Archive for the ‘autism’ Tag

If Autistic People Ran the World   2 comments

What if we lived in a world where the people whose minds are more at ease with objects, ideas and animals were the dominant species?

What if they were the ones who made the rules about what is “normal?”

What if they created a beautiful, orderly world?

What if there were an explosion of new art, architecture, music, beauty, pattern and regularity?

What if there were an inherent respect for other life in addition to human life? What if stewardship for the planet and all the species on it was assumed to be a priority?

What if there were a renaissance of thought, leading to new inventions?

I’ve read that many of the great minds who developed ideas that were a leap ahead were probably on the autism spectrum. They thought differently. They looked at reality differently. They sometimes even experienced reality differently. Wouldn’t it be great if those minds were encouraged to go even further?

What if there were no need for unnecessary time spent on small talk?

What if human relationships were honest and straightforward, and people said what they meant and meant what they said?

What if there were no human pettiness, no human wars and no human-caused chaos?

Wouldn’t it be great if that were the expected mode of operation?

Put the people with autism in charge, and I believe it would be.

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Posted June 28, 2018 by swanatbagend in autism

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Suffer The Little Children: Part IV in my Autism series, Updated   Leave a comment

So today I’m writing about experiences that people on the autism spectrum have had at churches around the United States.  Some people were children, one an adult when I talked with them about what it was like to attend church or youth group.

There was a general sense that other people just didn’t know how to interact, so sometimes families with people with ASDs (autism spectrum disorders) were just left alone, and did not have any overtly negative experiences.  One respondent told me that her son had a very positive experience at the church they were currently attending.  People were accepting of differences, and the congregation was friendly.  At this church, the pastor had a grandchild on the spectrum, which she said made him more understanding and inclusive.  At two other mega-churches they attended before the family found this small Southern Baptist church, their son was directed to the special needs department, which he did not need as a high functioning individual.  This lack of understanding of his actual situation seemed patronizing to him and he would not go back to that church.

Another mother, Shelly, met personally with people in leadership roles in three different churches to explain her child’s situation.  Her older teen-aged son is a talented musician who wanted to get involved by playing in the worship team.  They agreed to include him in the band.  However, when some difficulties arose in getting all the musicians in sync, instead of spending the additional time it might have taken to help him get up to speed with the band, the leader decided this young man on the spectrum was too much trouble, and he was asked to leave.  Shelly also found out later that the pastor had said unkind things about her son during a church leader’s meeting.

In a different situation, as she moved up from the middle school group, Kimberly’s daughter Julie found the high school scene to be focused on socializing and the teens who were leading the worship music.  The environment was supportive of the musical talent of these kids, leading them to rise to the top in what quickly became a popularity contest, and girls and guys who had previously been Julie’s friends in the middle school group began to ignore her.

When Kimberly met with the youth group leader to explain about Asperger’s, he wanted to assign another girl to be her friend, but Kimberly said Julie would see right through that.  She suggested instead that he create more structure for the group meetings, as she knew there were other introverted teens who were having a hard time with the long periods of unsupervised small talk and general chaos.  His response was that the majority liked the arrangement as it was, and as the group was growing quickly, Julie would just have to get used to the way things were.  Due to all the factors that were making youth group overwhelming for Julie, Kimberly decided to let her stop attending.  Then she was criticized by other parents in the church for not requiring her daughter to attend.  The family eventually left this church for one that was much smaller, where they are happy.

Most of these situations while hurtful, were not overtly dangerous.  Unfortunately, having autism apparently does put you in literal danger.  Marie left her three-year-old in the church nursery.  He was found walking along the road outside the church by people who happened by and brought him back in.  The reason?  The male nursery worker let him leave the room because he had “had enough.”  I’m not sure what behaviors a three-year-old could exhibit that would justify “releasing him into the wild” to fend for himself.

Marie also had a younger son knocked down and kicked in the head during another church’s children’s program.  No adults intervened, and when she let the leadership know, they didn’t take any action.  In both of these cases, nobody was concerned, let alone apologetic.  I’d like to provided more commentary, but on this one, I’m speechless.

