#introduction post? Hi, I'm Dan.
I don't generally do social media. And yet here I am. Trying out this Fedi thing,
excited to have a space where I can just be myself.
I'm recently self diagnosed #ActuallyAutistic, #PDA, #Aphantasia, #Anauralia & officially #ADHD (39yo, better late than never!)
It's been so enlightening to finally start learning and embracing who I really am.
Meeting other autistic people has been amazing and is helping me feel less alone.
Question. Some dogs can tell if a person has cancer, presumably by their smell. Does anyone think that some autistic people might be more sensitive to such changes in body chemistry? Not as much as a dog, but more than most other people? @actuallyautistic#ActuallyAutistic
@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.
So, folks, when a combination of autistic shutdown and a major depressive episode due ongoing stress hits you hard, when that final little (or not so little) straw yet again lands on your back... Do you have someone to turn to for help, you can count on?
Two of my closest peeps are dealing with some heavy poopoo themselves, so ain't gonna bother them, and not much they could do either, I recon. Just shut down totally for a couple of hours, like lights out, nobody working in the head office (the butterfly meme here with "Is this dissociating?) Woke up now, and I have no clue what to do, who to turn to (and yes, I've had social workers and nurses and all kinds of professional contacts, but alas, with this particular straw, nobody seems to be able or rather willing to help). Also, is there an "Actually Depressed" group? Seriously, if someone knows a good peer support chat for depression/the worse kind of depression, fling me a PM or something. My old one has pretty much died, no pun intended...
Let’s talk tags on clothing. I hate them and they annoy me to no end. And even if I cut them off, the tiny bit remaining always manages to touch me and I hate it. 😩
I'm leading TWO absolutely free discussion circles for #ActuallyAutistic humans over the age of 40 over the next few weeks. Would you like to connect with others in a safe, affirming, and fun space?
We had dinner with some friends this evening -- five of us in total. After discussing it with Helen earlier in the week, I came out to them as autistic.
I got an interesting set of reactions. Angela (a former headteacher, who I thought knew more about autism) said: "but you're so social." So I said a few words about masking and learning to spend time in company. Lesley replied: "you should have known him when he was young. He was really quite odd." (No, it's fine, we have that kind of relationship.)
I told Angela I thought she'd known for years, and she said she'd suspected it, but only because of my unusual walk. So, if you really want to pass as NT, you need not only to avoid ticcing and stimming, and make eye contact, and say the right things at the right speed, and pull the right faces, but also to get your walk right. Who knew teachers specialised in gait analysis?
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.
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.
So I have #ADHD and suspect I am #Autistic too. I am feeling particularly overwhelmed at the moment and although exercise helps, I am struggling to manage it. Running is a favourite, but it's actually all the stuff I have to do to get ready for a run that gets in the way. My brain hates it. Any tips from those in the know for making that easier? Is there a way to streamline this process?
Another day of trying to trick my brain into cooperating sigh
Sensory overload.
Sound. Light. Even smells...
When I go out, I try to use my NC headphones as much as I can.
I have dark sunglasses to accompany me. And often wear a baseball cap as well.
Overload can also happen from socializing. It takes a lot out of me. Even with people that I care loads for.
Sometimes I just need "me time". Just me, a favorite activity and/or series on TV. No talking. No thinking. Just relaxing...
I think it's one of the more difficult things of my autism. I get overloaded too easily, and when I get to a meltdown, it's bad and takes even longer before I can recover.
Anyone recognize this? Any tips I haven't tried yet perhaps? 😊
Our microwave oven is a sensory nightmare for me. I always try to stop it before it reaches zero and begins beeping. I get extremely anxious over this.
Diary of an ASD Squirrel. Day 186 , Thursday 02/05/2024
So I’ve been feeling ruff as a bears bum for a few days now (again , you would think more regular exercise would take me the other way 🙄) so I planned to try and sleep thru to 8ish. I put in my ear plugs & set the alarm accordingly.
I was awake at 05:50 … a mix of my traitorous body responding to its Pavlovian training & the noise of herself romping round the house like baby elephant , in that considerate way she has.
So here I sit, my brain is moving at glacial speeds & my body feels like a train hit it.
At least she’s in the office today, so a day of peace & quiet!
I hate how little I am able to do at the moment , either thru illness or depression stealing my motivation.
Sometimes I wish I had a child , or a dog - they seem to be highly motivational from what I can see from the lives of others who have them.
I would be a terrible father or dog owner though , so probably best all round that I avoid both .
Oh while I’m on a roll I WISH my tinnitus would give me a break! It’s been screaming so loud in my ears for days now!
Where to go next on my ASD journey has been on my mind for a few days, the GPs completely negative reaction last time I went to see him has ripped me asunder. Where I had a set path now I flounder in indecision. I guess I have to decide if I need to be able to function better in society , or whether I just stick 2 fingers up at society & return to being a hermit.
Had a really epic FO4 session today after I finished my chores & then when Mrs S. got home we went & did our civic duty & voted - me being plagued by dizzy spells, nausea & exhaustion on the walk there and back & her being plagued by her dodgy knee ! We made a right pair, I think the thing that holds our marriage together at the moment is the need for mutual physical support , together we make a whole working person !
Caved & watched the first episode of Fallout - I’ve missed a couple of the games so I don’t know just how true it is to the earlier games, but I (& surprisingly Mrs S.) enjoyed it , so yeah, roll on ep 2 !
Final Thoughts.
Others write of monumental achievements , of beating challenges , or of coping with pain or personal circumstances that would reduce a normal person to jelly. I wish I were that strong.
I defo have EDFitis again , & it seems as though it’s gonna take its own sweet time to pass. Bummer !
Thank you to all those who are helping me on this journey, in a myriad different ways. I am thankful to each & every one of you! 🫂 🫶🐿️🖖
Are you still keeping quiet about your autism? Well, maybe not as quiet as you think.
Helen was chatting to a friend today about something I'd done. The friend immediately said, "Oh, that's obviously the autism." We've never told a soul about my autism, but this friend has an autistic son and she saw it straight away.
@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..."
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.
is the constant internal dialogue a function of Autism's "bottom-up" processing, or a function of shame-based masking?
I'm wondering if I'll ever be able to just act or speak without that layer. should I be trying to act/speak thru the layer of dialogue or should I just let it happen & be less anxious about it?
I guess I'm wondering if it comes from my masking coping strategies or if it's more ingrained and unavoidable #ActuallyAutistic
I think I've noticed On Here that the general consensus is, if you think someone's autistic, you shouldn't tell them. It's too much seeing, or something.
I'm a bit baffled by this advice. I think it would have been a kindness if someone had set me down this path sooner. #ActuallyAutistic
Should you tell someone if you think they're autistic and that knowledge could help them?
I JUST realized what was bothering me.
MANY OF YOU DON'T WANT TO RELINQUISH THE PRIVILEGES OF THE OPPRESSOR OVER OTHER AUTISTIC PEOPLE.
BUT YOU FEEL ENTITLED TO CLAIM THAT MARGINALIZED IDENTITY THEFT
WHILE STILL MAINTAINING THAT PRIVILEGE TO WRITE US OUT OF THE NARRATIVE.
WE CAN'T BE A COMMUNITY UNTIL YOU ARE READY TO STOP MARGINALIZING PEOPLE TO THE EDGES OF THAT IDENTITY