Archive for May 2016

Make the Rough Places Plain   Leave a comment

In my most recent blog, I shared an open letter from an anonymous blogger about his experience in a local church.

I shared this letter in concert with the author in our mutual hope that by delineating his experience, we can transform future experiences for other individuals with autism.  I hope that by reading it, you will begin to understand some of the challenges faced by those on the spectrum and that you will know what you can do to change the status quo.

If it isn’t obvious what to do–read on.

My experiences so far with relationships with people on the autism spectrum, and others with disabilities, have given me a few ideas.

First, I think any church that makes it a priority to train its small group leaders and ministry team leaders can allot time to provide some simple information about autism–what it is and how it affects people.  There are increasing numbers of children and adults who are on the spectrum, so there will be more of them attending churches.  It makes sense to know how to reach out.  It makes sense to remove the simple barrier of ignorance.  A half hour session as a part of other training would be a great start.  Other special needs and differences might be included as well, since the key component in any interaction with anyone is respect for the individual.

With autism, it may not be so much that a person looks different, but that a person acts differently.  However, I’m confident that a little practice can take the fear out of interacting with any person who is different or has a disability.  I know it can be awkward at first.  I still think one-to-one respectful interaction works no matter who you’re interacting with.  As my guest blogger observed, making a big deal is not necessary.  A little bit of straightforward teaching providing the needed awareness is, in my opinion, all it would take.  Parents of children with disabilities and those with disabilities, let me know your thoughts, please.

Second, in any group setting, whether a large group like a church congregation, or a smaller one like an in-home group, to initiate and develop a relationship with a person on the autism spectrum and welcome him in will take a little effort.  A warm genuine greeting, followed up by follow-up, will open the door to relationship over time.  By follow-up I mean, check in with the person.  Whether that is next week at the next meeting, whether that is Sunday morning, whether that is by phone or text in a few weeks if you haven’t seen him, it doesn’t matter.  I mean follow-up.  Do something practical to show your interest and care.  After a few meetings, invite the person to join you for dinner in your home or elsewhere.  If he doesn’t seem ready for such an invitation, save it for later, but do it.

For a person with autism to be welcomed, it isn’t going to work for you to assume he will blaze his own trail into a group.

Also, many people with autism have a hard time remembering names and faces.  Especially in a large group setting, such as a chaotic church vestibule, it is very difficult to pick out individuals in the crowd.  It all blurs together, and can become overwhelming.  So, when you see the person at church, greet him.  Don’t be offended if he doesn’t remember your name.  Don’t be offended if he seems stiff and unsure.  Don’t wait for him to initiate with you.  The fact that he’s there, in the building, can be a huge effort for him.

Once the person is included in a group, he can feel more comfortable, and will eventually get to know other people in the group.  He has a great deal to contribute–insights in discussion, and loyalty in friendship.

Honestly, it only takes one person.

One person to consistently and faithfully initiate in friendship.  Once that one person draws the other person in and he experiences welcome, he will develop friendships and relationships with the other people in the group.

Christ welcomes us.  By definition, we welcome each other.

 

 

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Posted May 27, 2016 by swanatbagend in autism, the church

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Open Letter to Sojourn Community Church — Guest Blogger   1 comment

Today, I am publishing an open letter by an anonymous blogger about his experience in a church as part of my current series on life with autism.

 

Almost two years ago now, I stood up and walked out of the sanctuary of Sojourn’s J-Town campus. I never came back. Indeed, I never set foot in Sojourn Community Church (as it calls itself) again. I swore that I would not, and I have kept that oath to the letter.

As I said, it’s been two years, and many things have changed in that time—just as many things have also remained the same. One of those things: I am still angry. Not so angry as I could be, but furious nonetheless—furious at Sojourn for all that it did and did not do—and this fury shows no signs of dissipating.

Holding anger within for two years is unhealthy, to make a bit of an understatement. It is time to set it free, and hope that by doing so it will cause no further damage, either to myself or to others. It is time that Sojourn knows how it hurt me, and what it must do to improve.

