For those of you who discovered that you are #ActuallyAutistic late in life, like me, how do you feel about how you were raised and had to adapt and mask vs how autistic children who were diagnosed young learn to deal with it?
I'm thinking about my experiences vs my son's...
I am very very glad that he hasn't had to experience the negative treatment that I did, but there were positive aspects to it. I don't want to have to mask, but I am glad that I can.
Just thinking about how I can better guide him, while trying to help avoid the hard parts of life...
@m This is a great question and could probably be pondered for a long time! Will be interesting seeing others’ replies.
What comes to mind is what helps me most today. It helps me when I can learn to recognise what I’m experiencing, particularly when it is outside the expected or norms. After recognition comes learning about it more deeply, discovering supports if it’s a challenge or leaning into it if it brings joy.
Today I find it hard to validate my own unique experiences and overwrite even my own emotions with what I believe are the socially accepted ones. I wish I had someone when I was a kid who would have helped me learn to do this for myself from a young age.
My parents are/were (one passed) highly likely ND and don’t/didn’t know it. Had we all known about the family’s neurodiversity, about our own neurodivergence, it would have been a wonderful experience to practice learning about others’ unique experiences, learn how to support them, etc.
You helping yourself through this process now is just as important as helping your son. How you take care of yourself in ways that are unique to you will help him see it’s okay to be the only one experiencing X. And it’s important you know you never need to be perfect in any of that. It’s much more about the journey than it is a destination. Being on the road toward self care and compassion and self acceptance is what it’s all about. And it sounds like you are definitely already on that road!
This is a long one folks, but I'm on my Vyvanse and I wanted to talk about what it meant to me realizing I wasn't neurotypical as a 40 year old person.
Discovering I was neurodivergent as an adult, as a middle-aged adult, has been eye-opening.
First, I learned that I was never the lazy, stupid, not-trying-hard-enough, can't sit still, "stop moving!", "why are you humming?", etc person I was always told I was.
I was able to look back and see that the world was hostile to people like me and that it wasn't my fault and that, contrary to what I had been told, I wasn't broken.
I was just different.
I could see myself and my life through kinder eyes and stop repeating the abuse that I experiences from people trying to push me to be "normal".
I could silence the voices in my head telling me how worthless I am.
I could understand "why" I was the way I was and why it wasn't something I could simply change away if I had enough will power.
Anyone who is late diagnosed can relate to that.
You are not alone.
You are not defective.
You are just different.
And, yes, it made me acutely aware of all the internalized ableism I had toward neorudivergence. I thought I was broken and wrong and needed to try harder. I thought everybody was supposed to be normal, neurotypical.
What I didn't expect and never realized is that I was using those same harsh, unrealistic guidelines to judge others. I was being an asshole bitch to other neurodivergent people.
I felt like I was doing them a favor by pointing out their faults because that's what had always been done to me.
I thought that was the right way to relate to them.
I didn't see them as kindred people to join hands with but as broken people who hadn't been pushed hard enough to get get better like I did, that hadn't learned all the masking techniques I had learned, that didn't push themselves into meltdowns trying to be "normal". And I blamed them for it.
Because I had always blamed myself for my life, and so had everyone else.
My problems were my fault so their problems had to be theirs.
I was part of the problem and I didn't notice until I received a diagnosis. I didn't notice until I understood that being the way I am is not an error or a problem to be solved and that the world of neurotypical folks is unusually cruel to people who think differently or who don't value the arbitrary rules of culture.
I see my friends, my family, my co-workers all in a different light now. I recognize their neurodivergence and, instead of seeing it as a flaw or weakness, I just see it as a difference. Better, it is a difference that I have been taught how to accommodate by the neurodivergent community at large and by mental health professionals helping me.
For the guy at work who is clearly an undiagnosed autistic, I make sure I spell out everything explicitly when I send an email or a message so there are as few ambiguities as possible. For the folks with ADHD, I do not take their inability to stay on task as a personal attack.
