The perils of researching these things

I've been doing some pondering on Autistic Spectrum Disorder (ASD) since our trip to the Educational Service District (ESD) last month.  It turns out we had Boogaloo evaluated one week before the ESD went on summer break, so they won't be able to tell us anything more until the middle July.  In the meantime, I saw a little book entitled In the Syndrome Mix by Martin L. Kutschler (2005.) on the new books shelf of my church library and decided its presence there was providential.  Rather than spend half the summer biting my nails, I decided to do a little research on my own. 
According to Kutschler, disorders on the Autistic Spectrum are characterized by a lack of "theory of mind." Theory of mind means that a person can recognize the mind in another person with all the  possible differences that that mind might encompass. In other words, a person with ASD just can't tell what another person is thinking or feeling.  The programming to recognize and decipher social behaviors in the social context isn't in the computer.  People with certain ASDs may be very intelligent and speak very articulately, but they won't know how to interpret the situation in front of them.  As a result, they can't share experiences with people.  Even the most adapted people with an ASD may seem rude, inattentive, or odd to people who inherently understand social interaction. 

That's an intimidating prospect.  It's made even more intimidating by the feeling that I can understand that a little bit. 

 If my source is correct, the Boo most likely does not have Autistic Disorder (its proper name, rather than Autism) or Asperger's Syndrome, the two most recognized disorders on the Autistic Spectrum.  These two disorders are characterized by a lack of interest in interacting with other people, and the Boo loves to interact with other people.  She'll go up to any child on the playground and try to play with him or her.  Neither does she have Rett's disorder or childhood disintegrative disorder, which are ASDs that can be firmly diagnosed because they involve reaching a certain point in development and then going backwards.  So that leaves a list of disorders that don't actually have official names yet, and in that list I find two that I think are plausible. 

Semantic-pragmatic language disorders (SPLD) involve difficulty and delay with the use of language and how it relates to people and things, and I thought this was a pretty good fit. Apparently kids with SPLD are very good babies, but their language comes slowly and in pieces. They have difficulty with give and take in conversation and they will repeat things that they don't understand. They have trouble reading what's socially acceptable, but they aren't inclined to act out or break rules. They also have trouble with symbolic play (imagination). If the Boo didn't put her babies to bed before naptime, I would say SPLD fit her to a T, but she is so imaginative, and that is such an important trait of the disorder that I think this can't be what she has.

Non-Verbal Learning Disabilities (NVLD) might be a possibility.  They involve trouble bringing the pieces together to make a whole.  People with NVLD have linguistic, spatial or motor problems. I don't see any problems in Boo's motor skills, but spatially, I see a lot of problems.  She doesn't get spatial directions, and she runs into familiar objects a lot.  Socially, she is gradually picking up on the notion of give-and-take conversation,but I am constantly thinking, "Kiddo, you should have developed this already." These are all traits of NVLD, as are rote speech, pedantic speech patterns, and clumsy monologues.  A child with NVLD likely would not answer questions or pick up on the fact that the last sentence she heard was a question.  That's my Boo all over. 

Finding the Boo's attributes under the less pervasive disorders made me feel good.  It intimates less work for me, for one thing, and less heartache for her.  The brain can make databases for semantic and pragmatic speech and social activities. Socializing may never come naturally to her, but she'll be able to create a manual override system.  Sometimes, when I analyze my own thought patterns, I think that's what I've done to get along.  It was disturbing, really, to find so many of my own attributes in this chapter:

• tendency to monologue  -- check
• can't catch the tone of a joke or conversation -- check
• prefers reading and writing to playing with peers -- check, and double check as a child
• prefers working with objects/projects to working with people -- check
• is often thought of as rude or awkward -- actually, I wish people would have brought this up to me more often in an analyitical sort of way
• finds that social interraction makes her anxious -- check, like heart-skip-a-beat anxious
• depends heavily on routines and familiar spaces -- less so now, but check

I brought this feeling up to Seth last night because it really depressed me.  Just by indentifying these attributes with mine, I felt diminished, like I'd been socked in the solar plexus and flattened out to a diagram.  I also felt a little guilty.  What if the majority of Boo's problems come from me?   Seth laughed and said he thought my real disorder is hypochondria.  He may have a point.  But where does one draw the line?  That's an important question.  When does social awkwardness become a disorder?  The textbook answer is when the problem debilitates you.  Yes, but in what sense?   How can one tell the difference between competent introversion and high functioning ASD?  Does it all boil down to the question of happiness?  I don't know.  I guess those are questions for the experts. 

"Extremely Loud and Incredibly Close": review and commentary

My husband and I watched Extremely Loud and Incredibly Close on Monday night.  Seth has been wanting to see it for a while.  I'd seen the advertisements but I hadn't paid enough attention to even read the synopsis, so I didn't know what it was about.  My mistake.  This is a movie that is worth seeing in every way. 

Not only is it about a poignant story that every American over the age of twenty should be able to appreciate in some way, but it's also beautiful, realistic, and personal.  Thomas Horn, who plays the main character and narrative voice, is completely engrossing as a boy with indeterminate Asperger's  Syndrome who is trying to make sense of the death of his father, the only person who really understood him, in the Twin Towers on 9/11.  He's supported by an array of award-winning actors and actresses and led by a bittersweet script that keeps him personal  even when the obsessive and anti-social parts of his disorder are abrasive and hard to deal with.  The photography captures the dirt and hustle of everyday, industrial New York City and sometimes manages to make it beautiful, and the story has hope, even though we know from the beginning that his quest is pretty hopeless.    

I knew the movie was going to be gut-wrenching when the first shot was a picture of a man's dress shoe, upside down and apparently falling through a clear blue sky.  The only sound was the deafening whistling of the wind.  It was like a kick in the gut.  We all saw the people jumping out of the burning offices, but how many of us thought about what it would feel to freefall to the earth?  What would it have been like in those moments before death?  Apparently the author or the director had given it some thought.   Then twenty minutes in, I realized that Seth was sniffing, and I was sniffing.  Never outright tears, but lots of sniffing, and the sniffling continued through the whole movie. 

Of course, watching the movie was emotional.  We might not have been at the scene of 9/11 or lost anyone to it, but we experienced it.  It felt like our guts were ripped out that morning as we watched the towers fall and the last survivors stagger out in a cloud of dust.  We watched for weeks, praying for yet another survivor to be uncovered in the rubble.  We cheered the stories of heroism with tears in our eyes and wept openly for the families bereaved.  9/11 was one of the touchstones of our generation, like watching the Berlin Wall come down (I was 9 when that happened.  I got to stay up late to watch.), only in the opposite way.   The fall of the Berlin Wall put us on top of the world.  9/11 brought us back down again.

When 9/11 happened, I was in a van, driving to a ghost town in the middle of the Iowa cornfields.  My writing 201 class was focusing on setting, I think, and Dr. Schaap always took his 201 classes out to this place.  We listened to the radio reports on the way out and on the way back, and it was like time and space had been transcended because we were so close to what was happening in New York City.  In between we sat among the tombstones of people who had died 150 years ago, most taken too soon, at least by our standards.  It was a kind of anchor, I suppose, to remember that we all die, and that death is often a tragedy.  Even 150 years couldn't really make sense of it, but it could put it in context. 

I think what Extremely Loud and Incredibly Close does is add some context to the loss of 9/11, to remind us that fire and hatred aren't the only way we can lose someone, to show us the basic human relationships that were interrupted and the relationships that were reforged.   It wasn't entirely enjoyable, but it was a good movie.