pathfinder

pathfinder, 1 month ago to Autism

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.

#Autism
#ActuallyAutistic

Susan60, 3 days ago to actuallyautistic

Just saw an interesting post by someone missing the simplicity of their childhood. I know that most people wear rose coloured glasses when they’re feeling nostalgic, but I wonder how many autistic people read such posts & think, “No way!”?

I had lots of fun & interesting times during my childhood & adolescence, but there was also so much complexity, confusion & distress. Learning to mask made it easier. I could at least pretend to understand what was going on & therefore attract less negative attention.
@actuallyautistic

pathfinder, 1 month ago to Autism

@actuallyautistic

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.

#Autism
#Actuallyautistic

pathfinder, 1 month ago to Autism

@actuallyautistic

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.

#Autism
#ActuallyAutistic

pathfinder, 24 days ago to Autism

@actuallyautistic

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.

#Autism
#ActuallyAutistic

pathfinder, 25 days ago to random

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.

pathfinder, 10 days ago to Autism

@actuallyautistic

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.

#Autism
#ActuallyAutistic

ashleyspencer, 1 hour ago to random

Does anyone like keeping odd sleep hours?

I fall asleep between 6pm and 7:30pm every night and wake up between 2:30am to 4:30am.

Great thing about social media is that whatever time you are awake, there are always autistic and ND people around the world awake and online.

ashleyspencer, 2 days ago (edited 2 days ago) to random

I can contribute to #mosstodon :)

Added 3 little moss balls and 3 rocks with juniper moss to the fish tank for my future betta fish.

Once the new heater gets here I’ll start the cycle process.

Aerliss, 3 days ago to random

I didn't go to my uni graduation. I didn't see the point. I particularly didn't see the point in spending what amounted to half a day's pay on minimum wage to hire a hat & gown for the day.

Now I'm wondering if part of it was the #ActuallyAutistic urge to not be perceived? I dunno. I have no problem being on stage, or public speaking if I have a script. But the whole marching across stage, recieving some paper, shaking hands, being ME, all while being watched and photographed?

Nah. No thanks.

chevalier26, 2 days ago to random

@actuallyautistic #actuallyautistic Anyone ever tell you that you were being "too negative" or a "Debby downer" when stating facts about something? Just happened to me earlier with my family. In this case it was reasons why I prefer not to travel often (routine change haha). The whole time I was thinking, "but I'm not trying to be negative..."

darrellpf, 2 days ago to actuallyautistic

I used to think I didn't really script. Now I realize that's pretty much all I do, every moment. Not just one script but many possibilities.

I think that's why I have such trouble in group conversations. By the time I choose the exact right words the conversation has already moved along. That also means I stay silent in most group conversations because what I want to say lags what I'm hearing.

Same idea with awkward pauses in one on one.

@actuallyautistic

ashleyspencer, 15 hours ago to random

How is this?

Says “autistic & neurodivergent” now

chevalier26, 4 days ago to actuallyautistic

What are your thoughts on self-diagnosis being belittled by many in the autistic community?

For clarity, I’m not asking to start a debate, just a genuine discussion. I currently don’t have the option to get a diagnosis, but feel fairly confident that the research I’ve done over the past year and a half has been legitimate and credible.

I don’t feel comfortable saying that I am definitively autistic, but I am ok with saying I’m “self-suspecting.” #actuallyautistic @actuallyautistic

darrellpf, 4 days ago to actuallyautistic

Is there a term in the autistic world for "outing" someone? In the gay world we have often very accurate "gaydar".

I was watching a mom and son on a television show. On one hand I want to talk about them and their interaction, but on the other hand I don't feel right about "diagnosing" them, particularly in a public way.

@actuallyautistic