Thursday, October 9, 2014

Beyond Acceptance

Autism acceptance is one of those catch phrases that takes on a meaning of its own, but if you ignore anything that has been added in meaning to the phrase, of course I am in favor of autism acceptance.  The opposite of acceptance is rejection, and I can't reject autism without in essence rejecting people with autism, because autism doesn't exist outside of the people WITH autism.  So yes, I certainly believe in autism acceptance.

It gets a little more complicated than that, of course.  As it often seems to come back to lately, there's a big gap here between low and high functioning autism.  Janey isn't going to much affected by job discrimination---I very much doubt she'll ever hold a job.  She isn't going to ever most likely be out in public without someone taking care of her.  She hasn't yet learned to use a communication device consistently or talk with much meaning, so despite how much we do listen to what she says, often she can't speak for herself.  I accept all these things about Janey, but I do want to work on making her life easier by changing or adjusting some of them.  How does that work into it?  Am I not being accepting of her when I try to get her to say what is bothering her instead of crying?  Is trying hard to toilet train her not accepting her?  When I insist she keep herself clothed, is that unaccepting?

And what about going beyond acceptance?  What if I sometimes DELIGHT in Janey's autism, not just accept it?  Strangely, it feels almost wrong to think of delighting in something Janey does because of her autism.  And that is odd, because is it okay to ACCEPT her but not to delight in her?

Here's a few examples from last night.  Tony got home from work and Janey was thrilled to see him, as she almost always is.  She was so thrilled she wanted to hang off him for half an hour, hugging him, asking him to pick her up, wanting to hold hands with him and so on.  She was being very sweet, and Tony and I noted to each other that most 10 year olds are beyond being that excited to see their parents, and how sometimes it's a great contrast to how the boys react to us coming home.  Later, Tony needed to drive me to an event at Freddy's school.  We told Janey she was going to go for a ride in the car, and from the look on her face, you would have thought we'd said we were giving her the world's greatest treat.  She didn't ask, as the boys would have, if we were going to get something to eat, if she was going to get to get out of the car, when we would be back, why she had to go---none of that.  She was just excited to be going for a ride with Mama and Daddy.  On the way home, Tony told me she kept saying "Mississippi!" as if she'd just heard the word for the first time, laughing her head off at how it sounded every time.

Thinking about Janey last night, we realized we felt delight in how she was acting, delight in things she did that all had a connection to her autism.  Typical 10 year olds would not probably do those things.  They were more two year old type behaviors.  But we loved them.  Janey's good moods are a treasure, especially coming off a few tough weeks.  And her behavior was made more delightful BY the autism, not DESPITE it.

My point here is that acceptance is a pretty lukewarm word.  I certainly accept Janey, but my relationship with her autism is more complicated than that.  Sometimes, I feel autism despair.  Sometimes, I feel autism delight.  Sometimes, I want to change the parts of autism that make life hard for Janey, but some parts I would be very sad to see go---some parts of her that relate to her autism are wonderful.  Catch phrases don't really cut it when describing how I feel about autism.

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