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.


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.


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.

Milestones: It’s Not the Destination, It’s the Journey

Transitions have always been challenging.

Over the years, we’ve worked through bedtimes and birthdays, staff changes and new schools. Any change in routine, however minor, can cause a major disruption. You know the struggle.

The whole concept of Butter getting dressed up in a suit and tie, putting on a cap and gown, sitting through the entire 2 hours graduation ceremony in a stiflingly hot and full-to-capacity gymnasium… (including going up in front of people who are clapping, whistling, and using air horns!) was pretty mind-boggling to me. As much as we’d prepared, I couldn’t feel confident that he would get through it, and certainly not without a meltdown. He wanted to try, so we did.

My anxiety was high, rolling off me in sharp waves. My words came fast and high-pitched, as I tried to prepare him for The Big Night. We’d been living on very little sleep, since he had participated in a grueling week of rehearsals, a senior class photography session, Senior Banquet AND Class Night. His entire routine was off, including his sleep schedule. OUR sleep schedule. I was waiting for the other shoe to drop.

This was the big night. THE Big Night. Butter’s autism and severe communication disorder impact so many things in his life, and although I’m hopeful, I’m also a realist. It’s likely that he won’t attend college. Or get married. Or have children. This is the end of life as we’ve known it. I’d love to be wrong about this, but only time will tell. So this night, his high school graduation, is a Really Big Deal. I wanted it to be everything that those other milestones would be for him. For me.

As other parents watched their children march through to their seats, snapping photos, I sat with my jaw clenched and my heart pounding out of my chest. A room of over a thousand people. A brass band. It was claustrophobic. Would the noise reduction headphones be enough to drown out the air horns and prevent a sensory meltdown? We were past the point of no return now, running the gauntlet.

Butter marched, stood and sat down on cue, sometimes smiling, sometimes rocking in his seat gently. He walked across the stage and accepted his diploma, shaking hands and giving high fives, with the guidance of his teachers and the support of his peers. Few people in that room understood the magnitude of that diploma for Butter, but it didn’t matter. We had been through early intervention and more than a decade of therapies, meetings, pre-teaching and monitoring. That diploma was for all of us who had been there for the journey. We earned it.

The rest of the night was a blur of smiles and goodbyes. We tried to get pictures of Butter in his cap and gown with teachers and family, but he disappeared into the bathroom and stripped it off. There would be no proud family graduation picture on the mantel. Instead, we ate cake and celebrated our individual and cumulative achievements of the years.

And this is where I say that I was wrong. I was so wrong. This isn’t the end for him, only the end of his beginning.

The Day My Son Became A Twi-Guy

My son was 15 when the Twilight frenzy reached a peak in our little corner of rural Maine. I was content to let it pass by us, and because he’s non-verbal and immerses himself in train videos on YouTube, I assumed that he shared my apathy for vampires and pouty school girls.

That’s when it happened. That thing I didn’t see coming.

He needs support with using his electric razor, due to tremors and low tone in his hands and fingers, so I was assisting in shaving off the scruff of the weekend. As he guided my hand, he steered clear of the areas around his ears… and I reasoned that his ears were sensitive to the buzz of the razor. I suggested that he cover his ears while I trimmed that area, but he took the razor from me and softly said, “No.” It’s the only word he can say clearly, so when he used it I respectfully followed his wishes and left the fuzzy sideburns. It was strange, but life gets busy and I didn’t think much more about it.

The next day he came out of the bathroom after his shower, his dark, damp hair looking even more wild than usual. My attempt to comb it was met with another soft, “No.” When it was time to go outside for the bus, he quietly refused a hat, or to put his hood up. I was concerned. It’s Maine. It’s cold. Maybe he had an ear infection? I made a mental note to ask his ed techs and community support staff if they’d seen signs of an ear infection. If so, I’d schedule an appointment with his pediatrician.

Later that night we went out on an errand. The car was low on gas, so we pulled up to the pumps next to a car with a group of teenage boys in black leather trench coats. Immediately, my Butter began making his “happy” noises, smiling, and rocking back and forth. He was clearly excited, but why? “Do you know those boys? Do they go to your school?” I asked. As usual, my son’s severe autism and communication disorder prevented him from answering.

By the time I finished filling the gas tank, with the car rocking from Butter’s excited movements in the front seat, I had managed to sneak a few sideways looks at the boys. What was it about them? Something familiar… And it hit me. The sideburns. The longish, tousled hair. They looked like they’d just been at an audition for the latest Twilight movie.

Back in the car, I asked him a more direct question. “Do you want to look like those boys? Do you want sideburns, and to have your hair like that?” BIG HAPPY SOUNDS! Big, big, BIG! And flapping. I’d solved the mystery. Unfortunately, there was no PECS symbol for it.

We drove directly to Walmart, where I showed him the display rack of gossip magazines, each glossy cover with Robert Pattinson splashed across the front. “This?” I asked, still doubting what I was “hearing” from my sweet, introverted, train-loving boy. “SAHH!” he said loudly, signing “Yes” vigorously. “Sah” is his version of “Yessah!” He is a Mainer, after all.

Hair cut. Brush-on blond highlights. Hair gel. I never in my wildest dreams would have thought my son, the one with sensory integration challenges, would have tolerated any of it. But he did. EVERY day. And he was happy with his new, in-style Edward Cullen look.

Eventually, Twilight dwindled away and one day my Butter took my hand and guided the electric razor to cut those sideburns. The blond highlights are gone, but the lesson stayed with me.

My son has hopes, dreams, and fantasies that I have never even considered. I don’t know everything about him, and I never will. He will always be autistic, but first he is a PERSON.