For parents of autistic kids...
Scenario: Your autistic child wants you next to them all the time, and they flip out if you try to get up or leave the room. You literally have to sit by them in order for them to stay calm. You can’t figure out why they go into meltdowns if you move or try to leave the room and it’s frustrating.
Yep, I understand. I’m autistic and sometimes I struggle with “all the things and people have to be where I want or I will get scared” situations.
It’s about predictability. It’s knowing I will turn my head and see my door is ajar instead of closed or wide open. It’s knowing my shoes are where I put them. It’s knowing my dad will be in his bedroom after dinner and mom will always use the bathroom and flush the toilet before she leaves the house.
Sometimes somebody closes my door or leaves it open. Sometimes I kick my shoes off too hard and they end up under the bed out of sight. Sometimes my dad stays in the living room after dinner. Sometimes mom doesn’t stop in the bathroom if she’s just nipping outside for something real quick.
The environment that has been predictable is suddenly DIfferent. My heart races, I feel all my senses rise up to full alert. I’m ready for a fight or to run for my life.
I can get this when I go to the supermarket with mom if we don’t go up and down the aisles in the “right” direction and I will go into a huge meltdown because seeing the aisles the “wrong” way literally makes my body hurt like an all-over toothache. My mom understands this, so if an aisle is blocked off for cleaning, she’ll tell me to go over to the next one so I’m going the “right” way and she meets me there.
I tell people “only close the door halfway” to stop the door ending up in a position I don’t want. If I can’t find my dad after dinner, I yell for him and he’ll say “out here!” (yes, even if I see him, my brain tries to say he’s in the wrong place and his voice makes his position more “real” to me.) I’ve learned to look under my bed if my shoes are out of sight and I usually find them there. Mom will call out to me “only going out for a sec!” and I know the lack of a toilet flush isn’t Wrong. I still feel unsettled, but it’s not a full on fight / flight response.
In the case of your child getting upset if you move, talk to them. Tell them “I’m going to get up and go in the kitchen to make a phone call to (whoever you’re calling). You can watch if you stay quiet. I’ll come back and sit by you again when I’m done.”
Tell your child what you’re going to do. Lay out the steps if you need to, so they know what’s coming. They may still freak out a bit because they know the what and not the how, but knowing the what can make the how a little less of a surprise.
If the phone rings, somebody pops over unexpectedly or anything happens that you suddenly have to shift activities, talk the child through it. Be honest if you don’t know what is going to happen, but stay with them if you can, or tell them who you will leave them with if you have to leave them with somebody. The child may still freak out big time, but maybe next time the freakout won’t be as bad because they remember what happened last time.
Yes, do this even if they are nonverbal and don’t appear to respond to you. Trust me, they understand what you’re saying. They may even recognize their response is not helping and can’t stop themselves. Giving them a little bit of what to expect can make an OMG SCARY situation feel more like “this really sucks and it’s uncomfortable, but I’ll be okay!”
As an autistic person, that feeling of the future being in dark fog is intimidating. Sometimes shedding some light only reveals more fog, but at least it’s not dark and I know all fog has to pass or dissipate eventually. :)