Note to reader: Although it may not seem to be the case at first, this paper is somewhat technical. It is meant to give people an understanding of a very complex syndrome, but it also means to entertain. Combining these two types of journalism is a writer’s challenge. When you get to the body of the article, the heart of the information on autism, hang in there. You’ll learn something perhaps about a subject you might not have understood before, and all along the way you’ll also realize something about Clay Aiken.-------------------------------------------------------------------------------------
On Autism and AikenBy Dianne Austin
The girl slammed the book shut and buried her head in her arms on the table before her. A few people looked over questioningly, but she didn’t care. She usually didn’t care what people thought. She swiped her books off the table, and after replacing the two reference texts on the library shelves; she marched out of the gloom and into the sunshine.
Just being outside helped a bit. But the frustration and confusion still lingered even as she took huge strides with the sun in her long blonde hair and the breeze billowing out the gauze of her ballerina-length skirt. People watched her as she moved with purpose and determination to her favorite spot on the campus; the one that ended with a small bluff that looked out over a grassy, tree-spotted field below. There was snow on the mountains in the distance. She stepped up onto the largest rock of the bluff and let the not-quite-spring breeze hit her in the face. Her cheeks took on a pink, rosy glow and her normally blue eyes began to tinge green when she held her face to the sun.
She needed to clear her head. What was all that about anyway? Aren’t people supposed to become enlightened when they research a subject? You just gather the facts, take notes, record the statistics, and read the expert’s opinions. You then review your notes, make sense of the facts, sort, organize and come up with your thesis statement. That’s the difficult part. After that, it’s a piece of cake, because you just write. That is, it always was a piece of cake, until now. She’d been doing the research for three days, and she was still confused by the subject. She was a Social Work major, the class was Social Psychology, and the subject she had chosen was autism.
***
The girl on the bluff with the frustration in her heart and the questions in her mind was me. I won’t tell you how long ago it was, but suffice it to say it was close to the birth date of a fellow by the name of Clay Aiken, who she would one day love and admire because he struck her soul with his voice and then reintroduced her to a subject that muddled her brain one spring day in the library.
And now the girl is a woman, with a past that’s included counseling adolescent girls from the barrio, teaching elementary school GATE classes, interviewing technical applicants for a silicon chip company and tutoring a ten-year-old boy with dyslexia. And maybe it’s her age, maybe its her wisdom, or maybe its because she listens to and connects with a guy named Clay Aiken, but now she understands what autism is.
I had to do some research, all over again. But this time, I get it. And by talking about my experience here, I hope you get it too, and want to know more. My first paper did not receive an A.
Let’s see what this one gets.
***
First stop, the Bubel/Aiken Foundation. I’ve looked at their video and listened to the mission statement at least ten times before this, but let’s listen again. Go to
www.bubelaikenfoundation.com. Clay stresses what he wants to accomplish; inclusion for people with developmental disabilities. This is a hugely ambitious goal, but that doesn’t even in the least bit faze Mr. Aiken; huge goals probably never have. In this introductory video, he does not zero in specifically on autism, which is what this paper is about. But that’s because his foundation addresses all developmental disabilities, not just autism. Keep watching. Diane Bubel appears with her son Mike, and although she also doesn’t speak specifically about it, you can get some idea of what to expect, because Mike is right there with her, and he is a child with autism. This is a good place to start, because it gives us a feel for the world we‘re about to enter . . .
While you are at the foundation website look at the links, which are at the top. Go to “Partners”, and then go to “Autism Society of America“. Here is where we can get a good definition of autism. The basic definition is not so tough. What comes later can be a little hard to comprehend. Basically, autism is a developmental disease that usually manifests (makes itself known, or shows up) during the first three years of life. When the pros say “developmental”, a little bit of a gray area arises. With other types of these conditions, this usually means it is something that happens when the fetus is developing in the womb. So you could say it may happen, for whatever reason, at birth. But there is some research that says autism could “develop” during those first few years of life, due to some cells in the brain that migrate after birth. They really, still don’t know.
To continue with the basic definition, we are told that the condition is a neurological one, that is, it affects different areas or functions of the brain. Mostly, autism affects the person’s speech or communication skills and their social interactions. I will illustrate this idea for you, for I have had some experience with children that have autism. The way I can best describe these kids is that they seem locked up in their own world. They seem like they are not in the same place, or the same here and now that we are. And, we are reminded; there are different levels of autism. There are some people who can speak and let you know what they need, what they want, and there are others that have practically no speech at all. I spent some time with a girl that could not talk, and yet she definitely was trying to communicate with me with her eyes, with her gestures, with her body and her smile.
