• Replies 28 replies
  • Subscribers 90 subscribers
  • Views 10208 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

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

  • I am currently going through the assessment process (F,27 with May/June time as my timeframe to work with after nearly 2 years waiting on the NHS)

    I started off with the extremely geeky stereotype in primary school. I'd be first in line before the bell went, first hand up, first to finish the worksheet ect. I had my year 3 teacher speak to my mum and she thought I should be assessed by a proffessional - my mum being a single parent of 3 and my younger brother having behavioural issues too (I believe he is also on the spectrum.. if I am he certainly is) she felt attacked and embarrassed and dismissed the idea. 

    By the time I was finishing primary school, my maths ability had given me a scholarship to a private school. I had been severely bullied in year 5 and 6 for my behaviour and what I felt was because I was too geeky and loved to be the teachers pet. I clearly remember crying my eyes out and begging my mum not to send me to the special school for being clever and I wanted to go to the normal school with everyone else. 

    Secondary school came and this is where the masks really came in and I would be a different version of myself depending on the people I was around or the situation I was in. If certain people were in my class I would put on a front and almost pretend to be someone else or seem closer to those people in fear of being bullied. Some classes were too much and I couldn't engage in them and would be sent to the exclusion room or i would just simply skip the lesson. I could talk to pretty much most of the social groups, almost sitting on the edge of them all but never fully being in one. It was also very easy to dismiss some of my behaviour as being a difficult teenager with a tough background. 

    I got lucky with some of the teachers I had, and my ability to learn definitely made it possible for me to get through my GCSE's. I would have better grades and more understanding of a lesson without even attending it - similar to your daughter i could learn so much more on my own than when I felt slowed down by a room full of people. I used to get in trouble for distracting others in lessons because I couldn't stay engaged yet my work was complete. This used to frustrate the teachers even more as they couldn't use the argument that my behaviour was disrupting my learning.

    I had a few subjects I didn't get on with, not necessarily for the subject itself it could have been the teacher or certain individuals in that lesson that would make it very difficult to keep the front on. I would have a few outbursts or confrontations in lessons like this to the point where eventually I ended up skipping these lessons completely. 

    I lived close to the school and could walk home for lunch, definitely made a huge difference! Eventually the school noticed i was missing whole subjects and I wasn't able to carry on just missing them but they understood where I was coming from in these lessons. If anything I was too honest and told them who why and what made me not want to and I will say I was lucky to have a head of house who actually listened and wanted to help me.

    Instead of forcing me into these lessons I was able to spend these in isolation to just get the work done (they offered the learning support unit but this idea made me feel worse than to be in the exclusion room, i preferred people to assume i was in trouble than to make their assumptions why I was in the LSU). I had tried to continue working from home as they knew my work was done to a high standard but couldn't agree to allow me to miss school completely. So we compromised with this, i wasn't forced into the lessons but i had to be on the grounds. I also had a counsellor at the school who I would spend at least an hour a week with from year 9 onwards. 

    The school knew I was very capable if not more capable academically than most, but if they didn't give me the tools to work around the challenges i was having im not sure how I would have managed. I got to the end of my GCSE's and found the transition to sixth form extremely difficult - and I stayed at the one attached to my secondary school. My attendance was 20% at the end of the year but I had managed to scrape A's and B's in my A/S levels without much real effort to learn. I would say this was a huge burnout following the end of school and I didn't adjust well. I got lucky and got accepted into a college programme which combined my passion and study. I don't think I would have continued my education without this.

    Overall it was a huge struggle and lots of battles in many areas, my ability to learn and absorb knowledge made it a lot easier and I couldn't imagine how difficult it would have been without that! I didn't navigate friendship groups very well, I now (10 years from leaving school) only have contact with 2 friends and both of them I have been friends with since primary school. I live miles away now and only catch up every now and then and its why we are still great friends nearly 20 years on, both of them get me and I have never had to act with them. 

    I was lucky and social media didn't really start until I had left school, I don't think I'd have coped being in the digital age now as a teen! I ended up coming off all social media 2 years ago when I was in a total breakdown and haven't looked back. It gives me too much negativity and I need to stay away.

    I believe I would have done better academically accepting the scholarship but then I would have also had to deal with being a poor child at a private school. The smaller classes and better quality teaching would have made my education better but I don't think the entire experience would have been better for me. I have no regrets for making that choice. I already felt so different to everyone else I didn't need to go to another school because I was different. 

  • in reply to Bumblebee

    thank you so much for taking the time to give me this insight and share your story. Everything you say resonates with my daughters story - apart from the bit about friendships, they have all dissolved over the years. I am told by her school that her classmates are "passively supportive". I'm not sure that's even a valid expression! How do you "passively" support someone? Surely support, by its very nature, needs to be pro-active, otherwise it isn't support!

    Enough of my pedantry - your explanation of finding learning much easier on your own also fits the pieces of the puzzle I'm trying to complete. I am glad that you found your way through but as this story unfolds (yours and the more general one I'm discovering) I remain in a state of disbelief at just how many people seem to have exactly the same experience as my daughter and how many have been hidden or missed.

    I am rapidly coming to the conclusion that it is not now a case of me asking the school what they can do to support. It's a case of me telling them what I, as a parent, will and will not accept. You and all the members on here have helped me to find the strength to do that (I'm not a very assertive person on the whole) and most importantly have shown me that my daughter and we as a family are not alone. It has been a turning point for me to connect to this community and I am so grateful to you all a these can' be easy memories to share.

  • in reply to StillLearning16
    StillLearning16 said:
    I am told by her school that her classmates are "passively supportive". I'm not sure that's even a valid expression! How do you "passively" support someone?

