I'm gonna ramble a bit. I usually try to be coherent, and take my time, but I don't even know where I'm going here just yet.
There are assumptions I see in current Mastodon #autism discussions that are misleading or even wrong about so-called "late diagnosed".
One is that those who weren't screened as children must not be "very autistic", and that these late diagnosed persons assume superiority and higher status, and then dominate spaces and talk over the early diagnosed.
Trying to get a sense of this, because I'm very late diagnosed. No doubt there is some validity to this point for some. I haven't seen it, but that doesn't mean it isn't there.
But I will say that some of these "takes" are very much like the toxic views of the "autism parents" on Twitter, who think adult autistics are all "high functioning" or not autistic at all, just people who are frauds and wannabes.
Having said that, being neurodivergent isn't new to me. I knew I was different in my early teens but saw myself as having a very different "consciousness" than others, rather than a different neurology (long story). And I was dx'd as ADHD 23 years ago, and self-diagnosed as autistic 8 years ago, and then received a formal diagnosis of ASD about 2 years ago. So is that "newly diagnosed"? Lol. I've lived the autistic life longer than most on the planet at this point. I'm hardly uneducated in the topic.
So I've known about my differences for a long, long time. ADHD is anything but "new" to me.
As to autism, I think it will always be "new" to me, and yet it will always be something I've lived with all of my life. And I've been alive for awhile.
Included either directly or by implication in some of the comments I've read is the pathologizing of autism, and separating the autistic community into severity levels, a concept that is clumsy and inaccurate, and often results in withholding assistance to those who are perceived as "mildly" autistic or underestimating and infantilizing those seen as "severe".
And it also misses the fact that people who grew up before 1980 (and especially before 1970 or 1960) would not likely be screened as autistic, and instead could be treated as a "terrible, strange, misbehaved child" with resulting parental neglect and abuse (raises hand), or misdiagnosed as any of a plethora of other conditions including schizophrenia (raises hand) or intellectual disability.
They might be hospitalized as needing in-patient psychiatric care (raises hand).
They might be terrorized by siblings (as in fearing for my life in repeated, prolonged, and constant attacks) and left to fend for themselves leading to lifelong trauma and all the self-esteem and others traits of PTSD and c-PTSD (raises hand).
Undiagnosed autistics can be treated with a high degree of neglect, misinterpretation, leading to severe estrangement from parents, and outright physical abuse by parents and siblings.
My mother was autistic (I'm quite certain). My brother was autistic (quite certain). My grandmother was institutionalized and I think that was autism.
But no one knew about autism when my grandmother and mother were born. My mother was delayed in speaking, potty training, tying shoelaces, delayed in learning to read. Because of her differences she was horribly abused by her aunt who raised her.
Oh but she was undiagnosed so she must not have been very autistic. Right?
She had no friends throughout her shortened life, although she managed to do well in college, and received a masters in family counseling from CalTech in her 40s. She spent most of her time reading, sitting in bed at night, when she wasn't teaching "educationally handicapped" children (that was the term in those days... so interesting that she chose that as her career).
She died by suicide when I was 26. I gave her CPR at 3 AM, and I'll never fucking forget those staring, dead eyes. Fuck, fuck, fuck.
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.
a. Did anything teachers did give you particular difficulty?
b. Did you have any teachers who were particularly helpful? In what ways?
c. How did you feel about "group work" ?
@actuallyautistic
As I continue my quest to understand and drop so much of the masking I have been doing for so long, I have come to understand something I've been kind of aware of for awhile. That whilst I have never cared about what strangers might think of me, in fact I've always considered this to be somewhat of a strength, I've also always been hyper-aware of how I might be being perceived. This, I now realise, is not the contradiction it seems. My not really caring is just my way of seeing the world. That how others see me is just their view. That it doesn't necessarily reflect me and that unless it's coming from someone I care about or respect, it's unlikely to affect me. If somebody doesn't like the colour of my hair, or the clothes I'm wearing, for example, well that's just their choice and nothing to do with me.
Constantly thinking about and trying to be aware of how others might be perceiving me though, was I now realise always about keeping myself safe. Not in the particulars but the overall. Is my mask (as I now know it to be) slipping, am I being too me, standing out, being too different. Because none of that had ever gone well for me. To give even a simply example, I literally can't even begin to count how many times complete strangers have called me rude to my face, simply because of my tendency not to speak much. And these sort attacks against my fundamental autistic self were always the ones that hurt. Because before I realised I was autistic I had no defence against them. No way of explaining, even to myself, why simply being me should offend them so and also why that shouldn't matter to me. Not on the personal level, any more than any other comment, but only on the "god, what an ableist git" level. But you can't get to that level unless you know it exists and you can't know it exists until you know why you're different. And that took me over 53 years, which is why I'm only just realising this stuff now.
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.
since am one of those #ActuallyAutistic people Dx at the tender age of 50 (yes, 50. and yes am older now, shut up), am not acquainted with the american rituals of national days or awareness months involving autism.
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.
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.
Especially interested in suggestions from the #ActuallyAutistic community.
