autism, masking and burnout in school

Hi there, I have just joined this community as the mum of the most WONDERFUL 16 year old girl who is only now heading for an autism diagnosis which is all but confirmed on paper.

I hope it's OK that I am posting this on more than one of the forum groups as I'm still finding my way around.

She has had a terrible time and we are only just coming to understand why. I am keen to turn to the autistic community as there is so much I need to learn, so you will probably get frequent threads from me. But for today, my topic is school.

I'm guessing my daughter's story is familiar to many of you. She is highly intelligent but they are discovering that she has considerably physical difficulties with things like motor skills and she struggles with social skills, dealing with complex social situations, etc etc. She also has a very complex sensory profile which is currently being assessed.

Long story short, she struggled a bit in infants and junior, then she went to a secondary grammar, threw herself into it at a million miles an hour, took part in everything, tried really hard to make friends and did for a short time, then she what I have until recently called a breakdown (I have now learnt this is more accurately termed autistic burnout) had to take considerable time off and things have never been the same for her. She finds the school environment incredibly difficult to cope with. She becomes unbearably anxious. She is exhausted at the end of every day. She has no friends and none of the other kids engage with her socially. But she still does well academically. The most frustrating thing is that she does much better academically learning remotely. She has loved lockdown. If it were two years ago I would consider changing her path, but she is just coming up to GCSEs and she has a deep passion for learning and a career path for which she needs those grades so I feel like taking her out now would just make her feel that the past 4 years of battling have been a waste of time.

The school are actually incredibly kind and supportive, but I believe their knowledge only goes so far. They think that because she manages to go in and do her lessons and stuff that she is "resilient" in school. I now understand that she is absolutely expert at masking (sorry, I know that term is not considered ideal but it's the only one I have) and at home I can see the damage it is causing her - burnouts, meltdowns, shutdowns etc. School has already confirmed there will be no option for her to continue learning remotely when they go back in and she would be heartbroken to lose access to some of her teachers. I can only think that my best tactic is to try and educate the school on what life is really like for an autistic person from a sensory and social perspective as I think that would help them to try and put some things in place that might enable her to just about get through it. And then we can take stock armed with the knowledge we now have.

So, my question is, would anybody on here be willing to share with me your experience on how you found attending school? I do ask her but she finds it hard to explain and much easier to say yes or no if I ask her specific questions - but often I don't know what I should be looking for. I thought that perhaps if I could gather a few real life experiences (anonymously, of course) that describes how it really feels to be an autistic person in an NT environment, it may help the school to step inside her head and see hw intolerable school is, and we may be able to find ways to mitigate that.

I have found a number of articles but I was hopeful that some of you might feel kind enough to be willing to share your stories so that both myself and the school can understand her perspective - or at least know the right questions to ask.

Also, if anyone has any advice at all as to how I can support my daughter I would welcome it. For so many years I didn't see what was right under my nose and as a result most of my parenting has been completely misguided. Now that I'm starting to realise what's happening I desperately want to put that right, show her that she is loved and accepted, help to make her environment as easy as I can, and support her in becoming the absolutely awesome young woman I know she has the potential to be.

Sorry for the long post, I'm new to all this so still learning what's acceptable to this community.

Thank you xx

Parents

Dan over 4 years ago

Hi there.

I'm loath to give too much advice as everyone is different and my experience may be very different to other peoples, but as a recently diagnosed autistic teacher in a secondary school, I guess I have some experiences that might help. Because of Covid, I've had to move around the school instead of being based in my normal classroom and this has been quite the learning experience.

My main takeaway has been just how chaotic it can be. Mine is a very large school (2500+ students), so I have found the act of moving around the school all day every day particularly draining. The crowds are not only noisy, but visually quite intense, not to mention the close proximity and... unique... smells you find in a building full of teenagers. I've also noticed the odd ways that different classrooms can affect me - for example, I've found some of the bright, complex wall displays some teachers have put up to be incredibly distracting. My eyes are continuously drawn to them and I'm much more tired after an hour in those classrooms than I am elsewhere and that isn't something I've ever considered before. Some departments also just smell odd (I'm looking at you Science and Technology) and for me that is very distracting. An hour in those rooms can be a real test of stamina while concentrating on delivering a lesson.

Not having a consistent base to retreat to (as my classroom is often in use by other staff) has also been tricky. I hadn't realised how much I valued being able to find a quiet space in school for even short amounts of time to refresh my batteries.

This is on top of the usual annoyances you find in any school - harsh fluorescent lighting, being in close proximity to loud, distracting people, the whine of air-conditioning, the tapping of pens, the screech of chair on floor... Over the course of the day, it can all add up.

