Collaborate and thrive: PDA autism and the school-home relationship
Dr Matthew Carlile Uncategorized
I write this as the parent of a child with a PDA autism diagnosis and as a teacher-educator and a researcher into inclusive education of all kinds. My background is as a secondary English teacher, a teacher of autistic young people, and of those involved with school exclusions and the youth criminal justice system. So I have a foot in both camps, and I thought this dual insight might be useful to write about.
Our kid is autistic and has what’s called ‘Pathological Demand Avoidance’ (often more accurately known as ‘Persistent Drive for Autonomy’). Because PDA isn’t an ‘official diagnosis’ yet, he’s been diagnosed with autism with demand-avoidant traits – you can see a full explanation of what this means at https://www.pdasociety.org.uk/what-is-pda-menu/.
PDA kids are, more often than not, out of school by year 6 or 7. However, they often seem to do well at school for the first few years. Our kid’s Year 2 school report depicted some kind of angel – one who was meeting all expectations and was a model child who ‘always does the right thing’, ‘displayed emotional intelligence’ and was ‘a model for the other children in demonstrating learning behaviours and appropriate interactions with adults’. This is not the child we recognised at home! We have a kid who often erupts in panic (this looks like someone who has a hair-trigger temper), is constantly in fight, flight or freeze mode, and struggles to wash, sleep, play, listen to a story, get dressed, or eat.
The reason for this difference is that children with autism, and especially those with PDA, tend to ‘mask’ or ‘camouflage’ their anxiety at school. I asked my kid why he does this, and he said he didn’t want to be told off in front of other children. He doesn’t feel safe showing his real emotions outside the house, or away from the very small group of people he really trusts to hold him in unconditional positive regard. So we get a ‘soda bottle effect’- he holds it inside all day, and then comes home and either explodes in very controlling behaviour (like dominating the TV remote or telling people where they can or can’t sit), screaming, swearing or hitting (fight), hides under the table or sinks deeply into cartoons on his tablet (flight) or lies prone on the sofa for hours, unable to have a conversation and unwilling to go out to the park with his beloved puppy, to visit someone he really likes, or even to go out for ice-cream (freeze). He can sometimes be in flight or freeze mode for days on end. And he needs this time out so that he can manage to go to school. Allowing for all this means that we implement a ‘low demand home’.
The implication of this is that PDA kids can present in very different ways depending on the context. This can cause all sorts of problems, the most common being ‘well – he’s fine with us … so it must be your parenting that’s at fault’. We are on several PDA parent WhatsApp and Facebook groups, and this is by a million miles the most common reaction parents seem to get at school.
One problem with all of this is that years of masking at school can cause kids to lose sight of who they really are. And they can end up so shut down or dysregulated that eventually they just can’t attend any more, resulting in detentions and exclusions for dysregulated behaviour and fines and court cases for non-attendance. Another issue is that because the child is only communicating their true anxiety at home, they are not seen as in need of early intervention at school.
So: what do we ideally need from our kid’s school? I have three other children, all over the age of 18, and have conducted research on school experience with hundreds more, so I know that as we move into the teenage years things are going to look very different. The intensity of PDA is such that we work on each day, week and month as it comes. But for the moment, we are working with the school on the basis that our kid will be far more able to thrive for much longer in a formal educational setting:
With the right sensory experience: he needs regular sensory breaks to get up from his desk and stretch his legs; he needs organised exercise (hopscotch; throwing and catching a ball; balancing) and large motor activities (lifting, squeezing, rolling) to bring his adrenaline down after the high-arousal ‘unstructured exercise’ experience he gets from running about in the playground
With support to negotiate peer relationships, especially in unstructured playtimes: this might look like organised games at playtime; running races, skipping, throwing and catching balls; lunchtime clubs; providing quiet, open-access spaces in the playground like shady dens or spaces for calm activities like painting, building or gardening
With an understanding of what ‘low demand’ can look like in the classroom: this might mean general praise instead of direct praise (this can feel like a big demand to do the same again next time); or a choice of three books, activities, story prompts or maths manipulatives to arrive at the same learning outcome; or opportunities to get a few moments of peace and space, such as being offered the choice to take a document to the school office, or to sit in the quiet reading corner
With good training around the use of language and linguistic processing: all PDA kids are different – and this is really complex (and will be subject of another blog) – but auditory processing issues can mean our kid feels very confused if he’s asked to remember complex details of a story from the day before, or to guess what a character might do next. For a teacher with a number of children with different linguistic processing needs, this might mean always presenting information in two or three modes- for example, spoken, written, and pictorial.
The astute teacher reading this will already know that teaching for inclusivity is just good teaching, really! Good teaching for a kid with PDA autism actually makes learning more accessible for all the kids in the classroom- whether they speak English as an additional language; are living with trauma; are dyslexic or dyspraxic or have ADHD; or are simply growing up and learning how to negotiate a complicated world.
So: if we recognise that early intervention can have life-long benefits – and we need school to implement an inclusive learning experience for our kid, but what they are seeing is some angel child- then what does it take to convince the SENCO or classroom teacher that this early intervention is really warranted?
Collaborative relationships
What might really help is for parents to understand ourselves to be in partnership with our children’s schools, if we are to ensure that they are truly supported to thrive. This requires a collaborative, mutually respectful and co-constructive relationship between home and school.
Building a relationship with school can mean recognising , supporting and valuing our teachers for the incredible work they do. We try to send flowers, or muffins, or sweets, or a fruit basket at least once a term, just to say thank you. We also collect plastic bottle caps and give them to the nursery for model-making. A home-made thank you card goes a long way- teachers so often only hear from parents when things are going wrong, rather than when things are going right. And if you have time, you can also become a school governor, or a member of the PTA, or attend some of the parent drop-ins and just talk and listen to the other parents and school staff: just to get to know people.
For parents, advocating effectively for our children means sharing information in clear ways which make sense for the school context. Schools are complicated places, and teachers are highly trained, busy people. They want to do the best job they can for all the children in their class. We can help them by offering useful information in ways which understand this context. One example is in this blog- we manage to be ‘low demand’ very differently at home; supporting school to implement this approach means giving examples, like those I’ve given above, of how this might look in the classroom. Another strategy is to create an ‘About Me’ page (sometimes called a ‘passport’), which helps the class teacher to understand your child’s needs – feel free to tailor and use this example of an About Me page which we update and share each time our child gets a new teacher.
We can also share resources designed for teachers, like those developed by the PDA Society. We have given copies of books to our school, such as Understanding Pathological Demand Syndrome in Children: a guide for parents, teachers, and other professionals by Christie et al, and Christies’s Collaborative Learning Approaches to learning for Pupils with PDA. And emailing your kid’s school the link to an informative podcast can be a good way to share information about PDA with busy teachers – such as this one from the Association of Child and Adolescent Mental Health, or this beautiful Missing the Mark series.
Last week when I was picking my child up from school, I mentioned to his teacher that we had been given a great sensory circuit model by the Scope Sleep Right programme, which seemed to be having a positive impact. I wondered aloud to her whether there was any space in the school day for the children to all benefit from a sensory circuit to get them ready for sitting down and learning after playtime. And she smiled, and asked me if she could call me next week to talk it through. She said that her hope was to make things a bit easier for our kid to calm down when he returned home after school. I felt so relieved that my legs went a bit shaky. This kind of collaborative, supportive approach seems to be rare among the parents I’ve spoken with. But it’s not impossible. It requires mutual understanding, belief, trust, respect and compassion.