My 3 year old has just been diagnosed with #autism (level 3 for communication, level 2 for sensory). He is (essentially) nonverbal with limited other communication skills. He destroys tablets and tries to eat (or feed the HVAC vent) PECS cards.
They recommended outpatient speech therapy in addition to at school. That's cool, but... 1/
Hi 💜 I'd like peoples opinion on this topic and I'll try to keep it as short as possible. The question I want feedback on is:
Am I in the right to believe something is off with me and want help, or am I trying to find excuses?
A very broad question I know, but if you want to stick around for a minute here's some background info condensed into bullet points
(Also my esteem/confidence is like zero so posting this makes me deadly anxious, very sorry if I'm too lengthy, I have no other way of expressing this)
Been in the medical health system since 2020 for depression after failing my master's thesis work
I told them maybe it's ADD/ADHD or similar because some family members has it, but they denied that because:
• I'm being treated for depression, it would be impossible to tell them apart (That's fair)
• I've made it through school/higher education on my own (The part I'm not buying, reoccurring argument)
I ask my family about it, which is a taboo topic apparently, and they say I don't have it because:
• My younger brother has a ADD diagnosis and his needs are more severe (dyslexia)
• I've made it through school/higher education on my own
(Also, I should stop finding ways to excuse my laziness)
NOT DEPRESSED anymore according to my doctor and myself, but my issues still stands, which is why they finally in 2022 started putting me in queue for a diagnosis
• For the record, I've had medically treated depression at five occasions throughout my life so far, and they all seem to happen when there's been a major change in life or I've stressed out about the future
-// Things I feel correlates to having potential neurospice or similar
Executive difficulities
• I can't for the life of me organize anything, and if I try I die inside midway through and gives up (turning a big pile of things into smaller piles that I then put back into the big pile)
• There's always something that seem more important than organizing, even if the chaos at home contribute to me feeling like a complete failure
• Can't keep track of things in my head. If not noted down they're gone immediately
Dreams big -> Huge plans -> Burning passion -> Burnout -> Feeling like a loser -> Repeat
The few times I focus on something, my body hurts from sitting in some awkward position working on it for 6-8 hours without rest (And it feels like 20 min, wait it's dark already?)
-// Things that might not have any correlation
The greater half of my friends that have stuck around is official neurospicy, including my spouse (they just seem more real to me)
Sheep 💜 (I just really like them and I've realized they've become my fixation for the last couple of years)
-// Things that would "deduct credibility points" (?) (It's basically me gatekeeping myself)
I have no issues with eye contact and I prefer seeing people IRL (Although I get awfully tired after prolonged sessions of it)
I can sleep throughout the night (Quite the gift imho), although I never really wake up rested
There is obviously way more to this but it's already become an essay and still only scratching the surface
If you made it to the end of this, congrats 🎉
If no one ends up reading or responding, it's still a win for me, because I have something to refer to if I get asked and put on the spot
Thank you for your time, have a nice day 💜
Ok, so I've promised @Freedom_Press an article about #autism and #anarchism, but I'm too overwhelmed to write a proper article, so here's a thread with my thoughts so far.
I'm just finishing up a novel. I've been writing screenplays & other story-led narratives for decades. Classic structure has been drummed into me. But then, when I was diagnosed as neurodivergent, I thought, 'Hold on, maybe the traditional story model is actually a neurotypical device...'
I decided to let my #ADHD/ #autism write my novel. In doing so, I have developed a new revolutionary storytelling model. You're welcome. @actuallyautistic #writing#amWriting #amserious
If you are well organized, it is a healthy trait. no one would say you are "on the OCD spectrum".. but when that trait gets out of hand we would say you have OCD, and likely would be diagnosed as such.
I see (autism) ASD and ADHD as much the same way. Most people diagnosed with it who are high functioning dont really have it at all. It is just a personality trait and all in all a positive one. high-functioning ASD are just people without social hangups, good. And people with ADHD who are high-functioning are largely just amazing multi-taskers.
The harm in putting people on a spectrum is they see themselves asa diseased, broken, something that needs "consideration.. they arent, in most cases in the right proportions these "diseases" are in fact just super powers, things more people should wisht hey have really.
RIP Donald Triplett (1933–2023), who at the age of 5 became the first person to be given the newly-conceived diagnosis of autism. In the writings of Dr. Leo Kanner, the child psychiatrist who came up with the diagnosis, Mr. Triplett is referred to as "Case 1."
Almost unilaterally, non-autistic people began describing themselves in terms of their relationships to others– if they were a parent, a spouse, what their career was, where they lived, what their religion is, and what their roles were related to others (sister to a Senator, military brat, pastor’s wife, soccer mom, etc.).
And, almost unilaterally, #Autistic people described themselves as what they loved to do, what their values were, and what they had experienced. Many even said this, having intuited the basis of the theory. Among the answers were, “I am a verb,” or “I am what I love,” or “Who I am is what I do.” Autistics would answer, “Lover of Justice,” or “Dreamer,” or “One who values autonomy.” Some would describe themselves as a “lover of” or “obsessed with” an intense passion, like trains, lichen and fungi, or theoretical physics and black holes.'
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.