I'm trying to give them the kindness and compassion that I always appreciated even before I was diagnosed. I want them to see that they are not broken or wrong or backwards. They are valued human beings and they have their own strengths that a neurotypical person would never be able to reach.
That autistic guy makes some of the most thorough documentation you'll see and, if you want someone to tell you how to do things by the book, he's the one.
For the various ADHD folks, I know when I have something novel and new, I can rely on them to jump in and give me fast feedback and opinions.
So, finding out you are neurodivergent doesn't just help you see yourself and your past in a new light; it helps you see everyone in your life in a new way.
That's why it's important to know.
The discovery of my neurodivergence has been a blessing in disguise, for, together with other crises, it forced me to examine my life.
https://www.yourautisticlife.com/wp-content/uploads/2024/08/mohamed-nohassi-odxB5oIG_iA-unsplash-1024x683.jpgPhoto by Mohamed Nohassi on UnsplashI know for a fact that some people won’t accept that neurodivergence is a blessing at all. These folks sometimes wish that they would be able to do away with their own neurodivergence, and be neurotypical, because it would make things easier. They are most likely correct. Some things would be easier. It is easier to live your life if you do not spend most of it strategizing to avoid shutdowns, meltdowns, and burnouts. This much is true.
Truth be told, sometimes, too, I have fleeting thoughts about how easier my own life would be if I weren’t neurodivergent. I wouldn’t have to wear noise-cancelling headphones, and look out of place, when I go to those events where they blast music. I wouldn’t have to deal with social anxiety, insomnia, reflux, shutdowns, etc. The list goes on and on.
However, I am quite certain that, without me being autistic, my own life wouldn’t be better, overall. It would, in fact, be a much poorer life. I bet the same is true for other people, though I cannot be absolutely certain of this. Perhaps the realization that neurodivergence is a blessing requires the perspective of age. I discovered my own neurodivergence at 50. Therefore, I never had to think about it as a young person.
At any rate, neurodivergence, for all its ills, provided me a great boon: it forced me to examine my own life. Socrates said it best:
“The unexamined life is not worth living.”
According to Plato, these words were uttered by Socrates at his trial, when he chose death over exile. The authorities had accused him of corrupting Athens’ youth. Yep, the “for the children” moral panic goes at least as far back as the time of Socrates. There is also a flip side to this saying. It is this:
“The examined life is worth living.”
Perhaps a better wording for both sayings would be that the unexamined life is a wasted life, and thus, the examined life, is a fruitful, not wasted life. There is a danger here. It is to think that what I’m arguing for is that those who cannot examine their own lives should be treated with less respect than those who can. This is not what I am arguing. Treat everyone with respect, and try to create the conditions through which everyone who wishes to do so can examine their own lives.
Now, if there is one thing at which capitalism excels, it is at pushing the citizens who happen to live under its edicts to live an unexamined life. In order to be a good capitalist citizen, all other considerations have to be subjugated to the pursuit of capital.
This is perhaps the most evident for those people who have a hard time making ends meet. They must work long hours, and maybe multiple jobs, in order to survive. In this survival mode, there is precious little time to examine their own lives. When you come back from work dead tired, you do not have the inclination to spend time reflecting upon your own life. You go to bed, and the cycle restarts the next day.
This may be less evident, but this pursuit of capital also impedes the ability of the ruling class to examine their own lives. In the capitalistic mind, it is not possible to own enough. One has to continue working to amass more and more property ad nauseam. The rat race never ends, and the rat race leaves no time to examine one’s life.
There is one type of event that is likely to cause us to examine our life: a life crisis. These crises can take many forms. In my own life, I’ve gone through multiple crises: a heart attack at the age of 24, a cancer at the age of 48 (and the disability it entailed), a divorce at the age of 50, the discovery of my own neurodivergence at the age of 50, and there may be other crises that don’t look like crises to me right now but are crises nonetheless.
