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

StillLearning16 said:

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.

I can absolutely relate to this (mid forties now - warning! May get rambly)

My time at school was awful. I was moved from my local village school to a large one in a town which took half an hour to travel to by bus and I never really seemed to adjust, it stayed with me all though school years into secondary school.

I had unbearable anxiety every day, found the winter months impossible (the darker days and artificial lighting played havoc with my senses) and really struggled to express myself openly with people - always expressed myself better in writing. I never understood ribbing (which escalated into bullying), found competing social demands from other kids impossible to figure out and I could never relax anywhere. Never understood social norms or the games kids (and adults) play to get on with others to get what they wanted - I wasn't streetwise. I had to always be "invited" by other people - I'd never take the initiative with anyone. Worse that that - I had to understand explicitly the reasons why my peers did things that didn't make sense to me. So if someone gave me some "verbal", I couldn't laugh it off and throw something back, I'd have to understand why they said what they said. I never could understand someone saying something just to provoke a reaction and get a rise out of someone - and for some reason I wanted to figure it out before I could respond. I couldn't get that people said/did some things because it was emotionally satisfying. I smiled a lot to comments that were ribbing because I didn't know what to reply, but I thought smiling was friendly so it seemed  like a good response. Could never understand that kids stood up for their siblings because they were family - even if they did something wrong. 

So the social "pecking order" was a complete mystery to me - as was other kids lying if it meant they could get away with stuff, or to give themselves credibility in eyes of their peers. Learning was the one thing I was good at although I struggled. I liked history but was rubbish with dates and events. Science and Maths was pitched in a way I found completely uninteresting although I loved social sciences. I had a reputation for being a "swot" - to me I was just doing my work. I hated working in groups and would end up doing my own thing if I could.  

Sports were a nightmare - give me a game which was baseball orientated and I could operate in those rules. Put me on a pitch, rugby or football, and I was useless. It was overload, I couldn't figure out the constantly changing positions, demands from teammates, and speed at which the game was changing fast enough. Hated physical contact and I needed lots of space (My PE teacher put me on the school rugby squad - I lasted one game!). Other games which relied on hand-eye co-ordination I was rubbish at. 

Psychologically I felt "out of touch" most of the time - apart from the underlying anxiety. I didn't understand anyone who didn't have it! Most of my energy was spent getting through the day and self-protecting from what I saw as an incredibly dis-organised and confusing environment. So by the time I got home I was exhausted. At nights I was sleepless - not only because I didn't want to face the next day, but also because the nights were so peaceful. Quiet. Dark. No demands. No hassle. Nothing to figure out. At weekends and summer I was on my own a lot. Either reading or writing programs on a computer. My folks did their own thing. I had a couple of friends who I got on reasonably well with, and traveled with on the bus, with and who I saw outside school every so often  - but I was friends with them because they were friends with me. If there were rules for making friends I didn't know what they were. Everyone was a puzzle I couldn't figure out. There were other kids at school I did hang round with sometimes - but I was just "there". They steered the conversation and I struggled to join in. I was more reflective and thoughtful - whereas they were spontaneous (i.e. regular kids). The natural ebb and flow and changing topics of conversation I struggled to get - a lot of the time I just closed down because I struggled to keep up. Even now I function better in small groups and with quieter people.  

I went through periods where I "shutdown". I just couldn't function or process anything at all, I went through the day doing what I had to do (my teachers referred to it as a "sticky patch"). I knew something wasn't right, I felt overloaded, ill-equipped to handle the world but I couldn't figure out why or what I was supposed to do about it. In the main the other kids seemed to have a natural way of interacting with each other and seeing the world and I didn't seem to have that. I spent a lot of time trying to figure it out, assigning people roles in my head and trying to understand what mine was. While other kids were growing - I just felt emotionally frozen or stuck. 

Perhaps one thing I do remember was my overactive conscience - I was very rule orientated. So if I did something wrong I'd have this awful sense of guilt - not that I'd *done* something wrong, but I *was* wrong - and was a worse person because of it. People's criticisms I'd accept as "true" without really weighing them up. I thought everyone understood the same set of rules. I couldn't process that kids had their own rules, had competing rules or sometimes just made their rules up as they went along and that very often those rules would change depending on how much they liked someone (and that liking wasn't necessarily to do with how nice you were to them) and which adult happened to be in the vicinity at the time. Any competing social demand that set up a conflict in me I found it near-impossible to resolve. I struggled with a sense of identity and I couldn't get a worldview, because I was trying to put order on a world which - to my mind - was chaotic. 

