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

Embracingmyself thank you for your reply and I'm so sorry it's taken me so long to read and acknowledge it. I didn't mean to be rude, I had an issue with the NAS website getting stuck on my login so this is the first time I've been able to look for about 6 weeks. I'm really grateful to you and all others for replying on this thread, your collective and individual advice have given me some great pointers to follow up with the school. Really apprecated thank you!

My school experience was exceptionally tough because the teachers didn't understand me, they either hated dealing with me or just offered no support at all. The other kids acted like I was a different species to them and I didn't know why. School was miserable for me but I think it was just destined to be that way, it's hard to imagine it being any different.

However I wasn't diagnosed autistic, or even slightly considering that I could be autistic (I didn't really know anything about it) at the time so your daughter has that positive on her side. If you could let her teachers know, they may be able to support her properly and make accommodations so that she can be more comfortable.

If working from home really works well for her though it may be ideal. I know that I would also prefer doing my work at home, and I'd get the best grades in my class so the teachers didn't mind as long as I was doing it.

She is lucky to have a parent who cares so much and reaches out on her behalf like this. Best of luck to you both.

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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.

Roritetthank you. It sounds like you experience was very tough. I am going to leave it up to you whether you reach out directly to me to share it. I would certainly be interested to hear but do not want to pm you and make you feel under any pressure to share if it dredges up bad memories for you. Thank you and I hope things are better for you these days.

I can tell you about my school, but this is a tough story because it was in a world where tolerance does not exist, violence is not prohibited, and an autistic person needs to disguise himself as anything so as not to end up in a special closed school for disabled children, after which a person can be locked up in a psychoneurological boarding school for adults where you can die of hunger. I disguised myself without even knowing it and could study in an ordinary school, at home I was strongly forced and punished if I was "abnormal". If you are interested, then write to me, as I think that putting this story in open access can be a trigger for others.

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.

I think for me, because I was bullied really bad in primary school I made even more of an effort to not be a target to anyone. I felt like a chameleon at times and would adapt around the group I was with. But in terms of friendships it was very complicated and I wouldn't say I had friends then, just acquaintances. The 2 I still have contact with are not your typical friendships, we have lots of time and distance between us as I'm certain that's why we can still catch up after all these years and it not end up causing problems - we never have too much time together.

I got on much better with boys than girls and that is still the case, I didn't cope well with the gossiping and bitchiness and found the male company much more straight forward. When I did try with close friendships I have found that because people are not straightforward and when it comes to falling out I can't go back on it. Once the bridge has been burnt thats it I can't forget what they did or said and that has been a common trend. If they could do it then I can't see them not having the opportunity to repeat it. I now tend to be very wary before trying to get close and make friends and keep myself on the edge for this reason. 

I am lucky I have a sister very close to me in age, but when I was at school I struggled to get on with her too, I felt very different to her we are polar opposites. But since becoming adults she has been my rock and best friend I haven't felt lonely or the need to look for other friends when she is great for me, very easy going let's me take charge and adapts to me very well. But I am also aware that I put a lot of emphasis on my relationship with her and not sure how I will manage when she's got a partner or hasn't got the same time for me as we've had the last few years.

That phrase from the school is not helpful or clear at all, what could they mean by that? There are many factors that I found affected the lessons, if the teacher wasn't very good, couldn't control the class, other disruptive students who don't want to learn, people shouting out, the size and shape of the classroom. 

Your daughter will know which subjects she really enjoys attending and which ones cause her struggles. For me my school didn't really offer any help until they had realised I had missed so much and I was approaching my exams. They knew I was disruptive in certain lessons and had been on many attendance reports not through staying home all day but I would leave after the lessons I wanted to attend and then do the work at home for the other subjects.

I was stubborn and stern, I was not attending them regardless so they had to find a compromise. If I wasn't able to produce a good level of work outside of the classroom they may have pushed back on that harder but they knew the best way to help me was to let me do it in my own space and time. If they didn't I just simply wasn't going to come in, agreeing to meet in the middle seemed to work well. They were happier I was in school and I was happy I wasn't expected to sit in a lesson that felt like a huge waste of time. 

Your daughter is very lucky to have you fighting her corner and accepting the difficulties she may face. Don't be hard on yourself either! As I said earlier I had a teacher ask my mum to get me assessed and its took nearly 20 years for her to open up and admit I was difficult back then too but being on her own she didn't want to highlight that she was struggling with me through fear of interventions from social services ect. 

Part of me wishes I had gone through this process a long time ago but I am not sure if I would have pushed myself as hard as I did over the years, I have been able to achieve lots but it came at a cost. Many burnouts and meltdowns, getting shingles at 23 through stress levels and more, which could have all been avoided or minimised had I not been trying to do it all at once! 