I expect that a crisis which is apt at causing us to examine our lives has to have certain characteristics. I haven’t cataloged those characteristics yet, but I still can venture some informed guesses. The crises that would prompt self-examination have to be forceful while at the same time not being crushing. My cancer almost killed me. If I had died, it wouldn’t have spurred any examination of my life. At the same time, it wasn’t a walk in the park.
Furthermore, these crises cannot be perpetual. The person who needs to work two jobs to make ends meet lives in a perpetual crisis, a crisis that leaves no time for reflection. True, the fact that I’m neurodivergent is perpetual, but it is the initial discovery that is the crisis. I’ve learned how to deal with my autism. I still continue to learn, but my learning is not as intense as it initially was.
You may be surprised to see in my list the discovery of one’s own neurodivergence as a crisis. I do think, no matter how it happens, that dealing with one’s own neurodivergence is a crisis, and one that especially lends itself to favoring living an examined life. From what I gather through talking with other neurodivergent folks, the discovery of our own neurodivergence causes us to examine very carefully, at the very least, which activities we can take on, and which we should avoid. I know I did this.
It is perhaps ironic that, in the case of neurodivergence, this self-examination is spurred by the very capitalist society in which we live. This is because its edicts are so often at odds with our own needs for self-care. What society considers to be acceptable behavior and acceptable demands is so often to us, neurodivergent people, unacceptable.
Now, I’m not saying that all neurodivergent people are experts at examining their own life. However, this examination is so crucial for providing for our own care, that most of us are forced to perform it. Thus it is that we avoid living the unexamined life, and that our lives become in fact fruitful.
Your own life is fruitful, when you examine it. May your own neurodivergence spur you to examine it. May we also work to push past capitalism so that all of us who wish to do so can engage in examining our own lives, for they become richer from it.
please call me "mayz". I'm a 22 year-old late discovered #actuallyautistic cis-female who received their official diagnosis last week. Usually i refer to myself with she/her pronouns but my feelings in regards to #autism are very much all over the place and sometimes my only way to cope is by referring to myself in third-person from an somewhat outside-perspective. so my posts might use she/it/they interchangeably as well as third-person narration.
I'm a creative person. i love writing and reading, i use #poetry and #poetryslam as a way to tame the chaos in my head. music is my passion. I do not go anywhere without my headphones, there is never a moment in which i do not have some favorite song in my head or on my lips. i love to sing and play the guitar. I love all that is soft and fluffy, i have a lot of cozy blankets and stuffies that mean the world to me.
I'm in a monogamous long-term relationship with my boyfriend who is also autistic, he had been diagnosed in his early teens. We have recently moved in together, which makes me really happy. I will block any attempts to flirt or DM's without asking first.
About two years ago i stumbled into a new social circle which mostly consists of nerdy, computer-touching, queer and neurodivergent people. They are pretty amazing and they have been all but welcoming and nice since the beginning. For the first time i had found people to whom i could relate to.
Many months and many conversations later, several people had brought up my autistic traits, including my boyfriend who is also part of said group. All of that has lead to where i am now.
In a way i am torn apart by this official diagnosis. I might write a more detailed post about my appointments later. I hope to find community here. I would also love to connect with other later identified cis-females because we might share some experiences growing up and being socialized as a female with all its expectations, fears and stigma.
There are a bunch of sensitive topics for me, i highly value content warnings. Currently i am struggling a lot. Too many things happened and too many demands are triggering my freeze response or even straight up panic and/or shutdowns. I will use content warnings if i ever write about them.
