Our child had struggled to transition from being at home with me full-time to her starting her two days of nursery school placement just before her third birthday. We knew she was a serious and thoughtful baby but she needed one nursery teacher close by most of the time and found it hard engage when they weren’t there. The same nursery teacher mentioned this at parents evening but we thought she was just shy. 

Primary school carried on the same trajectory with distressing mornings at drop off and overwrought afternoons, followed by meltdowns at pickup. Most mornings our child was given a separate room to try and transition and this usually involved the same member of staff holding them so that I could leave.

We went to our GP worried that the ‘temper tantrums’ were still prevalent at six years old, she couldn’t settle at night and school was upsetting for all of us. She was diagnosed within a year as autistic and we thought this would give her more support at school but I can’t remember much changing. We to move her to a new school around the same time as the diagnosis and while it worked as a brief re set things soon became trickier again.

While our child had engaged in lessons previously she now began to remove herself from class to find her old teaching assistant, often spending large periods alone outside in the corridor and doing less and less work. School had always maintained  ‘she was fine in school’ (once I, that anxious mother had left) but this I now know was our daughter masking. This is prevalent in many autistic children who will ‘appear fine’ but for our child, after many years the mask was dropping. 

Our child was struggling more and more at home and now this was showing in school too. This is when we had more meetings and our child became the strange enigma of a child who couldn’t be supported ‘like the other autistic children’ she refused or rebuked Lego Club, A Visual Timetable, An Egg Timer. So school and the professionals were at a loss, they had done their bit so…?

It was at this time that I went to a book launch about girls and autism and heard Ruth Fidler’s Girls Who Can’t Help, Won’t. She talked about a presentation of autism called known as pathological demand avoidance (PDA). This is where an autistic child will seemingly refuse and rebuke even the most everyday of demands – teeth brushing, getting dressed, eating. This is because they will have such extreme anxiety that they will need to feel in control to feel safe. They will become overloaded easily- leading to meltdowns and/or shutdowns. And much like a traumatised child they will have a small window of tolerance.

And this is why parents who find out about PDA talk about a ‘light bulb moment’ because after years of flailing around, we find out that yes, our children are autistic- with sensory issues but they are also struggling with anxiety that is so crippling that it prevents them being able to do even activities they seemingly enjoy.

They will often mask: appear sociable but struggle with the demands of school. So parents will report that at home behaviour is challenging and often school will say that they are fine. In our daughters case, she would often appear blank faced which to her teachers this meant she was calm but I knew she was immobilised by her anxiety. 

What children with PDA will need most is relationships, they will seek out a safe person to co-regulate from. They will also need low demand, holistic, bespoke, flexible responses to reduce the anxiety. Autonomy and freedom are what a child with PDA will need to feel safe.

All the while we will be required to constant flex; what worked one-day may not work again the next. We have to speak in new ways so that our language is indirect and therefore seemingly demand free. We will have to share the demand, ‘shall we…?’ We will need to throw all our parental and societal norms and expectations in the bin because our children will need a completely different approach and this takes time. This will need connection and empathy at the forefront and us as the adults to relearn everything we thought we knew as a parent.

I am a carer now, at home full time as school and the demands were never overcome or trained out of my daughter, unfortunately they eventually broke her. She became too unwell to attend anymore.

PDA Society figures reveals that 70% of children with PDA are not in education.  And while this has come with enormous challenges: most from the professionals and local authority who cannot believe that school is not what works for every child. It has allowed us to do what our child needs to thrive and to feel safe.

It has taught me to be calmer, funnier, and kinder everyday because this is a child with a high level of need (you just can’t always see it) and it has given me the time to connect again with my child that was lost for so many years when she’s surviving in school.

PDA is complex, particularly when working within very restrictive perimeters such as education but when you are able to really make those changes your child needs, to adapt and change as a parent you will see that anxiety that need for control reduce. That’s where you build up from and you start again and it will probably look very different to anything you perceived or imagine for your family, but that’s okay. Because you are all a lot happier now, if not a little more tired.

Eliza Fricker runs Missing the Mark. Her book The Family Experience of PDA published by Jessica Kingsley Publishers is out on 18th November 2021.