Worth Your Read: Disability in Church

Posted on by Realistic Autistic
https://church4everychild.org/2016/02/09/what-are-the-stats-on-disability-and-church/

So, real talk here (as if I do any other kind).  I go to church every Sunday.  This is in part because I believe and want to learn, in part because I like the music, and in part because I am very much a creature of habit.  Growing up, I went to church every Sunday with my family.  Religiously, if you will.

This tendency seems to put me in the minority of autistic people, which I\’m disappointed to hear, because the church can be an excellent place to make connections, learn how to be a better person, and feel more a part of a community.  The caveat here, of course, is that the church has to be proactively inclusive for best results, and many churches… simply… aren\’t inclusive.

Maybe it\’s that the kids in children\’s church simply don\’t know what to do with a kid that won\’t stop talking, or doesn\’t speak at all.  Maybe the pastor is hilariously tone-deaf to the reality of getting special needs kids to sit still at the dinner table.  Or maybe it\’s just that people in the congregation just… don\’t approach you at the passing of the peace, or before and after the service.

This isn\’t necessarily targeted hostility, or even purposeful exclusion.  It can be simply that these people don\’t know what to do with a special needs child or adult, and so, for fear of doing something wrong, simply stay away.  Or relegate the person to the corner.

The thing is, parents with special needs kids, and in fact, special needs people, are pretty sensitive to being rejected and being avoided (which is a form of rejection, by the way).  In many cases, we\’re literally so used to it that it\’s all we expect from anyone.  (That does not make it hurt any less to have it confirmed, by the way…)

Reading this article makes me think about my own church, which I have attended for about a decade now.  And, I\’m sorry to say, of the five qualities given for a disability-inclusive faith community, I can only personally say my church has the last one, the strong orientation toward promoting social justice.  Perhaps the parents in the congregation who\’re raising special needs kids could give a more positive analysis, because they\’ve actually reached out for help, and I… haven\’t.

As far as I know, our leadership (as a whole) isn\’t specifically committed to inclusion, the church has no ties to disability organizations that I\’m aware of, and while I did attend an educational workshop on making church a friendlier place for special needs people, it was literally years ago now, and I haven\’t heard any more on the subject.  I\’m not even sure they adopted some of the simpler recommendations the speaker gave.

For my personal experience with the church, I\’ve only had to make a stink about my disability and reasonable accommodations once, and it was in extraordinary circumstances… but at this point, four months later, it still kind of makes me slightly angry to think about, so I\’m probably going to remember it that it happened forever.

Mostly, the church has simply been non-inclusive by the vice of ignorance.  Workshops have happened on equal rights for LGBTQ+ people, on race relations (anti-racism), on various cultural developments… but because the needs of people with disabilities are so wide and different, it\’s kind of difficult to make a neat little box of things to teach all your leaders, and then bring to the congregation proper.

This isn\’t just a lack at the church I currently attend, by the way.  In my almost 30 years of life, I\’ve attended at least 7 churches regularly, and visited at least 50 more while church-hunting.  Pretty much all of them had this same problem.  It\’s not that they didn\’t care, it\’s that they literally didn\’t know what to do with special needs people.  And weren\’t proactive about deciding it was important to learn.

Another bullet point in the article I\’d like to underline: \”Parents indicated that special needs inclusion and participation in faith communities was easier when children were young and became more difficult as [the children aged].\”  This is probably a factor in why a lot of autistic adults don\’t care for church and organized religion.  As we stop being little and cute and easy to manage with distraction, people stop having as much patience for our quirks and start getting nervous and anxious about us.

I spent… I want to say at least 7 years, at my church, regularly attending.  I did not meet anyone at the church in that time.  I did answer a call for volunteers, which is how I learned to run a sound board, and have continued to do that.  But it\’s like peoples\’ eyes just… slid right past me.  If they didn\’t already know me, they didn\’t approach me.  Recently, I\’ve been joining in one of the Bible studies at church, and that has netted me some acquaintances that genuinely care about my existence.  Some of them will now say hello to me and ask after how I\’m doing.  That Bible study is in limbo right now, though, because the leader suffered some health complications and wasn\’t sure, last I checked, whether they were going to run the study this year.

The last bullet point I\’d like to add to is, \”Fatigue was a common parental characteristic cited as preventing inclusion of a child at church.\”  It\’s very fair and understandable that parents of special needs kids are going to be chronically low energy and chronically tired.  I\’m not disputing that.

What it\’s missing is that the special needs kids and adults are also going to tend toward chronic low-energy and fatigue.  It is very tiring to be among dozens to hundreds of people that don\’t understand you.  Some instruments (looking at you, piccolo, and you, loudest freaking hand drum player in the whole state) are simply intolerable after a time.  Sometimes the sermons are hilariously tone deaf from our perspective, and assume you can just… go out to a fancy restaurant to treat yourself.  Because the one thing lots of disabled people (and families with special needs kids) have lots of is money (/sarcasm).

I think churches can do better.  My own church definitely can, anyway.  Whether they will, is another question entirely… so I guess maybe it\’s time to email the minister of congregational life again, to see if he\’s heard anything about the committee that was supposed to be forming for disability inclusion…  

Legwork and Life, week of 9/5/18

Posted on by Realistic Autistic
Labor Day has come and gone.  Holidays always mess up my schedule somewhat, because Chris is home rather than at work, which means I have less time alone to work.  I\’m not sure why, but I find it almost impossible to focus on work with someone else in the room.  Unless they\’re complete strangers, it\’s a coffee shop, and I\’m really into whatever I\’m doing.  

