My Autism Insights

“I wish it wasn’t raining so we could take the kids outside.”

“Well…it is raining.”

How often does wishing for things that simply are not part of reality make us feel worse about our situation?  How often are we not being truthful about what our reality is?  For example, my husband’s statement about being able to take the kids out just made him feel worse about the fact that we were stuck indoors today; wishing that it wasn’t raining, sleeting in fact, wasn’t going to change the fact that it was too nasty to go out, so why bemoan it?  And he wasn’t being completely truthful: He wanted it to stop raining because he was bored, and he wanted to go outside.

What does this have to do with autism?  It occurs to me that at one time I argued with reality.  I worried and angsted and wished for some way to ‘fix’ Gus’s issues, and what was worse, I had these thoughts (or so I told myself) because I wanted him to have a better life.  Except he wasn’t the one complaining.  I think at that time, I wanted me to have an easier life.  I wanted the fulfillment of my own expectations.  I’ve since come to a place of more (not perfect, but working on it) acceptance.

A few years ago, I read a book called Loving What Is by Byron Katie, and her words about accepting reality have stuck with me since.  I haven’t done ‘The Work,’ and I’m no expert on her methods, but I’ve gotten at least far enough that I can deal with Gus’s disabilities without anger or resentment or any of the myriad negative feelings that are often expressed by some people about life with a child on the autism spectrum.  And I’m not judging those people who do feel that way - I’m not living their reality; I can only work with mine.

What’s interesting is that there are two realities that parents of children with autism (and other disabilities, truth be told) have to face.  There’s the reality that this is your child and you have to love and accept him/her for who they are.  But there’s also the reality that your child will eventually grow up and have to function in a society that is not (currently) so unconditionally accepting.  So by necessity, we either have to teach our children to navigate the world, or we have to change the world, or we have to somehow do both.

Until those things happen, I will keep entertaining and teaching and redirecting and doing my damnedest to be patient when things don’t go exactly according to my plan.  The reality is that my plans are pretty insignificant in the grand scheme of things.  I can either go with the flow or fight the tide.  But if I get all wrapped up in the fighting, when the sun finally does come out, I’ll miss it and the chance to go out and play.

Vitus Bering - the real discoverer of Alaska

A day off from school can be a very enlightening thing.  Gus was home yesterday, and although I always do homework with him after school, it was a different experience doing it earlier in the day.  He absolutely did not want to do the work when I wanted him to and there was a good deal of acting out: rolling on the floor, loud talking, purposely filling in incorrect answers…I was frustrated, he was annoyed - actually this sounds like a typical day, except for what happened next.

Gus was (has been for several days) fixating on geography: who discovered ____; what’s the capital of ___, that sort of thing.  So, instead of doing his reading assignment or his math problems, he was going on about that.  Finally, as he was rolling around on the floor asking about who discovered Alaska, I said, “Well, I think Admiral Perry started out with 3 ships and then 5 more ships followed along.  How many ships got to Alaska?”  Booyah!  Instant transformation!  We got through a sheet of 3 digit addition, 3 digit subtraction, the stupid reading assignment about how to meet a dog (he hates dogs) and then he asked for, DEMANDED, a third math sheet.  He did not want to stop working.  Amazing how such a small shift completely commanded his attention.  Each problem became a made up story about some exploration to some country.  By the way, I stink at geography and I was spouting more crap than a newborn, but he didn’t care - I was working with him on his terms and he loved it!

So this begs the question, “Why can’t his teachers do the same thing?”  First of all, why is what they want to teach more important, more significant than what he wants to learn?  Does he really need to know the proper way to greet a dog?  It’s totally irrelevant to him - he’d be running in the opposite direction.  However, Admiral Perry having to fight off a team of sled dogs because he approached them the wrong way is pretty darned entertaining.

I looked back at some of his assignments, and aside from their irrelevance to his life except for the fact that they were readings about animals and he likes animals (I like chocolate chip cookies, but too many and I will still get sick to my stomach), there was no context.  For example: there was a booklet of geometry questions.  Across the top, he had written, “NOOOOOOOOOOOO!!!”  That was a hint right there that he wasn’t interested in the assignment.  But I wonder, if the teacher had sat him down and said, “Pikachu is battling Paul’s Electabuzz and the only way to make his volt tackle work is if he can bounce off a tree at a right angle.  Find the right angles.”  I bet he would have found them all in a matter of seconds.

I’ve been told on a regular basis that my son can’t or won’t focus.  He’s not the problem here, I’m starting to think.  He can focus just fine - on the things that interest him.  Is it his job to shift his interest to what the educational system thinks is relevant and important, or is it their job to present the information to him in a way that will engage him?  I won’t even dignify that with an answer.

The point is that we have to stop laying blame against people who are just being who they are, and as caregivers (parents, teachers, administrators, therapists, physicians) we need to get over ourselves.  What we think is significant ain’t necessarily so.  If we are going to have any hope of helping individuals on the autism spectrum, or with ADHD, or any kids for that matter, we need to start allowing for some creativity and flexibility in thinking.  We’ve got to think out of the box a little and stop being so draconian - let’s at least meet them halfway.  Can it really be that hard?  I somehow don’t think it is.

P.S. Rear admiral Robert PEARY discovered the North Pole(this is disputed); Vitus Bering discovered Alaska; Henry Hudson did discover Manhattan, but Peter Stuyvesant did not discover New Jersey.  Pikachu did in fact kick Electabuzz’s butt.  Fat lot of good that traditional education did me.  I’m sure Gus will figure out the truth about all these guys, I doubt I’ve done irreparable harm.