Why do both eating a proper breakfast and skipping breakfast affect your masking negatively? No one is around, what difference does it make?
All this is often referred to under the notion of "internalised ableism".
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.
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.
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).
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.
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.
Masking for neuro typical people is very easy, even if emotionally draining. My wife is the perfect example - her personality is to be nice to everyone and to connect with people. A lot of times this leads to prolonged conversations with people, which then she complains about, but its basically like saying you are tired after going on a long bike ride - there is some enjoyment in the activity.
Whereas for neuro-spicy people, masking is the equivalent of spilling seeds on the floor and having to pick up each one with tweezers to put them back. Its both exhausting and not enjoyable.
If you recharge at night, that's a lot of socializing.
A lot of people in the advocacy space use it to mean basic things like being well behaved or being nice to people. Everybody has to be well-behaved at work. Everybody has to consider the feelings of others etc.
The idea of "wearing a mask" in the sense of being polite is older than the notion of masking in autism. For example, P. G. Wodehouse used it a few times in the 1920s to refer to the social expectations made on aristocratic families. E.g. from 1922:
> I didn’t like the chap, but we Woosters can wear the mask. I beamed a bit.
In this sense everyone masks. In fact they mask almost all the time from the time they get up until maybe the time they go to bad. Masking in autism originally referred to something different that was specific to autism.
The way it's used now it essentially just means "it's harder for me to fit in." Which is true but doesn't tell you anything about autism from a psychological point of view beyond the obvious fact that it's harder for us to fit in.
Thank you for this comment. As a family member of a young AuDHD person I am continually battered by a combination of their behavior (which directly and un-ignorably degrades the experience of everyone around) and by various 'advocacy' ideas that use phrasing like that to not-so-subtly imply that it's actually our bad for daring to expect to "not be hit," or to not be forced to constantly base our whole lives on one person's preferences, etc.
It's tough sometimes to figure out what's real, what's a fair expectation, what's something that can be learned/unlearned, and what's just inevitable.
Focus in the effect if the person's action on you, and set hard boundaries for yourself.
Note that boundaries are in this specific form:
"If you do X in Y situation, I will do Z"
The consequence to the instigating person (the Z part) is important. The person you described likely has a deficit in empathy, so feedback on actions has to happen to modify behavior.
Note that I'm not saying to hit back. Consequences are generally best when withdrawing something of value than adding something of negative value.
For example: "If we're watching a movie and you are physically rowdy, you will have to leave the living room and entertain yourself in your room".
Focua on how things affect you, and what actions you can take in response to boundary breaking behavior. Then be ruthlessly firm and consistent about it.
Sorry, but I have to correct this because it's a common misunderstanding. It's actually a name collision.
People on the autism spectrum struggle with theory of mind, which is also called "cognitive empathy." We can have difficulty understanding the mental states and emotions of others.
On they other hand, we're often higher than average on what's called "emotional empathy" or "affective empathy." Many autistic people get very distressed when others are unhappy or are suffering. For example, autistic folks are over-represented in the animal rights movements and other movements to reduce suffering.
Somebody who lacks empathy in the everyday use of the word is someone who does not care if others are suffering. That is not a symptom of autism, and never has been going back to the start of research on the topic.
HOWEVER - the person I was replying to was mentioning them being hurt by the behaviors, and that signals a lack of empathy from the individual doing thise actions.
Even apart from behavioral disorders, there's comorbidities -- autism is comorbid with ADHD and ADHD is highly comorbid with a lot of conduct disorders and personality disorders.
So it could be any of that. But my basic point is that for the person I'm replying to all of this complexity simplifies if you instead focus on the effect of the other person's behaviors on you. That's what you have control over.
Short of breaking their spirit there's not much the parents can do to make them less wild. Parents have to try to find a way to let the kid be wild and feel good about being a temperamentally wild kid while also recognizing that there are limits and boundaries. A similar experience is perhaps owning a dog that needs to run around outside every day.
But nothing in the autism or ADHD diagnoses says you can't learn social skills or that they shouldn't. Nor does it require anyone to endure abuse or physical attacks.
