supporting people with Pathological Demand Avoidance.

Supporting siblings of children with Pathological Demand Avoidance

20th February 2018

In the next article in her series, Caro Greenwood shares her advice for supporting siblings of children with Pathological Demand Avoidance (PDA).

My daughter Matilda, who has a diagnosis of PDA, has two neuro-typical brothers either side of her.

I thought that if I hid Matilda’s difficulties from my boys, then it would give them a more ‘regular’ upbringing. Foolish at best, ignorant at worst.

We are now very open about everything associated with her autism. I’m only sad that it hasn’t always been this way.

Supporting siblings of children with PDA

The hardest part for a brother or sister is that they would see the lack of regular disciplining of their sibling as either favouritism or worse, that they themselves are not loved the same. But we all know that isn’t the case.

So, I thought I’d share the advice I told myself 5 years ago.

Crib sheets

Write age appropriate crib sheets for each sibling. Keep it simple. Point by point, not a mass of words. I am yet to meet a child that wants to sit down and read an essay on anything.

This is what I am working on for my boys.

Title: About My Sister

What’s important: My sister has autism. There are many kinds of autism. My sister has one called PDA. Pathological Demand Avoidance.

It’s a horrible name, but basically it means she finds the world scary and worries about it all of the time she is awake.

What we think of as a regular request, like, ‘we are getting in the car now’. Her brain computes as a challenge, a trick.

She thinks that everyone is trying to trick her all the time. Setting her up so that she might fail, and she is frightened of that most of all.

You get the general idea. Clarity and honesty is the way forward. Don’t hide their sibling’s issues away. Sheltering them from the reality is a mistake. One I made, and one that has not helped either of my boys. All it creates is a divide. An even bigger one than the inevitable one that there is between a neuro-typical child and one with additional needs.

What happens if…?

I am also putting together a ‘What happens if…?’ scenario guide for them.

What happens if Matilda melts down when we are out?

Look for Mummy or Daddy or the adult in charge

What grade is the meltdown?

1 Being she’s just starting to get edgy.

5 Being colossal – we’ll just have to ride this bad boy out!

If the meltdown, is between 1 and 3 (check with Mummy/Daddy/adult to clarify number), can you help?

Are any of the usual distraction tactics you do going to work?

What makes her giggle?

If the meltdown is higher than 3, step away from her. Do not look directly at her.

Let Mummy or Daddy deal with it. Give her as much space as possible.

Don’t worry about it. If other people are staring, try not to worry. But it is ok to sit away, if you prefer. As long as you can see Mummy or Daddy.

Safe, loved and valued


The idea is to create a ring-binder that grows with Matilda and her brothers. You won’t always be able to answer every question your other children have, but always promise to try.

Clearly, the most important part of any parenting task is that the children feel safe, loved and valued.

I am a firm believer that if children feel valued and respected, then this is how they will treat others. But most crucial of all, it is how they will treat themselves.

Caroline, also known as Caro, blogs over at Spikey Mama – take a look. If you haven’t seen Caro’s other column, check out her parent view of PDA.

Want to know more about PDA? Read our Spotlight on PDA and take a look at our feature on The PDA Society, who won a BAPS Award last year for Best Practical Support for Parents. Voting’s open for the second round of 2018’s BAPS, head over and cast your vote!

And, if you’d like to share your story with us, comment below, tweet us @weareMFON, find us on Facebook or email hello@myfamilyourneeds.co.uk.



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Lucinda Maddern

Lovely, will do this for my family 💖

Amy
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Amy

This is such a great idea. Is Matilda also involved in the “what if” section? I’m afraid my son would be devastated if his brothers were working on this about him without including him. Would love to hear more details about your 5 meltdown grades. We live in the US and our doctors and I just heard about PDA for the first time. These are experienced clinicians! It’s just not very well known. We are all convinced that this is the proper diagnosis for my son – at least as far as we are concerned. No actual code for it… Read more »

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