The church seems to have a hard time with anybody being different.  I think this problem extends far beyond the world of ASDs.  No room is left for people to be different and for people to be loved as they are.  If you don’t raise your hands occasionally during the songs, get into the music and smile at everyone, and if you aren’t comfortable holding hands during group prayer, you are criticized as being un-Christian.  Yes, a pastor actually told the congregation from the pulpit that if you did not join hands with others, you were un-Christian.  There’s a very small grain of truth to that–but it doesn’t take into account other realities.  It dismisses the challenges those with ASDs face every day.

If a person has extreme social anxiety or a physical condition which would prevent her from holding hands during a group prayer time, this would probably be understood.  The same consideration should always be extended to any person who is worshiping in a congregation.  Consider that for people on the spectrum, sensory input or a change in routine can be overwhelming, and these challenges can be something as simple as your talking to her while she is worshiping, or asking her to move out of her accustomed spot.  These are concerns that neurotypical people often are not aware of.  But now you know–large group gatherings can be a literal minefield for other minds.

Your feelings may get hurt by what you think is odd behavior, but the focus should be honoring the needs and feelings of the other person.  Your ideas about what is socially acceptable behavior may be upset, but what is important is that members of the body of faith experience the grace and peace the church exists to share.

Love the person as he is and where he is.  Continue to acknowledge the person even when you don’t seem to be getting a response; smile when you see him; ask how he is.  Over time, your consistent love and kindness will be rewarded.  There are many valid reasons why a person may not be either able or willing to do exactly as the majority of the church body is doing during worship.  These reasons should not keep a person from being loved, valued and included.

 

 

Posted April 18, 2018 by swanatbagend in autism, the church

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I Never Thought I’d See This   Leave a comment

What a glorious night!

We were at the theater, an older, slightly worn, but very classy one near our city’s downtown.  The lights went down.  The story and music began and I was as entranced as I could be.  Beauty and the Beast has always been one of the best Disney movies ever.  It’s a story in which more than one character is transformed by the events of the story and by love.

By the end of the show, when the cast took their curtain calls, cleared the sets and headed for IHOP to ride the wave of adrenaline, I was
riding it with them.

Remember the line from My Fair Lady?  “I could have danced all night, and still have begged for more…I’ll never know what made me so excited, why all at once my heart took flight!”

Well, unlike Eliza Doolittle, I knew exactly why I was so excited.

My child with an autism spectrum diagnosis was on the stage, acting, dancing and singing.

In those few hours, amidst the emotions that flooded me, came one that has been uncommon: hope.

Why?

Before my eyes was the proof that his life for the past ten years, my life, our lives together were not destined to continue status quo.

I wouldn’t have believed it, even a few years before.  My life was circumscribed by the limits of what my son could handle and the number
of triggers he could cope with per day.

Our lives together were relatively simple, with relatively few outside activities for anyone, because between him and me, we could only handle
so much stress.

He went to occupational therapy because he had to and with a reward program to motivate him.

He went to a STEM class, which was OK because he liked the science topics and because I was with him.  He could never go to any group
activity without a parent to help maneuver the social situation.

He went to church with us because that was non-negotiable for me, but we modified our time there for him.  Most of the time, we didn’t even
try to have him participate in the children’s program after multiple days where he argued with and kicked the volunteer teachers, and we drove two
cars so my husband and I could take turns staying longer to visit or serve, while the other parent took our son and other children home.

He went to the homes of a few friends we had.  They came to our home and those times were usually fun and enjoyable, although there were also
misunderstandings that led to melt-downs.

If we invited a group of friends over, I had to be ready to de-fuse problems or take my son to his room for a cool down time.  I could
never, ever, ever anticipate a straightforward visit for me with other moms or a fun time for him with the other kids, because
invariably, some comment or event would make him either irritated and frustrated, or explosively angry.

There were months and years when I pretty much gave up on my life ever looking different.  We homeschooled and we stayed home a lot,
because that is what we could handle.

But — there he was on the stage.  All because a teen theater group’s director was willing to include him.  All because she had been led to
start the conservatory nineteen years earlier.  All because the environment was one of respect, care, professionalism and mutual growth.

All because God does amazing things.

Posted July 6, 2017 by swanatbagend in autism, homeschooling

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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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