Burnout is a bitch. I think all of us who have experienced it, or are experiencing it, will agree with that. But, how it presents and how long it maintains its hold over us, seems to be as variable as so much else about us.
I can now recognise the many times I have experienced burnout in my life. Each one marked by my constant refrain of, "I'm just tired" and with me doggedly plodding on with my life as best I could. Even now, in the deepest and longest burnout of my life, I am still doing the same.
Of course, I at least know to try and pace myself now. To let the unimportant things slide until their time comes and to spread out what has to be done, to the best of my ability. I know to dedicate time to self-care, to rest and recreation and to acknowledging my needs as an autistic person. This much, realising you are autistic can teach you. It can also help you to spot the signs of burning out sooner and hopefully mitigate its effects that way.
When that's possible, of course. For what caused my current burnout was unfortunately a series of overlapping events that I could not avoid, or do anything about. It was almost as if life chose to keep throwing things at me, each more intense and impossible to avoid, until I broke. But then life can be like that sometimes.
Autistic burnout is, of course, different from normal burnout, in what causes it and how it presents. It is, more often than not, a breakdown of our ability to cope with the demands being placed on us and not with how much we can carry. We are used to carrying insane loads and with having to work so much harder than most other people, just to keep putting one foot in front of the other through life. In fact, I know that I never really rest, not even now. My life is one long and continuous assessment and checking on whether the routines I have in place are being maintained. Whether I have done everything, on what needs to be done and finding new ways to blames myself for why it hasn't been done yet. There is no such thing as not working as far as my brain is concerned. And because I never stop, I don't know how to stop. How to heed the signals of tiredness and exhaustion and how to not knuckle down and continue anyway. It has been the story of my life. In work and everywhere else, always push, push, push.
And perhaps this is why autistic burnout is so common and possibly even inevitable. The sheer effort that life already is. The constant raggedy edge we walk just to get through a day and how in doing this day after day, all we end up doing is teaching ourselves to ignore the warning signs and that our needs are even important. And end up learning instead, that all that really matters is the next plodding step, no matter the load we are already carrying.
@pathfinder@actuallyautistic I was chatting with a friend earlier and during our conversation I realized that my most recent burnout started in 2017 - peaked in 2021 - and I am just beginning to emerge. It’s the longest but not the worst. Knowing what it is helps, for sure. Having a community, even when I’m mostly silent, also helps. 🌟
I've just finished watching the first series of "A kind of spark" on BBC iPlayer. Although, this is not about this excellent show. Rather, it's about the struggle I had with watching it and why it took me two attempts to get through it.
The fact is, that found it quite triggering. Now I know it's about, and probably made for, teenagers and the struggles they go through at school and especially being autistic and at school. And even though school was a very long time ago for me and in another age of man. I still couldn't help comparing it to my own experiences and not just in school, but throughout my life, and how much similarity I could see. Not, in the details, obviously, but in the way I would constantly run afoul of people, or somehow be on their wrong side of someone, even before we'd properly met. The sheer pettiness of some of it and the hurt it so often caused me, as much by my not understanding it, as by the unfairness of it. Of how many toes I'd stood on, without meaning to, or even knowing I'd done it and how much of my life I'd actually spent bewildered and upset by the situations I would find myself in and the actions I couldn't understand of the people around me.
Of course, no-one, least of all myself, knew that I was autistic back then, because that would probably have made it much worse. But knowing I am autistic now, at least gives me an understanding of why some people might have reacted this way. How, in some ways, at least, I've never really behaved in the ways that others might find appropriate, to their position, or status, or sense of worth. How socially blundering my way through life, of necessity, includes many toes I could step on and people who could be offended.
But, of course, understanding this now, doesn't really ease the memories. Neither of the pain I did cause, without meaning to, or the pain I received. It doesn't make the life I've had easier, only easier to understand.
And that, in a sense, is what this show made me have to face. That no matter how privileged my life has been. How much easier I've had it, compared to so, so, many others. It's never been easy. There have only been moments, brief and sometimes, admittedly, not so brief periods where my life seemed to make sense and I felt, if not entirely in control, at least in somewhat of a comfort zone. That I was OK and that I could just get on with doing things my way and just being myself. Not without cost, of course, normally in hard, unremitting, work and effort. In often struggling with feelings of guilt and shame about how selfish I was having to be. Because, that was what carving out my own world felt like. Not necessary, or even justified, but selfish and almost petty of me.
