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advice on masking and burnout in school what was your experience?

StillLearning16

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. 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

  • My autobiographical memory isn't great, sorry. 

    What I do remember about school that helped me was that me and my small group of friends were given our own room to hang out in at break and lunch which meant we didn't have to mix with the general school population.

    I wish I could give you more and I wish I remembered more. But in a way I am glad that I don't as I was really depressed as a teenager and went through lots of counselling so things can't have gern that great.  

    I am so sorry I can't be more helpful. 

    I feel about doing the same for my son. I am a teacher at his school and I see a lot that the school does wrong and would love to share with them how to help him

    He goes to secondary in September and I am terrified.  

  • in reply to Magnolia1

    Hi thank you so much for being willing to share your thoughts. Yes, I imagine reliving those experiences would be very hard. My daughter is certainly very reluctant to talk about any experiences from her past. There have been so many, she tries so very, very hard but just gets knocked down time and again. I wish that the world and the education system could simply be a little bit more accommodating, gentler and able to adapt to people's differences. I also recognise what you're saying about school support. my daughter's school are really lovely - kind, pro-active - but they simple do not have skilled knowledge or understanding about the complexities of my daughter's situation. I wish that you had experienced a better time at school yourself, and I also wish that you didn't have to face this fear on behalf of your son. 

    Just one thought about your school - our consultant advised us that often schools think they have  sound knowledge of autism when in fact that are barely scratching the surface. She mentioned a school in Surrey, Limpsfield Grange (I may have spelt that wrong) who offer excellent provision for autism and run an outreach programme to share that expertise with other schools. It may be something for your school's SENCO to be aware of?

    Also, this is probably obvious and I'm sure you're already thinking about it, but I can honestly say (you know this yourself) that secondary is the hardest transition my daughter ever had to make. If I had known then what I know now and had been able to talk to the school even before her very first day there, I think she would have had a very different experience and possibly  much more positive one. But I suppose it does, of course, depend on the level of expertise at the school and whether they are willing to make the effort and also admit that there may be things they don't know.

    Thank you again and good luck for the transition to secondary.

Reply
  • in reply to Magnolia1

    Hi thank you so much for being willing to share your thoughts. Yes, I imagine reliving those experiences would be very hard. My daughter is certainly very reluctant to talk about any experiences from her past. There have been so many, she tries so very, very hard but just gets knocked down time and again. I wish that the world and the education system could simply be a little bit more accommodating, gentler and able to adapt to people's differences. I also recognise what you're saying about school support. my daughter's school are really lovely - kind, pro-active - but they simple do not have skilled knowledge or understanding about the complexities of my daughter's situation. I wish that you had experienced a better time at school yourself, and I also wish that you didn't have to face this fear on behalf of your son. 

    Just one thought about your school - our consultant advised us that often schools think they have  sound knowledge of autism when in fact that are barely scratching the surface. She mentioned a school in Surrey, Limpsfield Grange (I may have spelt that wrong) who offer excellent provision for autism and run an outreach programme to share that expertise with other schools. It may be something for your school's SENCO to be aware of?

    Also, this is probably obvious and I'm sure you're already thinking about it, but I can honestly say (you know this yourself) that secondary is the hardest transition my daughter ever had to make. If I had known then what I know now and had been able to talk to the school even before her very first day there, I think she would have had a very different experience and possibly  much more positive one. But I suppose it does, of course, depend on the level of expertise at the school and whether they are willing to make the effort and also admit that there may be things they don't know.

    Thank you again and good luck for the transition to secondary.

Children
  • in reply to Charlie Timm

    Hi everyone, I would like to take the opportunity to thank each and every one of you. I try to do it individually but I'm struggling to work out where the reply button is on some of the individual replies. I have been overwhelmed by your willingness not only to share your stories but to offer advice, respond to my queries, and really go out of your way to help with understand my daughter's perspective and also advise on support mechanisms etc. I cannot tell you how much it has helped me.

    I can see that for many of you I have asked you to think about a time in your life that was extremely difficult, it's a very personal thing to do and I am so grateful. Of course I won't relay any of your stories outside of this forum, but it may be that as I continue to arm myself with knowledge I am able to maybe cascade some of that knowledge to not just teachers but the people I know in the NT community. I love this open exchange of the different ways in which we think and feel and I am utterly convinced now that those of you who may have experienced ignorance, prejudice or unfair treatment have by and large experienced most of it not through malice, but through NT people simply not understanding. I didn't and I have been living with autism right under my nose for 16 years!

    I can safely say on behalf of the NT community, we think that we know. But we don't. I have learnt more on this forum over the past 5 or 6 days than any other resource has taught me, anywhere, professional or otherwise, in the many years since this all started. Thank you all.

  • in reply to Magnolia1

    All people I know with autistic or otherwise neuro-divergent children in school tell the exact same story. There are efforts made, but they make no difference. From my own experience, the forced daily socializing in complex group dynamics was absolutely draining for me. And my ADHD made it quite hard to focus for more than five minutes. I have no trouble learning and today I'm specialised in a number of subject areas. However, school was really hard on me and it still burdens me to this day. 

  • in reply to StillLearning16

    We have had one staff meeting with someone from Freemantles. It barely scratched the surface.  It was v generic and didn't go into enough depth. 

    Teachers just don't have time to understand it.  They have 32 children and I would say there is at least 1 autistic child in each class. 

    Inclusion just doesn't work for all children.