Explaining Autism, A Dialogue

Ready or not, today was the day.

For almost seven years, I’ve pondered and prepared and waited for the subject to come up.

AUTISM.

She didn’t know it has been a part of her life from the day she was born. Even before that, since autism was the major consideration in planning whether or not we would conceive her. We had reviewed statistics and debated. What if…?

Ultimately, we decided that we could handle whatever life handed us. And here she is, asking The Questions.

The fact that it took her nearly seven years to ask about AUTISM tells me that although this has been a natural part of her life, now she is becoming more aware. Aware of the sign language and PECS symbols. Of the in home support staff. Of tagging along to the endless doctor’s visits. Understanding from before she could crawl that she must never touch The Medicine. She now sees how our family is different from other families.

I must say, the build-up to this moment was significantly more grand in my mind’s eye than how the interaction, all two minutes of it, actually played out.

Miss Bee: Mom, why does my brother need you to help him so much? And why does he take medicine?

Me: His brain is different from other brains, and sometimes it doesn’t work exactly the way he needs it to work. The medicine helps with that, but it doesn’t completely fix it. The way his brain works is called AUTISM. He’s not the only one. Lots of people have AUTISM.

Miss Bee: (without skipping a beat) It’s too bad we can’t go on The Magic Schoolbus and go inside his brain and make it work. Then he could talk. And he wouldn’t have to take medicine.

Me: Maybe sometimes he wants his brain to work like everyone else’s brain, but the AUTISM also makes him special in a lot of ways. Like how he is really good at computers. And how he makes such amazing art.

Miss Bee: Yes. Maybe we could call The Justice League to have Batman go inside his head and give him a Brain Zap. He could zap it and my brother could talk and not take medicine, but he wouldn’t zap the computer parts. Or the art parts.

Me: Hmmm… (debating a philosophical discussion with a six year old…)

Miss Bee: Can I have some chicken nuggets?

Okayyyyyy then.

That’s enough ‪#‎AutismAwareness‬ for one afternoon.

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Making Progress

Forty years ago we did not see people with autism in the community, because most of them were locked behind walls of institutions from an early age. Today, they are living in our communities, which are also their communities, and teaching us all exactly what they have to share with the world. That’s progress.

I am a believer in awareness that leads to education and acceptance. When my son was younger, I harbored some negativity about the public jumping on board for one day/month every year and then disappearing the rest of the year. I thought it was a way of making themselves feel good. Now I see that there is nothing wrong with that. If acceptance starts with one day of them feeling better about themselves, so they want to continue to raise awareness, then so be it. That’s progress.

My son is now 20, still non-verbal and severely autistic. If the world can look at him when he’s jumping and flapping in a grocery store line and realize that he has autism, and that through his flapping he may be expressing that he is happy or overstimulated, then he may be able to navigate his community and forge relationships more easily. That’s progress.

It’s not a perfect world. People with autism and other disabilities continue to be excluded, bullied, and sidelined. Wearing blue and displaying blue lights won’t solve everything, but it is the beginning of our world moving toward acceptance. My wish for my son, and for those who are on this journey with us all over the world, is that we continue along this path. In the past half-century, we’ve gone from locking people with disabilities away because we believed they had nothing to offer, to celebrating that they exist. That’s progress, my friends. Progress.