Archive for the ‘autism’ Category

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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An Aspie Never Stops Being Naive   Leave a comment

This post was published on The Mighty recently, as well.

 

 

I thought I’d outgrow the personal weakness. I thought that I understood the tendency, and knowledge is power, right? So, I was sure I could fix it. I could stop being naïve.

However, I have come to the conclusion that while I have learned to be attentive to situations in life and to get wise counsel from people I trust to help me understand the complexities of a situation, self-awareness alone cannot transform me.

As an Aspie, I’ll always be naïve. Even as a self-aware Aspie I’m naïve, because I always take things literally.

Even knowing there are often situations that can’t be taken literally, my instinctual reaction is to take things literally. Whether they are directions on a flyer that comes with a product, spoken words given by an authority figure, a joke — it doesn’t matter. I don’t get the nuances a neurotypical person would get.

A funny example is an early and sleep deprived one, so maybe I’m off the hook there. I was at scout camp and a couple cabins were driving the counselors up a wall by staying awake late at night giggling and singing goofy songs. After several nights, they threatened us by telling us they’d wake us up before dawn, make us take a hike and then see how much we liked being without sleep.

They really did it. It was pitch black and we were to get up and get ready for a hike. I was so completely out of it, I didn’t understand what was going on and had to ask again for instructions. These were given, probably with the thought of “how foolish could this child be,” with step-by-step directions of what to do, which presumably included that I should dress myself. I was certain, in the sleep induced haze of four in the morning, that the counselor said to get my underwear. Only when I was sleepily milling around in the crowd of girls did I realize no one else was carrying underwear with her. At least I had put my clothes on before going outside.

The good side of taking things literally is that I am a straightforward, truthful person who expects the honest best from others. I look for the truth and I tell it like it is.

Sometimes though, I wish I weren’t so conscientious and trusting. I remember a period of about eight months in which I waited for two different people to get back to me to arrange a time for our families to get together, because they had said they would. Part of that was just me being too tired to pursue it myself, but most of it was me believing what they said. Both people had told me they weren’t sure when they could meet and they would get back to me when they knew.

At that point, I was mid-40s, old enough to have been around the block a few times. I was also old enough to have it explained to me more than once that people will say things they do not truly mean. Intellectually I understand. But when it comes down to the actual, personal situation, if I’m interacting with someone who seems sincere, it’s very difficult for me to accept, even months later, that the person was just talk.

What about sarcasm’s effect on me? Only if it’s really obvious. Often, I don’t get it and I am not sure how to respond to what you say.

Practical jokes? Please, don’t even try one of those on me. I promise it will not go over well.

Even with the big stuff, I’m still naïve. My husband worked for 12 years at an employee-owned company. He loved the work and the people he worked with. Clients asked for him to manage their projects. He was respected, an ideal employee. He had received a signing bonus to take the job in 2005, so I guess this made me think the company was so invested in him they would never let him go. Neither one of us saw it coming, so maybe Aspies aren’t the only naïve ones. Everything I observed about his situation at work was valid. But in my naiveté I did not understand these observations were not eternal guarantees.

That’s what we all want, isn’t it? Eternal guarantees? I am a person who believes, hopes and trusts other people to be faithful, loyal and true.

I’m not certain the hope I have is a bad thing. It’s embarrassing at times. It makes me look foolish, which I hate. However, I’d rather be me. I’d rather take things at face value. I’d rather believe you than not. I believe that if we believe each other, it makes the world a better place.

Posted May 22, 2018 by swanatbagend in autism, relationships

How Churches can Welcome Those on the Autism Spectrum   Leave a comment

This blog was published on The Mighty last week and I’m sharing it here as well.

 

Here is how churches can welcome those on the autism spectrum.

1. Provide training about autism for church leadership and volunteers.

Include information about autism: what it is and what challenges people on the autism spectrum face when socializing in large (and small) gatherings. Let the staff, small group leaders, and Sunday school teachers know that a person with autism may not look different, but they may act differently than a typical person. This training could be during a Sunday school hour or a half hour session as a component of a larger training. The key thing to convey is no matter how different someone on the autism spectrum may seem to be or how unexpected some of their behaviors may be, love and respect for the individual with autism and an acceptance of that person is what matters most. With an increasing number of children and adults who are diagnosed on the spectrum, chances are they will be visiting your churches. It makes complete sense for the church to be prepared to welcome them.

