How we handle Asperger’s Syndrome

BigGuy is not what most people imagine when they think of someone with Asperger’s.  They see my personable and extroverted kid who likes an audience and think I’m out of my mind because “THAT’S not Asperger’s”.

Oh contraire… but it is–I assure you.  Not all kids with Asperger’s are the silent, introverted, cannot-look-you-in-the-eye type.  Meet my guy…

When we moved to Illinois, we landed on a block that was like the handle of a coffee mug–attached at both ends to a busier street and very little traffic.  There were 13 kids between Kindy and 3rd grade when we were there (and BigGuy would have been in 1st grade).  The kids could walk out the door and just go.  It was kid nirvana.  He left after breakfast, came to get lunch (which the kids would sometimes take and picnic together), came back in for dinner and continued until everyone went in to bed.  Once, after a 13-hour day of playing, he had a complete meltdown at having to come in because “he barely had time to play with his friends”.

Social. animal.

BigGuy doesn’t really understand social politics or subtleties.  He doesn’t read social cues (and doesn’t exhibit them appropriately, either).  So he looks like a happy-go-lucky 10yo boy… a bit inattentive, a little quirky, but not “impaired”.

But he is impaired.  And the problem with THAT is that people expect him to behave and respond like a neurotypical kid when he’s not capable of that.  Do you see that picture at the top?  That is our son with the daughters of a family we love deeply and see at least once annually.  He loves being with them because he can just be himself and not be alone.  There are no politics.  I mean, sometimes there are sibling politics and the politics of who gets to use the computer; but he seems to navigate that (and when he doesn’t, the girls work it out because BigGuy is just BigGuy and they love him for who he is and simply know what he’s not going to be able to figure out).  That picture is my son at his most relaxed and accepted.  And the girls are still young enough not to attach any unintended meaning to holding hands–they’re all just friends.  And it’s wonderful.  I hope it’s a lifetime of friendship like this.

PLEASE hear me: my son has come a LONG way and it’s not over.  My admission that he’s not functional in some things is NOT equal to saying “He’s always going to be like this and he’s doomed”.  This is a factual statement of where we are in life right now.  Leaps and bounds from where we were, and far from where were will land.  I have a hard time with the contingent that believes that if you acknowledge that anything sucks about the autism spectrum,  you don’t love or accept your child.  Guess what?  It sucks that eating chocolate cake every day will make me fat.  I still love chocolate cake and will never stop eating it.  And I will probably exercise more and/or eat less other things to try to balance out my love for chocolate cake so it doesn’t become unhealthy.

There are things that suck about my kid being in the autism spectrum.  Trying to help him learn to manage the things about it that he is capable of learning does not mean I don’t accept my son for who he is.  It means I love him more than life, and I want to make his life as painless for him as possible.  Frankly, teaching him these things are a lot less difficult on him than most neurotypical kids endure in math class.  We are EXTREMELY sensitive to his sense of self.  In fact, that is largely how we came to homeschooling: because he was keenly aware (at 4yo) that he was “the problem kid” in his class.  And I wasn’t having that.  Not for my kids.  Life would do that to them well enough in time and that time didn’t need to start at age four.  So we are very careful to ensure that BigGuy knows that he doesn’t operate like a lot of people, but that doesn’t make him a bad kid or a problem kid.  It DOES occasionally get difficult for people around him to understand and they can take those feelings out in a lot of negative ways.  We’re teaching him how to interpret that.  I have a hard time with those in the autism community who would say that trying to help my son navigate the world with greater ease equates to not accepting him for who he is.  I might see their point if I were making my son really uncomfortable or unhappy in the process; but that’s not our situation.

BigGuy has a lot of problems figuring out how to fit in.  Some of that comes with the age; but now multiply that with the confines of Asperger’s–where you can’t figure it out.  One would think that his IQ would give him the intelligence TO figure it out, but Asperger’s changes the logic with which he works.  So he’s not seeing the world using the same logic that you or I are.  Things that make sense or come naturally to us just don’t make sense to him.  Kids with high IQs withOUT Asperger’s have that problem, too.  I’m just saying that  BigGuy’s intelligence isn’t going to outdo the Asperger’s filter with which he sees the world.

He knows he has Asperger’s and he knows what that means.  When we first shared this with him, he felt like if he just TOLD people he had Asperger’s, they would accommodate his differences.  That is not our family’s position.  We’ve told BigGuy that having the diagnosis means that WE know what needs to be worked on to correct.  We can do that because we know that many of his deficits ARE things he can learn to accommodate.  If he had a different condition or was even more severely impaired autistically, we would never make such a statement to him.  And truly, we know there are aspects of his condition that might not be able to be overcome.  But those are things that BigGuy isn’t aware of yet.  We’ll deal with those when we get to them.

In the meantime, he undergoes pretty rigorous training on “how everyone else interprets some of these things you are or are not doing”.  In the last month, this has been mostly about looking at someone when they’re talking to you.  Despite the fact that I personally understand the ability to listen to someone even while engaged in something else doesn’t make it easier for me when BigGuy is NOT looking at me when I speak to him.  I explained to him that the reality is: I don’t know when he’s actually paying attention or when he’s blowing me off.  So whether you actually need to look at someone to pay attention or not is irrelevant; because the world operates on the unspoken rule that someone is listening to you when you are looking at them.  It’s how you speak body language to people.

This week, a bad night at choir prompted a more in-depth discussion/education on body language.  The fact that he doesn’t need to sit up straight, look at his choir director or use what’s in his folder is irrelevant.  His body language says to his director that he is not involved in choir.  What’s worse is that the director will now have to worry about how many other kids will see that and decide that THEY don’t have to be engaged, either.  That puts the director in a very nerve-racking position of wondering how unruly this crew is going to get.  I’m not sure why, but this particular conversation hit home with my guy and he seemed to get this burst of good anxiousness to go to choir practice and speak his new body language to his director.

I’m sure some of you believe that kids in the spectrum should be in school.  I have some solid opinions about that.  I wrote about them in an article titled “Homeschooling, Socialization and The Autism Spectrum” on the Innovative Educator blog a few years ago and you’re welcome to read about it there.  My son is a good example of what goes right when you bring those kids home.

In the meantime, we continue to tackle eye contact, personal space, the use of deodorant, and the subtleties of kids making mistakes vs. kids doing things that render them NOT friends.  Sometimes because he is 10, and sometimes because he has Asperger’s.

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