Wednesday, August 14, 2013

Michael? What is it like to be autistic?

Yesterday I asked Michael, "What is it like to be autistic?"  When I think back about my idiotic question, I wonder why in the world I even asked him that?  How would he know what it was like NOT to be autistic.  He really doesn't have anything to compare it to, because he has been autistic all of his life.  Still I wanted to know if he had any feelings about it.  I wanted to hear HIS definition.  This is the response I received.
"I don't like being autistic, I don't want to be autistic," he says as he snuggles up beside me on the couch.
"Why don't you like being autistic Michael?"  I say.
"I don't like to be interrupted, I want to do what I want to do.  I don't want to answer questions, I just want to keep building blocks or watching my TV show." 
"Ahh," I say, "You don't want to be bothered when you are concentrating on something you like."

"Yes, I want to do my own thing," he states. 
"Is there anything else that you don't like about being autistic?" I ask.
"I don't like being picked last.  I don't like it when I am not picked to be the AIM camper of the day.  I think I am doing something all wrong.  Why won't they pick me as the AIM camper of the day mommy?"
That just about broke my heart into pieces.  The AIM camper of the day is when they pick the best behaved and helpful child at camp for the day.  The twins have gone to camp for approximately 4 weeks.  Mikayla was picked one day.  Michael has not been picked yet.  It reminded me of when I was a child.  I was always the last one picked on any team in gym class.  My heart went out to him, because I understood that part of being the last one picked.

"I don't know why honey, but you still have 3 more days to be picked as the AIM camper of the day," I feebly reply, ready to slap my forehead for giving him that hope.  Sure he can be helpful, but I'm not sure about the best behaved child of the day.   I quickly alter the subject.

"Michael what do you like about being autistic?" I say, looking at him expectantly.
"I don't like being autistic, I don't want to be autistic," he says emphatically.
"Don't  you like being super smart in math?  Don't you like being great with puzzles and figuring out games?  Don't you like using that creative brain of yours?"

"Yes, I am super smart in math aren't I mommy?  I like building my blocks, but I still don't like being distracted by other people." he says.

"Do you know that I love you, and even though you have autism, I wouldn't want you any other way buddy.  I love you for you, and I think you are a great kid."

I have worked with Deaf students for many years, and the whole cochlear implant issue came to the forefront of my mind.  When the cochlear implant was invented it could "cure" Deaf people.  Many Deaf individuals didn't want to be "cured".  They were Deaf and they were proud of that fact.  So many times I hear people asking for a "cure" for autism.  My husband, Chris, is very proud of being autistic.  He doesn't want anybody changing how his brain is functioning.  His ability to figure out problems is far superior than mine. If you ask our family, "Do you want to cure autism?" we'd have to say, "No, not really." We want to manage Michael's behaviors, but if we "cured" his autism, he wouldn't be the person he is. 

For children with Aspergers or High Functioning Autism, I don't think we really want to cure them, just manage certain behaviors.  For the children at a different end of the spectrum, it might be a different story.  We want them to be able to communicate and express everything that is going on in their brains.  Finding a cure for those kids and families would be a relief I would guess.

Still it is interesting what Michael says about his autism and how he feels about it.  What do other autistic people feel about being "Somewhere Over the Spectrum?"

1 comment:

  1. I always equate Michael's autism to my bad eyes and to friends with diabetes or other "controllable" health issues. So when we talk about autism, I always refer to it as a part of him, very matter of fact, just like an old friend who had diabetes. That friend couldn't change his diabetes, and Mike can't change his autism. It's just a part of him. But we talk about ways to manage parts of it, like getting distracted. I try to get him to repeat to himself what he's supposed to be doing (ie "I'm getting my socks" over and over as he does it). It's... so so as a coping technique. :)

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