And then, of course, there would always be something that would intrude from the outside world. As often, as not, something petty and officious that would dump me back into the turmoil and uncertainty. Because, you can never really isolate yourself from the world, as much as some of us would love to. And so much of this world really isn't made for us. It will always be hard and there will always be those who delight in making it harder. Those who are truly petty and selfish, in the ways that we aren't, and others who will try to use that hate to benefit themselves. It's why carving out our safe spaces will always be difficult, but also, so very necessary.
@pathfinder@actuallyautistic thank you for sharing this perspective. I was on the fence about watching it (using a new app can be, all by itself, an overwhelming proposition) but I think I want to now.
the self reflection/auditing of my life with this new knowledge can be difficult. I dont want to "dwell on the past" but it's important for me to understand my own story, especially bc I spent so much of my life very intentionally pushing parts of myself and my own story way down
@seanwithwords@actuallyautistic
Yes. I think many of us became masters at suppressing and disassociating ourselves from the truths we knew, in order to fit in. Not exactly healthy and whilst the past is the past, it's the sort of thing that festers if it's not dealt with.
After joining a post by Niamh Garvey (hopefully a successful link to it below) about whether she had adhd as well as autism, I have spent the last couple of days contemplating this idea for myself as well.
I am still not entirely convinced, but I am beginning to suspect that I might well be in this situation as well. After watching a number of YouTube videos from those with both autism and adhd and reading up on adhd, I can see a number of things that point on that direction certainly, although I'm not entirely convinced.
I have always been aware of the near overwhelming urge to either interrupt people, because there is something I want to say and if I don't then, then I know there is a more than a reasonable chance that I will forget what it was. I also have a tendency to want to finish people's sentences. Both of these things though I have taught myself to resist. Even though I feel a great deal of discomfort doing so. I am also more than aware that I can forget what I was saying, or thinking, halfway through a sentence. That digging through the trash to find the package with the instructions on, that I only just threw away after reading, is not uncommon. As is failing completely to understand or remember the instructions someone just gave me.
But then, my short term (working) memory is basically non-existent. But, I'm also aware that this is a fairly common problem for autistics and even before I realised I was autistic, I built up systems to help myself deal with this. As well as with my general forgetfulness. Lists, memory aids, even making the route out of my flat a trip hazard to make sure I don't forget to take something with me. Also, I live alone and essentially there is a place for everything and everything has its place. Not foolproof and I have lost things in a very small flat that I still haven't found. But generally speaking effective.
I struggle to start tasks, especially tasks that I have no real interest, or desire to do. Being interested in something has always been my main motivator. But eventually, I can normally force myself and work my way through things, especially if I know they are necessary. Knowing I have this problem is also why I hate leaving things to the last moment. I know that I am more than capable of doing that if I allow myself, but also that the stress from doing so is nearly overwhelming, even if it can be motivational. As is the stress of clutter. Not the organised clutter that is my flat, where I know where everything is, as in somewhere in that pile over there, but the clutter that builds up eventually and begins to feel as if it is out of control.
Novelty is a factor in my life. Or, boredom, rather. Because sooner, although far more likely later, I will grow bored with routines, or things like safe foods, and need to change them. Many of my interests also seem to suffer from a similar threshold. A certain point where I lose interest and no longer feel any need to maintain them, even though this might make me feel guilty about giving up on them. In fact, I hate boredom and I have always needed a certain amount of new things to watch, or discover and to be actively doing stuff, if only in my head. And whilst I have never thought of myself as being particularly spontaneous or impulsive. I am, within certain limits of self-control. There is a rationality that often has to be appeased that gives me a sense of control. I have also taken stupid risks and great risks. But rarely beyond what I knew was necessary, or to my mind, at least, controlled to a point.
