Dianne Austin: On Autism and Aiken

[Pamela]

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.
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On Autism and Aiken
By 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.

[Pamela]

Continued from first post.

An area that has emerged from all of this that is of great interest to me is that of treatment.  And yes, you guessed it, I want to know more about this area because a gentleman by the name of Clay Aiken was, and is, involved with it.  There are many specialists in a myriad of professions out there that can help the child with autism, and it is my belief, that because it is such a complex, multi-faceted condition, their best interest is to utilize at least some of these treatment options in combination, instead of using just one.  One factor that is unanimously agreed upon is the understanding that there is a better prognosis for the child if the diagnosis is made early, and treatment begins right away.  This, we know is true.  But the way in which the family decides to provide treatment to the child is still up to them, and can differ, from case to case.

Clay was a Special Education teacher. This approach to the treatment of a child with autism would fall under the category of  “Developmental” approaches.  When detailing these types of techniques in order to improve the quality of life for the child, the research speaks of the “teacher” and the “classroom” and stresses the idea that the child receives instruction in a structured framework, working on learning certain skills every day in a particular part of the classroom.  This theory relies on the belief that the child benefits from the daily familiarity of doing the same learned skill or behavior at the same time each day in the same area of a known environment.  You can imagine that the skilled professional, the teacher, would have to maintain a saintly patience, have a sense of humor, be positive and “up” and always go with the flow.  I remember Clay commenting in interviews that he has, in the past, had to deal with large displays of reactive behavior; something to the tune of having been “peed on”, in some instances.   Teachers see it all.  Imagine, I thought it was rough when I was teaching a 3rd/4th grade combination class of Gifted and Talented kids!

Another approach category that exists is “Behaviorist”.  Within this category, the professional providing the treatment is often referred to as a “therapist”.  This might be the psychology professional or the Social Worker, the profession I was involved with.  The behavioral approach comes from the theory that the child will learn appropriate or new behaviors when those behaviors are “rewarded. The child is rewarded, perhaps with a bit of chocolate, a sip of juice, or a smile or a hug, when the desirable skill or behavior is exhibited.  It is an established approach in general psychology and is used in many other areas, with other human conditions, as well.  This approach has been known to have effectiveness in the area of autism, although other professionals with other approaches often use it as a tool.  For example, I’m sure that Clay has used behaviorist techniques in his treatment or teaching of children with autism.  As far as I’m concerned, it does work, but not when isolated, or used as the sole approach.

The third and last category is the “Non-Standard” approach.  This is the latest resource of techniques, perhaps drawn upon by parents for methods to be used at home.  These approaches are some of the newest theories in treating autism, and may seem extremely unconventional in nature, but sometimes it is the new and innovative theory that is just the thing that breaks through.  Practices such as ”Facilitated Communication” wherein the caregiver helps the child type words on a keyboard to communicate,  “Holding Therapy”, whereby the parent or therapist holds or hugs the child for a certain period of time, even sometimes, with restraint, “Auditory Integration Therapy”, when the caregiver plays various sounds for the child to listen to, or the “Dolman/Delcato Method” which ascertains that other, more basic skills can be learned through crawling, are all new methods that parents and professionals can incorporate into a treatment program. Some of these methods may sound like they are not very sound, but new research and styles of therapy must be considered and should never be discounted.
***
So now we’ve got to look at Clay Aiken once again. Yes, I know, that’s not a difficult thing to do.  But I don’t mean look at his face; I’m not referring to his physicality.  I want you to think about his mind, his heart and what his temperament must be.

Because now that I’ve done the research once again, now that I’ve had an experience with the kids, now that I’ve known a mom with a child that lives with this unusual and frustrating condition, now that I get it, it makes me have to take a deep breath and reevaluate this person, Clayton Holmes Aiken, that I thought I had a handle on before.

Yes, I always knew he had been a Special Ed teacher.  And I knew that he worked with Mike Bubel and cared for him and surely helped him for a period of time.  But I never understood the real meaning of it or saw the scope or the big picture that is the man.  On that day that I spent just a few minutes observing those children, I reached out to them and the women that cared for them.  I felt my heart break and I longed to do something to help in some way, in whatever way God would want me to help, in whatever way I myself could muster.  And even with all the past experience I’ve had in service to people, I knew even at that moment, that I did not have the strength, the assertiveness or the talent to be a Special Ed teacher or caregiver.  But Clay has it.  And along with the other God-given talents he possesses, the big picture has a tendency to boggle the mind.
***
The girl hurried to her car for the drive home.  The sun was just going down, and she knew it would be great at the beach right about now.  But she couldn’t go; the paper was due in two days and she’d probably have to at least start on it when she got home.

The radio was blasting some noise.  Lots of talk, but the noise was also the music.  She needed something soothing, maybe just a single lilting voice singing something to comfort her.  But there was no one around like that these days.  So she turned it off and let her thoughts go back to the subject that had been the puzzle of the day.

It would be all right after she looked at it again, she thought.  It would make sense.  It wasn’t just the nature of the condition; the fact that it was a developmental disability, a category so unfamiliar to her, it was also that these children existed and they were so different from all others. 

She was sure she could help the ones with the social, emotional, even psychological problems.  She could work with mentally retarded children; she was sure.  But this type of child, the syndrome known as autism, baffled her.  That was definitely part of it; the frustration.

Once inside, in her room at her desk, the whole thing still eluded her.  She realized it was a lost cause.  Better just start writing and do the best she could to show she had some understanding.  She knew what it was. It was the reference and textbooks.  Not easy to learn about an entire concept from those.   

For her, it was always best to have a first hand experience, always helpful to have a mentor, someone she knew or admired to explain it and show her the way. Better forget it and just write it, because there was no one she knew that had the experience or the knowledge in this area that would make her want to understand it better.  No, there was no one she knew of like that.  Not right now. She sighed and continued to scribble words on the paper.

Maybe some day.
_____________________________________________________________
Dianne Austin is a homemaker, writer, dancer and former social worker and teacher. Email Dianne at ddaustin@hotmail.com

Resources:
www.autismcoalition.org
www.autism-society.org
www.bubelaikenfoundation.com

Copyright 2004 Dianne Austin. Printed with the permission of the writer.

[clays_spikedhair]

wow i was so hyper before i read that story. and the first time i read it i couldn't get though it all it gave me so much to think about. but i decided to go back and read it. i have been around autistic kids all my life. and i guess i just never gave it a thought untill clay aiken came around. and then a story like this comes along and i can't stop thinking. i live in a town that has a school just for people with learning disorders. i really think what clay is doing is great. i've even talked to mike's mom on the chat room and it's just amazing how much someone can make a difference. and the best thing about clay is he's using fame for everyone not just for him. he is helping a lot of people with this charity!!! i think clay is really an angle in a mask (a cute mask.)i really have a great deal to think about thanks to you. and thats a good thing. i really want to thank you for explaining this better. thank you so much

[Pamela]

Thank you Dianne, for a heartfelt article.  I wanted to share this link to a story posted on the NEA website; it concerns the possibility of a connection between childhood vaccines and and the rise in autism diagnoses. I understand this is a controversial subject.

Autism: The Debate Rages
During the last decade, the meteoric rise in the number of autism cases has become a lightning rod for controversy. Are we seeing an epidemic or just changes in the way autism is diagnosed? Is there a connection between childhood vaccines and the rise in autism, or are vaccines just getting a bad rap?
NEA