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

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 :-)

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. 

Deepthought said:

This is of course only a suggestion, with the knack of it being not to penetrate the tube toroid fields (or aura) of a person's anatomy and physiology with one's ego, but to see them as an integral holographic cohesion in the shared environment ~ and have more as such an intimate and consenting relationship; respecting the sanctity of their personal space and boundaries.  

DeepthoughtThis is a wonderful statement and beautifully put. Non-autistic people seem to relate through merging and blending, but autistic people may find attempts to interact in this way violating, frightening, and disrespectful. It is often better for non-autistic people to try presenting their interactions as gifts, as in the autistic person has the option to accept or decline. If a non-autistic person wants to interact with an autistic person, they should put the information in front of them and explain their intentions. The autistic person can then engage with the information in a way that feels safe to them. They can take the information, along with the knowledge of the person's intentions, and analyse that information to decide what they want to internalise. It may seem to be lacking in intimacy and a very formal way to interact, but a lot of people enjoy giving and receiving gifts! Think of the popularity of Christmas and birthdays and other festivities that involve gift-giving. The act of gift-giving can be very meaningful and intimate, and choosing to receive the interaction is a sign of interest and trust. 

StillLearning16 said:

Deepthought wow, thank you so much for sharing not only your own very helpful insights but also some great resources.

I am really glad to have been of some assistance.

StillLearning16 said:

As somebody who drives a lot of different vehicles, I love your analogy, I find it really easy to understand.

I was a little bit concerned about how much depth to go into with that analogy, but if you will excuse the pun I did feel quite a 'drive' to use it, and I was pondering upon whether I should use it to that level of detail or more on the gear systems or not ~ so that worked out rather well then. Bonus!

StillLearning16 said:

I am hoping that I can in turn make the school understand.

Sometimes some embodiments of the education system can be a bit of a one way system that makes deliveries but are loath to accepting them.

If the articulated lorry and SUV analogy does not work, there is another widely used analogy (which is also used in the complete guide to asperger's book) of comparing allistic people to car driving road network users, and autistic people being compared to local or express train driving rail network users.

So although allistic and autistic people may get to the same places, there are particular difficulties if us autistic types are not prepared for something as there is little option to turn around until we get to a central station with a turntable, and of course if our autistic way is not the same allistic way ~ it is either time to call in the rail way engineers to cut new routes and sidings into the educational landscape in order to lay new tracks, or just accept we have our own way of dealing with things and facilitate and affirm that fact.

One of the most shocking things of secondary education for instance was the very last day, when my physical exercise teacher said he was very proud of me.

I was both astonished and dumbfounded by that as I loathed physical exercise involving competition as I have no competitive aspirations or inclinations to win.

I was the weirdo for instance that really enjoyed playing badminton but got loads of grief for wasting my potential ~ as I enjoyed hitting the shuttlecock back to the other player so they could (with some effort) hit it back to me and so on and so forward back and fourth in a developmental manner.

My PE teacher explained that all the other teachers had given him 'no-holds-bared' free reign to by any means necessary 'break me in', as the greater majority of them as such inclined had tried and failed. 

He was proud that I did not break, despite me having two breakdowns from all the bullying I was getting!?!

I was utterly shocked by that statement. Completely and utterly shocked.

StillLearning16 said:

It strikes me that I have so much to learn and my daughter has the opportunity to teach me. I also have the opportunity to teach her, as I discussed with her last night.

The thing that makes an excellent teacher truly excellent is one who learns with their pupils as being their teachers also.

StillLearning16 said:

For example, just as she needs me to understand that she finds making eye contact abhorrent, in the  same way I am able to help her understand that for me a conversation without any eye contact is an extremely difficult experience.

Perhaps meet each half way and each of you learn to use your peripheral vision instead of your focal point, with the focal point of your vision actually being the function of the ego ~ which is meant to serve as vocal and verbal range tester; involving whispering quietly to those who are close to us, talking to those who are near to us, and shouting to or yelling at those that beyond our reach or far from us.

This is of course only a suggestion, with the knack of it being not to penetrate the tube toroid fields (or aura) of a person's anatomy and physiology with one's ego, but to see them as an integral holographic cohesion in the shared environment ~ and have more as such an intimate and consenting relationship; respecting the sanctity of their personal space and boundaries.  

Sometimes having an extremely sore and belittled sense of self means that some do not have the confidence to look people in their eyes or project their voice, due to so often being chastised with the most furious projections or venomously belligerent stabbings of the ego.

And in the same way that people have been raped and never thereafter feel affectionately inclined with others, those with auric (or proprioceptive) sensitivity or hypersensitivity will not feel inclined or comfortable engaging in eye contact.

StillLearning16 said:

I have only recently been equipped to explore these conversations with her and it is very enlightening for me as it helps me to see how she experiences the world but also to understand myself and my NT perspective.

I have always been fascinated by other people's sense of their sensibilities and their different perspectives or points of view on anything they feel most enthusiastic about, or most involved in.

Even if people are deeply into subjects that I am not really all that interested in, being with them as they put their sparkle and shine into the subject matter is a treasure to behold.

Reading yours and others insights about developing mutual allistic and autistic identifications and affirmations is such a major bonus ~ special interest factor ten session.

StillLearning16 said:

Wouldn't it be nice if we could all just live in a world where the differences between us were accepted and embraced as a strength, not a "problem"?

Perhaps consider embracing that difference as not being so much a problem but more in fact a solution in disguise, in that by contrast it is evident that the nature of the world, the solar system, the galaxy and all the other galaxies through the universe not only accepts us ~ but absolutely and infinitely embodies and supports us as we are; individual by design.

