Thursday, September 18, 2014

The Other Side of Autism

"Why is Uncle Andy doing that?" Ethan asked somewhat disdainfully. This was last month, when we were in Maine at our camp with my parents, and my brother was visiting for the weekend as well. At that moment he was out on the swing, making the kind of noises my mostly non-verbal brother makes when he is upset and not getting what he wants.

"He's feeling stressed," I told Ethan. "Uncle Andy likes things to go a certain way." Or in many certain ways. In Maine, like in all of Andy's life, he has a schedule. Not only are there routines to keep, but Andy is constantly thinking about the next one. Often they involve food. This time around, he was upset because we didn't drive to the ice cream place a few towns over. Things like this set him off. Not having pancakes when he asked for them. Not going out in the boat with my dad. Not taking a walk. Not having soda. The list goes on and on.

"But why isn't he talking?" Ethan asked. "Is it because he doesn't know any better?"

I looked at my son, and I didn't know what to say. Before I could think, my mom chimed in. "It's because he has autism, Ethan. His brain works differently. His kind of autism makes it difficult for him to talk or understand people, and he doesn't like when his plans get changed. It's hard for him."

I felt as if we were balancing on very thin ice. I waited for the question: What is autism? but it didn't come. Instead, he started mimicking some of Andy's noises in an almost mocking way.

"Stop that," I said sternly. "I know it's hard to understand, but Andy can't help it."

And with that, the subject changed, with so many things left unsaid.

I wondered. I wondered about that day when Ethan asks what is different about him. I wondered about him hearing the word "autism" and trying to reconcile that he has what his uncle has, but in a very different way. Would it frighten him or leave him feeling profoundly grateful? Would there be a way, someday, that he could help us understand my brother better, my brother who is so often so difficult to reach?

My brother enjoyed life in his own way over the weekend. He swam; he demanded chips. He had some of the elusive ice cream. He swung on the swing for hours. Loudly. He stressed because the baby was sleeping in the room he usually changed in. He tried to sneak food. Lots of food. He insisted on going for walks at certain times. He looked at all of us there and smiled: he does, undoubtedly, love his family.

Ethan stopped asking questions. He seemed to satisfy his own curiosity by just concluding, as he had that first day, that "Andy just doesn't know any better."

This is what I wish I could convey better than I have, then I will. That I sit here and write all kinds of cute stories about Ethan and his quirks, about his love of drawbridges and cul-de-sacs, of his fumbling over the English language or missing key social cues, and maybe it seems I see autism as just that: endearing and eccentric and sweet. Maybe I sound like one of those people who gush that they wouldn't have their child any other way, autism and all, and that autism is not such a bad thing, just a great teacher, that autism is their child's "superpower."

It's the kind of thing that really angers those caring for someone who resides on the other side of the autism spectrum, day in and day out.

I see Ethan and I see Andy. And I'm not sure how someday I could go the Pollyanna route of telling him "Autism makes you like a superhero!" "Autism is what makes you cool and special and different!" Those statements may very well indeed be (almost) true for someone like Ethan. But then there are the times when autism is debilitating, when it leaves the person in a body and mind they would rather not have, and leaves their family exhausted. Beyond stressed. Finding it difficult to cope.

I understand the impassioned battle between those who admit to hating what autism has done to their family member, and those who feel as if admitting to hating autism equates to hating the person, because it is so woven into who they intrinsically are. I understand because I see it, the two sides of the coin, the seesaw of the autism spectrum, when I look at my brother and my son.

There are no easy answers. Maybe the best and simplest one is (and really this is something that applies to life in general) is to not make blanket statements about autism, because never, ever are two autisms the same.

Ethan will see this someday. I pray that instead of teasing, he will look within and find compassion, and empathy, and maybe even a desire to help those who are wired somewhat similarly, but are much less able to express themselves and give others a peek into their fascinating, sometimes stifling, amazingly complex inner world.

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