An Autism-Friendly Church Isn’t One-Size-Fits-All

I just wrote a piece on autistics and the church for ClergyStuff.com‘s Exceptional People blog.

I’m a pastor and autistic. In my spare time I go around giving presentations to people about autism. When people learn this, they often want tips for their own congregation: what can they do to make it welcoming to autistics? They’re looking for something simple: maybe a quiet room, or stim toys in the pews. Some physical change they can make to the building that will make the space more autistic-friendly. Or maybe even a change to the service itself—something small, that will make a big difference.

Problem is, there’s no one thing—or even two, or five, or ten—that they can change about their worship space that will have the effect they want.

Advertisements

On Being Autistic and “Getting Outside Your Comfort Zone.”

There’s this thing autistics get told A LOT when they don’t want to do things: “You just need to get out of your comfort zone!”

This immediately tells me that the person speaking doesn’t understand autism.  Because, you see, what most allistics* don’t understand is that their whole idea of what a “comfort zone” is and how much time an autistic spends in their “comfort zone” is completely wrong.

Most neurotypicals** spend most of their life feeling fairly comfortable.  This is because the world is designed for their neurology.  And the higher up the kyriarchy they are–the closer they are to heterosexual cisgender*** able-bodied neurotypical white culturally-Christian middle-or-upper-class male–the higher a percentage of their life they spend feeling relatively comfortable.  This is not to say that every moment is as relaxing as chilling on a warm beach with the beverage of their choice, but rather that even if things aren’t perfect they probably aren’t actively distressing.  So, sure, there are some things that will be difficult, that may stretch them, but they’re usually starting from a place where they are rested and refreshed and have a good reserve of mental, physical, and emotional energy with which to tackle the thing that is “out of their comfort zone.”  And, if they tackle that thing and do it, they will learn how to do it and it will cease to be out of their comfort zone.  So while the uncomfortable thing may be difficult, chances are it will still be achievable, and they will succeed, and their comfort zone will grow, and everything will be better.  In this case, being told to do something “out of your comfort zone” is very good advice.

This is not what things are like for autistics.  Our brains are wired differently from other peoples’ brains.  Things that are very comfortable for most people can be very uncomfortable for us.  Sometimes to an extreme degree.  The lights, the physical textures of things, the sounds and vibrations of the machinery that make modern life possible, the smells, the tastes, our own awareness of our own bodies–these are often harsh or unpleasant for us in ways that they are not for allistics.  Essential tasks are structured in such a way that they make sense to allistics and may not to us.  The rules of social interaction feel weird and alien because they are designed for neurotypicals who think differently than we do.  (Yes, we have emotions, and we have a need for social contact, but they are expressed differently.  We may have difficulty interpreting the thoughts and emotions and reactions of allistics, but they have even more trouble accurately interpreting OURS.)  And none of these things are things that can be solved.  I have learned to “fake normal” to deal with neurotypical people, but it’s not something that comes naturally and it takes a lot of mental and emotional effort.  It will never get easier.  It will always be outside of my comfort zone.

If you have a sensory sensitivity, chances are no amount of exposure will make it tolerable to you.  I find the vibrations and sounds of cars, buses, and planes to be really uncomfortable, and I’ve been riding in cars since my parents took me home from the hospital the day after I was born, and it’s never gotten any better, it’s never going to get any better, and I just have to figure out ways to deal with the fact that most forms of travel other than my own two feet are going to wear me down a lot more than they wear down other people.  It will always be outside my comfort zone.

Most autistics spend most of their lives deeply uncomfortable.  I don’t think I can explain what this is like to someone who’s never lived it, but it’s true.  It’s draining.  You can’t ever let down your guard, because there is always something rubbing you raw like sandpaper.  (Meanwhile, most of the allistics around you generally respond by telling you how unreasonable you are to complain about something that hurts you, because it doesn’t hurt them so they don’t believe it hurts you.)  I was lucky; my sensitivities are milder than a lot of other autistics, and my parents are awesome, and they always made sure our home was a comfortable and safe place for me to relax.  But lots of autistics aren’t so lucky.  There’s a documentary called “Vectors of Autism” about a woman named Laura Nagle.  She’s middle-aged, and in the documentary she goes to an autistic conference–one given BY autistic people FOR autistic people.  Everything in that conference was designed to be comfortable for autistics, no allistics.  While she’s there, Ms. Nagle turns to the camera and says it’s the first time in her life she’s ever been comfortable.  This is such an astonishing and remarkable thing to her that she has to invent a whole new word, for the feeling of being comfortable for the first time in your life.  Think about what that would be like, for a second.  Can you imagine what it would be like to reach the middle of your life without once being able to let down your guard and relax?

When neurotypicals tell autistics we need to get out of our comfort zone, they’re usually envisioning it something like this: you’re standing on the edge of the pool, and it’s a warm day and you dip your toes in and you go, oh, that’s colder than I thought, and you know you want to and it’ll be fine once you’re in but you just need to grit up your courage and jump in.  And your friends who are already in tell you, “just come on in, the water’s fine!”  And finally you jump, and get it over with, and you may splutter a bit at first but soon everything is fine.  That’s what they think they are, the friends saying “come on in, the water’s fine!”  After all, the water is fine.  For them.