I can be easily distracted, by random thoughts or by, (well obviously not squirrels, I mean who would be? but, oh, oh, there's a butterfly) things. But not always to the point that I'm not at least marginally still aware of what I should be paying attention to. Letting myself wander whilst maintaining at least a marginal awareness is an old trick of mine. I have always been a fidgeter, but that's also how I maintained concentration. Feeling the overwhelming need to move, has always seemed to me to be anxiety driven, or is the way I focus and think. In fact, movement for me has always been as much about settling and regulating myself, as it has been compulsive.
As I said, there are certain things that seem to fit, even if they also seem to have been effected and possibly modified by my autism. I would love to hear your thoughts.
@pathfinder@actuallyautistic@actuallyadhd I suspected ADD years before I had an inkling of autism. My official diagnosis in 2021 included both - I believe the unofficial wording was ‘debilitating ADD’ 😁 and it definitely has been.
Now I tend to identify myself as neurospicy - the smaller categories were helpful for understanding myself - but I don’t want to get caught in those boxes.
I expect to continue to evolve how I see it all.
Much to my shock I realised that I could be autistic when I was 53, roughly 7 years ago. And it was a shock, even though I suspect a very small, well hidden and very much ignored part of me, might have suspected. No one told me about it, or suggested that it might be the case. I did not see myself in relatives, the way so many of us do. I just happened to come across an autism test online and for no particular reason, took it.
It was that, that started me on my path to realising and finally accepting the truth that I was autistic. But, looking back, I sometimes find it hard to understand how I didn't know earlier. So much of my life now, just screams autism at me. But even ignoring the horribly ableist and medieval view I had of what autism was, the main reason why I didn't was probably because I could mask, both from myself and others, so well.
It was, I realise now, a life lived in denial. A denial of how much things bothered me, how much effort I had to put into things. Even a denial of the things I knew I couldn't do. Because this is the thing about appearing to mask so well, for so long. It is, in a sense, a lie. I couldn't mask well, if at all. Not all the time. Not in all situations or circumstances. There were things I just couldn't cope with, or even begin to deal with. But the trick was, that I either knew about them, or learnt the hard way about them and then I could manage my life to avoid them. Because they were things I could live without, without affecting how I appeared to be coping. Things that didn't affect the way I lived, even if they did affect my sense of worth. Because, how broken did you have to be, not to be able to go to crowded events, like a sports match, or a concert? Or to be able to deal with the socialising of a large gathering, or a family event, without having to hide in the kitchen, or forever outside, or break down in a toilet?
It was all part of how I masked myself from myself. The internal masking, as I like to call it. If I couldn't cope, then I was broken. If I couldn't stand something, then I was too picky, or sensitive, or I simply needed to learn to ignore it. And somehow I did learn. I learnt how to cope with noise and smell and visual overwhelm. I learnt to not let things bother me. To a point at least. There was always a step too far, when I couldn't, or didn't have the energy any more to maintain it. And this did take energy, a lot of it. Something I've only realising now that I don't have the energy to spare to even try it. Or the ability to, in many respects now that I know what I was trying so desperately to hide from.
Because when the truth is known, it's far harder to deny it. It's far harder to live the life where appearing to cope, is as good as coping. Where blaming yourself, is easier than seeing others faults. Where ignoring the pain, makes the pain go away. It's hard to see the mask as a benefit and always a good thing, rather than the shield and tool it always was.
Thank you for this. I'm just going through the process now. I didn't anticipate it and went in at 45 suggesting there might be something other than depression going on. In my psych interview they told me I was not only unquestionably ND (ADHD) but felt strongly I was autistic. Didn't even really occur to me, although I'd done a number of self tests before where I was always in upper range. But I just figured it was how I'm built and there was crossover. But the subsequent tests all obviously pointed to it, but I still didn't really see it. So I've now been referred to the specialist and I don't really know what to expect or how I feel about it. I know I exhibit many of the traits, but it's been 'me' for so long it feels weird to reframe it. But it was also quite overwhelming because I've always just assumed I'm fundamentally broken and have (sort of) learned to live with that. So it's fascinating to me to hear other people's experiences. I don't really know what to expect from my ongoing journey, but it's interesting to know I might find a potential answer and maybe a different path. I wish you all the very best and hope you're thriving.