I came to Sojourn from a church that had, since my arrival, made a custom of ignoring me. It was easy, of course, for this to occur: I am an introvert, and introverts excel at metamorphosing into inanimate fixtures of their environment, no more deserving of interaction than a piece of furniture. I assumed that this was my natural fate within the church—I was not outgoing nor stimulating in conversation, so why should anyone reach out to me? I contributed nothing; why should I receive anything? A disappointing state of affairs, but a wholly just one.

In the end, my family departed that church, for it also made a custom of ignoring even those who contributed most to its enfeebled existence. And, due to doctrinal particulars that I need not detail, we wound up at Sojourn.

Sojourn was an entirely different place. For one thing, it was big, and growing even bigger. It surrounded itself with artistic talent and endeavor, from an unimpeachable worship band to bulletins prefaced with artworks relevant to the sermon series. The sermons were never anything less than eloquent.

However, the people who comprise Sojourn seemed to be the most significant difference; they were young and hip—the youngest and hippest that a church can scrounge up these days. More importantly, they were enthusiastic for all that Sojourn Community Church stood for: the Gospel, Jesus, and most of all, Community. If you have attended Sojourn for any length of time, you will have noticed that it emphasizes Community a great deal; there is never a Sunday where the phrase “we are a Community!” is not emitted by some grinning individual at a microphone.

You will also have become aware of the primary vehicle by which Community is expressed: namely, the community group. Having become members, my family immediately involved itself in one—and I was there every step of the way. I had discovered that passivity would not work: in order to be anything more than a tumor on the Body of Christ, to truly belong, one must contribute.

In the beginning, I tried my best—and for a time, it seemed to work. My input in sermon discussions was valued (or so it was claimed). Individuals inquired after my well-being (a strange thing indeed). When I underwent neurological surgery, there were people with whom I had no genetic kinship in the waiting room, actively praying for my recovery.

But it did not last. I do not know when the laborious process of constructing relationships with those who comprised our community group ceased, but cease it did: it was as if I had hit some barrier that could not be surmounted by any amount of effort. I reached out, but my reaching was no longer reciprocated. Invitations were refused, excuses made. I stopped attending community group; no one noted my absence. (I did not merely assume this—my parents confirmed it.)

While taking an intensely difficult class in mathematics over the summer, a fairly prominent individual within Sojourn offered to tutor me. Desperate to the point of wishing that I were dead, I accepted. Yet this individual would never respond to my emails requesting assistance in time for us to actually meet. In the end, he stopped responding to my emails at all.

Again—and not for the last time—I was a non-entity. I had less worth than the installations that Sojourn produces in an attempt to validate itself through artistic expression: at least people would sometimes stop and look at those things.

Having been completely abandoned, I left. I fled this shell of a church that would not extend its much-vaunted “community” to the likes of me. In the end, I had lost the capacity to trust, and gained…nothing. Nothing, except bitterness.

Perhaps I simply did not try hard enough. Perhaps I got what I deserved. Perhaps there is no need for me to be angry: there are far worse things that Sojourn could have done to me. But being ignored, and then persistently informed that the church is overjoyed to involve me (“We’d love to meet you”), is cruel.

There is a reason for the regrettable events I have described: I have Asperger’s Syndrome, which makes me about as capable of developing and maintaining interpersonal relationships as a turnip. However, I am not stupid enough to fail in recognizing fraud. “Community” does not exist within Sojourn Community Church, except as a buzzword. Seek it here, and you will fail; knock, and the door will be opened, then slammed shut.

“All are welcome”, states the page describing community groups on Sojourn’s website. I find that I must disagree, Sojourn. Some are welcome: not the lonely, the broken, nor the hopeless. Certainly not those on the autism spectrum.

So, what can you, my reader, do to rectify this situation? Firstly, mean what you say. Do not feign friendliness. Align your actions with the gospel of grace that you aver. In a world of hypocrites, you have been part of the problem and not the solution.