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.

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. 

raspberrypiewow, thank you for sharing your story. I'm sorry the education system failed you so badly and tthat it has taken you so long to reach some self understanding. Your comment about being "twice exceptional" really resonates with me. My daughter is in a very similar situation which is what makes it so hard for the school to appreciate her situation (I think). So it's very helpful for me to understand that she is not alone in that. Thank you and I hope your forward journey brings some clarity for you.

i'm sixty five, and was diagnosed at 62. so, back in the day, my schooling was simply awful.  i guess i masked myself so well, that i masked myself from myself. i had figured i was NT.  i almost never learned anything in school - i either simply got it, or i never got it. i was bright enough that teachers labeled me as not trying hard enough. i did not get along with any of them, even when i was young.

i appear to be twice exceptional. that means, your strengths are matched by equally strong disabilities. i guess like a car with an incredible engine, a work of art engine, but no way to transmit that power to the road. the engine, that marvelous engine, that luscious piece of engineering - it just revs endlessly. it's a POS, for all practical purposes. my brain is that engine. 

so i spent decades just sitting in chairs, cutting class, not learning, bored,... basically, i learned how not to learn. i learned this through my years in school. by the time i got to college, i was still under the delusion that i could succeed in school, ii just needed a good school. well, nope. never worked out. in my sixties i finally found out i had some learning disabilities (along with asd diagnosis). that was why in school i could work as hard as i could, but just was mimicking learning. i knew that i was not getting the material. but i just didn't no y.

so, now in my sixties, i'm finally slightly unmasking myself, semi-discovering who i am, i guess, and who i'm not. i think that is the lesson i will impart from my failures in school: figure out who you are, even if it's against the grain. who i am is totally against the grain. it's that simple.

but where i go from there, is a total unknown. it's unknown. oh, so that means, let me translate: everyone thinks they know who i am, i simply know they don't, and yet i don't know who i truly am either.

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. 

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. 

Happy to hear that you got the textual "glimpse in the eye" :D 

I understand why you feel overexcited by the situation. Being a parent to neuro-divergent kids I understand the constant stress regarding the present and the future. It's not easy and it feels like going against the entire world. 

It's so easy for others to write off one's kids as a case of bad parenting, laziness or something else.

However, we've experienced great feedback by being completely open. We always, often proactively, tell people around us that our kids are autistic, like we are. And explain their behavior as good as we can.  

Your daughter is very lucky to have such a dedicated and caring parent. Just by accepting her and trying to understand her world you are doing something magical. She has a chance for a happy life because of you. 

No problem, happy to share if it helps in some way.

StillLearning16 said:

all of a sudden her doctors and teachers are all talking about how "likely" they have always thought it to be

I see that as hindsight bias - well documented and there's a huge body of research in the area of medical practice and diagnostics. It's one of the vastly annoying quirks of being human. Everyone likes to think they've had that special insight into a situation once the uncertainty has been resolved. As a species we're natural storytellers and the "I had a feeling...." story is more reassuring than the "...I had no idea one...." 

As to why things got better post-diagnosis.... 

-Everything suddenly made sense. All those things I listed above that I struggled with wasn't because I wasn't trying hard enough, I struggled because I wasn't the same as other people. Just knowing that I saw the world completely differently and in such a fundamentally different way from other people gave me permission to be kinder to myself, accept myself and let go of my past. Schooldays were awful, absolutely, but now I understand why people acted they way they did and why they gave me a tough time - I was different, and they were thinking I was the same as them. Doesn't excuse it, but it gives me a "why".

-I gave myself a lot more credit for the things I have done, because the playing field isn't level (It isn't level anyway but not being socially driven makes some things an awful lot harder).

-For the first time I was able to accept myself for who I was. I've spent a long time trying to find the right strategy, or the right self-help technique to get out of the mire. Post diagnosis I realised there's some things that won't change because of the way I'm wired. Now it's about self-managing instead of trying to overcome, or eliminate, those parts of my psyche which I thought were out to sabotage me from having a "normal" life. Best part is I'm no longer a slave to those insidious societal and cultural expectations which expects certain things from me. 

-My depression and anxiety were symptoms of the underlying problem. That problem wasn't (as I thought) I hadn't got my life right, it resulted from the struggles of trying to live in a world where I didn't feel I fitted in and I couldn't understand why.

-I've better support. My diagnostic team were fantastic and I've access to an excellent psychologist who is able to help to work through things when they get messy (I recently had an episode at work that knocked me sideways - but used that as a learning experience on how to self-manage, my psychologist fitted in an appointment within the week to talk through it and to remind me that there's some things that I'm going to find a little bit harder)

-I've found a community I relate to. So many experiences I can connect with (As well as using this site, I check in with an neuro-diversity works forum and we swap notes) That makes things much easier, just knowing there's other folk out there working through similar stuff.