@TheBreadmonkey@actuallyautistic
Discovering something like this about yourself is not easy, it's not even painless. It tends to make us look back and reframe our entire lives. Often that can feel like grieving all the "what might have been's", or it makes us angry, even bitter at times, when we see how avoidable so much was. If only we had known, or others had even tried to "see" us as we were.
But, this also gives us access to so much more. To a community and its knowledge and experience. We are no long alone. We can truly begin to understand what being us, is and not only how to express that, but nurture it. We can learn how to shield ourselves and take care of ourselves and to live so much better.
There is also problems with the diagnostic process itself, that make so many of us distrust it.
That it's still geared towards children and demands parental reports from adults who may not have them anymore, or who may not be in touch with them for good reason.
That it's still weighted towards male, white and cis. Sometimes to the point that it's almost impossible for anyone else to get fairly assessed.
With the need to get referred by a gp, who is probably even more out of date than the assessors.
Autistic brains be stupid. Well, obviously not stupid, they just seem to work, or not work, in mysterious ways.
The main one that has always got me, about mine, is that I have no memory for sound, absolutely none. I can't remember a song, or a sound. I can't remember what my parents sounded like and none of my memories carry, for want of a better word, a soundtrack. I can remember what I was thinking and what others were saying, but not hearing them say it, nor any other sound. I also don't dream in sound, at least as far as I know. All my dreams are silent.
And yet, and it's a big yet. I have an excellent memory for voices and sounds. Like many autistics I have near perfect pitch, at least when I'm hearing others sing, or music playing. Just don't ask me to reproduce it, because I can't. If I meet someone I haven't met for a while, then I will almost certainly not recognise their face, or remember their name, but there is a very good chance that I will recognise them from their voice. I am also very good at detecting accents. Even the slightest hint of one in, say, an actor pretending to be an american, will get me searching Wikipedian to see if I am right about their actual nationality.
So, if I can tell the sound of a Honda CBR engine two blocks away, or a voice, or an accent buried deep, I must have the memories to compare against. And yet... nope.
@clacke@pathfinder@actuallyautistic
Plus when you look at the health problems you can get as you get older sux. It makes it harder to function in society basically. All the wears upon you then you add generational a trauma it’s a lot for many of us to navigate without assistance. We obviously think differently. Extreme hyperphantasia in adults hyper phantasia, more vivid recall. Cited by nih I can get the paper :)
No matter how well I learnt to mask, no matter how well I learnt to get on with people, if not in any deep and meaningful way, at least superficially. There has always been one skill that I have never mastered and that is simply the ability to not upset people and especially without having the slightest idea how.
Or that I didn't for a long time, anyway. It was only when I realised that I was autistic and that the way I looked at the world was in some ways substantively different from the way many allistics looked at the world, that I began to understand something. Allistics tend to find validation externally, through feedback from the group or the part of society that they identify with, whereas autistics tend to find it within themselves, in their own reason and sense of worth and value.
Now I must stress that in many respects this is a generalisation and obviously there will be a lot of variation and degree in how true this is. But in its more extreme forms, it could very well explain many of the experiences and difficulties that I've had.
Because if someone's self-worth, the value they see in their life and actions, is almost entirely based on their interactions with the dynamics of the group they identify with, or the society they live within and not from their own judgement, then this could lead to certain choices and reactions that are quite frankly alien to someone like me and that I could easily end up in conflict with and all without really trying to.
For example, if the value of a child reflects back on its parents. Then in the extreme case the values and behaviour expected from that child, are not those of the child, but of the parents in terms of the group the child is meant to be representing them in and how well it is doing that. So any sense of divergence from that or criticism of that child, no matter how slight that might be, could easily be seen as an attack on the parents and reacted to accordingly, irrespective of how reasonable or just it was.
Equally, of course, worth, praise, or rewards, can also become divorced from any sense of reality. All that matters is that you, whether that's through your children or not, are being valued, not whether there is any justice to it. Because the truth or validity of it, is not based on how you see yourself, but only on how others see you. And in the extreme case, it doesn't even matter how they came to this view, as long as they have it. So worth can become something to be manipulated and played for and how you really are and how you actually feel about yourself becomes almost irrelevant to this process.
