Sunday, January 27, 2013

Church Attendance and ASD

It's Sunday morning and my family is at church without me...again. It's not because I'm sick, or having a crisis of faith, or even because I don't want to go. It's because my family needs a wife and mother the other 6 days of the week. It will take me 2 - 4 days to recover from the rigors of that kind of social experience, and I won't be back to 100% for at least a week (assuming I'm not obligated to attend any other social activities while recovering). I love church and I really miss it when I don't go. I think I attend about 1 - 2 weeks per month, though, and I only make it through all three hours a few times per year.

From the discussions I've had with other folks on the autistic spectrum, the way I experience church is pretty common for autistic adults. It's easier for those who are highly medicated, but never actually easy like it is for NTs. I thought today I would explain to the world what church is like for me, and a great deal of other faithful autistic members.

First, we arrive. I try to arrange for us to arrive early. +Liam Shepherd likes to help pass sacrament, and needs to be a little early for that. Also, if we are late I will have my first wave of petrifying anxiety upon entering the sacrament hall. While all eyes are on us, and we're interrupting the Bishop's announcements, we have to figure out where to sit. +Jason Shepherd will just follow whoever heads for a seat first. The three ASD family members will all feel their hearts beating, their breath tightening, and their minds become foggy. Even if our usual seat is free, one of the kids will make a B line for a seat that doesn't have enough room or where Jason (who's 6'7" barefoot) will block someone's view. I'll have to publicly and even more distractingly stop them and point out our seat. If our usual seat is taken, I feel a blinding panic. And when I say blinding, I mean my vision goes foggy and sometimes I get tunnel vision. I have to push past that and find a seat. Sometimes someone else will find one that works and I'll gratefully follow.

We have gotten pretty good at arriving early. We go to our usual seats, and I try to be invisible. The bishop always makes a point of stopping by and saying hi, and sometimes other people do too. If we don't exchange more than a couple statements each, it's kind of nice. More than that and I start to become a little anxious. Sometimes I feel a social obligation to try to socialize a little with someone. I always end up feeling awkward and pretty sure I said something offensive or otherwise inappropriate, but I almost never have a clue what that might have been. Eventually church starts. I really like the songs a lot. I feel the spirit strongly when we sing, and it's refreshing in the way church should be. I like that the ward we're in now sings a lot. Some wards only sing a single verse of each of 3 songs. This ward sings 4 whole songs! Prayer is ok. I find public prayers kind of distracting and very difficult to focus on. My mind tends to wander. Sacrament itself is a little nerve wracking. People really pay a lot of attention to what others are doing at this point. I don't think anyone is interested in me in particular, but most do end up looking at me when they are randomly glancing around. I feel a strong pressure to make sure I'm doing the right things and that my family is too. Otherwise, I'll face someone being convinced something is wrong and wanting to help later in the day or week. I make every attempt to look casual and happy. It seems to be the right thing to do. I smile if someone looks directly at me, but pretend they aren't looking if they don't. I like it best when Liam serves our sacrament because the servers always watch you and that causes an intense pressure not to do anything out of place. Liam doesn't care what we do, and gives me a look like he's in on the joke if we do something odd. That's soothing. Actually taking the Sacrament is nice. Everything else goes away for a few moments. I am completely internalized and nothing else exists. As I understand it, though, a lot of people on the spectrum get nothing out of it because all those people around them are so distracting that they really aren't doing anything but eating some bread and water. The talks are a lot like sacrament, except with someone staring at me for an hour straight. Sometimes the speaker or someone else up front will stare directly at us for a bit, but mostly they are staring blankly over the crowd. We'll be fine so long as we don't stand out in any way. I'm just going to repeat that. No NT drama will be unleashed on me or my family in the future so long as the autistic family who are the only autistic people in the whole ward, and that most of the local members have ever met...doesn't stand out in any way for an entire hour in a nearly silent room full of people sitting as still as statues. That seems likely, right? So, like 5 - 10 times per meeting groups of people snap their eyes onto us in reaction to something one of us did - often without knowing we did it. That number is so low because my kids are older and we have really got the hang of this. From what I gather, we are really blessed with more innate and instinctual camouflage than most people on the spectrum.