But it may not be fine for the autistic.  For the autistic, it probably feels more like this: they’re out in the ocean in the middle of a hurricane, desperately clinging to some random piece of flotsam and trying not to drown.  It feels like the hurricane has lasted their whole life.  (Maybe it has.)  And up swims a mermaid.  “Come on in!” they say.  “Let go of that and dive down deep.  The water’s fine!”  After all, the water is fine.  For them.

And, you know, maybe the mermaid is right and there’s something great and helpful down there.  (Maybe even a submarine, so they could get out of the hurricane.)  But that autistic is battered and beaten and just trying to survive, they can barely catch their breath, they don’t have the strength or the stamina to dive down to find it.  On a different day–on a calm, clear day, when they had a boat to ride in instead of debris to cling to–they might be able to.  (Not always, but maybe.)  But it isn’t a calm, clear day.  And today, they can’t.  And no amount of the mermaid cajoling them is going to change that.

This isn’t to say that autistics never need to stretch or challenge themselves.  Nobody can grow without at least the occasional challenge or stretch.  But in order to succeed, you need to start from a place of at least basic ability.  You have to be able to rest and recuperate, you have to pick your challenges, you need space to be, space to be comfortable, space to build up your reserves.  Otherwise, you’re not going to be able to do anything but go splat when you try to stretch or challenge yourself.

This is one of the reasons autism can sometimes be a lot harder to identify in adults than in children.  Children do not control their environments; their parents, teachers, and other authority figures do.  If those authority figures don’t provide a safe and comfortable place for the child to relax and recover from the stresses of dealing with the world, that child is going to spend their whole life feeling like that drowning person in the middle of a hurricane, clinging desperately to their coping skills.  And some of those coping skills are some of the most stereotypically autistic behaviors.  They’re not bad things, they’re good things–if an autistic is prevented from using them when they need them, the internal psychological pressure becomes a heck of a lot worse.  But most adults do control their environment on a basic level.  They don’t have to go places that make them uncomfortable, they don’t have to wear fabrics that make them feel like their skin is on fire, they can arrange their lives so that they are as close to comfortable as they can possibly be.  So they’re likely to use the more stereotypical autistic coping skills less intensely.

The thing is, though, that just because you can arrange your life to give you a safer environment to live in doesn’t mean you will.  Just because you can arrange your schedule to give you the recovery and prep time you need to deal with the world doesn’t mean you will.  You get told your whole life that you “just need to stretch yourself” and “get outside your comfort zone” for everything to be “fixed,” you start to believe it.  You get told your whole life that your basic needs are unreasonable and unfair to everyone around you, and you start to believe that you don’t deserve to get any of your needs met.  You believe that trying to meet your own needs is inherently selfish and lazy.

I believed that for a long time.  I rarely got that sort of message from my family, but I got it from everyone else.  I’m sure they were just trying to motivate the bright-but-quirky girl.  But that’s not the way it felt to me.  By the time I went off to college, I was firmly convinced that if I ever stopped pushing myself–if I ever stopped forcing myself outside my comfort zone–if I ever actually paid attention to my own needs and attended to them and gave myself some breathing room–it was evidence that I was lazy and selfish and a bad friend and a bad person.  Now, pushing myself that far did result in some good things (for example, the college I went to was great, and going that far from home was certainly a major stretch), but mostly it just made me miserable and not able to get much out of even the good stuff, because I was constantly on the edge of mental and emotional collapse.  I spent years veering between pushing myself too hard and feeling like a failure because I was doing great things I couldn’t let myself take the time to appreciate, and being holed up in my room trying to recover from having pushed myself beyond endurance and beating myself up for being lazy and selfish and a bad friend and a bad girlfriend and a bad daughter and a bad person.  I don’t know what it looked like on the outside, but it was pretty bad from the inside.

Even when I stopped doing that, when I stopped pushing myself too hard and giving myself actual time and permission to build up reserves, to curate my activities and eliminate stuff that just wasn’t worth it to me, I kept that story inside me, of how I was just lazy and bad.  (I still have trouble not believing it, sometimes.)  I know I’m a smart, capable person who can do a lot of amazing things, and I always have been, and I can do even more now that I give myself permission to save my resources for the things that matter, and do them in whatever way works for me instead of the “normal” way.  But it’s hard to believe, sometimes.

And why is it hard to believe?  Why did I think I was lazy and selfish and bad for so long?  Well, a lot of it is all those people who told me, all those years, that I was being unreasonable, that I was being lazy, that I just needed to push myself, that I just needed to “get outside my comfort zone.”

 

 


*allistic: someone who is not autistic.

**neurotypical: someone whose brain works along the “typical” model.  They have no developmental disabilities or mental health challenges.  People who are not neurotypical are neurodiverse.  You can learn more here.

***cisgender: someone whose physical sex matches their mental gender, in other words, someone who is not transgender.