I will use this account as a form of blogging about my autistic journey and a place to put my thoughts about my struggles into words. But i will also write about my autistic joy and things that make my brain happy. You're welcome to join me, we might learn a lot from each other on the way! :blob_cat_innocent:
@pathfinder hello :) i do not mind that at all. i find it very interesting to talk to people older than me and see how different but also similar experiences can be
@mayz
If you haven't already learnt this. If you follow the autism hashtags and the @actuallyautistic group, you'll find we're quite a lively lot. So hopefully you'll find plenty of interest and be able to add your viewpoint and experience so that we have a chance to learn from you. 😀
I just want to shout out all the older (40+) Autistic and Neurodivergent folks here. On most of the social media sites I'm on it seems to be nothing but teens to 20's so I don't get to see a lot of experiences and viewpoints from older ND's except here. It's really awesome to hear from you and see you making your way through life and know that you're the way you are still, and that life hasn't completely glued the mask on you and you still experience the joys and experiences and difficulties that us younger folks have in some ways. It gives me hope to know that I'm probably not going to just be increasingly camoflauging to be like neurotypical folks as I age and I can look forward to still living life my way, maybe even more so. You're important and appreciated. <3
@arcadetoken Thanks!! I was not diagnosed until I was 63 and was still on Twitter at the time. The ND community there was lovely but, as you say, much younger with a whole different set of experiences and expectations.
The @actuallyautistic here is quite lovely with a variety of ages and experiences. I find the people here incredibly supportive and I feel very comfortable with them.
Did anyone else's female family members teach them how to "be feminine"? Like, style their hair, do their makeup, wear dresses?
I was a tomboy until years after I moved away from home & in hindsight I think it just felt safer & easier.
For a long time, I resented my mother & aunts because none of them ever sat me down & taught me how to be a girl or woman. I'd look at my friends & younger sisters & it was obvious that they'd gotten the message.
1/2 #SelfEsteem#ActuallyAutistic#femininity
@gremlinchild No one ever taught me either and I felt the same.
I remember an aunt, who I’m not that close to simply due to living far apart, once taught me maybe 1 basic fact about makeup. That was about applying a base layer colour for eye shadow. And that’s it. But I was amazed! And that’s only because I was given makeup as a gift one Christmas and she happened to be there when I was puzzling over it. Magazine tutorials etc never made any sense or looked right.
Been given ‘girly’ gifts and I just don’t understand them. Much prefer functional things. I get more joy out of that. Makeup etc feels like changing myself to please others as I simply don’t understand why someone would do it.
Have since learned a few things, but only really since my 30s or so. I wanted to wear better makeup for my dad’s funeral and so went to a large department store that did a makeup demo on me - only stumbled across this being possible by chance! And yes, that’s basically how I do makeup now and maybe forever!! Very little change. Often just wear none.
Same with hair, except I was basically reprimanded by my mother for having unwieldy hair. AKA my hair is naturally curly, hers is not, and she had no idea what to do with my hair except extremely painful brushing and making it all seem like my fault. So, I’ve been unlearning that for a decade or more - a very rewarding journey. Mother continues to ask in vain when I’ll “style” my hair (with artificial curls) again as it gives me a “perfect” look, versus natural.
Clothes - I found this a bit easier to study and understand. But I still couldn’t understand colours. I have since paid someone to help with this! 🤣 I now know what colours suit me and that basically most don’t suit me… So this is why copying friends didn’t quite work! I wear what I want, but I do like knowing which colours can make me look half-dead so I can avoid those when wanting to make a good first impression!! 😆
@AnAutieAtUni@gremlinchild@actuallyautistic my mother tried to show me how to perform femininity, but she's not overly fem herself. As soon as I was old enough to pick my own clothes it's been mostly black jeans and quirky t-shirts which solves the problem of what colours work lol. I think I found my style at university when I was introduced to heavy metal and goth music. It hasn't changed much since 😜 I still don't do makeup, but I have worked out how to stop my curly hair looking frizzy.
If you haven't seen the latest stream from HealthyGamerGG on autism yet, you haven't missed anything.
Of course a lot of autistic people will praise it, because he talks about how hard autistic people have it (or in his case "peope with autism", he even says directly that you're not an autist, but a person with autism in the video), but it's just a reiteration of the "standard informations" on the topic through a medicalised lense.
Today I have been playing the "COVID or autism" game.
Testing negative for COVID so it's that I'm uber run down from such an awful week last week with too little sleep, too much heat and too much routine getting ruined.
