I’m sure that’s definitely part of it!

Hmmm interesting idea

Totally. What do you think we should call it?

Since realizing I’m autistic I have had a few big areas of skill regression that have really concerned me. Mainly sensory sensitivity leading to overstimulation, and just total exhaustion after any kind of social activity leading to a deep sense of need to be alone for a long time, like many many days in order to recover.

I think about this a lot about what it means because I used to mask everything so much that I could go all school semester passing as a normal human, just quirky. Then during break I would get sick and fall apart like my body was just waiting for permission to take a break.

Summers were always a time of much deeper depression and I think about it now as burnout. But I always pulled myself back together to perform the requisite behaviors.

Now I have given myself permission to give myself accommodations with regards to sensory overload and recovery after socializing, I recognize it better and understand more what I’m feeling. But that makes it seem like it’s there * more *

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For me, my problem with this approach is first of all I can’t cheerfully say feelings a bit rough. That does not compute. But also, in my experience, if I say anything remotely negative that creates social pressure for them to ask for more details. “Aw I’m sorry, what’s going on? 🥺”

But while I don’t like lying about how I am, I also am not comfortable talking about my personal problems with people I’m not close to. So I would really prefer to not be put in this position in the first place.

Maybe we should consider if it is appropriate for us to know about someone’s personal problems before we ask “how are you?”

If the answer is, ehh probably not appropriate, we should refrain from asking that because by doing so we are creating social pressure for the answer to only be positive, whether or not that’s true.

I have decided to try and practice saying “hi hope you’re having a nice day” instead of how are you to people I’m not close to. I think that reflects what we’re really trying to say with the “how are you” in reality - we are wishing the person well.

It’s like the Russian formal greeting Здравствуйте (zdrast-vyui’tye) literally translates to "Have health!

My problem with this is that while I don’t like lying I also really don’t want to talk about my personal problems with someone I’m not intimately close to. So honestly, I would prefer if people who aren’t close to me don’t ask the question in the first place.

Like I’m not going to tell you that I’m having mental health issues this week and I’m about to lose my shit because everything feels overwhelming and I’m not sure it’s worth it anymore. So no I’m not really “getting through it” right now. But it also is going to be very challenging for me to lie to you right now also.

So maybe don’t presume that we have the right to that information in the first place and just say something in greeting that doesn’t require someone to divulge, honestly or not, private information about themselves.

I’m going to try to implement a “Hi, hope you’re having a nice day” instead of how are you to people I’m not close with in practicing this.

Best comment in this whole post

I was just thinking this morning about what are we actually trying to say in America with the “How are you?” fake question so that I can try inserting that instead and I think it’s really like the Russian hello, Здравствуйте (zdrast-vyui’tye) which literally translates to “Have health!”. We’re not really asking how someone is, we are trying to say “I hope you’re well”

I could see myself being able to apply this concept in like a retail situation by saying “Hi, hope you’re having a nice day 🙂” when I come up to the counter instead of “hi how are you?”

I think there’s a lot in your comment to talk about and I certainly don’t think you’re wrong about a lot of things. I think if we were in person we could have an engaging evening of discussion that will be harder to do in this way online but I will try to expand just a little more.

Your comment made me think about something that’s been brewing in my mind a lot recently but I’m not sure it’s entirely fermented enough to put down into words yet.

It has to do with my reflection on interpersonal relationships with people who I suspect might be ND but are either closeted about it or perhaps don’t even know themselves, people who have put a lot of work into analyzing social norms and applying those lessons in themselves so that they can pass as normal. I suspect these folks I’m thinking about are autistic in large part because of their rigid sense of social norms rules, and their clear anxiety when they see people eschewing those rules.

I was afforded a lot of freedom to be weird as a kid. I learned social rules for in the classroom quickly, but outside that I was very lucky with the kids that were around me. And since I loved school and learning so was missed for my ND I just grew up understanding myself as someone who was a weirdo but was accepted for that.

What this means in this context is that I find myself often triggering the above group of suspected ND folks who I think were probably not as lucky as me and who learned to be very rigid in applying social norms in order to be accepted. It smells of trauma, right? And how could it not be trauma. Being rejected as a kid is probably the most primitive danger we face outside of actually dying.

The point I’m getting at here is that I don’t think you’re wrong in a lot of ways but I think there has got to be a middle ground where yes we are learning the social norms and applying those lessons in order to provide the social lubrication to get along and succeed, but ALSO educating the world at large that Neurodivergence exists, is valid, and should be accommodated. I just really believe that the vast majority of the reason ND is not accommodated is because of unintentional ignorance.

