And Autism Took That Away   Leave a 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 formats 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?

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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It’s Gonna Get Better   2 comments

I am thinking now that I have probably spent most of my forty-eight years waiting for something to get better or be fixed or come to pass, on the assumption that when it did, everything would be in place and I could go forward with my life instead of being in wait mode.

What I’m thinking today is that my mistake was thinking there would ever be a time when every aspect of my life was perfectly aligned and all working the way I desired.

I guess it’s natural to resist when things don’t go as we want, and to work to make them better, and to take action to achieve a dream or better outcomes.  There’s nothing wrong with fixing what’s wrong.

Where I get tripped up is thinking that there will be an end point I reach solely by my power, where finally, nothing is wrong.

While I devoutly wish for joy and happiness and safety for all people, and let’s face it, especially for myself and my dear people, that is not going to happen.

But.

In the meantime, there is much happening I’m going to rejoice in.  It’s not perfect, but it is good.

I don’t have all the energy I want, but I’ve got enough to do what I need to do.

I don’t have all the success I want, but I in general, I like my life and have meaningful work to do each day.

I don’t have all the health I want, but I’m still able to go out and about, do fun things like take the family camping in Florida for spring break, as long as I pay attention and take care of myself.  I can’t do everything I’d like to or dreamed of, but there are many things I can do.

I don’t have all the money I want (amazingly–what about you?) but I have more than enough for myself and every good deed.

I don’t have the perfect life for my kids that I want, but they warm my heart with who they are, I thank God for the opportunities they have, and I thank God that they are in his loving grip.

I don’t have all the friends I want, but there are people in my life who are good, and I thank God for giving them to me.

I don’t have all the time I want, but I have–now.

 

It’s his job to direct circumstances and move the world forward to perfection.  It’s mine to live in the gap between the future and the current reality.

Posted April 10, 2016 by swanatbagend in waiting

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Kentucky Doesn’t Have Much to Do with Ohio   2 comments

Have you ever noticed that once you cross the bridges in Cincinnati and hit the north side, there are very few Kentucky license plates to be seen?

I’ve often noticed that folks from some states just don’t travel as far afield as others.  When we go west on camping trips, we always study license plates, and also on our way to Florida.  On those trips we see Michigan, Minnesota, Texas, Colorado, all the time.  Ohio sometimes.  Eastern states such as New York, New Jersey, North or South Carolina, sometimes.  Even Canadian plates aren’t all that rare as you drive around the Midwest.

But what we almost never see then are plates from the south.

And, in our area what I’ve noticed is that we (speaking for Kentuckians as a group) don’t travel far either.  In Tennessee there aren’t many Kentucky plates.  In Missouri, there aren’t many.  And in Ohio, the closest of all to our area, there are very few.

Kentucky just doesn’t seem to have much to do with Ohio.

Before I moved here I wouldn’t have believed it, but there really does seem to be a dividing line in some ways that says that Kentucky is still part of the south, and not part of the Midwest.  It’s an interesting blend of both, I think, but as far as travel habits, and institutions and cultural patterns that people identify with–I think Kentuckians for the most part would definitely see the Ohio River as one river that is too wide to cross.

My son attends college in Ohio, and while I met two other Kentucky parents there at orientation, I didn’t have the sense to exchange contact information with them so we could carpool together later.  I’ve never found them again, and, further, while my son has many classmates from Pennsylvania–including his roommate, some from varied countries, and even some from little ol’ New jersey, he has met nobody else from Kentucky.

At all.

It’s interesting.

Posted March 29, 2016 by swanatbagend in citizenship

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The Wounds of God   Leave a comment

Walking through Lent really does make the joy of Easter more real.  I’m glad I’ve taken the time to think about what Christ did, using some Lenten devotionals recommended to me.

Also, last night I went to a Good Friday service at a local Lutheran church.

I needed that.

And this is one of the things I got out of remembering what Jesus did for me.  This is why I know all of this is real.

His suffering is not imaginary suffering, any more than our suffering is imaginary.

That’s the point of the incarnation.

Posted March 26, 2016 by swanatbagend in reality

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