04/25/2024
What an amazing perspective on PANS. Great read.
I remember it very very well. Monday morning, day 4 of year 4. Recently turned 8. Sir O would not budge from the stairs to walk to school. I mean clinging to the bannister post, digging in his heels. Not budging. What on earth was happening?
Perhaps it’s helpful to start by looking at diagnosing patterns to understand this. There are children where the autistic traits are very clearly present in their early years, and these children, boys or girls tend to be diagnosed by age 3.
After this, experience has shown me that in the UK, boys tend to be diagnosed before girls. For boys it appears to be around age 8 and for girls, age 12/13 (though sometimes missed at this point until 16/17). There are particular activities happening at these ages that Dr Naomi Fisher calls cliff points, and it’s where our children fall off the cliff, so to speak, i.e. everything's fine fine fine, until it’s not. If you’ve not come across Naomi Fisher, she is an incredible neuro affirming educational psychologist in the UK who is very well worth looking at on social media, or https://substack.com/
But is everything fine before that point, or have we just got used to what our ‘normal’ is in our family? Perhaps there are sensory issues, anxiety, meltdowns after school, aggression towards parents or siblings, difficulty taking turns, taking things literally, picky eating, difficulty getting to sleep or staying asleep. Perhaps we have chosen to not do as many after school activities as other families do, or say no to some parties or family events, essentially managing the environment in which our child is growing in. I didn’t realise that it wasn’t ‘normal’ to be within ear shot of a play date at age 8 to step in when it started going wrong. Things like this that we may have automatically starting doing.
And this is the tricky thing… all of those things can be seen as age appropriate as individual items, it’s when you look at the bigger picture that you realise ,clumped together, they indicate a neuro difference. I find it quite irritating when I’m told ‘but all boys do that’, ‘My daughter does the same thing after school’, ‘my son also complains about doing chores’. It is not the same when you take the whole 24hours into account
So what’s happening at those cliff points?
- Often it is when the academic demand ramps up, that our children can not keep it all together. They’ve been working at full capacity to manage their sensory system at school, the social dynamics at play time and now you add on the cognitive demand along with longer periods of sitting and writing. My son described year 4 as being in jail chained to my desk having to write all day.
- For girls in the UK, age 11/12 is when they transition to secondary school and often take public transport to school. The social dynamics become far more complicated, and their ability to mask starts to fail. Girls are socially motivated, and learn at a very young age how to fit in and the social scripts required to get through primary school with perhaps just a few falters. But this is now a whole different ball game
- For the 16/17 year old girls, the pressure of GCSE’s hits. The narrative is that unless you do well you will not be successful in life. The emotional stress is the breaking point.
All of these cliff points produce huge amounts of anxiety for our children. This may be internalised or externalised.
I am still getting to grips with the South African patterns, but I suspect starting school later and the environmental factors of the country (space, climate etc) provide scaffolding for the children and so the cliff points may occur later. The academic demand increases in grade 4 as children transition to Intermediate phase, but then they are already 9 turning 10 and secondary/high school follows at 13 turning 14.
The take home point: your child doesn’t suddenly become autistic it just seems that way. Autism is a neurobiology that is present from birth. What changes is their ability to manage in the neurotypical world without the accommodation and understanding that they need for every day living.
