Wednesday, June 20, 2012

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. 

3 comments:

Anonymous said...

Sounds a lot like ME actually.

Courtney said...

Hmmm. A lot of what you described in your list sounds like me as well. I've not done any research on these disorders, nor have I spent time with your little one recently, so I can't leave an informed opinion--I'll just have to go with my gut. Could her spatial problems be related to her vision, or have you already ruled that out? I started wearing glasses as a 2.5 year old.

Regards being anxious about social interaction, as well as other items on the list, that's introversion all over the place. Given the choice, even as a 28 year old, between working on a project or spending time with a group of people I don't know, I'd run for the tools. Even when I spend time with people I like, I find myself exhaling when I leave the party. Introverts are stimulated by focus, work, and being alone. They're more likely to be artists, writers, readers, engineers, musicians etc.

You're a good mom and you're hoping your baby is healthy and happy. I hope she is, too. Like I've already said, I know nothing about the disorders you listed or about how your little one is behaving, but my gut is saying she's just a little genius and may be awkward around people. If that's the case, she'll be fine! I avoided other kids on the school bus when I was five, opting to sit alone with my thoughts so I could stare out the window. I had ONE best friend from the time I was five until I was 16. I've never been one to desire the center of attention, nor have I ever had a huge gaggle of friends. I have a couple of close ones, the rest are acquaintances. The people I love I love fiercely.

My introversion is something I love, because it allows me to focus intensely on my passions, rather than spending time gossiping (as many people tend to do). In fact gossip bores me (except if it's unusually juicy, I'll admit to that). Unless it's something deep, like politics, religion, or books, conversations tend to leave me yawning. That's also introversion: we hate the small talk. I was shy as a youngster, but because of my focus, I've found things I'm good at, and have built my confidence upon my skills and not on what people say about me. In that way, I think I'm healthier than the most gregarious of people.

I'll pray for your baby girl, and hope she's a talented introvert, and that you'll be blessed with her creative and active mind!

Sonya said...

I am remembering the insightful speech you gave at your high school graduation comparing your classmates to the Star Trek crew and you even started out with a joke...And you do a good job of understanding the humor of G.K. Chesterton, and British humor,right? Just a couple of examples of you being you. Some of what you see is personality and/or the development of personality. You were such a sensitive child we needed to remind you not to wear your heart on your sleeve. Now I wonder if I am responsible for you being so introverted...but you turned out pretty fantastic and so will Nikki.

We all get anxious; especially regarding our children. Being a parent opens a whole new area of the heart. I have to remind myself frequently that God loves my children (even now that you are all grown) more than I can begin to imagine and then I have to rest in Him.

Hope we can get together sometime soon so we can talk more about these things. Love you.