Sadly my folks didn't get what was going on. I was sent to school because I "had to go". I was struggling with peers because I "was too sensitive". If I complained about headaches it was because I "just got them". They were from a different era and had their own issues. At University things were different for a while because I adopted a persona to survive socially - it worked for a while until the second year until it all fell apart. I've still no idea how I graduated - probably because I couldn't see an alternative.

The worst part is that I blamed myself for all this. There was something that I felt I was missing in me except I didn't know what it was. I assumed everyone else "knew" something I didn't. So I faked it- which set me up through my adult years for a cycle of coping while things were relatively stable until they weren't and I had a complete meltdown while I thought everything was falling apart. Mis-diagnosed with anxiety/depression - a symptom of the problem, and 6 sessions of CBT every couple of years because I never presented myself in a terrible enough state to warrant any extra intervention. 

Things are much better post-diagnosis. 

Ethan thank you so much for taking the time to share your story with me. I imagine it might be very painful to explore such memories but for me it is incredibly helpful. I wish that I had thought to reach out to the autistic community earlier. I should say that she is only just being diagnosed now but she has been on the waiting list for that diagnosis for almost three years now and struggling for a hell of a lot longer (in fact all her life I now realise). But it was always presented to me by the doctors as a case of "let's just eliminate this possibility". Now that the extent of her difficulties are emerging (there are a number of physical concerns as well as the emotional and sensory strain she is under) all of a sudden her doctors and teachers are all talking about how "likely" they have always thought it to be and how "we can all agree" that we have found the answer! I suspect that as her full assessments start to come out they are all starting to seriously sh*t themselves, if you'll pardon the language!

If I had been brave enough to be more pushy, more vocal, more on my daughter's side, perhaps she would have had a different childhood. I'm heartbroken that I have got it so catastrophically wrong.

Being offered the chance to understand members of the autistic community and your stories is a powerful and enlightening experience. I can honestly say that, although you can read about autism, or look it up on the internet, it's only through these replies to me post and first hand accounts that I can now see what a woefully inadequate understanding I have of how my daughter thinks, perceives and feels. And through it all, her own mum was the one who forced her to carry on, day after day after day for 16 years. I can forgive the teachers and doctors for missing it, she is after all incredibly good at masking. But I can't forgive myself . I'm not looking for anyone on here to absolve me of that, I simply have to accept my massive mistakes and do my best to move forward with strength for her. 

You may not have the energy so if you don't please don't worry - but if at any point you do I would be interested to know a little more about your last comment that things got much better after your diagnosis. After such a long and painful journey I'm aware I am just gearing up to start a new one, so if anything does spring to mind where you think "I wish I had had that support" please do say and please be blunt if you need to! I'm here to learn :-)

Ethan thank you so much for taking the time to share your story with me. I imagine it might be very painful to explore such memories but for me it is incredibly helpful. I wish that I had thought to reach out to the autistic community earlier. I should say that she is only just being diagnosed now but she has been on the waiting list for that diagnosis for almost three years now and struggling for a hell of a lot longer (in fact all her life I now realise). But it was always presented to me by the doctors as a case of "let's just eliminate this possibility". Now that the extent of her difficulties are emerging (there are a number of physical concerns as well as the emotional and sensory strain she is under) all of a sudden her doctors and teachers are all talking about how "likely" they have always thought it to be and how "we can all agree" that we have found the answer! I suspect that as her full assessments start to come out they are all starting to seriously sh*t themselves, if you'll pardon the language!

If I had been brave enough to be more pushy, more vocal, more on my daughter's side, perhaps she would have had a different childhood. I'm heartbroken that I have got it so catastrophically wrong.

Being offered the chance to understand members of the autistic community and your stories is a powerful and enlightening experience. I can honestly say that, although you can read about autism, or look it up on the internet, it's only through these replies to me post and first hand accounts that I can now see what a woefully inadequate understanding I have of how my daughter thinks, perceives and feels. And through it all, her own mum was the one who forced her to carry on, day after day after day for 16 years. I can forgive the teachers and doctors for missing it, she is after all incredibly good at masking. But I can't forgive myself . I'm not looking for anyone on here to absolve me of that, I simply have to accept my massive mistakes and do my best to move forward with strength for her. 

You may not have the energy so if you don't please don't worry - but if at any point you do I would be interested to know a little more about your last comment that things got much better after your diagnosis. After such a long and painful journey I'm aware I am just gearing up to start a new one, so if anything does spring to mind where you think "I wish I had had that support" please do say and please be blunt if you need to! I'm here to learn :-)

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.