StillLearning16 said:

I think that we claim to live in that world, but since I have become immersed in the world of autism I feel nothing is further from the truth.

Well we do live in the world of nature where individuality its sole objective, but the human whirled of similarity by design is though rather a nightmare and everybody wakes up from it eventually, and things have become so much better than they were when I was your daughters age.

In fact one of the most fulfilling events that happened on this website of forums for me, was someone in their very early twenties perhaps was having a furious vent about being a late diagnosee ~ and can't quite recall if I actually posted (with me getting diagnosed at the age of 44), but someone stated they were in their eighties or nineties and had just been diagnosed themselves, and the younger diagnosee was totally in awe and respect of the older diagnosee.

Things really are improving and you and your daughter amongst so many others; are really bringing about very much needed changes, very much for the greater good. 

StillLearning16 said:

Perhaps one day...in the meantime thank you for your advice which has been of great help to me :-)

You are entirely welcome, and thank you too for your insight and sharing you and your daughter's self discovery with us.

Have a good one and may it lead to many many more :-)

Deepthought wow, thank you so much for sharing not only your own very helpful insights but also some great resources. As somebody who drives a lot of different vehicles, I love your analogy, I find it really easy to understand. I am hoping that I can in turn make the school understand.

It strikes me that I have so much to learn and my daughter has the opportunity to teach me. I also have the opportunity to teach her, as I discussed with her last night. For example, just as she needs me to understand that she finds making eye contact abhorrent, in the  same way I am able to help her understand that for me a conversation without any eye contact is an extremely difficult experience. I have only recently been equipped to explore these conversations with her and it is very enlightening for me as it helps me to see how she experiences the world but also to understand myself and my NT perspective.

Wouldn't it be nice if we could all just live in a world where the differences between us were accepted and embraced as a strength, not a "problem"? I think that we claim to live in that world, but since I have become immersed in the world of autism I feel nothing is further from the truth. Perhaps one day...in the meantime thank you for your advice which has been of great help to me :-)

StillLearning16 said:

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.

Your daughter seems to have been having a progressively incremental and eventually culminating psychological breakdown, and the physiological burnout from which is the aftermath of that which led to it, that you continued on to describe better than you perhaps realised, with the first part as follows:

StillLearning16 said:

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 am assuming (due to my own and other people's personal experiences on and off the spectrum) that that involves no longer being "resilient" to anything ranging from mild psychological humiliation ~ to also severe physiological aggression, remembering of course that 'normalised abuse' involves not reporting bullying to teachers, parents or anyone else ~ on pain of the psychological humiliations or also the physiological aggressions being made worse.

Then the next part of your not realising how well you were describing things ~ is as follows:

StillLearning16 said:

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.

In that it is increasingly difficult and eventually impossible to get along with the psychological 'dissimilarities' of being our autistic selves ~ whilst we are being driven instead to present the physiological 'similarities' of non-autistic people's cognitive re-characterisation pretences, i.e., smiling when sad and saying nothing when something needs saying and all that, which as assumed behaviourisms are generally and specifically called 'Social Camouflaging and Personal Masking' ~ as are psychologically incompatible and particularly damaging for the neurologically divergent, what with all the psychological shutdowns, breakdowns and accompanying minor and major physiological burnouts and all that.

As an analogy for the psychological and cognitive incompatibilities of autistic and allistic interactions, communications and ideations ~ the autistic mind-body relationship is like driving a manually geared articulated lorry with 21 forward gears and seven heavy goods trailers, whilst the allistic (non-autistic) body-mind relationship is like driving an automatically geared sport and utility car with one forward gear and on average no heavy goods trailers, and only a single light, medium or heavy weight trailer if required for exams, interviews, getting married, house moves, having children, getting divorced and friends and relatives dying and all that.

This means that autistic people must learn how to do psychologically gear changes going into and coming out of the tight turns and going up the inclines and down the declines of the highways and byways of a interpersonal and social life, and we are supposed to learn this social manoeuvring from people who do not really have to think much or even at all about cognitive gear changes (let alone psychological ones) as it is just a case for them of getting into one cognitive gearing and powering and steering ahead to get here, there or anywhere ~ without having to consider comprehensive payloads and catastrophic pileups.

StillLearning16 said:

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.

In my primary and secondary education days during the seventies and eighties ~ it was just a case of getting on with it by either becoming to some extent a psychological catastrophe, a sociological disaster, or something in between or thereafter as a mess in the mental health mechanism.

In terms of educational reading on getting your daughters needs met ~ I always in situations like this recommended as a tactical strategy, 'The Complete Guide to Asperger's Syndrome', by Tony Attwood, being that in my opinion, the only thing wrong with that book ~ is that it was neither written nor published prior to or during the seventies.

It really helped me to narratively reframe and better understand my childhood development needs, and to better comprehend the necessity of slow and evenly paced regimented scheduling ~ into and through my adulthood.

The complete guide to being aspergenic was an essential read for me regarding the facilitations, identifications and affirmations that were mostly lacking in my life, so perhaps if like some of us your daughter has intellectual hungerings and thirstings for self discovery and awareness ~ give her a link to the book and she may be able to let you know what her  support needs are, just possibly.

If not, you may find everything you need to know as parent and did not think you already knew strategically set for you in specifically informative and tactical fashion. If you need a more feminine approach to things also for life in general things, you and or your daughter may find 'Females and and Aspergers: A checklist' somewhat viable, plus the authoresses' book 'Everyday Asperger's: A Journey on the Autism Spectrum - Revised Edition' could be worth at least a preview read.

Hi Magnolia1 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.

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.