Secondly, take note of the introverts around you: the person who never speaks up in community group, the skinny young man who wanders around the narthex after Communion. Don’t simply introduce yourself: try to involve yourself in our lives. Invite us out for lunch. Nine times out of ten, we will refuse; but there is always a chance that we might be willing to take a risk and accept your attempts to show concern for us.

I should note that this is not, per se, a call for the church to do better in its ministry towards those diagnosed with Asperger’s, or even those on the autism spectrum in general; although I know firsthand that Sojourn is for all intents and purposes oblivious to us, and that this must change, I do not wish those on the autism spectrum to become the targets of some new initiative in outreach—grist for the mills of pamphlets and books describing five-point plans for “welcoming those with ASD”, complete with mnemonic acronyms. The church in the United States excels at this, but I want none of it. I do not want special treatment. I merely want to be treated as a human being.

I know that introversion is an unacceptable character trait in today’s culture. But we have the image of God imprinted on us, too. It would behoove those who call themselves “Christian” to treat us in the manner to which they were called.

Posted May 25, 2016 by swanatbagend in autism, the church

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And Autism Took That Away   1 comment

Last night, my husband and I almost had a fight over something I said to him.

I’m thankful that after 27 years, he knew me well enough to know that my intent wasn’t to hurt him.

I had a really long day after a really long two weeks, and I did not think I could do one more thing for anyone.  I wanted him to know that I needed a peaceful evening with nothing else added in.  But the way it came out made him feel as if I thought he always comes barging in thoughtlessly demanding fifty different things from me when he gets home from work.  Of course, that’s very untrue.  It hurt his feelings.

The thing is: I was trying to communicate well.

I thought I was doing fine.  I thought I was being pleasant, but still letting my spouse know what I needed.

Utter fail!

I didn’t greet him first, didn’t ask how his day was.  I hugged him, but my words were, “I need to not have anyone demanding anything from me tonight.”

You’ve had days like that, I know.  And it’s important to communicate your needs, so your spouse will know them.  But this was not the way to do it.

I was mentally catapulted straight back into Mr. Dilbeck’s seventh grade social studies class.  I was distraught because I had been told some boy liked me.  The thought apparently terrified me, and I had no idea how to react.  Other things upset me that day, and by the time I got to that afternoon class, I was a complete mess.  When attendance was taken, in some sort of desperate attempt to get help, when my name was called, I didn’t say “Here.”  I said, “I’m here, but I wish I wasn’t.”

I stayed after class that day to discuss my disrespectful response, with a teacher who turned out be kind once I explained myself, but I learned that there are certain forums which you don’t use for expressing personal angst.

At least–I thought I learned.

But I didn’t, fully.

That certainly wasn’t the only socially inappropriate thing I did as a teenager.  By far.  I rolled off my chair in a Sunday school class one time when I was just about dead with sleep, and got my entire class in trouble with our long-suffering teacher.

I complained to my biology teacher that she didn’t care that I didn’t understand what she was talking about, and spent time helping her to clean up and organize the lab as a way to make up for my misbehavior.

All this fallout was brought on by stressful situations overcoming my social abilities.  My friends would ask me, why did you do that?  And in hindsight I always realized I should not have, but I never had any reasonable explanation for my ridiculous behavior.

I obviously learned something from those experiences.  But apparently not enough to only have one of those experiences.

There are other things that a neurotypical person may routinely expect to do that I cannot.

Autism takes away the ability to attend concerts and any large, loud or frenetic events.  It’s scary and overwhelming.

While I rode my fantastic intellectual abilities to the top in high school and college, there aren’t any good grades to be had working and living and interacting with other people each day in the rest of one’s life.  Autism means that I cannot have a career which involves change, unpredictability, and random events.  I think I’d say waitressing and air traffic control are out.  I did work as a camp counselor, and I do have children, but I’m definitely done with the camp counselor days, and in my own family, we’ve all found ways to help each other out by keeping our general life routine pretty predictable.  If work is changeable, it’s much too stressful, and while I can handle noise and chaos for a time and in some emergency situations, my tank drains really rapidly.