So you clearly have had a lot of experiences with people who you felt were not trying hard enough to learn and apply the social rules. So that has shaped your perspective in this discussion.

I have had so many more experiences of the opposite where I have seen people living with intense anxiety constantly about their ability to fit in, and failure despite all their efforts. People who are killing themselves with stress, leading to burnout, depression, substance abuse, abusive relationships. All of this i see as a direct product of them never being given permission to be themselves, be different, advocate for their needs.

So I don’t think we are actually at odds in this discussion and I think if we were able to talk in person we would find that out.

Yeah I understand how my phrasing would make anyone feel defensive. Maybe you might attempt to understand why the phrasing you used in the comment I was replying to might trigger someone to want to tell you that.

“Fine, thanks, and you?” Sounds fine (ha) I think but “I’m fine” leaves a lingering doubt like you’re holding back from saying something negative for some reason. And heck, maybe I’m the only one who was harassed for saying that, but I get this anxiety now every time I’m inclined to use it that the person will ask me what’s wrong that I avoid it to my own annoyance.

I love learning languages, thank you for sharing the Turkish! That’s really interesting

I resonate so much with that. I think this is the nature of social change. We fight however we are able until we cannot anymore and then others take up the torch. I struggle with bitterness about other fights I fought before that I burned out from. Maybe I’ll learn from those lessons and definitely have learned more about myself so I’m working on recognizing burn out before it ruins me. If not, well I’ll learn from that too. It’s all we can do. I’m proud of you for recognizing your needs and prioritizing that for now, for however long you it takes.

I would love to learn more about autistic experiences in other countries outside America. What are the social protocols that they struggle with?

Haha my bad for assuming, maybe because you said daughter my brain just thought Mom idk I feel dumb. But being non-white is definitely also known for being missed for diagnosis.

And something I’ve been thinking a lot about recently is that in the medical profession “diagnosis” is reserved for people whose symptoms impact them to a very specific (and arguably arbitrary) criteria of severity. And these criteria are constantly being challenged and updated since autism and ADHD (the conditions I’m most familiar with) are still very misunderstood and research is ongoing.

But, in my opinion based on my understanding as a layperson with a special interest in psychology generally and autism and ADHD specifically, these conditions are Neurotypes that are spectrums. And so many people like myself, and perhaps yourself, may have a lot of symptoms but have managed to fly under the radar because we were able to get good enough grades in school for example, and have good enough social skills to make and maintain friendships, and get and keep jobs, all to varying extents. But inside, unbeknownst to those around us, we have been expending 10 times, 100 times the energy that most people use in order to meet those expectations put on us. And we just assumed everyone was struggling this hard with everything. But it turns out it’s not supposed to be this hard.

And that’s why you see most autistic and ADHD folks diagnosed with other mental health conditions, like anxiety, and depression in particular. Anxiety because we learn to be on high alert for when we are not behaving in the socially acceptable way so we are constantly in fight or flight mode in order to stay on top of those expectations. Depression because it’s fucking debilitating to be using so much energy to meet those expectations and constantly being on edge and constantly feeling like you’re failing or messing up. But the root cause of all that is that our brains are wired differently and society is not made for us.

I thought this was an absolutely excellent video about the Black experience with autism and getting diagnosed, still a little long half an hour, more focused on children but super valuable for adults as well. https://youtu.be/NyVfL8FZ_Vg

This is a really excellent video by Melissa Simmonds who is Black British and autistic and a parent. It’s almost an hour long and talks about being Black and autistic and the intersection of race and disability and culture and white privilege. I really appreciated learning about her perspective and the effort it took to create this presentation. I hope that it might give you a resource to find more information that you will relate with or find helpful. https://youtu.be/LW-C_MVxNEU

Here is a YouTube channel by Bri Booth where she shares her experiences as a late diagnosed autistic Black woman that I’ve only seen a little bit of but I really liked the way she expresses herself and makes her videos. https://youtube.com/@BriBooth

And here is a video I really appreciated by Jessica McCabe on her YouTube channel How to ADHD where she interviewed 13 people from 4 countries about their experiences being Black with ADHD. I don’t know if that will be as useful, although the comorbidity rate for those with autism to also have ADHD is up to like 80% so I’m hoping some of these folks might lead you to additional resources https://youtu.be/oh-3ULQJiEY

Unfortunately I couldn’t find any YouTube channels that were specifically about the experience of late diagnosed autistic Black men but if you happen to find some and remember this comment, please do let me know because I would really like to learn more.

