For many parents of neurodivergent children, the school gates represent an invisible boundary. On one side, a child might appear calm, compliant, and for all intents and purposes ‘fine’. School staff and peers see a child who is doing okay throughout the day. If they are not thriving, this is often missed because they appear fine, well behaved and often slip under the radar. On the other side of the gate however, the pressure of a day spent ‘masking’ or hiding just how much they are struggling in order to cope with the demands of the school day, is a building pressure. A pressure that can often, like a shaken coke bottle, lead to an explosive release at home.
In a recent episode of the Nip in the Bud podcast, I meet with Christine Walsh who shares her journey navigating this phenomenon with her two neurodivergent sons. Her story offers an interesting and often illuminating roadmap for both parents and educators on how to move past surface appearance, supposition and oftentimes judgement, toward true acknowledgement of need and support. Here we discuss Christine and her family’s experience.
The myth of the ‘fine’ child
One of the most significant hurdles Christine faced while her son was at primary school was the disconnect between home life and school life. While her son appeared ‘fine’ during the loud alarm bell of one school fire drill, the tiny beep of a low battery in a smoke detector at home would cause a total shutdown.
This is the reality of masking. Many autistic children use their cognitive energy to mimic neurotypical behaviour throughout the school day. To an educator, the child is succeeding. To a parent, that child is a coke bottle that has been shaken all day and is waiting for the safety of home to finally blow its top.
Reframing PDA: From defiance to autonomy
Christine’s youngest son carries a profile of Pathological Demand Avoidance (PDA), a term she reframes as a Persistent Drive for Autonomy.
For a child with PDA, a ‘demand’ even something as simple as ‘put on your shoes’ or ‘hello, how are you?’ can trigger a primitive fight-flight-freeze response. The demand trigger affects the autonomic nervous system and the child reacts in a way that links to their basic need for survival.
Through our conversation, Christine clarifies how it feels for her son when he is asked to do something:
“…a meltdown is actually him…sort of shutting down and he cannot cope with any of the things that are happening around him. And that is real, that comes from a place of survival, him thinking he has to survive in this place where he has no control. “
She goes on to explain the following points about her son’s behaviours really emotively in our discussion during the podcast:
- It isn’t naughtiness: It is a nervous system disability.
- The gun to the head feeling: Christine explains that for a PDA child, a loss of control or a sudden change in routine can feel as life-threatening as having a weapon pointed at them.
- Meltdown vs. tantrum: A tantrum is goal-oriented (wanting a sweet); a meltdown is a complete neurological overload where the child has lost the ability to regulate.
When her son is confronted with a change that he was not expecting, no matter how small, this also acts as a trigger that affects his nervous system. She says:
“He thinks he’s going to die. That’s how extreme it is for a PDA child. Any kind of change is like a gun to their head. They really think this is risking my life…So it’s not just like, oh, come on, let’s get on with it. It’s actually calming the nervous system to be able to react differently to it.”
Practical strategies for home and school
Christine and her family’s journey highlights that when we stop demanding compliance, we can actually start supporting and nurturing. When this is effective, a child such as her son is ready for learning.
Here are the strategies that she learned over time and that helped to change her family’s life:
1. Low-demand communication
Sometimes, the best way to support a child is to say nothing at all. Christine practices ‘silent cycling’ on the way to or from school. By removing the demand of social interaction, her son often feels safe enough to volunteer his thoughts and anxieties on his own terms.
2. The Busy Box
Consistency is often safety for many children. Christine’s son uses a busy box filled with fidget toys and coloring materials. This box follows him from year to year, providing a tether of familiarity in a changing environment. It allows him to have a parallel activity within the lesson, whilst still listening and learning while his hands are occupied, rather than being forced to sit still on a carpet.
The idea of consistency needs to be understood within the frame of the individual child. It cannot be a ‘one size fits all’ approach. Relationships need to be built carefully and communication clear between all involved, in order for an educator or parent and the child to share reciprocally what works. Remember to adapt teaching or how you are parenting the child as they change and grow.
3. Collaborative transition planning
Transitions from nursery to school, or year 2 to year 3, or from Primary to Secondary school are peak anxiety times. Christine advocates for:
- Advance notice: Informing parents of staff absences, staff changes or schedule changes as early as possible.
- Whole-school awareness: Christine believes that it isn’t enough for only the SENDCO and the class teacher to know the specific diagnosis, or unique needs of a child. Lunchtime staff, admin teams and teaching assistants all need to understand what works well, and what could be a trigger for a child. For example, a child ‘eye-rolling’ or ‘growling’ isn’t necessarily rude. For some neurodivergent children this could be a sign of a struggling nervous system.
A call for radical empathy
The most moving part of Christine’s story for me was her reason for seeking a diagnosis: to give her son power.
‘I just wanted him to grow up not thinking that there was anything wrong with him. He’s just different.’
For educators, her message is clear: please listen to the parents, work together collaboratively for the best outcomes for that child. If a parent says a child is struggling, even if at school this is not evident, believe them. If you don’t see it in the classroom, be curious, ask questions and work with the parents or carers to understand a holistic, 360 degree view of the child where you can.
Christine believes that when we work together to lower the pressure, we don’t just ‘manage behviour’ we allow a child to feel safe enough to thrive.
Listen to our conversation with Christine as we discuss her and her children’s journey and their experience of autism, PDA and masking in school on our Nip in the Bud podcast.
Alis Rocca
Education consistent and Podcast producer