Having autism means the ability to be flexible is extremely compromised.  Friends, now you know why it is impossible to get me to do anything at the drop of a hat–except maybe go get an ice cream.  If you think of it last minute, I say no.  Sorry.

Autism takes away a natural ability to comprehend many of the mysterious ways that relationships work.  I work hard to maintain friendships.  But if I have been mistaken in your level of interest, and you drift away from me, I won’t understand why.  I just can’t comprehend how friendship could evaporate.

I still for the life of me cannot determine when people are being sincere.  I’ve always been naïve, and while I thankfully haven’t ever been permanently damaged by that naïveté, I still routinely look forward to receiving future invitations that never come.  A year later, I will finally realize that the person was dropping a meaningless social nicety when she said, “Let’s do this again soon.”  And it’s not like I haven’t been told that these kind of comments are almost never meant specifically and actually.  I know that.  It’s just that when I’ve wrapped up a fun time or an enjoyable conversation, my mind can’t detect any insincerity.  Why wouldn’t we get together again soon?  I actually spent about a year once waiting for two different people to get back to me about a proposed get together.  Sure, some of that was depression, some was being stubborn, but what person in her right mind really believes that after a month has passed, she’d get an actual invitation?

No matter how old I get, I still say the wrong thing, even when I’m specifically trying to be appropriate and adult.  Even when I try to communicate my thoughts and feelings, while maintaining respect for the other person’s position, or love for the other person, I fail to do so.

Offending people is the last thing I want to do.  I’ve always wanted to be liked more than just about anything.

But sometimes, autism makes that impossible.

Posted May 23, 2016 by swanatbagend in autism

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Bittersweet   Leave a comment

My twenty year old son called me last week to tell me he needed to change our plans for the date he would need to be picked up from college.  It wasn’t that his final schedule had changed and he could leave earlier.  It actually was that something else had come up, and he needed to stay longer in his university town.

Honestly, when he calls these days, if I don’t get to the phone, I don’t always recognize the voice coming out of the answering machine, especially if it’s at a distance and I’m doing something in the kitchen.

All I know at first is that a man is leaving a voice message.

I call back.  “What’s up?”

“I need to change the day you come pick me up.  Dr. Cassetti just told me about a kids’ entomology camp they have here each summer.  The training is Thursday.”

Our plan had been for Wednesday, which is when the dorm closes anyway.  (That is, it was our second plan, the original had been to leave right after his last final on Tuesday, but we ditched that as too crazy.)  So, he says he wants to find somewhere to stay, move his dorm stuff out, and get to this training.

“How about I come get you after the training on Thursday?”

“Well, that would mean we’d be traveling during dinner time, and that always makes you grumpy.”

I laugh.  “True, but as long as I can stop for a hamburger, I’ll be all right.–But is there some other reason you’d rather I not come on Thursday?”

“There are some things I haven’t been able to get to that I need to wrap up at the lab.”

He’s working with a professor there who is doing termite research.  End of semester is always very busy, and he was taking organic chemistry this semester, on top of other commitments, so I’m not surprised there are loose ends.

What does surprise me is the sweet: he has so much going on that’s good that he needs to stay there longer

and the bitter: he’ll be home later than I expected.

He is going back this summer to continue his work with the termite research.  I think he has already accumulated maybe six credit hours working with the termites?  He has a sublet apartment, and a part-time paid job.  Now, he’s adding in the summer camp for kids.  You should see him telling children about the wonders of insects.  He lights up.  Like a firefly, if I may be pardoned the expression.

It felt odd that his reason to stay longer wasn’t really because he was concerned about my not getting dinner Thursday evening (although that was certainly a concern), but that it was because he had further work he needed to do.

I don’t actually know who moved him out of the dorm.  Or if the camp is paid work.  If he got some of my last emails, or, really a dozen other factoids about what he’s doing right this minute.

This plan, this life, this summer internship, is a good thing.  A really, really good thing.

