If you’re a parent, you have experience getting some major side-eye in church when your kiddos get loud.
That side-eye gets a little wider if your kiddo happens to drop an f-bomb during the Gospel reading, just cuz. You know, it feels good rolling off the tongue. So he drops it 57 more times before Liturgy ends.
Or maybe it’s head-banging that just. won’t. stop. What about screaming, just for fun (or not)?
This is the hard stuff of autism, and it’s really hard for a community to know how to handle it. And definitely, this conversation has the potential to get super awkward. But let me say right out the gate: I am not judging you. I am not saying all behavior should be excused and no attempt should ever be made to change the behavior to fit the context. In fact, I have said it before and I’ll say it again: I believe in the well-meaningness of people. Nobody is wrong to want a holy, reverent space to worship.
But there’s a middle ground here when it comes to a person with special needs, and that’s the space I want to explore with you today.
So let’s talk about what you’re seeing and some good responses to that.
1. *What* is she *doing?!*
She may be: stimming. “Stimming” is short for “self-stimulatory behavior,” which describes some kind of repetitive physical motion or verbal expression that the person finds soothing, or something to help them focus. If you’ve ever bounced your knee or clicked your pen over and over, you know how good stimming feels. This is a common coping mechanism for autistic people to use when they’re feeling over- or understimulated.
Or she might be: Flaring up. An autistic adult once told me that she uses this term in place of meltdowns, because it describes what’s happening in the brain a little more accurately and also doesn’t carry the implication that the person is broken or wrong. I like it. Feel free to use it and spread it around. 🙂
Anyway, a flare up can happen when the brain gets too much information and anxiety and physical pain take over. And at this point, it is nearly impossible for someone with autism to control their body or emotionally talk themselves down. They might just have to escape to a safe space and ride out the storm. But until then, there may be hitting or screaming or self-injury and any number of things that might upset you.
This is disaster of the worst kind for an autistic person, so please try to be understanding when this happens, and know that she suffers far worse from a flare up than anyone else around her does.
Or: she’s just trying to cope. A lot of times, she may use repetitive movements to try to prevent a flare up or just to process all of that sensory information that is so abundant during church–incense, candles, shiny Gospels and chalices.
2. What should I do, then?
Don’t just stare at us. We know you can hear. We know he’s being incredibly loud. We’re trying so, so hard to deal with it.
Do act like nothing’s happening. It’s so kind. Or ask if you can help. Even if we turn you away, it means something to us that you care.
Don’t correct me or my child. Even if you think it’s helpful, it’s just going to make a bad situation worse.
Do ask later about the situation without offering your own input and, for future reference, ask what the community can do to make it better for him so that he doesn’t continue to suffer. This tells us two things: 1) that you care about what’s under the surface (we tend to think we’re the only ones who know there’s actually something there, and that just stinks) and 2) you’ve got our backs and you care not just about his behavior but about him and what is tolerable for him.
Don’t touch him or a caregiver if a flare up is happening. Flare ups can be quite sudden and explosive–even if it looks like he is calming down, something as little as a hand on the shoulder can cause danger signals to go off for him, and the whole thing can start over.
Do give the person and his caregiver (if there is one) space during a flare up. If you must check in, do so as quietly and gently as possible, staying back to keep from adding input in his overloaded brain, and to keep you out of the line of fire. If you’re in a situation in which an autistic person is flaring up and there is no one to care for him, follow these steps:
- Get him to a safe space where he will have room to rage, preferably without hurting anyone or breaking anything.
- Give him space and ask what he needs in clear and quiet, concise-as-possible language.
- Stay back; don’t touch (unless he requests otherwise).
- Weighted blankets, headphones, and something to chew on are all good helps and can really calm a person down.
Above all else, keep in mind that just as *you* usually have reasons for the things you do, autistic people also have reasons for what they do (though they may seem invisible to us). They’re not “acting up” in church just because they never learned manners or because they want to mess with your holiness. They have real struggles, and they need your patience and compassion and sometimes even your help.
Thanks for kicking off Autism Awareness Month with me. God bless you in the last week before Holy Week!