Assuming you're not the parent (since you say the more generic "family member"), probably the best thing you can do is try to befriend this kid and learn a bit about what's like to be them. And try to find traits in yourself that help you see why they act one way or another.
Another thing to keep in mind is that things you take for granted may be very distressing to this person. They may be able to hear noises or smell smells or taste flavors that you can't. The parents have a tough job because nobody wants their kid's preferences to dictate everything, but nobody wants to knowingly make their kid distressed when they can help it. That becomes a tough tradeoff when you have someone who is easily distressed by a world that isn't really designed with their brains in mind. This is where things like earplugs and sunglasses can help. It's a bit like being hungover all the time. If you reduce the sensory input everyone becomes less irritable and more even keel.
I figured that was just being an introvert.
Or you might not want to say hello or goodbye in the normal situations they are used. Or small talk. These are all things many neurotypical enjoy.
So it's kind of like going through social interactions with an itch that you're constantly aware of but can't scratch. Or perhaps for a neurotypical person, imagine that you're instead not allowed to make any facial expressions or change in your tone of voice and you have to constantly monitor yourself to make sure you're not doing what is, to you, a normal and unconscious reaction. Of course everyone has to modulate their tone of voice and expression to some degree, but with autistics the gap between how they'd behave 'naturally' and 'what is considered socially acceptable' can be a much bigger one to bridge.
Some of the messaging too is just... off-putting/patronizing. "Brave the grocery store"? I know social situations can be tough on people but it's not you're being asked to kill the chicken and process it or grow the veggies. Is resiliency so low that it's a battle to go pick up necessities?
Maybe I was blessed to grow up in a poor, not exactly stable household at least for a while.
- Go into a bright, commercial space
- All the packets are "shouting" at you with colorful labels
- There is noise of shoppers, a PA system, canned music and/or advertising
- Navigate lots of social interactions with other shoppers around navigating asiles, manouvering carts, who picks what
- Manage a shopping list and find a variety of goods
- Go to the check-out asile. Hopefully you can avoid interacting with a human
- Manage packing bags and paying
- Hopefully noone talks to you as you leave
"Why should x situation be like y difficulty? I don't understand."
"No, you _don't_ understand, because you're not autistic. Which isn't really an insult but it is the case. So why you gotta brush off our struggles like you do get it."
Being autistic is exhausting on a _whole different level_. It is NOT comparable to neurotypicals' experiences except superficially.
Shouldn't a list be a positive here?
What's bad about "packing bags and paying", with "paying" being separate from human interaction? I'm genuinely curious.
Not in socially acceptable ways - people look at you strangely when you have sunglasses on indoors, and when I'm wearing headphones people usually gesture for me to take them off when they want to talk. It's even worse to have the loud noise suddenly crashing in while I have to talk to the cashier - better to have gotten used to it before.
> Shouldn't a list be a positive here?
In some ways yes, but it also brings new problems. What if a specific product isn't in stock? It's also pressure to really get everything - I sometimes can't get everything on my list because it stresses me out enough that I'd rather order some stuff.
> What's bad about "packing bags and paying", with "paying" being separate from human interaction?
Packing bags isn't an issue for me, but paying takes enough concentration that I often stumble over my words, e.g. by combining two colloquial responses. It's always embarrassing and makes the next times I go shopping even more stressful.
Stumbling over your words? Oh well. Who cares. It's a cashier. I did this all summer in a foreign country. Toddler talked my way through it and honestly with everyone. It's not exactly the same, but the pressure is. It's incorrect speech with a person you'll never see again or who won't remember you. Who cares?
Like this all feels like anxiety and lack of problem solving. And I'm not sure I even forgive it because my kid has autism and anxiety and she has solutions for these problems. She's not perfect, but she seems to be carrying on better than what you're portraying here. I also know several autistic people where what you're talking about is just not a thing. I get if you know an autistic person yoy know that autistic person, but they are coming up with solutions that allow them to be without a higher level of stress than anyone else.