It's so frustrating. I know it's because the heat & routine ruining & then the socialness of the repair cafe all last week has knocked me for six, but it's so hard because I worked so hard to take care of myself through all that but nothing can prevent the brain mess and resulting physical issues of having my routine destroyed.
@alexisbushnell@actuallyautistic
The inevitability of the autism tax. No matter how careful we are, all things carry a cost that always comes due. I find it's best just to accept this, if not like it. :bear_hugs:
I’m fed up of fumbling in the dark regarding my suspected #autism so as someone still awaiting an assessment, I turn to my fellow #ActuallyAutistic folk for advice.
What’s the first place I should look to understand all of this? Is there a website or book that helped you as you started exploring your own condition? I regularly use the above hashtags but I feel like I’m stumbling around in the dark, not knowing what to look for. If your advice is UK-based, that would be perfect. Thanks! 🙏🏻
@benjamincox This is such a great question. I’m tagging the group tag @actuallyautistic so that your post (asking how autistic people explored their autism) gets seen by a few more people.
I’m in the UK and discovered I’m autistic in 2021. I stumbled across the idea that I’m autistic by joining a university webinar about neurodiversity, which I knew nothing about beforehand. (I thought it would be about neuroscience!) That webinar had staff and students from all around my uni talking about their first-person experiences of being autistic (and/or: ADHD, dyslexic, etc). That obviously worked well for me to start me off on this journey.
Might be worth considering what format you’d like to learn about (your) autism. Live webinars, videos, books, blogs, social media conversations, podcasts, in-person chats with other autistics… the options are endless. I could reel off a few ideas for each one, but there’s a lot!
I was initially drawn to learning from other autistics who shared a similar characteristic to me. For example, female and/or similar age and/or a university student, etc. Starting this way helped in the early days of learning about myself. For example, I enjoyed Katherine May’s autobiographical book, The Electricity of Every Living Thing. For tonnes of other books related to autism by autistic authors, have a browse through this amazing resource: https://autismbooksbyautisticauthors.com
I also enjoy listening to / watching interviews with autistic people talking about their general life experiences. Could be podcasts, YouTube videos, webinars, etc. Sometimes these have a tendency to oversimplify things, but I find it reassuring watching someone speak about it all.
Social media has been a massive resource for me too. I love following the hashtag #ActuallyAutistic - the group tag I used above works a bit better on Mastodon but does the same thing. (You need to follow the @actuallyautistic account and then you will see automatically boosted points that tag it). I followed people’s social media conversations and asked my own questions of the online community this way, too. I also followed people who post a lot about autism - especially autistic advocates of autism, authors, etc. There may be more of these on other social media networks like Instagram or LinkedIn now. The above hashtag is a great way to find them anywhere (but doesn’t work quite so well on Mastodon).
I also used my university account to download and read a lot of research papers on various aspects of autism. This worked for me because I’ve been studying an adjacent field with some overlaps, so I was putting what I learned in my degree to good use! I craved scientific knowledge and this really helped. It’s not for everyone, though.
For UK specific things: I love whatever Pete Wharmby shares. His books are great, and other things he shared too like posts on LinkedIn / elsewhere (sadly not on Mastodon), YouTube videos. I really relate to his way of describing things. Finding people with similar experiences to you can help unpack those experiences. After that, I recommend exploring and listening to input from the wider autistic community because you might realise we share something in common: that we’re all so unique that no one has the exact same experiences as any other. At first I found this fed my imposter syndrome, but now I want to celebrate it more and more.
For a compassion-filled view of autism by The World’s Friendliest and Loveliest Autistic Autism Researcher (ok, he PROBABLY is this, but there’s a bit of competition! Lots are friendly & lovely!), check out Dr Luke Beardon’s books. He is based at Sheffield Uni and runs a Masters course about autism, and has had lots of praise from autistic students who he has supervised. His words have helped me be kinder to my autistic self and understand myself better at the same time. Slim books in plain language.