Some other characteristics that are sometimes seen include self-destructive behavior, random laughing, crying, or a show of emotion for no apparent reason, compulsive behaviors such as rocking or tapping of hand or foot, tantrums and wanting to be alone. Obviously, all of these are behaviors that are not easily controlled; especially when the child is coming from a different point of reference, sometimes almost, a different kind of reality, than the caretaker.
One characteristic of this condition that has always fascinated if not disturbed me is the fact that many people with a high level of severity, experience something that I would describe as sensory overload. From what I can glean, the every-day stimuli to which you and I respond can pose intense, sometimes threatening sensations to a child with autism, because their senses process that particular sensation differently, or more exquisitely than we do. So, for example, the sound of a bell clanging, the feel of a fuzzy blanket, and the sight of some vivid colors; any of these may produce a negative, uncomfortable or threatening feeling in the child. These kinds of common stimuli that we take for granted every day, could for the child with autism, be enough to cause them to act out, to have a tantrum, to be afraid.
So what causes it you may ask? If we find the cause, then we can possibly prevent it from occurring, right? Not so easy. The “Autism Coalition”, another organization that Clay has been involved with, tells us that since the problem stems from a malfunction of the brain, the cause could be tracked to a number of different things; heredity, the pre-natal health condition of the mother, other physiological deficiencies in the child, and possibly, infant vaccines. Research on this is no more conclusive than it was when I studied it back in college! All of the causal effects are still just theoretical. The scientists don’t have definitive answers. With Down syndrome, we can test for the chromosome prior to the birth of the baby. There is also a pre-natal test for Spina Bifida. As of this date, there is no medical test to determine autism; either before birth, or after the baby is born. But there are other kinds of diagnostic tests that are administered to determine this condition during the early years of childhood.
For more information on these kinds of tests, and for a list of symptoms or characteristics that can be signals for autism, you can go on-line to either of the sources mentioned above; the autism Society of America at
www.autism-society.org or the autism Coalition at
www.autismcoalition.org.
***
It was a day like any other. It happened about six months ago. I had gotten up with my children, saw them off to school, went to dance class, and decided to stop, have a quick lunch at my favorite, fast fresh salsa place and get lost in the novel I was reading, just for a little while. The fiction was good, the love story intriguing, but something broke my concentration and riveted my eyes away from the words there and brought me back to the outdoor patio where I was seated.
Something happened to me then that I would forever remember. Something that came to me because of Clay Aiken. And this is a portion of the e-mail I sent to him at the foundation that night. It detailed what I experienced and what I felt.
While I was eating lunch, a group of children came out to sit down at some tables near the one I was at out on the patio. I noticed they were being sort of ushered over by about three or four women who seemed nurturing, but assertive.
My eyes fell on the children and I saw that they were special needs kids, however, most of the time I see groups of this sort in our community, they are physically handicapped kids in wheelchairs, etc., and none of these had this type of affliction. These kids looked normal, but something was going on. I observed quietly from my corner, but did not want to stare (just not a great thing -to stare at anyone). As I watched them, I felt like my heart would burst apart. These children touched me in such a special way. Most of them were pretty well behaved, but seemed to be in another world, a world of their own. One little girl, whose speech was not quite discernible, particularly got me, because she would just continuously get up from her chair like she wanted to do something or go somewhere, but didn’t know what or where. She was chastised for this, and I just wanted to take her to the nearest park and let her run around. Another little girl, about 7 or 8 was in a stroller. She spontaneously started to cry with arms flailing dramatically, and then just stopped about a minute into it.
As I watched the behaviors of these little souls, I felt like you were standing behind me, lighting the entire scene. I thought of you the whole time and felt compelled to get involved somehow. I finished my lunch and went up to the woman closest to me to ask about the children. She said that most of them were children with autism. I asked if they were part of a school group, and she said yes. It turned out to be the special day program at a nearby elementary school. Then I asked if she knew about your foundation. She said she didn’t, but when I asked if she knew who you were, she said she did. I then told her about Bubel/Aiken, and she was excited and happy to hear of its existence. While we talked, I was aware of the little girl that wanted to move so much. She stood at my elbow and tried to get my attention, so I reached over and put my arm around her and patted her on the back while I spoke. She so wanted to communicate, her face was lit up, and I turned to her once in awhile and smiled and spoke to her as she smiled back at me. Then I said goodbye.
That was it. A few moments in time that proved to be a life-changing experience. And if it hadn’t been for you and your inspiration, it would never have happened for me. I might have seen them, but I wouldn’t have interacted.
***
Continued in next post.