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.
@pathfinder
I had this experience 5 years ago, when I was 48, and I can fully agree. The memories that look so clear in the autistic light, after they were incredibly unclear and confused as a live experience, still pop up every few days today. @actuallyautistic
@pathfinder@actuallyautistic I appreciate you so much, Kevin. You always say these things so well and I resonate with this so much.
I started looking at "just what the hell was wrong with me?!" in 2016 after having to leave what should've been a dream job because it combined my college degree and my professional training. But the social aspects of the small office were intolerable, and I melted down so many times at work that I can't even tell you.
I had no idea at the time that I was autistic. In the years since then, because of online community and a few friends in real life who are also autistic, I've learned a lot about myself and been able to start forgiving myself for not being able to be "normal".
I entered a very deep period of burnout three years ago, after losing my partner and my dad in the same year, and now I am currently working to get out of that.
I sometimes feel hopeful and proud, both, about my neurology and understanding how to work with it better in the world. The isolation of the pandemic was hard, but it allowed me to drop all of the social constructs that were really not serving me.
I appreciate all of you so much! Thank you for being here. But especially you, Kevin. Please keep writing to us. You reach a lot of people in a really profound way.
@pathfinder@actuallyautistic really nice and powerful write! I relate to loads of this! Sometimes, when time is short and I want to shut things down, I mask so as to end a conversation etc. quickly. One day I might get past it, but not yet
@pathfinder@actuallyautistic
I thought most of the world was hypocrites and liars 😂. It made no sense. No wonder I had trust issues. Being a human seemed to have sociopathic tendencies with the whole masking thing. I didn’t know regular people did it. Now that I understand it both clinically and socially I much prefer it.
@pathfinder@actuallyautistic
When did you start connecting the official dots. By official, you realize your everyday life starts to look like your own version of autism? I mean it must take an infinite amount of courage to step out on the ledge.
I was fortunate.
I don’t think my partner would have figured it out so early, I mean they didn’t know know, they knew but because they didn’t read they couldn’t align.
I knew but I also knew I could be wrong.
Their own psychiatrist told them they weren’t 😆. Keep in mind and then told them they were. Then finally decided well yes once you unmask ok. Yes but we will put down adhd since you have that anyhow….
@everyday_human@actuallyautistic
The test I took pointed me in a direction. After that, it was a shit ton of reading and soul-searching and taking and retaking tests. After a certain point, reason doesn't allow you to ignore it any more. True acceptance took a little longer. 😀
@pathfinder How well you tell the story of self-realisation, Kevin. I am still only capable of responding to certain experiences of others, as they relate them...perhaps because I am not quite 2 years into my own self-realisation. Thank you. @actuallyautistic
@Susan60@actuallyautistic
More fine, than not. I still feel like I've had a very lucky life, especially compared to so many others. But, I can't help feeling a bit miffed sometimes, when I realise just how much bloody effort I had to put in, just putting one foot in front of another through life.
(Please note that as I'm British, for a bit miffed, please read, incandescently angry 😅)
@pathfinder Too true. Already, pushback from those who reject 'political correctness', has thrown new barriers up. Disability of any description is bad. When governments actively create disability through neglect, then punish those who they've disabled, there doesn't seem much hope for us😕. It looks like we'll just have to keep muddling along, as we've learnt to do.😳 @Susan60@actuallyautistic
@Tooden@Susan60@actuallyautistic
The UK is currently walking down a particularly obvious and obnoxious road. In part, at least, it's why I have no particular desire to get officially diagnosed.
@pathfinder Lawks, yes. Libertarians are allergic to any form of disability. They're afraid that it's contagious. They certainly seem to have made official diagnoses far too expensive, and convoluted. @Susan60@actuallyautistic
@Tooden@Susan60@actuallyautistic
In the UK they've simply followed the time-honoured practice of reducing the number of assessors and therefore making the waiting lists impossibly long. Unless you have the ability to go private. It's the good old, if there aren't so many being diagnosed, there isn't a problem.
@pathfinder With everything, that's their solution. We had a state government that simply 'erased' the waiting list for elective surgery - thus 'fixing' the problem🤦♀️ The same party is now attacking the present government for 'ramping' at hospital Emergency Departments,(caused by Covid, RSV, & reduced staff...see Covid, RSV, etc.) and the growing Waiting List.🙄 (what's hypocrisy?) @Susan60@actuallyautistic
Thank you for this. I'm just going through the process now. I didn't anticipate it and went in at 45 suggesting there might be something other than depression going on. In my psych interview they told me I was not only unquestionably ND (ADHD) but felt strongly I was autistic. Didn't even really occur to me, although I'd done a number of self tests before where I was always in upper range. But I just figured it was how I'm built and there was crossover. But the subsequent tests all obviously pointed to it, but I still didn't really see it. So I've now been referred to the specialist and I don't really know what to expect or how I feel about it. I know I exhibit many of the traits, but it's been 'me' for so long it feels weird to reframe it. But it was also quite overwhelming because I've always just assumed I'm fundamentally broken and have (sort of) learned to live with that. So it's fascinating to me to hear other people's experiences. I don't really know what to expect from my ongoing journey, but it's interesting to know I might find a potential answer and maybe a different path. I wish you all the very best and hope you're thriving.