If there’s a specific aspect of autism you’re wanting help understanding or a type of resource or anything else more specific, just let me know and I’ll see if I can suggest some things. 💗 Hope this helps, though.
yes, come join us over here on the Actually Autistic side of mastodon!! we have cake! 🍰 (or whatever your safe foods are! ) you don't have to be alone. welcome welcome!
Question for the #ActuallyAutistic crowd, especially those who also have #ADHD (boosts welcome):
I've seen people with autism share their experiences here and found much of it oddly familiar. Much is explainable by my existing ADHD diagnosis, but some less so (e.g.: some sensory stuff). My doctor doesn't think so because I "can make eye contact". Is it worth seeking a second (professional) opinion? 1/2
Most of the things that can't be explained by ADHD don't impact my life too severely, but I wonder if there are options that help with autism that might be more beneficial than just treating the ADHD alone. 2/2
a teaching colleague who I know but not well (who I don’t like - he comes off as a detached mansplainer) messaged me in social media: “call me when you get a chance” because he has a “poetry venue idea” for me
ugh
UGH
Yes, this could be helpful info, but why is it being held hostage in exchange for an unnecessary social interaction, on the PHONE no less???
“Hey sean, venue x might be a good spot for poetry. Lmk if you want details” is fine. But this?
@darrellpf
I agree. I hate news teasers. I do social media for a eco org, and I never do teasers, I put very basic facts, and a link. A fascinating fact, and a link. I hate having to click a link to find out wtf they meant in the first place. @seanwithwords@actuallyautistic
We're both getting on in years. She's older than me and she's worried that if she goes before me (not imminently.. 20 to 30 years at least I hope) I'll be on my own without friends.
I keep telling there's a difference between being lonely or being alone.
I don't really have a social life outside of my wife and her friends (and I consider them HER friends rather than mine) but that's fine for me #autistic#ActuallyAutistic
I love my alone time, and I would feel very much like you are if someone kept emphasizing to me that I need to go make friends.
I don't know how I would feel being alone for an extended period. I've been alone for 2-3 weeks and not felt particularly lonely within that time period - but I also knew my wife was coming back.
My very small social network (2-3 close friends) is almost exclusively online. When I don't talk to those people regularly, I feel lonely. That makes me think that socializing online is enough to fend off the loneliness, but I'm not entirely sure.
Honestly - you know yourself better than anyone else. If you've given it some thought and concluded that it's not important to you, and you don't feel like you're missing anything, that's perfectly okay and valid.
@DoctorDisco@actuallyautistic
I am by nature very solitary. Always lived alone and very happily. The lockdowns for me were a dream and heaven
However, as I get older and with only a couple of nieces left to call my family and virtually no support network I am conscious I may have to change my ways somewhat and begin to work on that a little.
Just not entirely sure how yet.
i'm yet another #ActuallyAutistic#trans lady on Mastodon! i'm an aspiring writer, musician, and digital swer, but not in that order. i rarely know what i'm doing and i think (hope) that's where i get my charm. i mostly just post about the #books, #crochet, #JigsawPuzzles, and hopefully some cute pics.
i'm also in my witch era right now, so i might offer some free (and likely very inaccurate) #astrology / #tarot readings when the mood strikes 💜
@pathfinder@actuallyautistic I've definitely seen people get confused by it, but I've been around the autistic internet long enough to remember how the hashtag got started 😅. thank you for checking that i knew though 😊
I wonder if its an ADHD and/or autistic thing to have your interests go hot or cold all of a sudden? Find I was enjoying a lot of video games lately, now its podcasts and book reading. #actuallyautistic
@SHODAN I'd like to know the same! I'm autistic but have wondered about some ADHD qualities.
First something such as graphic novel reading is hot: I borrow piles from a library and devour them. Suddendly they don't interest practically at all but I pick up my guitar and start churning out new songs.
The most important things come back to me. I can be sure that at some point I pick up the graphic novels or guitar again. It just might take half a year or three years before it happens.
Right now I seem to be in between of special interests. Let's see what's next.