That people could even be this way, that everything could become how you're being perceived and anything that effects that negatively can be something to be attacked, is still something that I struggle to understand. It is so foreign to my nature. But, it certainly explains so many of the times that I've upset people, because I wasn't playing this game, or seeing the world the way I should and didn't even realise it.
@pathfinder@EVDHmn@actuallyautistic For example, I was pretty blunt with myself because I knew I could've possibly offend myself. It never really occurred to me that I might be hurting myself.
For me, knowing I was different was just something I grew up with. As I aged and progressed through school, it was only ever amplified as those around me grew in ways that I didn't and that I couldn't seem to either, no matter how much I tried. In fact, my attempts to do so were often met with ridicule and contempt, more than any real sense of encouragement or accomplishment. In fact, so many of the judgements I received never seemed to be based on the effort I was putting in, the progress I was making, but on where, or how, I should be instead. Praise only ever seemed to come from excelling, even if for me it was simply what was expected, the point of the whole process, or because it was, in fact, easy. Either way, it always seemed meaningless.
Is it any wonder, then, that I have always had a problem with judging myself fairly. I grew up in a world that was not made for me and judged and expected to conform to its standards. I can see that now. But, back then I had no such understanding. I had nothing to compare myself to, no guide to follow. What understanding there was of autism was biblically bad and certainly nothing I could see myself in. All I knew was that I was always misjudged, or blamed for things that were outside my control. That all too often I was underappreciated for the progress I was making and blamed for the progress I couldn't make. Is it any wonder, then, that in the end all I could come to believe was that I was broken somehow and that this was why I was so obviously to blame and at fault all the time.
Or that my sense of self-esteem suffered. It's hard to judge yourself fairly, when you are doing so against the wrong values. It's even harder to judge yourself when you have no true mirror to see yourself in. Or, when others never to seem to see you either. It's easier to fall into the trap of believing that only perfection will do, that it's your only chance, and only the sort of perfection that can never be attained.
Even now, I'm prone to doing this. That always improving, is the key to eventually value. To judging myself against impossible standards and expectations. To dismissing where I am, because it's never enough and seeing praise as unwarranted because of that. It is a hard habit to break, a response trained into me by a lifetime of feeling wrong and of that wrongness being pointed out. It is, perhaps, one of the hardest things about realising that I am autistic. Because, whilst I do have a mirror to see myself in now. Actually getting myself to look fairly, after all these years, is really hard.
@brandon@actuallyautistic
I certainly suspect it explains my over-developed fawn response. The irrationality of so much, without the balance of what I know now, really left little choice.
I have often said, and largely it's true, that I'm fairly open about being autistic. There are a number of reasons for this, but mostly it's because I feel that it's important to be as open as I can be. That by doing so I am hopefully opening people's eyes to the fact that autistic's can be anyone, the bloke they stand next to in the pub, the one they work with, the person they've known for so many years. That we can be any age and anyone.
But, to put this in some context. I live in a smallish town and have done so all my life. For various reasons I am quite well known. I am also male, and single and old enough and secure enough in my life not to give a damn any more. So the risks for me being this open aren't the same as they would be for others. A fact and privilege I am very aware of. I have also masked in a way that, I think, is possibly different from others. I found a way to be essentially myself. To highlight the aspects of myself that were acceptable and submerge the elements that weren't. In other words, I didn't really try and hide the weird, only the true depth of it. So the leap from "it's Kevin" to "it's Kevin and he's autistic" doesn't appear to have been that great for a lot of people.
Having said this, though, it is still not easy. Dropping the mask is hard when you're not sure what is actually mask and what isn't. The internal masking, the ways I learnt to hide so much from myself, is perhaps the easiest, if not the most painless. But the external mask still has so many elements and not all of them are easy to forgo, or even possibly be part of a forged mask any more anyway. Maintain a way of being and doing something for over 5 decades and really where's the difference between you and it?
Much has been said though, about the effort of maintaining a mask over a long period of time. The effects it can have on us. The way the drain of it is more and more likely to lead to burnout. The way that restricting our natural movements and behaviour is harmful, especially in the long run and to our mental health. And I certainly don't argue with any of this. I can feel that strain, the cost of it for me. I also can't help thinking about how much of my aches and pains, the injuries I carry, the growing infirmities, aren't just age related, but caused by how much I've stifled and restrained my body from moving naturally over the decades and the cost of that.
