@actuallyautistic
Do not complain. If you never lived on the street for a while, if you weren't admitted to a psychiatric hospital for a while. If you didn't spend some years living in boarding houses, eating little and badly. If you didn't have a year of your life that you barely remember what happened or what you did and you ate every 3 or 4 days. If you didn't spend 6 or 7 long hours suffering from extreme anxiety attacks before going to the hospital to get an injection. If you didn't spend years of your life without sleeping more than 3 hours a day. If you did not experience dangerous situations because you got involved in affairs and jobs without thinking about the risks. If you didn't travel to other countries in a precarious way because you didn't realize it was dangerous.
That's all part of being bipolar, autistic, and gifted without knowing it, without having a diagnosis for many years of your life. It is part of having tried to be what one cannot be and not being what by nature one cannot help being.
All of these things and many more that I don't like to tell are part of this neurodivergent inner world that gave me a deep major depression when I couldn't take it anymore and from which it took me almost 10 years to recover. Although I can't really talk about recovery because the person I was before that has already died and what I can be now remains.
It's not fun to live like this, it's not funny, cool or an adventure. It's a complete shit life. The only thing that sustained me was that as compensation, nature granted me a high intellectual capacity and great resilience, without which I would not have survived even early childhood.
The wisdom that one accumulates by learning from suffering goes hand in hand with the need for solitude and silence and is the mother of low sociability and a strong awareness of the absurdity of life in general and human life in particular.
Don't get caught up in the alienation that rages in the world. My plans for my future years are to move further and further away from social life. And once I can retire, dedicate myself to what I like for the rest of the trip.
If the world and its herds run in one direction, go the opposite way.
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.
Please stop with the euphemisms. We know what we are, we don't need it explained to us. It is patronising when people try and define our identity for us.
This could be the connection between Ehlers-Danlos and neurodivergence. (People with EDS, like me, are 7 times as likely to be autistic and 5 times as likely to have ADHD -- also like me.)
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.
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.
Doctor suggested I have #ADHD but I don't think I do because:
I am able to force myself to do things even if I'm not interested in it.
I do not like spontaneity.
When I have a deadline, I cannot leave it to the last minute or anxiety would cripple me.
But I do struggle to pay attention unless am hyperfocused. And I do have executive function challenges. And I have to have a project. And I crave dopamine hits.
@niamhgarvey@miffyhelen@actuallyautistic@actuallyadhd Having only recently found out I'm ADHD as well I think one of the biggest factors is that autism & the monotropism that comes along with it mitigates the inattention & distractibility associated with ADHD.
Also one of the benefits of ADHD is that it nudges my autistic self out of its routines & comfort zones for novelty seeking & social interaction. This means I've had quite an exciting life.
I'm beginning to suspect that "High functioning" & "Asperger's" may just be co-occuring #ADHD & #Autism in many, many cases.
Book review #27 for 2024 is Steve Silberman's Neurotribes: The Legacy of Autism and the Future of Neurodiversity. A helpful and informative book on the unfolding journey of and...battles with/for, regarding people who interact with their world differently. I found this book to be helpful in understanding the rise of what we today call neurodiversity. ☕☕☕☕1/2 review. @stevesilberman@books@bookstodon@bookstodon#autism#neurodiversity#books#books2024 #
It has taken me two years to change my bio from "Neurodivergent, apparently" to just "Neurodivergent". Despite being open about my #ASD and #ADHD, the 'apparently' must have been a subconscious way of distancing myself from the diagnosis somehow.
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.
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.
Tweet shared to the FB group Feral Neurodivergent Raging Meme Posting and now here with you. I’ve been down and this was the first thing that made me laugh today. I hope it makes you laugh too. #actuallyautistic#autism#autistic
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.
I voted earlier today. We have two, one for Barangay (Town) and one for Sanguniang Kabataan (SK or Youth Council).
The election rep handling the ballots asked for my ID because he had to confirm my age.
SK (Youth Council) is open for 15 to 30 years old voters.
I look like I'm in my late 20s.
While he did not ask me for my age, better to confirm it with an ID to avoid election fraud, when people ask me, I used to say, "I stopped counting at 30" (now it's 28). It's half-joke, the other half is the truth, people do mistake me to be in my late 20s.
Many #ActuallyAutistics, for some reason, look half their actual age once we enter adulthood. I'm not aware of any scientific explanation regarding this, but it has been observed.
For me, this was not the first time. I was always mistaken to be underage (under 18) until I hit 25-27. It was always funny whenever I was with friends or colleagues because they all reacted. 🤣
It was a 5–10-year gap. Now it's a 20+ year gap. Maybe one day, there will be a 30-year gap with my actual age.
And well, there's like a very persistent pattern in all these self assessment test results 😅
Not as high as yours, but still in the "yes, lol" side of things