@TheBreadmonkey@actuallyautistic
Discovering something like this about yourself is not easy, it's not even painless. It tends to make us look back and reframe our entire lives. Often that can feel like grieving all the "what might have been's", or it makes us angry, even bitter at times, when we see how avoidable so much was. If only we had known, or others had even tried to "see" us as we were.
But, this also gives us access to so much more. To a community and its knowledge and experience. We are no long alone. We can truly begin to understand what being us, is and not only how to express that, but nurture it. We can learn how to shield ourselves and take care of ourselves and to live so much better.
Thank you. I still don't know how I feel about it all and wonder if I'm an entirely different person now. I don't feel different. But if some doctor tells me I'm not fundamentally broken, ironically I think it might break me. I've been so sure there's something wrong with me - not medical or psychological but maybe just defective? I dunno. Don't mean to make this a sad response. I'm fine really (even though I suppose I'm not really). It makes me feel very raw. Of course there's always a possibility they'll tell me I'm just being silly, which will then be obvious and I'll be a very great fool for thinking there's some answer to it all. Sorry. This came out a bit more honest than I meant. I'll try a bit of levity next time. Short version - it's all been quite tumultuous and I don't know how to view myself at the moment, so it's making my head spin. But I super appreciate you sharing and it meant a lot to me. 👍
But i still get a lot from the community, and so much seems to ring true it's difficult for me to consider myself neurotypical now, even if i mask well. And if i become a better version of me through my interactions and understandings, it really doesnt matter if i'm actually autistic or not.
It also helps if you replace the word 'broken' with 'different'.
@TheBreadmonkey@actuallyautistic
You're on the path we've all been on and feeling what we've all felt. Nothing to apologise for. The beginning of the path is rocky to say the least. May I suggest you follow the actuallyautistic hashtag and group, it's for you as for anyone else who thinks they may be or has self-diagnosed, like me, or been officially diagnosed. Even if it turns out that you're not autistic (and personally I wouldn't entirely trust the diagnostic process to give you that answer) you may still learn things that help you to make sense of things, or simply make your life better.
@pathfinder@TheBreadmonkey@actuallyautistic I echo Kevin and want to explain that the actuallyautistic handle refers to being (or maybe being) autistic as opposed to a parent or care provider of an autistic person. Much as they need support, we need our own space too. It’s not meant as a challenge to people regarding whether or not they’re actually autistic. Also welcome aboard (if it fits). It’s a challenging process but has lots of rewards.
It sounds to me like you've been struggling with yourself as if you've believed you're, as you put it, fundamentally broken. One thing the community has shown me is that in so many cases I was just trying to use the machine I've got for the wrong job, so to speak. My router is a terrible wood chipper.
Stay curious! There may not be an answer, but you can still make some beautiful things.
Realising that you're different from who you assumed you are is a big deal and it will take you time to figure it all out.
It's valid to have complicated feelings and doubts, and OK to express them.
One of the ironies of this is that being autistic makes it more likely that we doubt our own experience. This quote from the Embrace Autism site sums it up for me:
"We are lateral thinkers. Our superior lateral abilities generate multiple relevant possibilities for any problem. So we hypothesize what we might actually be and come up with many alternatives. Even if autism perfectly describes us, we may still have doubts because some of our behaviors can be attributed to other conditions."
@janisf@TheBreadmonkey@pathfinder@actuallyautistic What brings me joy and consolation in my road of discovery is this community of people all walking along the same path. I'm NOT alone and I can learn so much about me!
Oh boy do I know the feeling of just understanding from a very young age that you're wrong/different/broken.
It is then very disconcerting to have somebody (or a video, or an article) enumerate a dozen different things about you that are the exact things you've been hiding about yourself (and often to yourself) your whole life. It feels very exposed, very vulnerable.
I can't speak for everybody, but it was a trial for me to take an honest look at myself and accept that, yes, these labels describe me. And then that exposure that was so frightening becomes a freedom. That label which felt like it was going to be a straitjacket is actually the best fitting, most comfortable clothing you've ever had.
I still secretly think someone's going to tell me I'm actually some new thing, not previously conceived of. And that I'm an alien or a wizard or the chosen one. Wouldn't that be something. If it turns out I'm actually the rightful ruler of the universe. Although admittedly I don't know how they'll test for that.
In that case I'm going to assume you are Chesney Hawkes and we're building up to a one of those 90s-style princess/common person swap films, where we switch places and you get to fix my life whilst I live the high life of an ageing celebrity for a bit. With hilarious consequences, some mild peril and a happy ending.