When things are hard and you anticipate that you're going to struggle, it's perfectly natural that you're going to develop an anxiety response to those things. It's possible that you will describe the experience through the lens of anxiety even if there is more going on than merely anxiety.
> I'm not ASD just sound and light sensitive do to physical damage. Not a single person has bothered me about this even during conversation.
I'm glad that you have found a means to manage your difficulties and it does not cause you social issues. Bear in mind that someone who is very ASD is "manually" managing social situations which come automatically to "the rest of us." The same social disapproval you casually dismiss is likely a cause of anxiety for them.
> my kid has autism and anxiety and she has solutions for these problems.
I'm glad that she appears to be high functioning. Even those who are might want to avoid the shop because it's just a challenge they would rather avoid today. But for others I can imagine it being all too much.
It's a feeling in the body, a sense of alarm. That sinking pit of adrenaline.
I don't think I have autism but I do get ptsd type stuff occasionally.
I think lots of people on the spectrum would gladly grow vegetables or kill chickens over having to go to the grocery store. Tolerance levels on activities placing you in highly social situations with overwhelming stimuli can be significantly lower for people on the spectrum.
> hyper focus on a very complex cognitive task or dedicate hours of "boring" repetitive practice in a physical activity
That's awesome, take that win for sure that it's easier for them to do that and if one would rather go farm than take place in society then I think that's a fantastic goal to work toward.
It’s sort of built into the definition of a disorder that otherwise normal stressors or negative pressures have an outsized and excessive impact on the person with the disorder relative to what it would be if they didn’t have the disorder.
Think of it like this, if I punch you as hard as I can in your leg, that might hurt quite a bit and make you favor your leg for a few hours. But if you have a broken leg and I do the same thing it’s going to be much worse for you and you won’t recover nearly is quickly. The input hasn’t changed, only the underlying condition that amplifies the results of that input.
And if you had a broken leg and I did punch you as hard as I could, no one would really be “worried for your ability to live” if you complained that my doing that ruined your ability to function today and tomorrow. Because of course it did, you have a broken leg.
Same idea here. Autism makes the inputs excessively intense. The only difference is se expect your broken leg to eventually heal, and we generally don’t go around punching people in their legs. But autism doesn’t heal and we do live in a word of intense advertising and flash in an attempt to grab your attention.
"Why do people need the wheelchair ramp? Is resiliency so low nowa days? Are people lazy?" Lol
It gets worse. I haven't left my apartment in a few weeks. The last time I went out into the world is because I had to appear in court for jury duty. (Yes, it sucked. No, I didn't want to ask for a hardship.)
People experience things in a wide variety of ways. Things that most people believe are trivial can be an anxiety trigger for others.
And for what it's worth, I am not put off or patronized by "Brave the grocery store." That's an accurate description of what I feel every time I have to go to the pharmacy.
And not from a lack of trying, and definitely not because you don’t care?
Because to me, that’s what masking means: constantly checking yourself because you do care, and you do like people, and the last thing you ever want to do is hurt or upset someone, and yet sometimes you do, and that sucks, and you learn from it, file it away in your mind for next time, and wake up the next day with the same happy-go-lucky optimism you do every day until the world beats it out of you.
Skipping breakfast reduces the caloric energy you have. Eating a full breakfast is basically going against your instinct. Optimal thing for autistic people would be a energy bar that is both healthy, has good texture, and makes you feel full.
It's designed to make you lose in a couple of days, which would imply you're not a highly functional autist, and hence I wonder how the heck did you get a job without others noticing your autism?
For example, self care with video games would be different. I think the author was just trying to demonstrate that self care in the normal sense isn't the same to spectrum folks
(of course the other issue there is that I prefer having fixed times in the day to eat)
The idea behind the game is to illustrate that adhering to norms is energy draining, while also letting yourself be yourself results in negative outcomes.
I still don't understand why having breakfast or changing the radio station decreases your masking, though.
That makes it harder to mask, because the decisions I would make with low energy and crankiness are not the same ones I would make if I had eaten. It impacts my ability to converse with others in an effective way.
It also impacts my work output and mood..