But at the same time, I know that he travels on in his life toward his future–where by definition I cannot follow.

Posted May 21, 2016 by swanatbagend in motherhood, parenting

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A Sea Change in Society   Leave a comment

Rates of autism are still increasing.  They have been moving upward since the condition was first described in the 1940s.  According to the May 6 issue of The Economist, in 1970 the rate was 1 in 14,000.

In 2000 when stats routinely began to be kept it was 7 per 1,000.  In 2006 it had risen to 9 in 1,000 and as of 2012 it was almost 15 per 1,000.

Depending on how severely someone is affected, it’s a disconcerting increase.  Costs of living for people so severely affected that they cannot support themselves with work are definitely concerning.  Many people, of course, are just different from what is considered the norm, but can still manage to make a living.  In many cases, they are extremely good at what they do, some of the best in their fields.

It looks like from 2000 to 2012 the rate of autism diagnosis doubled.  The Economist article did not deeply address the causes, nor did it indicate that any research is going forward to determine factors that are driving the increase of autism in the population.  It seems fair to assume that if we do not find out what the root of the problem is, we will have no tools with which to change its trajectory.

So, what will happen if the rate of autism continues to double?  Extrapolate outward to 2096.  Unscientifically speaking, if the trend of doubling every twelve years continues, there will be a great increase in the number of people on the autism spectrum.  If anything doubles, eventually it will have increased exponentially, and the population will be made up entirely of people who are diagnostically on the spectrum.

Maybe that’s unscientific and genetically impossible.  It’s probably more reasonable to assume that there will be, say, seven more people with autism per 1,000 every 12 years. If that happens instead of continued doubling, the rate will increase to 64 people per thousand by 2096.  For perspective, if the rate were 100 per thousand, that would be 10% of the total population.

Should this transpire, what a very different society we will have.

By definition for society to survive and thrive, it must make create new ways of working, interacting and getting things done.

Perhaps the social traits of those on the spectrum that are now seen as oddities or rudeness will become accepted.  Perhaps the strengths people with autism have would be more widely known and more greatly valued.

 

Posted May 19, 2016 by swanatbagend in autism

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Autism Gave Me That   3 comments

Despite my generally asking him to just look it up in the phone book, my husband still occasionally asks me for a phone number he needs.  It kind of gets on my nerves when he expects me to provide Directory Assistance.  At the same time, I smugly like being able to meet this need for him.

Same with names, places, and directions.  For the first forty years of my life, I’ve been quite good at hauling useful details out of the memory vault.

And I’m not sorry that autism gave me that.

I write and draw, especially pencil drawings.  My daughter, too, has an eye for very small details, which allows her to draw well.  I found when I was taking art in high school that my teacher was able to help me learn to draw well primarily because of his skill at walking his students through the process of making the thing appear on the paper that was in front of the artist.  But it was also because I could see the tiny details of the object in front of me.  I could see the highlight, the differences in shading on the surface of a vase, the small waves in the hair of a subject.

Autism gave me that.

I could listen to the back-and-forth of banter between friends or the argument of a couple in passing on the street or in a restaurant, and replicate that in a short story later.

Autism gave me that.

Maybe, as my son has observed, I’m not even diagnosable as autistic, although there are several in our family who are definitely on the spectrum.  No matter if I don’t get the label, I’m close enough that I have some of the gifts, along with some of the challenges.

I had the perseverative focus to not let go of a question about what had happened to me.  As my doula said, I held on to the “why” of a difficult birth like a bulldog, and I didn’t let it go until I got answers.

Autism gave me that.

I researched what had happened and was obsessed with finding a better way so I wouldn’t have to go through hell to have a baby again.  I succeeded.

Autism gave me that.

I am a loyal friend, who tends not to give up on people, and to stay in touch through the years.  I try not to abandon anyone, especially people who have been good and kind to me.  Is that such a bad thing?

Autism gave me that.

 

 

Posted May 5, 2016 by swanatbagend in autism

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