You can, and are encouraged to, ignore complete strangers in public settings unless there\’s a specific reason not to.  This is very pleasant for me, because the fewer people I have to acknowledge, the less distracted I am, automatically.  Parties and social occasions, are then, by default, kind of awful because the opposite rule is true there.
Anyway, I did manage to do a bit of work in a short period of time when Chris was busy with other things, so there was that.  But also, we got a new kitchen overhead light installed.  I managed to break the one that came with the house with a combination of my head and the crockpot, and it\’d been broken for a few weeks now.  (I was taking the crockpot down from its perch over the refrigerator, accidentally hit the light with the crockpot, bapped myself in the head, and dropped the crockpot amidst the shards for good measure.  It was not an experience I recommend to anyone.)
It was a surprising amount of work to replace the light!  But Chris did most of it, so I can\’t complain too hard.  I did spend a good period of time holding the light up so that Chris could attach the wires with two hands.  This is actually a very difficult task for me.  I don\’t seem to have good circulation to my arms when they\’re held up, so I get tired very fast.  But of course, I could hardly drop the thing while he was still working on the wiring…  Once it was done, though, the new light is brighter than the old one by a good margin, and looks nice.  So that\’s a pleasant improvement.  
We also went out to lunch with my parents over the weekend, which was pleasant, and did some Pokemon hunting.  Mostly, though, it was a \”stay home and relax\” kind of weekend.  I guess we both kind of needed that, so it was nice that it was a 3 day weekend instead of a regular 2 day weekend.  
The only other major news of note is that my car is having minor mechanical issues.  The brakes need replacing, I think, and one headlight went out.  So, nothing too expensive, hopefully, but kind of poor timing.  I\’m having to drive my spouse to work, and then pick him up again afterwards, while they work on the car.  We\’re very fortunate to be able to manage two cars (insurance prices are no joke in this state), but I do sometimes wish maintenance wasn\’t a thing I had to deal with for cars.  I suppose I\’m not really alone in that regard.  It\’s just one more thing that can break in a truly startling variety of ways, causing anxiety.  
Beyond that, there was a huge set of storms that came through a few days ago, bringing torrential rain, so the pond is still quite algae-free, to my distinct pleasure.  The rain did cause flooding for at least one of my friends, unfortunately, but I guess nothing got ruined, so there was that.  

Reading the Research: Deficits and Depression

Posted on by Realistic Autistic
Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today\’s article talks about the different views students, teachers, and parents have of school children in regards to skill deficits and depression.  I was pleasantly surprised to see the the professor overseeing the study suggesting that simply asking the kids was the best possible indicator for depression.  In my experience parents, teachers, and adults at large assume kids are stupid and don\’t know anything, and thus their opinions can\’t be trusted.  I have a marked opinion otherwise, frankly, because kids are simply little, somewhat inexperienced humans.  Not being fully developed and not having 20+ years of life experience doesn\’t particularly make someone stupid, in my opinion.  
It didn\’t, however, surprise me that teachers and parents tended to miss that a child was depressed.  Teachers often have to handle classes of 20+, even 30+ students at a time, and depression sometimes only looks like a shy or quiet child.  It\’s the noisy, misbehaving children that tend to get the attention, so the depression is easy to miss… and it was missed, when I was growing up.  It\’s maybe a bit less understandable for parents, in my opinion, but of course my own situation, growing up, included a very very busy father, and a mother with her own form of deep depression.  Circumstances, therefore, were not exactly ideal for recognizing either my autism or my growing depression and anxiety.  In today\’s hectic US society, that is probably more and more the case.  
The article itself sparked a question, which I\’ll pose to you now: did the depression cause the skill deficits, or did the skill deficits cause the depression?  
In truth, I don\’t know the answer, and there may not be a broad, generalized answer for it anyway.  But it\’s very much the case that children can get anxious and depressed when they can see they\’re not keeping up with their peers, or with expectations set on them by others.  This isn\’t just autistic children, but you can often see it in autistic children because we don\’t have the full social intuition that\’s expected of us.  Our social learning doesn\’t necessarily keep up with the demands of school, especially once puberty hits and things get extremely complicated.  So there\’s reason enough to assume skill deficits can cause depression.
But then, too, depression can absolutely cause skill deficits.  If a child is depressed for reasons besides lacking skills, such as having a parent in prison, or suffering a form of abuse, that affects how much attention, enthusiasm, and patience a child can put into learning social skills, and even reading and mathematics.  A child struggling at home, essentially, may also struggle in school… and eventually, the lack of full attention, enthusiasm, and patience will take a toll on how much the child learns.  In school, some subjects rely on the student fully understanding the previous subjects, so performance would degrade over time.  
I was alarmed to see that 30% of the 643 elementary students in the study reported mild to severe depression.  That\’s almost a third, which is nearly the same as the depression levels reported for the general population in a study a couple weeks ago.  That\’s really really bad!  And this was early elementary school, before puberty makes things way more complicated.