A Social Teenager Trapped Inside
Temple Grandin, PhD
Autism Asperger’s Digest September/October 2012
Some individuals with autism who appear to be low-functioning have a good mind trapped inside a dysfunctional body that they cannot control. Carly Fleischmann appeared to have no skills at all when she was a child. She had no speech, and she was either in constant motion, destroying things, or sitting alone rocking. The only thing she seemed to care about was potato chips. When she was given a device that had pictures that spoke words when pressed, she quickly learned how to use it. But she found it difficult to press the button for a really needed bathroom break when the button for potato chips was so enticing.
Teachers sometimes underestimate a child’s abilities. One teacher was going to delete the keyboard function on Carly’s communication device. If this had happened, Carly’s parents would have never learned that she knew words. One day Carly typed, “Help teeth hurt.” After this happened a program was started to teach her more words. Every object in the house was labeled. It turned out that Carly was taking in lots of information even though she appeared to not be paying attention.
As Carly slowly became literate, she explained how typing required great effort. She was extremely anxious, and often she would type only with people she knew. Today Carly is typing independently, and she attends a gifted program at her local public high school. She explains how it was so difficult to control her body and sit still. Unlike me, Carly was interested in boys, movie stars, and all the things that a typical teenage girl would be infatuated with. When she was on national TV, she knew she would have to remain still and have no outbursts. She said it would be easier if the cameraman was really cute. To Carly, autism does not define who she is. She wishes her brain and body could be fixed so that normal activities would be easier.
Sensory Bombardment
Carly thinks in pictures that rush at her all at once. I can control the images that come into my mind, but Carly cannot. Filtering out background stimulation is difficult for Carly, and she often has a hard time understanding what other people are saying.
Carly eloquently describes how sensory stimuli would intrude and make listening to a conversation difficult. Carly reports that she often heard only one or two words in each sentence. She describes how cascades of many different stimuli blocked out the conversation. For example, when she was in a quiet coffee shop talking to another person, the relatively low background noise and visual stimuli of the coffee shop could be filtered out. She calls this “audio filtering,” which is often very difficult. Her ability to audio filter became overloaded when a person passed by her table with strong perfume. Now the previously blocked out sounds of the coffee maker and the sight of a door opening and closing all rush in and block out the conversation.
Carly is able to audio filter when the background stimulation is low, but when her audio filtering is overloaded, stimuli from all her senses cascade into her brain and turn everything to chaos. At this point controlling a meltdown is almost impossible.
To help control meltdowns and body movements, Carly does have to take medication. To control herself requires both intense willpower and medication. When she was young, potato chips were the motivation. Today, being able to participate in typical girl interests is the motivator to control her body.
What Is Autism?
Carly’s story makes one think, what is autism? In my case autism is part of who I am, and I do not have the social interests that Carly has. I have no desire to change my brain or be cured. At the so-called high end of the spectrum, autism may be a disorder of the social circuits in the brain. At the other end of the spectrum, it may be a “locked in” disorder where a social person is trapped inside a dysfunctional body and sensory system.
I need to warn the reader to be realistic. Not every child on the more severe end of the spectrum can be Carly, but teachers and parents who are observant can see glimpses of true intelligence in individuals who are unable to “speak.”
Resource
Fleischmann, A., and C. Fleischmann. 2012. Carly’s Voice. New York: Touchstone.
BIO
Temple Grandin is an internationally respected specialist in designing livestock handling systems, and is the most noted high-functioning person with autism in the world today. She is the author of numerous books on autism and is a worldwide speaker on autism topics. Unwritten Rules of Social Relationships, coauthored with Sean Barron and Veronica Zysk, captured a prestigious Silver Award in the 2006 ForeWord magazine Book of the Year competition. Her previous book, Animals in Translation (2005) was on the New York Times Bestseller list. For more information visit www.templegrandin.com
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