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Supporting family members and friends who are parenting a child with PDA

Do you know a child or an adult who has the PDA profile of autism? Perhaps you been told that your step-child / grandchild / nephew / niece / friend’s child has PDA and although you may have heard of it, you don’t really know what that means in terms of their everyday experience of life. Maybe you find yourself baffled or even angry at the way you see this “PDA child” being parented? That is absolutely understandable, and I’d love to explain why what you may think you are seeing is not really what is happening and offer some ways to genuinely support the PDA people in your life, their parents/carers and any siblings.


PDA stands for Pathological Demand Avoidance and is best understood as a profile of autism which requires different approaches than those that work for most autistic people. If you’d like to know more about this unusual profile, do have a look at this Express blog post from 2023

https://www.expresscic.org.uk/post/pda-a-profile-of-autism-needing-a-different-approach


What not everyone realises is that when we talk about ‘demands’ we also mean social expectations and it is often when families are unable to meet each other’s social expectations that things become tricky. The simple expectation of a hug for a grandparent may be too much for a PDAer struggling to cope with all the other unspoken demands of a visit. Dinner expectations may come with a whole host of challenges making group dining impossible. Gift giving often comes with an expectation that gifts will be opened with appropriate gratitude followed with a verbal “thank you”. This can be tricky for any autistic person and for a PDAer, it may tip them into one of the brain’s panic reactions: freeze/fight/flight/flop/faun.


While you may be aware that the people you love are struggling, it may be difficult to translate that into making the kind of allowances which will genuinely help to reduce theirdifficulties. Because of the way most of us were brought up and because PDA is so widely misunderstood the reactions you witness may well appear to be bad behaviour or lax parenting. You may baulk at a child who needs to control everything around them, and you may be offended at their direct, sometimes expletive ridden language. The counterintuitive thing about PDA though is that once you stop expecting – and really mean it (and the PDAer believes that you mean it) – often our PDAers are then able to do some of those things that you would have liked them to do in the first place.


At Express we run a support group specifically for parents and carers who have a child with PDA or marked demand avoidance. One of the things we frequently discuss is how difficult it can be for extended family and friends to understand our parenting approaches or to accept that we are doing the right things for our PDA children and their siblings. Points of friction often arise over screen time limits, bedtime routines, difficulties with meals and approaches to education.Expectations of joining in can be so intractable that we may need to decline events rather than suffer the fallout for days or weeks afterwards. Please don’t stop inviting us though, we already feel incredibly isolated. Please just understand that we will need flexibility and understanding and even then we may not make it.


Mostly people like me just want to be believed and not shamed. We have tried all the traditional parenting techniques and they not only failed but they made things worse. The common message from experienced families is inevitably that once we learnt about the experience of being PDA we started to understand that what our PDA children need is a low demand / low expectation environment from everyone in their life while maintaining boundaries of safety.


Please choose curiosity over judgement, challenge your own beliefs about social expectations and start to earn the trust of the PDAer in your life through collaboration, flexibility and understanding. The rewards of earning a PDAer’s trust are immeasurably worthwhile, which is why PDA is sometimes also referred to as Pretty Darned Awesome.

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Steph Curtis
Steph Curtis
2 days ago

Great post, I know many will relate to this!

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Tasha
Tasha
May 09

Thank you for this brilliant blog Helen.

I, like many others find it so difficult to explain the situation to extended family and friends and this will be a really helpful link to share for us all to gain some understanding.... thank you xx

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Here's the hyperlink to my PDA Day post from last year, explaining the PDA profile of autism

https://www.expresscic.org.uk/post/pda-a-profile-of-autism-needing-a-different-approach

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