Imagine with me for a moment.
Imagine a teacher telling you there’s a big exam. They don’t tell you what day it’s on, what time it happens or what chapter in the textbook it will cover. Oh, and it’s your entire grade. You’re under immense pressure to get all A’s and this one class will ruin you if you score lower than an A.
Imagine feeling your stomach knot up because you don’t know how long you have to study, you don’t know what to study and the textbook is like 500 pages long.
Imagine crying every night as you try to power through all this information, but it’s impossible to retain it because there’s so much that you forget as much as you absorb.
Imagine crying when you wake up every morning afraid you missed the exam because nobody can tell you what time it is.
Imagine being stressed to the point of shaking and chewing your fingernails off whenever you go to class because today could be exam day and you’re nowhere near ready.
Imagine it finally being exam day. You were finally able to find out what time it is last night. You got an email at 2am saying the exam is at 7.
Imagine being unable to sleep because you’re afraid you won’t get to class in time.
Imagine going to school feeling exhausted and plopping into your seat in class. The exam starts…and it’s from a new edition of the textbook that everybody except you got, so all your cramming and preparation for the exam was for nothing.
Imagine you bomb the test even though you gave it your best. But you are so angry that you weren’t allowed to adequately prepare for reasons that are entirely not your fault, but the failure is still on YOU. You walk out of the classroom crying in rage, kick every locker you see and go home to bury yourself under pillows for the rest of the day.
Imagine feeling like the only loser who failed that “really simple” exam and being reminded of it every time people talk about school.
That is what it feels like to be autistic and have my routine constantly shuffled around, have plans changed on me last minute and not getting enough info to prepare for something because the people who informed me of the change won’t give me any more details. All of a sudden I’m in the middle of huge sensory unknowns that I can’t prepare for, so the likelihood of having a very public meltdown may be extremely high.
Can you understand the utter frustration and helpless feeling? Do you understand how scary that is?
Be kind to the autistic people in your life. Don’t shuffle routines without warning. Don’t change plans at the last second without seeing if they’re okay with that or not. Try to be as informative as possible when mentioning something that’s coming up. Even if it’s something like “June 10th at 10:30am, dress for hot weather and expect it to be loud” is a lot more helpful than “it’s June 10th.”
Don’t get frustrated with an autistic person if they repeatedly ask you about something that’s coming up. It could mean they’re worried about it, are afraid you’ll forget about it or are hoping you have more than vague information to give them.
Please, even if it’s the thirtieth time in an hour, try to answer nicely. Reassure them about their concerns if possible, let them know that you haven’t forgotten about it(or thank them for reminding you if you did) and give them information as it becomes available, or tell them that you’re working on finding out.
Knowing that you’ll make sure it works out, that you remembered and that you are trying to find out about missing info can ease some worry. But make sure you actually DO look into it and pass along relevant info as soon as you know it. You’ll save the autistic person and yourself a lot of stress.
This whole scenario applies to autistic people who can talk and don’t need a lot of daily help as well as the nonverbal autistic people who need lots of daily help and can’t make their communications understood.
Actually, this goes especially for caregivers of nonverbal autistic people who need lots of daily help and can’t make their communications understood– it’s so easy to drag them through your day and forget that they have wants and needs too.
If a major part of their routine is something like walking in circles around the living room while watching Star Trek reruns before dinner, tell them about it instead of dragging them out the door at a time they’re expecting to stim by walking and enjoying their favorite show.
Because what you’re doing is the equivalent of telling somebody you’re going to a silent mime show and then taking them to a noisy construction site instead. Their brain is prepared for a quiet experience, so their mentall walls aren’t up. What do you think is gonna happen?