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The autism is hard.

The autism is hard.

His words. Not mine.

There, laying at the foot of the stairs, his head on his arm, his legs squirming as if trying to pull free from his body he again moaned, “The autism. The autism is hard. Why am I so much afraid all of the time?”

I have always been careful about what I say about autism when Casey is around. I knew he’d internalize they way we spoke of it, and I never wanted him to feel like his autism made him any less than his siblings or friends.  I wanted him to be proud of what it gives him, but, somewhere along the lines, I stopped the dialog with him about the hard parts. I stopped letting him feel how he needed to feel. I kept willing rose colored glasses on my beautiful boy who sometimes needs to see in black and white. And he needed me to see his world there with him.

I knelt beside him and watched as silent tears crawled down his face. “I know it’s hard. I’m so sorry, Casey. I’m so sorry it’s hard today.”  I scooped  him up the best I could and brought him over to the couch. He was not content to sit by me, but rather, crawl onto my lap.

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It’s been a rough time for Casey. We can’t quite put our finger on why. The weather change? Hormones? Me? Is it me? I’m so worried that he’s picking up on my own moods, my own stress, my own sadness. Waves of guilt rush through me and seep into my tired bones. Even when I try my best, I can’t help but blame myself.  Casey doesn’t blame me though, not yet. I look at some of the adults with autism I know that hate their parents. That hate all parents. Will he become like them? Will he hate me one day for messing up time and time again even though I was desperately trying to  help him?

We decided to try to adjust the world to Casey. To find safe places for him to just be him. We started out simply- a “sensory-friendly movie” at our local theater. They turn down the sound and keep the house lights on. When we got there, I delighted in having Casey in a place where people weren’t going to look at him funny for his autistic behaviors. An environment set up for him to be himself, and to enjoy something ‘normal’ like going to a movie.  He was VERY excited. Check out his rocking:

And I sat back and enjoyed it, too. He could rock the hell away and it didn’t matter. The people who surrounded us were there for the same reason. We had won this round with autism, I felt. We had set ourselves up for a win.

Autism is an elusive beast. Just when I think I have a hold of Casey’s autism, I’m grasping at air as it has once again changed shape. It can be large and loud and terrifying. It can be repetitive and obsessive and completely, soul-draining obnoxious. It can be beautiful and responsive and a borderline super-power.  It can be crushingly sad. The danger lies in never knowing which form it’s going to show up in, how long it’s going to take hold, and how tightly it will affix itself around Casey.

I was prepared for autism at that sensory-friendly movie. We had all of the provisions. And then, again, autism showed us it could outmaneuver us, even as seasoned experts.  Fear made it impossible for Casey to stay in the theater. Not knowing what was going to happen next. Sadness blanketed us both as we sat under that exit sign, defeated by this strange beast we have worked so hard to try to love.

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To discount the realities of any disability is to rob it of its beautiful complexity; it lessens the triumphs and it denies all involved of the authenticity found in expressing every emotion.  It’s the lesson I’m terrible at learning- to let Casey lead. If he wants to be pissed at the shitty hand he’s been dealt, well, I’ll be pissed with him. If he wants to rock with joy, I’ll rock with him. If he wants to cry, I’ll share in those tears.

Because the autism is hard.

4 thoughts on “The autism is hard.

  1. This. Everything you write is incredibly real. It’s a punch in the gut and a hug around the neck…sometimes at the exact same time. Your words capture what little can be captured about autism – because, as you said, it is an elusive beast. Thank you for sharing.

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  2. I am sorry autism makes things hard sometimes. To me one good thing about it (that I didn’t really learn until I grew up) was that it made me tough. Because since EVERYTHING was scary, and I had to learn to make myself do them anyways (like ordering my own food in a restaurant, or getting a job) I also made myself do other things (like traveling across the country by myself on the train and on Greyhound, volunteering at a summer camp for kids in foster care, going to a camping festival) and it turned out some of those things are scary for EVERYONE… but since I was used to dealing with being scared and doing things anyway, I got to do some really fun things. But most of that was after I grew up. Maybe if you go back to the movie theater another time Casey will be less scared. Or maybe he can just stand outside the door and peek in!

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