When my son was still in school, we were constantly told "he's fine once he's here in class, we don't see any problem". The implication was always that it was something we were doing at home (or even that we were just overly anxious). However, it was abundantly clear that he was most definitely NOT "fine in school". When trying to get to school he was having panic attacks, running away, hitting and screaming, and we were seeing extremely distressed behaviours almost constantly at home. One day I was so exasperated that I asked my son if he knew why it was that the teachers thought he was fine in school. The answer was pretty heart-breaking.
I recorded it to share with the SENCO (and then other "professionals" who doubted his experience). With his permission I'm sharing our conversation here, to try and highlight the issue of autistic masking, as it has such a profound impact on the well-being of autistic children. For anyone who doesn't know, autistic masking refers to an autistic person feeling they have to hide their real feelings and autistic traits, and even mimic non-autistic behaviour, because they are anxious and afraid.
2018 (aged 8)
Me: I spoke to the SENCO today and she told me that when she walked past your classroom you were fine, looked like you were happy and that you were engaged in the lesson. What can I tell her about how you were actually feeling?
J: Mummy the thing is, that in school you can't throw chairs, or get angry and shout, even though that might be what your body and mind are telling you to do because you feel so awful. You can't do it because then you will miss Golden Time and break time and they are the only things that are ok in school. And you would be sent to see the big gorilla (his headteacher). So you can't tell them or show them that you're not ok. You have to put on your thinking face, and your listening face, and pretend that it's all ok, even though in your head you're screaming.
Me: Oh wow. So what do those faces look like?
J: mimes pulling a thoughtful face, then pretends to look down at paper and write something
Me; Ok, so when you're doing that, are you able to listen to anything that the teacher is saying, or do any of the work?
J; No, because I have to concentrate on pretending.
Within a matter of weeks after this conversation that he was out of school full-time. While it was hugely distressing to hear this as a parent, imagine what it must have been like for him.
On more positive note, I spoke to him more recently about how he feels now and whether he still has to mask. Thanks to having the right support and environment, and therefore feeling safe, his answer is significantly different to the one he gave two years ago.
2021 (aged 10)
Me: Do you remember how we talked about masking in the past, and how you felt you had to pretend to be ok when you were in school?
J: Yes.
Me: I just wondered, if you still have to mask now that you're not in school?
J: No, not really. Sometimes in my sessions with my T (new tutor) as I don't know her so well and can't say so much if something's wrong. But it doesn't feel like it did at school. And I don't really the rest of the time.
Me: Ok, why do you think that is?
J: Because most things are good now. And if they're not good I can say it's not ok and I just won't do it. I had to pretend at school, because they would have taken away the only things that were ok there, like playtime. But now no one can take away the things that matter to me, like you and Dobby.
This last line melts my heart. I'm so happy and grateful that he has come so far and is now a happy boy. But I'm so sad that he ever went through that trauma in the first place. I hope that these conversations will help other people to have a better understanding of autistic masking, especially if their children are not able to explain how they are feeling. As parents we need all the clues we can get about what might be happening for our children. It's vital that we try and see the world from their point of view in order to give them the support and understanding that they need.
Useful resources:
Not Fine in School
This is a parent/carer-led organisation set up in response to the growing number of children and young people who struggle with school attendance.
Interesting article about masking:
The costs of camouflaging autism - https://www.spectrumnews.org/features/deep-dive/costs-camouflaging-autism/