❤️I swear we’re gonna get this all sorted out. Maybe not in our lifetimes, but we’re gonna help it get there. Just by having these conversations we’re gonna make it happen

I disagree that it will never happen. I think it’s already starting to happen. Part of it is ND tiktok and Instagram and Reddit/Lemmy and YouTube educating people about it and helping people get diagnosed, part of it is research is ongoing allowing therapists/doctors to get better educated about these conditions, and yes part of it is ND people just deciding fuck it I’m done masking in this specific way in this specific environment and learning how to advocate for our needs and ask for accommodations so that it becomes better understood by NT and more commonly seen.

But I agree with you that for now my energy is best spent providing myself my own accommodations and protecting my energy. I love love love talking about this stuff online in the autism communities.

This post went bigger than any of the others I’ve made so more NTs came in asking to be educated and riling me up, so I have spent more energy talking to them about this than I would ever normally try to do. So far none of those comments seemed to sink in at all lolsob, in accordance with the prophecy. They tend to just ignore what you say and then repeat what they said before and add an “it’s that easy” to the end. And then you slap yourself in the face and do some breathing exercises and walk away for awhile.

But the value I get in engaging with ND folks here is life changing. Just sharing our experiences with each other, commiserating. Makes me feel less alone and gives me spoons somehow. Gives me perspective, and sometimes tips, and resolve to prioritize my needs, and forgiveness for when I can’t do the things that I feel I’m expected to do.

Anyway I’m rambling again. I just wanted to say I understand your sense that it’s hopeless, and I’m sorry that you burned yourself out in that way and I hope you’re taking care of yourself and that you have some people who support you.

It’s hyperbole yes, but there’s a kernal of truth to it.

Consider that this conversation is one example of the hundreds of examples ND people experience every single day for how they are asked to mask their initial reactions/responses/preferences for seemingly arbitrary meaningless reasons “just because” that’s how it’s been done and no one wants to care about how it impacts us day in and day out.

Consider how it is a cumulative effect that builds up. Frustration, embarrassment, confusion, annoyance, sadness, hurt, yes even rage at the stupidity and injustice of it all.

These are the emotions ND people in your life are experiencing every day all day as they go about trying to survive and fit in in a world that is constantly telling them that they are wrong for the way they instinctively react to things and their preferred ways of being and interacting are not only weird and wrong but somehow disturbing and put a target on their back for disrespect or worse, bullying, being ostracized, fired, or targeted for harassment.

Try to think about that before responding. Really think about what that would be like for someone to live with every single day in every interaction with other people.

Oh, they can pretend. They can pretend so freaking well that loads of people have ZERO idea they are experiencing any of this. They just see them as a little shy and a little weird. A loner. Creepy maybe. Or maybe they are so good at masking you don’t even see that. You see a happy friendly person. Meanwhile inside they are so fucking tired.

All of these stupid little dances we have to play in order to be accepted. When being ourselves, why would that be so bad? It doesn’t make any sense. But whenever we try to unmask, society very quickly shows us that is not acceptable.

“We refuse to learn it and adapt to it at our peril”

See that’s the entire whole encompassing point of this post. We are literally “in peril” either way. We are all sick, literally burnt out exhausted from all the adapting and masking we are doing every gad dang freaking day to these arbitrary stupid social protocols that serve no purpose. I’m ready to stop. I’m ready to call it out and ask society to change itself for once. ND are literally killing ourselves to fit in and it barely ever works anyway! Accommodations are for everyone, meaning everyone benefits. Just accepting that this is how it is is fucking bullshit. How about NT have some personal fucking growth and acknowledge that they have not given half a shit about how much ND people have contributed to society while being shat on CONSTANTLY for being socially different.

Our brains work differently. It’s equivalent to being from a different culture and speaking a different language. Many NT can learn to accept this and adapt their own behavior out of respect for this other person. It’s far past time we stop looking at Neurodivergence as a disorder to be suppressed, and instead as a different way of being that is just as valid and that society needs to accept, truly, and adapt to accommodate our needs.

If you are asking this question you haven’t read enough of the responses to this post. Consider refraining from commenting until you have read more and listened and reflected on the experiences of others different from yourself.