Considering the Rights of Personal Choice for Individuals with Autism


If you’re reading this, you are most likely an adult or approaching adulthood. Do you enjoy watching Dancing With The Stars, The Simpsons, or [insert the name of your favorite reality TV series]? Have you recently worn clothing depicting a cartoon character, or maybe you’ve taken a trip to Disney - without accompanying children? What if you were forbidden to engage in these sorts of activities because it was felt that you should have more sophisticated and appropriate behaviors for your age?

Throughout my career as a speech-language pathologist, the parents of my clients have asked my opinion about their children (aged 6 and up) with autism engaging in entertainment, fashion, and hobbies that are considered too juvenile for their age. Caution should be exercised around this concept of ‘age-appropriate’ activities. At the core of this argument is that for people of all ages with autism, the chronological or physical age of the person does not match the ‘mental age’ of their language, cognition (IQ; thought processes), and/or emotional development. Because this ‘mental age’ so heavily influences a person’s belief system, consideration is warranted before forcing a particular preference through excessive exposure or by strong persuasion.

Early on, I was unaware of this concept. Years ago as a college student, I had observed adult patients who were suffering from Alzheimer’s disease, dementia, or traumatic brain injury holding baby dolls. Not only did I fail to ask my superiors why any patient should carry any object, but I thought a more 'age-appropriate' (and gender-specific) option to hold would be something like a purse for a woman and a newspaper for a man. Thinking my observations ought to be put into practice immediately, my supervisor educated me that holding a doll is a legitimate therapy for these populations. For individuals with these kinds of mental deficits, the simulation of caring for another person, especially a baby, is a very soothing and meaningful act-- an act that is familiar to many and, sadly, missed in a life over which they used to be in control as autonomous and/or as a caretaker.

Just like in the example above, acceptance of and advocacy for people with autism, or any difference, means being careful and considerate of their rights of personal choice as individuals. We 'neurotypical' people (i.e., those who do not have autism) can better understand the way those who have autism view the same world that we see and link those two perspectives together through modification and accommodation. To make a proper judgment and distinction between the fixations versus the interests those with autism have, rather than focusing soley on a particular aspect such as age-appropriateness, we should observe closely if they are getting something of value out of such stimulation. We should note if the person is repeating actions or words for the sole purpose of self-stimulation (rituals; scripting; echolalia) - in which case a change of stimulation may be warranted - versus learning new language forms, seeking and grabbing new concepts, or simply relating to an enjoyable interaction. For example, after years of education and therapy, an 11-year-old client of mine finally became able to attend to Sesame Street, which his parents and after-school tutors felt was inappropriate for his age. However, in the past, this television program’s language levels were too advanced for this client's mental age (cognitive and language levels). After a few episodes, he approached me with a joke that he had learned from the show, and he laughed and laughed and laughed…and I laughed along with him, which is something we had never before experienced together!

We should always be offering our children all different kinds of good stimulation. As long as the individual’s choice is not unproductive or harmful, they might find positivity in a form of stimulation that is not our preference. Denying access or imposing our preferences might have a negative effect. In one case, a teenaged client of mine with severe autism and significant intellectual disability was attending a general education public high school. His family felt that he would fit-in better with children of his age if they encouraged him to listen to a certain popular rock band and wear that band’s T-shirt. Instead, imposing these preferences caused my client to become aggressive when listening to this music, and he refused to wear the shirt because of the "scary monsters", he said, were depicted. His own musical preference was for nursery rhyme songs like “Wheels on the Bus” and the accompanying soothing, fun hand motions that he and his younger sister would make as they sang together.

We wouldn’t think twice about the non-English-speaking adult who just arrived to the United States who enjoys watching the silent cartoon Tom and Jerry, whose audience might be perceived strictly as children, because there is no language involved. People with autism are no different. We understand that quality of life means respecting individuality for both health and happiness.

-KKS

Photo Credit: Stuart Miles/freedigitalphotos

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