I accept autism, and I have expectations

I’ve been thinking about what acceptance really means to me.

I have posted about acceptance before:
Giving up on greener grass
On acceptance
A letter to NT parents

I accept that my daughter has an autism spectrum disorder.  She will be impacted by autism her entire life.

What does it really mean to me to accept my daughter’s autism?
It means that I love her unconditionally.
It means that I don’t believe she will be cured or recovered.    (Not to be confused with progress.  I do believe she will progress)

Just because I accept autism, does not mean that I have given up on having expectations for my daughter.

As part of a parent training I took with a local support organization we heard a panel of speakers talk about various aspects of disability and discrimination.  Joana Fraguli said to us that every single one of our children, regardless of disability could go to college.

At first I kind of laughed to myself.  It is hard to think about college when a trip to the library is still unpredictable.   But then I realized that Joanna is correct.   College is not a topic I’m going to dwell on right now, but having autism doesn’t rule that out.

R. has a significant language delay that is part of her autism.   I accept that communication is a challenge for her.  Of course I hope that she will communicate more and more as she gets older.   I expect her to communicate at the best of her abilities (which are changing).  I expect that I and anyone working with her will prompt her to do so.

R. has some sensory seeking behaviors that are part of her autism.  I accept that she needs the input from whatever activity she is seeking.   But I expect her to choose activities that are safe and reasonably appropriate.    If she does not, I will redirect her.  When I catch her chewing on her sleeves or a paper towel roll, I’ll provide her with something to chew – food or a chewy tube.   When she wants to jump on the couch which is dangerously close to the window I’ll redirect her to her trampoline or even a bed.

What about acceptance in the community?

Again, I think it comes down to expectations.   At first glance, R. does not have an obvious disability.  The general public expects her to act like all the other four year olds.

I accept her challenges, and I provide her with the supports she needs to go out in public – taking her security items, sitting in the stroller if she wants.   When she puts her fingers in her ears I just ignore it (as long as she is happy) I don’t draw attention to it.

I expect the general public to leave her the heck alone when it comes to these things.  As long as she is not harming anyone, we have every right to go to public places, even if we look a little odd.   I expect that when people in the general population have more experiences with people who present differently that they will come to some degree of acceptance.

There was a lady in the elevator at Safeway and she was totally distraught that R. had her fingers in her ears.  This lady acted like R. had sprouted antlers.  Maybe the next time that lady sees a child with fingers in their ears she will not be so shocked.

I expect R. to behave when we go out.  That means I expect she will not cry and scream, throw things or deliberately misbehave.   If we go to a restaurant (so rare) or a party or something and R. is unhappy, we will leave.    But we will try again.

I think that the general public does not really understand autism, and it is only through personal experience that people can come to some level of acceptance of people with disabilities or even people who are different.

R.’s teacher told me about a few general ed elementary girls who walked by the class and asked if there were students with autism.  The teacher said yes and the girls said aww that is so sad.   The teacher actually got angry and said, it is not sad, these kids are not sad or unhappy.  Look at them, they are all having fun!

Personally I think it is kind of sad that these girls are so unaware of other students at their school.   But that is probably a whole different topic.

We went to the playground and there was a boy probably 8 or older there with his Mom and baby brother.  He seemed very bored, talking to all of us looking for attention.  He was playing with a remote control vehicle, and it got R.’s attention.  She said wow and gave him the sense she was interested so he started performing for her.   She followed him around for a while, and when she stopped he actually came back to her with the vehicle trying to get her attention.

He did not even acknowledge her lack of language. He was not phased when she ignored his attempt to hand her the controls.  What an incredibly accepting kid!  How did he get that way?  Of course I could not ask his mother.    But meeting that boy gives me great hope.

I accept autism, and I genuinely hope that the rest of the world will come to do so also.  But I think that the general public has to learn to expect autism, before they will be able to accept it.