Jo Hughes is the author of Womaning Wisely. She wrote this post with and about her autistic daughter about school, masking and attendance from a parent and child perspective.
My daughter is autistic. We found out 2.5 years ago, when she was 81. I have learnt so much from knowing her. She has changed my perspective on the world, and I sometimes weave that insight into my writing. But I always hesitate to talk about her, because her story is not mine to tell. However, this post was written with her and, a section of it, by her. It’s only a slither of an autistic experience, but it’s one we wanted to share.
This month, the UK Government launched a marketing campaign called ‘Moments Matter, Attendance Counts’. It’s part of £15 million push to improve school attendance. The toolkit for schools includes four posters encouraging parents to send kids to school when they have a runny nose, a stomach ache or are worried.
As the parent of an autistic girl, I find this one particularly problematic.
This poster really bothers me because autistic people, particularly autistic girls, are prone to masking. This means that how they appear to be feeling on the outside may not accurately resemble how they are feeling on the inside. So when I see the girl in this picture smiling, I no longer assume that means she is feeling happy.
Autistic girls and masking
Our understanding of autism is rooted in the typical male presentation of autism. This means that autistic people who do not fit that profile have been – and still are – overlooked. We are starting to do a better job of recognising that autism can look different in different people, but there is still a long way to go.
Before my daughter was assessed, we were seeing a persistent and gradual decline in her well-being at home. She was teary and exhausted every evening. She was very reluctant to go to school every morning. She found it incredibly hard to separate from us in the playground. However, when we spoke to her teachers they were surprised and baffled. We don’t see that at school, she seems completely fine.
I discovered the Autistic Girls Network on Facebook. They do an amazing job of providing information and support. The day I saw this infographic was a game-changer.
This is my daughter. Seeing it in this way, knowing that it was a thing, was really powerful. It was the key to unlocking a door we weren’t sure was there. It has led us all on a journey of discovery and understanding.
When I showed my daughter the Government advert, her immediate reaction was much the same as mine. She was very ready and willing to share the perspective they seem to be missing.
The voice of an autistic 11-year old
Hi, my name is Megan and I’m in Yr 6. I am autistic. I wanted to tell you about my experience with school. School isn’t an easy thing for me. Often I have lots of fun. Unfortunately, there are always days that are hard.
On those days, I can get really stressed about what is to come. If there is some change in the day, it can cause lots of worry. Sometimes, I do something called ‘masking’. Masking is something that comes naturally when I’m worried; I don’t choose to do it. When someone is masking – it often occurs in autistic people, but not every autistic person – they cover up how they’re really feeling. I might feel very stressed about something but don’t show it. This can make it hard for someone else to support me: they don’t know I’m stressed.
At school, I hold all my panicky feelings in. Even if I know I am stressed, I don’t always tell someone.
At my school, I have a ‘blue card’. They are my exit cards, for when I’m feeling panicked. Oftenly, I struggle to use them. When I do, it is not always easy. I worry about lots of things, so it is hard to always pinpoint an emotion on something, which can make it hard to explain my feelings.
After school, when I go home, all my emotions flood out, causing me to feel really tired and worried. It also makes it harder to go into school the next day, which just carries on the stress cycle.
Occasionally, I need to take a break from school. This means I can reset, get full of positive energy and enjoy school. Sometimes, everyone needs a break. If you get so stressed, it is not going to help you. When I’m worried, I find it harder to concentrate, so a break lets me focus more.
Sometimes, a break from school is exactly what I need; I just wish more people understood that.
The voice of an autistic adult
She writes openly about her life experiences as an adult-diagnosed autistic person. I’m very grateful to her – and others like her – for sharing their perspectives, as they help me understand. Recently Louise shared her thoughts on neurodivergent wellbeing and published this model.
Here, she is explaining that when autistic people don’t look after themselves sufficiently they become dysregulated. This means they have to use more energy to process the world around them, leaving less capacity to do the things they want or need to do. This fits with what Megan is saying; ‘When I’m worried, I find it harder to concentrate’.
Louise’s model shows this can be a downward spiral to burnout. The place to interrupt the spiral, she says, is self-care. ‘The more we look after ourselves, the more regulated we become.’ I can see how that might mean stepping out of normal life for a time. Consciously recharging your batteries (as I wrote about just recently) instead of just pushing through.
The voice of a neurotypical parent
(That’s me btw). I can’t really draw on my own life experiences here. They aren’t relevant. I have to keep listening and learning and listening some more. It’s much harder work to do that than parent a child who follows the path you walked. I know, because I have those too. But that is my job as a mother. To be the parent each child needs me to be.
I have a very articulate child who is clear in her understanding that school demands a lot – sometimes too much – from her. I hear loud and clear the voices of adults who have walked her path. And I have the Department for Education telling me that I should send my daughter to school, even if she is ‘worried’. That it’s a temporary feeling and she will be smiling later, which obviously means she is fine.
So given all that, who is going to come out top when, on a nondescript weekday morning, my daughter is crying and telling me she ‘just can’t do it today’?
I think we all know the answer to that one….