If it's been a good week, and a decent Sacrament meeting, I make it all the way through. Otherwise, I have to go hide in the bathroom and get myself under control for a few minutes, so I don't have a panic in the middle of church. So, Sacrament meeting ends and the socializing begins. I do best if I can just stand there uncomfortably and listen to Jason or the kids having conversations. The other ward members are very sweet and want me to feel included though. So, I smile and wear the body language of someone at ease the best I can. I make small talk and try to remember this is a sign of affection. It may be confusing and awkward for me, but it's how these people tell me they like me and care about me. I shake the hands that are offered. I even initiate the shaking when I know it's coming anyway. It's a sign of respect, and people appreciate that. I smile and consciously will my muscles not to tighten up when people hug me. I can't quite keep my muscles relaxed and hug back, but I make the motion and that seems to be good enough. Those hugs are stifling. I feel like I'm trapped and suffocating. They don't usually last long, though. And I understand they are expressions of caring. They are telling me I matter to them. As much as I hate hugs, I would hate if they stopped hugging me, too.

And suddenly, everyone disperses. It becomes calm and quiet in the halls. Usually, this is when I head home. I only recently started that habit though. For the past 14 years or so, this is when I slip into the bathroom, instead of heading to class. I don't often catch much of the Sunday School class. I have to spend that time recovering from Sacrament meeting and preparing for another hour in Relief Society. I lock myself in a stall and breath. Usually, in a manner that closely resembles hyperventilating. I cry. I shake uncontrollably. Sometimes I vomit. Whatever I do, I am as quiet as I can be. The last thing I need is to deal with the interference of someone that doesn't understand what I'm going through. It's hard enough to go through without an audience. When I can hold myself together again, I get myself cleaned up. I find makeup uncomfortable on my skin, but I usually wear it for church anyway. While this adds a little to my overwhelm, it's also a necessary coping technique. I wear so little that most people can't tell I'm wearing it, but it's enough to cover up what I am going through. It's taken me years of work to refine my process to such speed that I can actually attend the full Relief Society meeting. I am only late if I have to meet with the Bishop between meetings or something, anymore.

When the stars align to allow me into Sunday School, I try to just sit in the back and keep my mouth shut. I intentionally don't study the manual, in order to reduce my ability to contribute to the conversation. When we're studying a topic I am knowledgeable on, I usually leave. Teachers usually want specific input from their students, and I am prone to responding honestly and accurately instead. I have NO idea what is actually expected of me, and the answers they're looking for seem too obvious and shallow to have bothered asking for them. Not all teachers are like this, of course, but it's kind of the standard. I don't know if I'll ever understand how to function in these kind of situations. When I try, I just end up back in the bathroom crying anyway. Plus, it often leads to a really negative battle between my self respect and my frustration at being so damned different and weird all the time.

Relief Society is a mixed bag. It is the most intense and demanding part of the day. The singing is frustrating. I have a deep voice. In choirs, I usually end up singing Tenor. The pianist doesn't play anything I can sing with and I don't read music quite well enough to sing really independently against the crowd of higher tones. The smaller, more intimate group means significantly less people to be constantly aware of. It also means individuals are more likely to focus on me. Much more likely, as portions of the format often require the group to focus on specific members. I do best when I'm prepared ahead of time. Reading a verse, maybe, or having a prepared item to present. I'm VERY good at public presentations and speaking. I shake so badly I can't even hold notes, but I'm good at it. So, I don't like it but I always accept an opportunity anyway. I'd rather struggle and succeed than hide from challenges, and I always succeed at that.

I hate hate hate praying publicly, though. It's too private. It's like having sex in public or something. Plus, I pray weird. I sound like a child. Very simple and honest and from the heart. People love to hear me pray and always rave about how refreshing and pure and I don't know what else my prayers are. It's like wearing a sign that says "Freak" though. It's one place I really really stand out as clearly different from everyone else. That kind of thing has lasting effects on my relationships, my family, whether anyone will EVER give me a calling, whether my home and visiting teachers will feel comfortable enough to actually let me know I was assigned to them, etc.

There's more socializing after church. And always more hugging. When we get home, I go immediately to bed. Jason usually brings me some lunch and insists I eat. I eat a little and fall asleep with the plate next to me in bed. I sleep for hours, get up for dinner, and go back to sleep. For the next few days, I go to bed early, sleep late, and nap a lot during the day. And I'm overly sensitive. I yell or cry at the drop of a hat. That's not an acceptable lifestyle for me or my family. So, I usually just don't go to church.