But, as much as this is motivating and helping me to learn to unmask, there is, of course, the other side of the coin. I didn't learn to mask on a whim, it wasn't for laughs and giggles. I was the outlier, the strange, voiceless kid, who came within a hair's breadth of being institutionalised. I was the one who had to learn how to fit in and above all be safe. For that is what masking allowed me to do, at least as much as it could. And this, for those of us who are older, is perhaps one of the major problems with trying to unmask. It's very possible that one of the very reasons that allowed us to live so long without realising we were autistic, was that our masks worked too well. Not just in hiding us, but in allowing us to fit in, in so many ways, if not obviously in all.
And certainly for me there is a deep functionality in the way that I mask. It allows me to behave and to communicate with others in ways that they are comfortable with and understand. Not so much with set scripts, but more a menu of available options, of both body language and speech, that have proved to be viable and effective. It has allowed me to exist in their world and even though I'm essentially a foreigner to it, in ways that don't make that so obvious. But start dropping the mask and that illusion is quickly shattered and then it becomes a lottery how people react. Confusion, rejection, aggression, hate and dismissal. All of these I have experienced and even trying to explain that I am autistic, rarely makes matters better. In fact, it's more likely to make them double down on the necessity for me to do it their way.
For that is what mostly happens. Try not to speak and they insist that I do so. Be too weird in my movements and the most random of strangers will suddenly be up in my face over it. Try to be myself and have to watch the reactions and atmosphere change. Because the simple fact is that most people don't like having to do any of the work or put in any of the effort required to bridge divides, especially if they know, or suspect, that you are more than able to make it so that they don't have to. It will always be up to us, for so many of them. I'm not saying that this makes them bad people, although some of them are, just human and with perhaps too much on their plates already. Extra effort is sometimes hard to justify or find for a lot of people
But all of this simply makes unmasking even more difficult for me. It's hard and not always practical to forgo the functionality of it. And also the safety of it, the reasons why I began to do it so long ago. That difference is still so often a target for so many people, not something to be understood, but attacked and taken advantage off and age doesn't make any difference to that. Even as an older white male, I have to take that into account. The fact that unmasking simply isn't always safe, in so many places and ways.
So will I ever manage it? Will I ever reach the point of being truly open and maskless? The way I want to be. Given my age and how much of it is ingrained and, by now, a part of me. How much safer and easier it can simply make my life, I have to admit that I'm not sure. Let's just say that it's still a work in progress and a hope as much as a dream.
@alstonvicar@actuallyautistic
Glad it helped and that you're making the effort. BTW the AskingAutistics hashtag is available if you ever have any questions.
I once wrote about how it was not unrealistic, to think that there was no such thing as an un-traumatised autistic. About how so many of us have known bullying and persecution simply for being different. Not even always for what we may have said or done, but often for simply standing out; in all the ways that we didn't even know we were. How just simply being, was so often an excuse to be attacked or punished. That our very existence, even as hard as we tried to mask, whether we knew that was what we were doing or not, was the cause of so much pain.
All the scars we carry from misreading situations. Or from believing in something, or someone, and being burnt as a consequence. All the times we've tried to stand up for ourselves, or as often as not for others, and been dismissed and ridiculed. All the misjudgements and disbelieve and times when our intent and purpose have been seen in the ways that were never, ever, meant. The sheer inability for others to see us as we are, or to judge us accordingly. But, always to seem to want to see the worst and to base everything else on that.
But the more I learn and understand about being autistic. The more I realise that so much of my trauma and the scars that were left, came not just from this overt pain, but from the covert well-meaning of others as well. From my parents and relatives, from friends and teachers. From all the advice and instruction I have received over the years that was meant to shape me in the right way. As a child, to teach me how to grow up, how to behave and act. What was expected and what wasn't. And then, as an adult, how I was supposed to be and how a successful life, with me in it, was supposed to look. All the rules I was supposed to learn, all the codes I was supposed to follow. How to act, how to speak, what to feel, when to feel it. What I was supposed to do and how I was supposed to be.
