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Comment by zmmmmm | Hacker News Reader

This is a really interesting aspect of masking. The thing is, it's often not the direct presence of external scrutiny that drives the feeling of needing to mask, it's a lifetime of having normal behaviour expectations reinforced to a point where they truly internalised that there's something wrong with not doing the "normal" thing. So they will even be masking in private and have to go to great lengths to even discover where they are doing that and proactively "undoing" their private masking in order to allow them to restore energy during their own private time.

All this is often referred to under the notion of "internalised ableism".

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Okay, but isn't this just what all people do? Everyone has a lifetime of normal behavior expectations reinforced to a point where they are truly internalized that there's something wrong with not doing the "normal" thing.

That's called enculturation.

I find a lot very confusing about the idea of masking. Everyone masks, even people who are more neurotypical than autists. Getting along with social life means not showing every emotion, it means being uncomfortable, doing things that you personally dislike or find uncomfortable, feigning more comfort in social situations than you actually feel, regulating your behavior to fit in, etc. And then going home to detox and restore your energy with private time.

I'm not saying that masking is autism is not a thing. But most of what I hear described is just ... normal life for most people ... except perhaps to the degree it is felt or needed.

Most of the challenges of autism are also present in neurotypical just to a lesser degree. No one likes annoying loud sounds but to someone with autism the limit is going to be much lower. No one likes sudden changes but someone with autism won’t be able to handle them as easily. And so on.

> normal life for most people ... except perhaps to the degree it is felt or needed

Well, yes, precisely. Almost everyone can relate to experiencing mild or moderate back pain for a couple of days when they sleep in a weird position, but some people have chronic back pain that makes life unbearable without prescription pain killers.

While talking to people about my ADHD in real life I noticed that many of them speak like they understand ADHD. Even when I try to explain in more detail they come really close to "getting it" by superficially relating to some of the ADHD symptoms, but unfortunately almost all of them end up taking the logical leap to say that "everyone deals with this" and start recommending "solutions".

Most people will never understand ADHD just like I don't truly understand what life is like for people with chronic pain, and that's fine.

People seem to at least conceptually understand that chronic pain = pain like they know it + much worse + never-ending, which they recognize as being awful. The thing that bothers me is that when it comes to ADHD (and autism) the calculation suddenly becomes ADHD = concentration problems they experienced + exaggeration + lack of discipline.

ADHD is relentless, it follows you everywhere, you can take many months off from work for stress relief and it will still be there (I tried). You can make sure to sleep well, eat well, exercise, avoid all stressors, focus on hobbies that make you happy and it'll still be there.

People juggle sleep deprivation, stressful job and/or kids, socializing, chores, appointments on a daily basis and say that concentration problems are normal, and yes, of course they are if you're overloading yourself like that. But many people with ADHD experience those (and much more) at our baseline and if I tried to achieve half of what other people achieve on a daily basis, I would burn myself out in under a month.

Some people might read this and think that this I'm an outlier but I think I'm pretty average as far as ADHD severity goes, I managed to finish university before struggling to keep up outside of highly structured environments, and ultimately getting diagnosed with ADHD as an adult.

What did you end up doing for your ADHD post-diagnosis? Has it fixed your concentration problems?

I'm currently on Elvanse and it's a far cry from being a fix or a cure, but it makes things more manageable. My concentration on work that I find stimulating has always been alright so that hasn't changed much, I'm slightly less distractible during boring work, but it's been most helpful in other areas of executive functioning like task initiation.

For example at home I usually knew which chores needed to be done, and I desperately wanted to do them but I could never get started because I didn't have enough willpower. I would procrastinate for weeks or even months while constantly beating myself up over it.

I still don't enjoy chores, nobody does, but with medication I have noticeably more willpower to get started on things that need to be done. The thought of folding laundry, a task which I always knew would take me no longer than 5 minutes, no longer overwhelms me with dread and I end up doing it in a "reasonable" amount of time (reasonable for me, plenty of people would find it unreasonable if we lived together).

I'm sure most people mask, but the difference between neurotypical and neurodivergent people is how much they mask, and when.

For instance, like many people on the spectrum, I feel discomfort making any form of direct eye contact. When I don't have a lot of mental energy, this discomfort can become quite intense, to the point that maintaining normal eye contact takes up so much mental effort that I can't listen to what someone is saying anymore.

I don't exactly have the "normal" experience to compare with, but I don't believe most people experience that. I've learned the hard way that people don't really appreciate it when you stare at the floor during the entire conversation, so forcing myself to make eye contact has become more automatic over the years, but it adds just a little bit of extra effort on top of what everyone else is feeling.

Sometimes, it's also other tiny issues. Deviations from how things "should be" can trigger an irrational feeling of upsetting. As a kid I remember crying about a door being painted, or the class using a different set of stairs to the normal route because deep down it felt extremely wrong. Even in my teens, having fries on a Tuesday was something I sometimes needed to recover from. I've learned to dismiss/ignore/crop up those irrational feelings, but sometimes they can sneak up on you and become quite taxing. The worst part, in my opinion, is how the mental impact remains despite knowing how absolutely bonkers those feelings are.

I believe I'm not affected as strongly by my autism as some other unfortunate souls are, because people seem somewhat surprised when they learn about stuff like that. I can only imagine how stressful their daily lives must be.

it's absolutely what all people do. The missing piece is you need to (a) multiply the severity/effort required by an order of magnitude and (b) add in a whole host of co-occuring factors like anxiety, OCD etc. that often come along for the ride

It's multiplied in some situations. I'm skeptical of breakfast while alone being one.

yeah i don't disagree about breakfast specifically if it's completely standalone. However it's worth recognising that autistic people in burnout lose a LOT of executive function. Something seemingly simple like making breakfast can actually be challenging if they enter that state. It's really hard for someone who hasn't experienced it to even conceive.

There is a difference between grabbing salty string cheese, a handful of cherry tomatoes and cashew nuts and literally eating them while standing in front of the fridge vs. actually making a breakfast and sitting down with it like a "human".

Well if that's all implied by "proper" breakfast then it's pretty unreasonable to have to choose between "proper" and "skip".

Not really. I would say most people have a morning routine and they just follow it out of habit without thinking too much of it.

That doesn’t explain why both eating or skipping breakfast affect masking. Everyday, everyone either eats breakfast or they don’t, they can’t both be abnormal.

They could be if your options are “skip breakfast or eat something insane for breakfast because your brain and body crave it and it’s all you can manage to get yourself to eat if you are gong to eat.”

Think about how you might react if you were talking with someone about what they had for breakfast today and they answered “a bag of cotton candy and a beer”. That’s really weird right? Like you might be concerned about them for making that choice right? And what if on other days you notice that they’re a bit grumpier or more tired and they admit to not eating breakfast on those days. Now imagine over a few months you come to realize that your co-worker is either always skipping breakfast despite how it affects them, or they’re eating a bag of cotton candy and a beer. You’d probably be really concerned for them. You might even in an attempt to be helpful and supportive try and help them have better breakfasts, maybe even bring in some bagels (even though they always decline). This is an extreme example of course but for some autistic people, they will go through phases were if they eat they can only eat very specific things and those things aren’t going to be “normal”. During that time, the decision to eat or not to eat and the decision for what to eat are extremely fraught things because very well meaning and well intentioned people find the decisions being made odd and feel like they need to “help”. But if you don’t want the help (or worse if you know you should be doing something different but your mind will make you physically ill if you do) all that “help” is really just another stressor on top of everything else.

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