Archive for the ‘autism’ Category

The Love Compels Us   4 comments

When thinking about the situation a person on the autism spectrum faces when walking in the doors of a church building, you could say it is up to that person to change himself and make things happen.

You could say there is not a disability here that we need to accommodate.  If we can’t see the disability it does not exist.

You could say if he is a child, the person’s parents should explain in advance to other people that their child needs certain special treatment.

You could say the person with the autism spectrum disorder (ASD) who didn’t make friends and ended up leaving a church should have made more of an effort to involve herself in group conversations and to introduce herself to others.

You could even say the church is not here to cater to different special interest groups; rather, the church’s goal is to share the gospel with as many people as possible.

 

These are some of the trains of thought which confound those wanting to make the rough places plain for those individuals who do not fit the template of “church” that has been laid out by popular Christian culture in the United States.

I’ll take a look at each one.

I think that demanding that the person who is new to the church and on the autism spectrum bridge most of the gap toward other people is almost as illogical as stating that people who use wheelchairs should get out of their chairs and drag them along, in order to get into a building that doesn’t have a clear, smooth ramp.

Sometimes people assume that because a person with an ASD which can include diagnoses like Asperger’s syndrome, high functioning autism and so on, does not appear to be different or to have a disability, that he does not in fact have a disability.  If you see someone with no physical differences, who is able to walk around, and is seen talking to his family, people can assume that whatever problem this person is supposed to have is no major problem at all.  Other times, when parents of a person with autism explain to those in leadership what things are hard for their child and where he will need a little extra guidance or help, or, when they explain what is not working for their child about the way things are at church, sometimes people can’t seem to understand that there is a problem.  It’s as if because it appears that all is normal, they think there will be no problematic situations later.  Or maybe it’s because they are people who are already truly committed to reach out to others, so they feel like they are truly doing that.  Maybe, this is why they can’t see that there is a problem sometimes–because they believe they’ve already met the need.

If someone comes in who is a child or teen, it may be thought that somehow the parents will convey exactly what other people are supposed to do, and nothing need happen until then. There are a couple of reasons why this is not a good assumption.  First, in a new setting, it can be unclear to the parents that it is either appropriate or acceptable for them to make special requests of other people in a group setting.  It’s awkward.  If a parent is just making his or her own way in a new church, it can be difficult for her to know if it is all right to ask for specifics.  Parents don’t want to be demanding, as that probably isn’t going to help them make friends either.

Also, the parents may not know that their child needs an entrée into youth group or conversations with other people in the body; they may assume welcoming overtures will be made to their child by adults and other children.  Or, they may know that he could use help, but they may not be sure how to help provide that extra assistance in a way that will be both effective and workable.  In any social environment, nobody wants to feel like a special project, or like somebody is being paid to be her friend.  You can’t manipulate genuine friendship, and people with ASDs do not want you to.  That’s fake.  People want to be wanted, because.

While it is always true that more effort could be made by any individual to reach any desired goal, the question becomes, how much is enough?  For people on the spectrum, and honestly for any person who has trouble getting to know new people or trusting them, there’s a chasm between where he is now and the desired community on the other side.  He’s not being difficult; he’s not being selfish.  Relationship building is painful work for him.  Sure, there are times when she’s not making much of an effort.  There are always times when individuals don’t make enough of an effort.  But, in general, a person with an ASD is probably doing her best to interact with others.  To say that if she had just pushed herself harder she could have been welcomed is obviously wrong.

And I would agree that the church’s goal is to share the good news with as many people as possible.  That includes the people who are already in the church building, not just the ones on other continents.  I’m not saying those who have never heard are not important.  They are priceless and valued by God.  But so is each person you see as you come and go on a Sunday.  If the church cannot love those who are sitting in its figurative lap, how is that church living out the gospel?  Would you want to come every week to a place where others assume that you should be working at full steam on your areas of weakness, or would you like to come to a place where on a foundation of love first, you can grow stronger?

To know Christ is to know his love for us.  His love for us bridges the gap and draws us in.  So we bear with others’ weaknesses, knowing that they too are bearing with ours.  We reach out to each other because.

The love of Christ compels us.

 

Posted June 9, 2016 by swanatbagend in autism, the church

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.

 

 

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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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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A Compliment About my Son with Asperger’s   Leave a comment

Someone gave feedback about something creative my child did.  It was positive.

I hope she didn’t notice my jaw hitting the floor.

In the past, what my son has had to contribute to group situations has been aggravation and argumentation.  I really don’t expect any positive feedback when we go out and about.

So when she said in response to something he did, “I love that.  What a great kid,” it completely made my day.

We were at a STEM class at a local science venue, and the students were supposed to be looking at various types of rock.  It was a class in earth systems and one of the topics was the varying density of different types of rocks.  We had spent some time examining different specimens and having fun identifying them, but my eleven year old wasn’t particularly interested in submerging rocks into water, measuring how much displacement occurs, and calculating density based on that information.

He’s more into space and things that involve explosions.

So I wasn’t surprised, but just chuckled to myself, when he picked up not one, but two of the hand-held magnifiers we were supposed to be using for examining specimens and started running around the room with them on his face like bug eyes.

What was refreshing was the way someone else’s kid picked them up and had fun doing the same.

And how low key the lesson facilitator was about redirecting them.

And then the positive comment from another parent.

I’m so glad she took the time to mention it.

Posted November 19, 2015 by swanatbagend in autism, special needs children

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