Shining a Light onto Autism

Thought for the day: We need to embrace those who are different, and the bullies need to be the ones who get off the bus. [Caren Zucker]

[wikipedia]

April 2 is World Autism Awareness Day, and in the U.S., the entire month of April is National Autism Awareness month. Since I'll be taking my customary month-long break from blogging in April, now's my best opportunity to post about this important issue.

I think, as a whole, most of us are much more aware of autism today than we used to be, and many of us know someone personally who is somewhere on the autistic spectrum. Autistic people are... different. They view the world differently, and they are also different from each other. There's a wide range of behavior and perceptions within the spectrum, and above all, what autistic people crave is to be accepted just as they are. 

The following post is an update of one that first appeared on April 8, 2011, with the title Understanding Autism: A Long Way to Go. At the end of the post, you'll find information about a book I read recently. Why am I telling you about it now? All proceeds from book sales will be donated to autism research.

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Thought for the day: I've learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back.  Maya Angelou

Today's blog is going to be a little different. It's going to be about some people who are different, and I hope to help you gain a better understanding of them.

April is Autism Awareness Month, and with statistics showing that autism currently affects anywhere from one in 120 to one in 150 of the babies born in the US, you may already know one of these children ... or adults ... personally. In any case, in honor of autism awareness, I'd like to share a few things about this brain disorder with you, based solely on what I've learned from books and personal observations.

When I was growing up, I don't remember hearing anything about autism. In those days, children with special needs were lumped together in a special education classroom at school, or relegated to the mercies of a state facility.

In the late 60s, I briefly volunteered at one of those state facilities. Caroline, a co-worker and fellow do-gooder, and I were closed into a medium-sized room with 35-40 children. The only furniture in that room was a TV set, which sat on a shelf mounted high up on the wall beyond the reach of little fingers; and the only toys, rubber balls. Lots and lots of rubber balls. All colors, all sizes. And those balls were in constant motion. Rolling around the floor, bouncing off the walls, smacking into the children, smacking into us. Four or five children screamed non-stop. Two spun in circles until they fell to the floor. Then, they'd get up and spin some more. Two others curled on the floor at opposite sides of the room, either in drug-induced stupors, or near-catatonic states brought on by their conditions. Another child banged his head against the wall. Some children, who were incredibly strong, reached for us, and in their enthusiasm, pulled us to the floor.

 In retrospect, it's very likely that some of those children were autistic, but at that time, from what I saw, those children, as wards of the state, were simply being warehoused. All thrown together, regardless of diagnosis, if there even was a diagnosis. From what I learned later, the spinning behavior and general disconnect we observed at that institution are typical manifestations of autism. And all of those balls flying around the room must have been sheer hell for them.

Fast forward ...

During the eighties, I volunteered at our church's respite care program. This was a two-Saturdays-a-month venture, in which parents could get a much-needed respite by leaving their special needs children in our care for the day. Many of these children were autistic, enrolled in a special school, and receiving the best help available. Some of them also had severe physical challenges. But, all in all, they were amazing children, and they taught me a lot about the human spirit.

Autism strikes four times as many boys as girls, so that may explain why we had more boys than girls in our care. I'd like to tell you about one of these boys. His name was Steven.

Steven's body was painfully thin and twisted, and his spindly legs were strapped to a wheelchair. Leather straps buckled around his chest, pinning him in place, and a tray was clamped in front of him.

Unable to speak, he'd make loud guttural noises, shake his head back and forth, and flail his arms. We'd wipe the spittle from his chin, but tears would fill his eyes.

Then, he got an amazing electronic keyboard fitted to the tray of his wheelchair. Teachers showed him how to use it, and boyohboy, he was an amazingly fast learner. And know what? He became calmer. For the first time in his life, he could press a button, and a computer would say, "I'm thirsty!"  or, "I'm hungry!" or simply, "I'm mad!"

And to everyone's delight, we discovered that he had a terrific sense of humor.

Steven taught me, taught all of us, to always look for and remember the person inside. No wonder he was angry! He was trapped inside of a body that didn't work, but his spirit proved to be strong, once he was given a way to express himself.

I recently read a book called The Tell-Tale Brain, by V.S. Ramachandran, which he describes as "a neuroscientist's quest for what makes us human." He accomplishes that by exploring the workings of the human brain, and he also does an excellent job of explaining some of the differences in the autistic brain.

There are specialized neurons in the human brain called mirror-neurons. Say you're watching someone scratch his nose. These mirror-neurons will trigger activity within your brain that's identical to the activity that would be triggered if you were scratching your own nose. You don't actually move your hand to your nose, but at a basic level, you can relate. As you can imagine, these neurons are essential in the development of empathy, and in the formation of connections to the people around us. And there is a stark deficiency of these cells in the autistic brain.

So, without an innate sense of connection, these children, these people, find it very difficult to connect. Often can't look another person in the eyes. Don't want to be touched. Have a sense of isolation. It's been theorized that because of this sense of disconnect and isolation, some of these children inflict wounds upon themselves just to reassure themselves that they're alive. Sensory overload is a major issue. Too much light, too much noise, too much activity are all maddening to an autistic person. Strict routines and a reliably non-changing environment are important. The spectrum of autism is wide, and the degree of functionality and integration into society vary greatly. Great strides have been made in understanding and treating autism, but there is still a long long way to go.

And each of us can help. The more we try to understand, the more empathy we have, and the more acceptance we show for those who are different, the better this world of ours can be. In this, Autism Awareness Month, let us all be more aware of these struggling children, of their parents, often divorced and/or isolated themselves, who care for them, and who know that no matter how different their children may appear to the rest of society, they are also brilliant, creative human beings and a source of great joy.

Every person deserves the chance to reach for their highest hopes and fulfill their greatest potential. [Barack Obama, on World Autism Awareness Day, 2015]

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At right is a cover pic of the book I mentioned earlier in this post. Fifteen authors, who write in a wide range of genres, combined their talents to create this anthology in loving support of autism research. This is a book you can enjoy in bits and pieces, or as a forget-it-I'm-not-moving-until-I-finish-reading-the-whole-darned-book manner. (Closer to my particular style.)

In the U.S., you can purchase this book
here, and it is also available through Amazon in other countries, as well.




Until next time, take care of yourselves. And each other.