2. Be the one who initiates.

Individuals within the church need to initiate and develop relationships with person on the autism spectrum. They also need to understand that to fully include someone with autism may require accommodations. Don’t assume individuals with autism will blaze their own trails into the church as a whole, a Bible study or small group. You will need to be the one to make the effort (as you would with any new visitor to your church). Some people with autism may have a hard time remembering names and faces, especially in a large group setting, which might be overwhelming, such as a chaotic church vestibule. When you see the person at church, greet him or her, and don’t be offended if it takes a while for him to remember your name. Don’t be offended if people on the spectrum seem stiff and unsure; they might be doing their best to cope with sensory overload and trying not to have a meltdown.

3. Focus on authentic relationships.

Once the initial contact has been established on Sunday morning, focus on authentic friendships with the person with ASD. Follow up with by checking in and asking about some detail that may have been shared during a previous visit. Many people on the spectrum have special interests and may love to talk about those — make time to listen. Whether your follow up is next week at the next meeting, whether it is Sunday morning, whether it is by phone or text in a few weeks, it doesn’t matter. Just be faithful to follow up.

4. Invest time in cultivating friendships.

Do something practical to show your interest and care. After a few meetings, invite the person to join you for a dinner in your home or a get-together outside of church. If a specific need has been mentioned that you could possibly help with, offer that help. If such an invitation seems to make your friend uncomfortable, keep focusing on building an authentic relationship until the trust is established to spend time hanging out outside of church.

When people feel included in a group, they tend to feel more comfortable — it is no different for people on the autism spectrum. All people should feel they belong in their church family. The church will only benefit from the gifts of those on the autism spectrum. They have gifts and talents to share, wisdom and insights to offer.

Honestly, it only takes one person to begin the transformation of your church into a place of welcome for those who are different. You can start this by providing awareness training and creating an ongoing plan for the church and its members to be hospitable and accepting.

Posted May 22, 2018 by swanatbagend in autism, the church

Suffer The Little Children: Part IV in my Autism series   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.

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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We Are the Children of Tama   Leave a comment

At least I certainly am.  For years, I have quoted lines from books and movies where they seemed relevant, and for some reason, my children do the same.  Lots of laughs and more than that–it has become a unique language for our family.

So I always loved the Star Trek: Next Generation episode about the children of Tama.  They were a race encountered by the crew of the Enterprise that communicated entirely with literary allusions.  The crew was clueless in these interactions until after the leader of the Tama kidnapped Captain Picard so that they could experience the challenge of facing a foe together, thus building a relationship so they could understand each other.

At our house, you might hear allusions like this.  See if you can identify the movies.

Someone drops and breaks something or can’t finish a chore.  I say I will clean up the mess or cover the work: “I’m a compassionate insect.”

Some satisfying conclusion to a mess we were in: “Yes, Rico.  Ka-boom!”

Nobody knows what to do in an unfamiliar situation: “I have no memory of this place.”

Discussion of how I will respond if the kids take this or that action: “And then we have the screaming problem again…”

When departing from dear friends: “Have fun storming the castle!–It would take a miracle.”

And so forth.  There are plenty of other times when there’s less of an obvious context, where a phrase just fits the moment we’re in, or somehow reminds us of a past incident.  We get the context, however.  There are many lines we love that sum things up more perfectly than any analysis any one of us could give.  So, I just assumed other families quote movies, because like, why wouldn’t you?  It’s fun.  It’s succinct.  It gets a laugh.  It communicates.

It was only within the last couple of years that my reading about behaviors typical of people with autism led me to understand that this could be called echolalia.

Echolalia is defined as repeating speech or lines that have been heard.  If you look at the definition in some places, it appears the average person would see no context for the line that was repeated.  Based on our personal experience with our movie quotes, though, I really doubt that’s true.  Probably there is a context every time to the person on the spectrum; it’s just that the neurotypical can’t see it.

When we quote movies to each other, there is a context.  We are communicating.  It works beautifully.

I found out today that we aren’t the only ones.

In this New York Times essay, Ron Suskind relates how his son on the autism spectrum connected with an animated character from a movie, when he couldn’t communicate with anyone else.  Granted, in his situation his son had no other way to communicate for many years.  But for both families, utilizing other stories built connections in ways typical conversation was unable to do.

There’s communication going on here–if you can speak the language.

Posted February 7, 2018 by swanatbagend in autism

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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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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