Imagine adult you waking up one morning & deciding not to get dressed, but stay in pajamas because it’s comfier and warmer. You look at your desk and think “I’ll just sit down and check my email really quickly.” The emails then lead to tasks,
1/19
which lead to doing work.. And you keep thinking “I’ll get up to get breakfast soon.” You have that thought maybe every hour, or whenever you look at the time on your computer. You think “I’ll just finish this and then I’ll get up..”
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and it’s not that you don’t want to eat breakfast, it’s that you can’t get your body to physically get out of the chair. Eventually you realize that it’s been 5 hours and you haven’t gotten out of your chair. You realize this and know you need to eat but you simply can’t. 3/19
You have to finish this one more task, and then that’s it! It takes you another hour, but you finish the task. Then you finally are able to get out of the chair and are worried about getting too light-headed or passing out since you haven’t eaten for so long.
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You manage it though, and you pour yourself some breakfast in a cereal bowl, even though it’s already the afternoon. You sit back down and eat it all very quickly and feel a lot better. You try to remember not to do that again.
5/19
Now imagine you’re 10 years old. Imagine the same scenario, but instead of checking emails, you have to do your homework on the computer, or watch TV, or play video games. Every hour you think “I know I need to get up but I just can’t, I’ll just do one more thing.” 6/19
6 hours later, you go to the kitchen to get breakfast. Your parent walks by, looks at you in pajamas pouring yourself a bowl of cereal and says exasperatedly, “Why are you still in your pajamas?! Why haven’t you had any breakfast?! What have you been doing all morning?”
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You feel bad. You can’t explain that you couldn’t get up out of your chair, that you had to finish things. That not changing into clothes in the morning caused you to mess up your schedule, or that you just weren’t in the headspace to find the cereal, grab the cereal,
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pour the cereal, get the milk, try not to spill the milk, clean up the spilled milk.. You just couldn’t do it.
Instead of explaining this, you’re so hungry that you just cry. Or you yell at your parent. Or you say “Well I’m doing it now aren’t I?!”
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Or you walk away in silence to your room, close the door, and eat breakfast by yourself in silence.
The next time you as a 10-year-old sit down in the morning without getting breakfast, you only realize you haven’t eaten 3 hours after you starting doing something.
10/19
Then your parent’s yelling pops into your brain – “Why haven’t you had any breakfast?! What have you been doing all morning?” Without realizing it, you get more anxious. You know you need to get up to eat but you can’t. And you’re worried that your parents will complain
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about you and yell at you. You already feel so terrible because you know you’re supposed to follow your routine but you just couldn’t that morning. Eventually you wait so long that your stomach starts hurting, but you still can’t get up.
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“Maybe I’ll just pass out, at least my parents can’t yell at me then,” you think.
How we react to other adults when they don’t adhere to structure or when they can’t do something, and how we react to children when they don’t follow routines or when they can’t do something,
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is very very different. We are constantly telling children, especially neurodivergent and disabled children, that if they can’t do things, they’re bad. And parents aren’t trying to do this, but it’s the implied message.
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Notice that the parent in this scenario didn’t say “You shouldn’t have done that” or “I can’t believe you didn’t eat breakfast sooner!” – but that’s how many children will interpret parent’s anxiety or confusion.
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This might seem strange but I truly think treating children more often like we treat adults (with proper support and accommodation) would greatly help reduce conflict in moments like this.
Why do we expect children to be perfect or to do what parents ask 100% of the time?
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Is that what adults do? Is that what any human does? There’s a lot of talk about how little parents expect of children, but just because they’re not “doing a lot” doesn’t mean they aren’t overwhelmed or stuck or working.
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A child can have zero chores to do but can still feel like an anxious messy burden who can’t do anything right (school is really good at making kids feel this way btw). As a society I feel like a lot of traditional parenting is simply focusing on the wrong things.
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It's not about what a kid does or does not do in the span of hours or days or weeks - it's about how they feel about themselves.
Shame and anxiety are huge inhibitors to attempting anything, especially new things & especially expected things. Focus on that & not the task.
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You will never be able to prevent every single bad thing (teasing, bullying) from happening to your autistic child.
Something you can do?
Don't tell them to change who they are because you think there's slightly less of a chance they'll be bullied. 1/5
There is such a strange notion out there:
That if you tell autistic children to change their behavior, their interests, or their way of speaking to "fit in,"
the autistic child will be forever protected from bullying and ableism. 2/5
Please don't pre-emptively tell your child that who they are or what they like is wrong or should be "hidden" - You're just telling them those things before bullies do it.
That's it. You're just giving them that shame and anxiety earlier so they're "ready" for the bullies. 3/5
Autistic autism nonprofits need to stop putting "Women" or "Girls" in the title of their nonprofits
if they also actually support autistic people who aren't girls or women. 1/3
Like it's really great you want to support women + other genders, but also I don't want to be associated with a "Women's" nonprofit because that means I will likely get misgendered by other people (not the org itself, but people who see it).
Like just.. yea I'm not a fan. 2/3
Also at some point an LGBTQ+ autistic nonprofit really needs to be created cause there's a huge hole there. 3/3
Things you can try to do to protect yourself on twitter.
1. Think "Do I have the spoons for this?" (usually it's no!) 2. Use the mute function, mute people and conversations. 3. Recognize that other people are upset to be upset, not because they want a conversation with you.
4. If you're mildly frustrated/annoyed by something, consider - "Is this worth arguing with people on twitter about?"
If no, just keep scrolling. 5. You don't owe anyone your time or explanation, esp. when you don't have the spoons. 6. You can't control other people.
7. You cannot "fix" or resolve other peoples feelings or emotions, especially if they read your tweet in a different way than intended. 8. You do not exist to make everyone else in the world happy with what you say on twitter. And it's probably not worth the effort to attempt.
"In another study, people were ready to decide whether an unfamiliar face should be trusted after looking at it for just 200 milliseconds. Even when given a chance to look longer, they rarely changed their mind [6]."