Not in any unusual way. Not in any way that you weren't supposed to raise a child, well a normal child anyway. That's what makes this so covert. If you were trying to do this to a child knowing that they were autistic, then it's overt abuse. It is ABA, it is infantilising and punishing a child for always failing to become something, that they had no more chance of becoming than a cat has of becoming a dog. But for those of us who didn't know we were autistic. It was simply the constant hammering of the world trying, without even realising it, to fit a round peg into a square hole and all the pain and disappointment that came from their failure to come even close.
For me, what made this worse, was that it wasn't as if I didn't know that I was different, not in my heart, but that I thought that I shouldn't be. That I should be able to learn what I was being taught, that I should be able to follow the guidance. That I wasn't any different really from anyone else and so if I failed to act in the right way, or react the way I should, for that matter, then it was my fault. All the patient sighs and familiar looks, simply became just another reinforcement of my failure. Even being told off for the simplest things, became a reminder that something that I should have been able to do, was beyond me and always for the only reason that ever made any sense; that I was broken, that it was my fault somehow.
Is it any wonder that so much of my life has been about trying to justify myself in the light of this, of trying to become that "good dog". Of judging myself against an impossible standard. A constant lurching from one bad to choice to another, and always because I thought they were the right ones. And for each new failure and inability to even come close, another scar, another reminder of what I wasn't. Further proof that my self-esteem was right to be so low. Of how I was such a failure and a bad person. That I was never going to be a proper son or brother or friend. Because I couldn't even be what I was supposed to be, let alone what I should become.
Looking back, I can't help thinking about how much of my life I spent living this way; of trying not to repeat the sins of my past. Of not repeating the actions or behaviour that led to those past failures and trauma. Of, in fact, all the effort I put in to not being myself. Because that, I realise now, was what I was trying to do. I was that round peg and trying to hammer myself into the square hole. Because everything I had learnt had taught me to think that this was how I had to be. That this was how you grew. And in so many ways, I can't help feeling angry about this. About the wasted years, about the scars I carry that were never my fault. About the way I was brought up, even though none of it was ever meant, but only ever well-meant.
this has made me angry and frustrated so many times.
among other things, being punished for not behaving, or simply not BEING, as expected without any direction or advice at all. it was as if people are expected to just know.
i still get angry about it from time to time.
sometimes it makes me wonder if psychosis can be induced and if that was the intention on the part of at least some people.
This has been said before, by many people, and far better than I will. But it bears repeating, probably as often as it can be.
Autism is a neurological difference. We think and process differently. We just don't work in the same ways as others. Most of us, growing up, are more than aware of this. But not necessarily why, or to what degree. We just recognise that we are different. But, this isn't exactly something that can be discussed. Often the feeling is nebulous at best, other times it can feel embarrassing and far too personal. But in any case, trying to talk about things like this, especially as children, is never going to be a particularly safe or wise choice.
So instead, we bury the feelings deeply and try to get on with life as best we can. This is normally done through learning to mask and in avoiding as much as possible those situations where our difference is made most noticeable. In fact, many of us get so good at this that we can wander for years, or even decades, through life without ever reaching the understanding that we are autistic.
But when we do reach this stage, it involves a process of coming to terms with it and understanding what it means. It requires months, often years, of research to come to terms with and to overcome the false stereotypes and ableism that many of us carry. This is what is called self-diagnosis and sometimes it is as far as we go. For many of us it is enough, or we have reached a point in our lives where getting an official diagnosis is not worth it. Or even possible. Many systems, whether on purpose or not, make it all but impossible for people over a certain age, or people of colour, or female presenting, to be able to get officially diagnosed. Or it is simply too prohibitively expensive to even try.
It is for this reason that the vast majority of autistic spaces welcome all those who think they are actually autistic, even those that are only just beginning to explore the notion, the self-diagnosed and the officially diagnosed. Because this is all the actually means, that we think we are autistic, as opposed to those who aren't, but who still want to speak on behalf of or about autism. It is also why the actuallyautistic hashtag and @actuallyautistic group are open to us all too, not to divide autistics into those diagnosed and those not. Because that is simply a distinction over the route to the knowledge, not the knowledge itself.