can’t’ moment. If you are that struggling parent, please be kind to yourself – you’ve got enough going on without heaping guilt and shame on yourself. Give yourself grace to grow.

For more information

• The PDA Society PDA Society – Pathological Demand Avoidance
• Care for the Family Time Out for Parents Course: Children with Additional Needs course
• Coram Family Lives- Low demand parenting
• When the Naughty Step Makes Things Worse (Fisher and Fricker)
• The Explosive Child (Ross Greene)
• ‘And Breathe’ (Catherine Cowell and Margaret McGregor) a relationship-based parenting course for parents of children with additional needs. Integrating spirituality and parenting.