In terms of what you and the school can do? Passes to leave lessons 5 minutes early to avoid the crowds can help. The ability to take 5 minutes out in the middle of lessons to decompress if things get too intense are also pretty common. Having a designated room or quiet space that is available at break and lunchtimes is also relatively easy to set up in most schools (although trickier with Covid). Being able to pick a spot to sit in a classroom - for me it was always a back corner, for others it is at the front to avoid seeing the movement of the other students. There are probably more that might come to me as I think about it more.

I am not sure how much that helps! As I say, your daughters experiences and sensitivities could be very different to mine.
StillLearning16 over 4 years ago in reply to Dan

Hi @Dan thank you so much for taking the time to give me this reply. Having the perspective of somebody who is both autistic and a teacher is really interesting and helpful and gives me a lot of food for thought. The measures you have suggested are all already in place, but they really just don't seem to help her overcome her phobic anxiety around school at all. She had to do this for many years without any support (as we didn't realise what was happening) so I wonder if perhaps it's just so traumatic and engrained that she might never be able to cope in that environment and I should be seeking a different one moving forwards.

The school have very clearly said there is "no option" to teach one girl remotely when the rest are back in school, but I can't help wondering....they must have to do that sometimes, surely? For a child in hospital, a child at home who has broken their leg, or(as my daughter pointed out) a child who is having to isolate during Covid? I think I need to be brave and insist that we consider it further even though they have told me it's impossible. Oh and when I say child, I keep having to remind myself that she is not one any more! I should, of course, have said young woman. Thank you again for your advice and sharing your perspective.

Reply

StillLearning16 over 4 years ago in reply to Dan

Hi @Dan thank you so much for taking the time to give me this reply. Having the perspective of somebody who is both autistic and a teacher is really interesting and helpful and gives me a lot of food for thought. The measures you have suggested are all already in place, but they really just don't seem to help her overcome her phobic anxiety around school at all. She had to do this for many years without any support (as we didn't realise what was happening) so I wonder if perhaps it's just so traumatic and engrained that she might never be able to cope in that environment and I should be seeking a different one moving forwards.

The school have very clearly said there is "no option" to teach one girl remotely when the rest are back in school, but I can't help wondering....they must have to do that sometimes, surely? For a child in hospital, a child at home who has broken their leg, or(as my daughter pointed out) a child who is having to isolate during Covid? I think I need to be brave and insist that we consider it further even though they have told me it's impossible. Oh and when I say child, I keep having to remind myself that she is not one any more! I should, of course, have said young woman. Thank you again for your advice and sharing your perspective.

Children

Dan over 4 years ago in reply to StillLearning16

No worries.

I can see the argument about the traumatic environment. When I was at school, I always used to avoid the dining hall because of the noise/crowds, but also because the smell was always overwhelming. As a teacher, I have occasionally had break duties in dining halls which I found particularly tough and now I definitely feel a sense of panic whenever I have to go anywhere near one.

For the remote teaching, that is really tricky, because I can see how it would be a perfect solution, but can also see all the issues with it. Before Covid, I'd never heard of kids being taught remotely via video at any school I'd been at - it was all done by sending work home, or possibly in extreme cases, for students with long term illnesses/injuries, liaising with 1-to-1 tutors to deliver the work the teachers set. Students isolating for Covid has changed things a little - I do know teachers at other schools that have tried "hybrid" teaching with mixed success.

This will vary greatly for different schools and the quality of their IT systems, but the main issues though are things like placement of camera and mic, which are usually built into the teachers PC (and usually not great quality either!). Since we are usually not able to be at or near the desk during a lesson and will be moving around the room, it means that often the remote students can't hear what is being said, or the mic picks up on other students in the room instead. Same with the positioning of the camera. There are all sorts of privacy issues with having students in the room visible on a camera that is being streamed to the internet and the cameras themselves are almost never in a position to be able to see a whiteboard properly either, so remote students can miss out on quite a lot of the fine detail in a lesson. The image conjured up is of a nice clear video feed of a teacher stood at the front delivering a clear, concise lesson, whereas the reality is often grainy video of a wall from the corner of a room with a distant hard to hear voice explaining a topic.

I wouldn't say it is impossible, but having spoken to people who've done it, it is far, far from ideal and I can see why the school would be reluctant to try. Like I say though, different schools might have had better success with it.

A lot of schools have relied on simply pre-recording sections of lessons for remote students and then maybe having a "clinic" type session at some point where those students can remotely talk to the teacher and ask questions.