Friday, April 8, 2011

Understanding Autism: A Long Way to Go

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. My friend, 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.

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 splindly 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 gutteral 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 a 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 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 a 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.

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. There, but for the grace of God.

Sorry I didn't make you laugh today, but some things just aren't funny.

So I can work on my book tomorrow, I've decided to skip the blog tomorrow. But, fear not! No weirdest news story of the week for tomorrow, because I'm gonna sock it to you TODAY!

Until Monday, take care of yourselves. And each other.

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Weirdest news story of the week:  In December, a Swedish couple embarked on what was to have been an idyllic four-month honeymoon. Must be nice, you say? Not so fast. Wait until you hear about their adventure. Their first stop was Germany, where they got stranded in Munich. Why? Worst snowstorm ever. Then, they headed for Cairns, Australia, which was then promptly struck by one of the most ferocious cyclones in the country's history. They had to spend the next 24 hours sheltered in a cozy little love nest with 2500 other people. In a shopping center. Sleeping on a concrete floor. Next stop? South to Brisbane, but massive flooding there convinced them it was time to move on to Perth. Unfortunately, when they got to Perth, they were met by raging bush fires, and had to flee to Christchurch, New Zealand. Got there right after the place was hit by a 6.3 earthquake. From there, the hapless honeymooners headed for Japan. You guessed it. They arrived in time to experience the 9.0 tornado, tsunami, and nuclear disaster. Before going back to Sweden, they were able to enjoy a calm visit to China. Tell ya what, with that kind of beginning, this couple can make it through ANYTHING! (But I don't believe I'll be inviting them over for dinner ...)
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18 comments:

  1. Thanks for the autism awareness post. I have an autistic son who's 14. Yes, it's been a hard road, and it's still hard. But he is a delight to our family. The compassion, love, and humor we have learned from him far outweigh any difficulty we've encountered. And God has blessed him beyond anything we could have hoped. So our little two year who "might never learn to speak" is now 14 and playing the role of Puck this year in a Shakespeare troupe's production of A Mid-Summer Night's Dream. (Talk about irony...)

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  2. THANK YOU for this eye-opening post about autism. Have a happy, peaceful and productive weekend :)

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  3. Hi, Connie. I'm so glad your son is doing well. My best friend's 16-year-old grandson is also autistic, and like your son, the doctors made dire predictions for his development when he was a toddler. It hasn't been easy, but he has progressed far beyond expectations, and is a smart, funny, and loving young man. It's heartbreaking when strangers look at him and all they seem to see is that he's different. As you well know, he's so much more. He's a blessing. And wow! Your son is playing Puck! That is so awesome. A triumph for your whole family. I'm happy for you.

    Take care.

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    Hi, Sam. Thank you for coming by to read the post. I wasn't sure anyone would, but it was still something I wanted to write. Take care, and you have a wonderful weekend, too.

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  4. Hi1 Thanks for visiting my blog! Great to connect with another ATL-area blogger. This post is very moving. Your story about Steve made me think of Carly Fleischmann, the autistic girl from Toronto. Do you know her story? The footage of her on 20/20 makes me cry with hope every time I watch it. Here's her blog: http://carlysvoice.com/

    Have a wonderful weekend!

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  5. Hi, Nicole. Thanks for the URL for Carly's blog. What an amazing young lady she is! My friend's grandson is also a twin, and like Carly's sister, his sister is fine. Guess that situation isn't as unique as I thought.

    Take care.

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  6. Susan, you have been visiting my blog steadily since the a-z challenge started. Sorry I haven't returned the favor, but yours is the first blog from the challenge I've added to my blogroll. I really appreciate your thoughtful comments.
    Karen

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  7. Thank you, ma'am. I'm honored to have you aboard.

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  8. Hello, new friend! Thank you so much for that sensitive post on autism. I taught school for 28 years and I am sure some of the children were autistic but it was not defined as such. One of the earliest years I taught, one of the students named Tammy had an illness that had twisted her mouth and crippled her hand, (I think it was muscular dystrophy). She could not speak plainly, but you certainly were aware of her displeasure when she felt it, and she had an incredible sense of humor. You brought her to my mind with your post. Thank you for visiting my blog and I look forward to reading more of yours. In your profile you say you are from the deep south. I'm originally from east TN, was born and grew up there and lived most of my life there. You definitely seem to be a "kindred spirit" and like a lot of the same authors that I do. Thanks again. Ruby

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  9. Hi, Grammy. Thank you so much for stopping by! (How about a cup of tea and a cookie or two?)

    I love that you still remember Tammy's name. That says a lot about what kind of teacher you were.

    I started out in MD, but have lived in GA since '71. I LOVE the south and its people, so yes ma'am, I'd say that we are kindred spirits, and you can never have too many of them!

    Take care.

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  10. Great post. You don't have to make us laugh every day. Sometimes it's enough just to make us smile. :)

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  11. Wonderful post. Thanks for commenting on my blog. I'm a new follower. =)


    http://tigeronmybookshelf.blogspot.com/

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  12. Thanks, Linda. That takes the pressure off. (Smiles are good!) By the way, I like your new picture. Take care.


    And hello to you, Ms. Tigress. Thanks for signing on here. I reciprocated. Take care.

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  13. Great post highlighting Autism and Autism Awareness Month.

    Thank you for visiting my blog and leaving a comment.

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  14. Hi, Ann. Thanks so much for stopping by. I hope to visit your blog again soon.

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  15. Thank you for sharing this. The part that really struck me was the notion of being trapped inside a body that doesn't work. Heartbreaking.

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  16. Hi, Florida. You're right, it is heartbreaking, but it's also exhilarating when they can express themselves.

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  17. Autism is the fastest-growing serious developmental disability in the U.S. You can show support and raise awareness by wearing one of many autism awareness products .

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