Rules of the Road

Everyday most of us travel through an incredibly complex social world.  A world where we are continually adjusting our behaviors based on the situation, and where nonverbal cues, such as body language and facial expression inform our every turn.  Certain subjects are appropriate in certain situations with certain people, and you have to, almost instinctively, know which is which.

And the contradictions!  Be polite and courteous - but don’t be taken advantage of.  Be honest - but tell a “white lie” to spare someone’s feelings.  Be interested in other people - but don’t pry.  Share your own interests - but don’t be overbearing.

When you stop and think about it, it’s amazing that anyone can figure it out.

And that’s the challenge for people with autism, most can’t “figure it out” instinctively. This complex society, with its undefined and changing set of rules, traditions and mores, must feel like driving around a large city with no signage or maps.  

Or maybe it doesn’t. Maybe some people with autism are blissfully unaware of the scope and contradictions of the social environment. 

Sometimes it seems that way with William.  He will cheerfully greet an older student at the bus stop and seem almost non-plussed if that greeting isn’t returned.  He doesn’t know that he is a “lower rank” and shouldn’t reach “up the ladder”, so he doesn’t feel particularly spurned.

He will make a comment, such as “your breath smells bad” or “your house is really messy” that seems incredibly rude to us.  However, he’s really just making an observation, and he has no judgement.  We judge it, and judge him for saying it, but he is just noticing and remarking.

The world should be more like William’s.  Where there is no judgement, just an observation.  Where there is no social rank, and friendliness is the order of the day.

But it isn’t.  

So, we try to codify it for him.  Make a map of sorts, and an atlas.  And make it simple enough to remember and follow, but complex enough to accurately represent the labyrinthian society.

Luckily there are resources for this.  William is working on individual behavior skills  with a specialist at Fraser Child & Family Center.  (Last week he introduced the “filter” concept.)  Their long-term goal is to have appropriate social interactions 80% of the time.

Which would be a good goal for all of us!

First Day of School

Photograph courtesy of Matt Blum Photography.

Today was the big day.  William got on that bus for middle school. At 7:15, almost two hours earlier than he started elementary school.

With a color-coded organizer in his backpack and multiple copies of a color-coded schedule, he took a big leap today.

A leap from the cloistered environment of elementary school to the three-story labyrinth of the middle school.  From a place where the gap between ages 5 and 11 seems benign compared to that from ages 11 to 15. From one primary teacher that can really get to know him, to six different teachers that won’t have that same opportunity.  From a lunchroom where there might be 75 kids at most, followed by recess, to a cafeteria which strains to hold 250 kids and no outdoor time.  Yes, it’s a leap.

And, it is a leap of faith for us as well.  Faith in his desire to go to public middle school, and faith in the school system to do right by him.  I suppose it shows faith in ourselves, as well, to advocate properly, to guide just enough, and to continually assess if this is the best fit.

Although I have to say right now it feels more like a baby step of faith than a leap.  But increasingly, I see that this may be how it works for me.  I had enough faith in all of us to make it through one day, today, and it went well.  William got off the bus at 3 o’clock tired and hungry, but smiling and ready for a high five.

Which is a step, or maybe even a small leap, in the right direction.

Wearing My Heart on My Hat

One of the unique challenges of parenting a child with high-functioning autism is the invisible nature of the disability.  For William is definitely a normal looking kid.  (Actually, he’s darned cute, if I do say so myself!)

One friend told me that “It’s lucky he looks so normal.”  To her it’s a good thing, that William can “pass” for neurotypical in the superficial world.  And, maybe it is in some ways. 

But in other ways having a child with an “invisible” disability can be a drawback, especially when your child’s behavior doesn’t jibe with his “normal” appearance.

William is a social type that one book describes as “outgoing but odd”.  He is preternaturally friendly, and it doesn’t matter if you are standing in line at Starbucks -- he wants to meet you.  And ask your age, birthday, favorite color, favorite number, and if you have a Wii.  

People have generally been solicitous of him, sometimes even charmed.  But as he gets older, and bigger, this “outgoingness” seems a little odder. It can come across as prying, precocious and maybe rude.  And I’ve noticed people at the dog park, the ball game, and, yes, in Starbucks, who don’t quite know what to make of him.

If he was a child with Down’s Syndrome, or had an obvious physical disability, it would be different.  Unexpected behavior would be attributed to the disability, even if it wasn’t actually related.  

With autism, not only is the atypical social behavior related to the disability, it IS the disability.  How ironic -- this social disability that would be beneficial to be visible in society, is unseen.

So I wore my “Autism Awareness” hat a lot this summer.  To the dog park, Target Field, the State Fair and all over Boston.   It’s a subtle message, but people sometimes make the connection.  I saw a young mother on the swan boats in Boston’s Public Garden noticeably relax as William was "making friends" with her daughters when she saw my hat. 

Though it says “Autism Awareness” on it, this is what I hope the hat says to those we meet: “I am the mother of this boy with autism.  His disability makes it hard for him to socialize according to the ‘normal’ rules.  Please talk to him and see his heart, his soul, his optimism and his love. Thank you.”