    "Passive support" means they give her space to be herself, in that the standard model for neurotypical support involves considerable pressure to be 'otherwise' and 'elsewhere' than we actually are, i.e., adopting and developing different 'personae' (social~behavioural pretences), and maintaining or advancing one's position on the societal league tables of anxiety and depression regarding future objectives ~ involving relationships, qualifications, employment, possessions, accommodation and all that 'keeping up with the Joneses' sort of thing.

    So in respect of your statement:

    StillLearning16 said:
    Surely support, by its very nature, needs to be pro-active, otherwise it isn't support!

    Knowing how and what constitutes as compatible support is though the problem you have asked about here, and often as the saying goes, "When in doubt do nothing!" Which is normally considered wise if one does not know what to do or say, and when that is the case ~ it is then wiser yet still to make inquiries to those who do know. So no failing there on your part or your daughter's classmates parts.

    Recall as mentioned above that the majority of children are under pressure (quite considerable pressure in fact) to be other than they actually are ~ thus they barely even know who they are within themselves, let alone who your daughter or anybody else actually is; as is in each and every case an indefatigable and beautiful mystery.

    This is what needs to be identified with, facilitated for and affirmed as 'is' the case ~ for every child autistic or not, in order that their experiential sensibilities are made manifest as a grounded awareness of their conscious vitality, as being their creative empowerment.

    StillLearning16 said:
    I am rapidly coming to the conclusion that it is not now a case of me asking the school what they can do to support. It's a case of me telling them what I, as a parent, will and will not accept.
    It is better not to become as if a "demanding parent", as until your daughter is actually diagnosed as being on the spectrum; the school is not obliged to treat her as if she is ~ which requires having had a diagnosis and having gotten a Special Education Needs Coordinator (SENCo) to provide them with an Education and Health Care Plan (ECHP) to work with.
    .
    So if for example you tell the school what you will and will not accept, they could tell you instead of helping your daughter to any greater extent that they need an ECHP ~ before anything more specific can be done, and in a worse case scenario you could be very much be left to it ~ which in the current state of affairs regarding the remaining school year and service provision timescales, that could prove somewhat of defeat in the short term.
    .
    Perhaps avoid more rapid conclusions and seek more progressive summations, and in the process learn to understand more slowly and thus more surely comprehend your daughter's developing individuality, and thereby the 'character' of her specific needs. As such you can use the knowledge of these to appeal to the strength of the heart, rather than start a battle of head-strong wills.
    .
    Consider for instance that your daughter has learnt how difficult the societal whirled is without having been supported as being on the autistic spectrum, so showing her that she is now supported as such at home can actually make the world at large a much more amenable reality for her creative empowerment. By which I mean you have been telling an autistic kind of rags to riches story, so work more with the true wealth of which now rather than so much any paucity:
Reply
  • in reply to StillLearning16
    StillLearning16 said:
    I am told by her school that her classmates are "passively supportive". I'm not sure that's even a valid expression! How do you "passively" support someone?

    "Passive support" means they give her space to be herself, in that the standard model for neurotypical support involves considerable pressure to be 'otherwise' and 'elsewhere' than we actually are, i.e., adopting and developing different 'personae' (social~behavioural pretences), and maintaining or advancing one's position on the societal league tables of anxiety and depression regarding future objectives ~ involving relationships, qualifications, employment, possessions, accommodation and all that 'keeping up with the Joneses' sort of thing.

    So in respect of your statement:

    StillLearning16 said:
    Surely support, by its very nature, needs to be pro-active, otherwise it isn't support!

    Knowing how and what constitutes as compatible support is though the problem you have asked about here, and often as the saying goes, "When in doubt do nothing!" Which is normally considered wise if one does not know what to do or say, and when that is the case ~ it is then wiser yet still to make inquiries to those who do know. So no failing there on your part or your daughter's classmates parts.

    Recall as mentioned above that the majority of children are under pressure (quite considerable pressure in fact) to be other than they actually are ~ thus they barely even know who they are within themselves, let alone who your daughter or anybody else actually is; as is in each and every case an indefatigable and beautiful mystery.

    This is what needs to be identified with, facilitated for and affirmed as 'is' the case ~ for every child autistic or not, in order that their experiential sensibilities are made manifest as a grounded awareness of their conscious vitality, as being their creative empowerment.

    StillLearning16 said:
    I am rapidly coming to the conclusion that it is not now a case of me asking the school what they can do to support. It's a case of me telling them what I, as a parent, will and will not accept.
    It is better not to become as if a "demanding parent", as until your daughter is actually diagnosed as being on the spectrum; the school is not obliged to treat her as if she is ~ which requires having had a diagnosis and having gotten a Special Education Needs Coordinator (SENCo) to provide them with an Education and Health Care Plan (ECHP) to work with.
    .
    So if for example you tell the school what you will and will not accept, they could tell you instead of helping your daughter to any greater extent that they need an ECHP ~ before anything more specific can be done, and in a worse case scenario you could be very much be left to it ~ which in the current state of affairs regarding the remaining school year and service provision timescales, that could prove somewhat of defeat in the short term.
    .
    Perhaps avoid more rapid conclusions and seek more progressive summations, and in the process learn to understand more slowly and thus more surely comprehend your daughter's developing individuality, and thereby the 'character' of her specific needs. As such you can use the knowledge of these to appeal to the strength of the heart, rather than start a battle of head-strong wills.
    .
    Consider for instance that your daughter has learnt how difficult the societal whirled is without having been supported as being on the autistic spectrum, so showing her that she is now supported as such at home can actually make the world at large a much more amenable reality for her creative empowerment. By which I mean you have been telling an autistic kind of rags to riches story, so work more with the true wealth of which now rather than so much any paucity:
Children
No Data