-There's a whole world of information and strategies that I can tap into which I didn't have before. I'm still getting used the necessity of certain things (using a mood chart to check in with myself is annoying because I wish I could suss my emotional state out without using a chart of pretty colours) but I'm seeing the benefits. Books my Tony Attwood, Temple Grandlin - people I'd never even heard of are really insightful. Autobiographies of those on the spectrum have just opened things up in ways I never thought possible. My latest book... "The Unwritten Rules of Social Relationships"...Sean Barron and Temple Grandin is one I wish I'd known about it years ago, I'd have snapped it up on the title alone in a heartbeat. What I'm getting at is that a lot of books were telling me "how to be" or "how to achieve". Autism literature says I can accept who I am - but there things I need to know and do to make sense of and function well in the world. Chris Packham's TV documentary "aspergers and me" (probably on You Tube) was a total eye opener. 

-It becomes a journey of discovery - and even the experts are still figuring things out. After my work episode I became ridiculously excited when I learned about the concept of the "Intolerance of Uncertainty". Once my psychologist had mentioned the idea I'd captured all the relevant research papers from the internet within hours. There is so much information I can tap into, and it's not held in the hands of professionals - the internet makes it freely available. Research is my thing so I can go straight to the source - research papers, journals, meta-analysis. Just understanding gives me security, even if the answers aren't there. I found Cork Autism conference really helpful (for the record: one of the speakers insights into ethics - did they do it on purpose, or are they doing their best? are the most valuable 12 words that I've ever heard).  

-I have a reason and a right not to "push" myself because of others demands or work myself into the ground. So that 10 minutes I need to take between tasks or conversations - it's not because I'm being lazy, I actually need that time to decompress and buffer so I don't get overloaded. That need not to give an answer straightaway to a question, and to take it away, it's not because I'm a slow learner, or not smart enough, that's how I process new information and evaluate it. That need for a clear "ask", I'm not being awkward - if I'm to give my best then I need specifics - I don't do guesswork (besides if someone is asking me to provide something, but doesn't tell me how they want it, why are they asking me to do the thing in the first place?). Because I know I need time to process new information I can tell people I need that time and instruct them to "clear off" if they get too pushy (I'm not an easy mark for salespersons - generally because I shut down once their script starts).

-I have legal protections - so my employer can't parachute me into just any job if it's detrimental to my health. There's advocates who can help me fight my corner if things feel they're getting too tough.

-I don't feel alone.

It's taken some time to come to grips with all this. And there are those difficult moments, but I feel better equipped to navigate them. There are things I wish had been different (I still have regrets about my career) but I had a fantastically supportive and caring manager, who I now consider a very good friend, who was courageous enough to have the conversation with me about the possibility of being on the spectrum and supported me during the period of diagnosis. When it came to work I'm aware that she had many a difficult conversation with senior managers about what that meant for me and the best way to support me. Sadly she's moved on now, we still keep in touch, but there's no price I can place on what she did for me. 

If I was put on the spot then I'd say she was the support I'd liked to have had earlier. 

Hope this helps.

E 

BTW: It's easy for me to say and I know things have been difficult for both you and your daughter but try not to be too hard on yourself. You're doing great. My parents passed without ever admitting something wasn't right and never knowing my diagnosis. Reading your posts is really moving. You are open, searching for information and all for providing the best support for your daughter. Your love and care come across so strongly and that is the most valuable thing... being there to help and support your daughter on this journey. 

Thanks so much Charlie Timm I appreciate the insight. And your first sentence made me laugh! Yeah sorry for the long post. I've felt so alone with this for so long, I'm probably a bit overexcited now that I have started to find answers :-). 

Honestly, this post was just too long for me to finish - my ADHD started to get itchy :) However, I think I got the gist of it

A little background story is necessary to give my reply the right meaning. We are a family of four neuro-divergent people - autism as the common denominator. However, we didn't learn that until recent years.

Both my wife and I have experienced several adult-life trauma rooted in our time in school. We were both highly intellectually capable. However, we did absolutely not thrive in the school institution and the forced socializing. It caused us to lose touch with our sense of selves. We became our masks just to uphold existence. In our experience, it is not possible to build self-esteem, when you have lost touch with your core.

Long story short, we are homeschooling our kids. We see clearly how they will suffer the same losses as we did if we send them to school. To us, school was very much like making fish climb trees. We are different and need a different environment to excel. That's just it. 

Systematic and Deepthought thank you both so much. I am learning so much and these analogies (the vehicles, the railways, and I love the notion of gift giving) help me to understand. You didn't have to take the time to reply but you did and I am extremely grateful to you and everyone else who has given up their time to help me in this way.