As autism awareness grows, our society must address issues in healthcare, publically-funded special education, and general social accommodation for people with autism. Our society experiences autism in a limited scope. Popular media presents us with the archetype of the Rainman—a person with Asperger Syndrome capable of extraordinary cognitive processing on hand, but demonstrating profound social difficulties on the other. Yet we rarely encounter people with an Autism Spectrum Disorder (ASD), unless in a specific position of care.
I spent this summer working in a Rhode Island school for children with moderate to severe autism. For all the students, public school was not equipped with the necessary support. The people surrounding me on staff were capable of handling difficult and stressful situations in a productive manner, experiencing student non-compliance without a jab to their ego, re-teaching students relatively simple skills without losing passion, and handling aggressive behavior safely. With the support of this staff, I, too, became more humbled, more patient, and calmer.
A diagnosis of an Autism Spectrum Disorder—comprised of “Autistic Disorder,” “Asperger Syndrome,” and “Pervasive Developmental Disorder”—defines a range of disabilities. According to the Rhode Island Department of Health, it serves as a blanket diagnosis for children with difficulties in social interaction, communication, and repetitive behaviors. Everything from holding eye-contact to understanding non-verbal cues may be hard for a child with an ASD. Due to delays in the coordination of speech muscles, coupled with impairments in cognitive functioning, some students at the school could not express themselves in speech, and required a “Talk Book” filled with laminated picture-words to express their wants in simple sentences. Disruptions in the normal routine of the day stressed other students. Each student presented a special case to me; I had to learn the indicators of their moods, their academic strengths, and what stressed them out. But to engage with them successfully in the classroom, I also had to know them as individuals.
My engagement with children with an ASD was both personal and scientific. Like many others across the country, the school employs Applied Behavior Analysis (ABA), touted as the only research-proven method of treating ASD. “Treatment,” however, gives me pause; it implies a deficiency that can be overcome, and suggests that until some compromise can be reached, a child with autism may not be able to engage with the society he or she lives in.
Treatment involves intervening in the relationship between a person’s actions and environment. ABA uses a rigorous reward system—everything from edible incentives to verbal praise—to reinforce behavior that allows a person with ASD to operate in our society. It avoids disciplinary behavior. We taught students everyday living tasks: how to tie their shoes, go to the bathroom, and purchase snacks at Wal-Mart. We taught students academic concepts like letter identification, simple arithmetic, and handwriting skills. We also promoted correct social behaviors, like saying hello and keeping a quiet voice, in response to their opposite behaviors. I found myself saying, “nice job staying calm and relaxed,” throughout the day, almost as a chant.
The lessons do not differ from the education an elementary student might get. But the method speaks to the great difference by which the student with ASD experiences the world. Instead of ‘picking up’ a skill by experience and observation, a student in the classroom is actively taught an action over and over until it becomes routine. We broke down a task into its basic stages, and repetitively introduced each part in discrete and intentional steps. For instance, learning to read first involves recognition. One student in my classroom was taught how to recognize her name from a group of three names. First, a teacher instructed, “Touch B,“ and the student would be physically prompted to touch her name by the teacher’s own hand. Later, the teacher will just point to the name and tell the student to touch her name. Each of these stages can take weeks or months to master. Eventually, the student can independently choose her name amongst others in that setting.
But this skill may not yet translate to other environments. The teachers may then Velcro the same names to the wall in the hallway, and as the student walks by, she may not be able to pick out her name. Once learned, each skill must then be generalized into multiple contexts. The task is daunting, and progress grinds. By extension, the learning goals a student can achieve—even in the most intensive one-on-one setting—can only stretch so far. Compromises are made to the ‘typical’ expectations.
Viewed through the regimented approach of ABA, my interactions at the school were completely altered. The psychological language changes the characteristics of an individual into a set of “behaviors.” ABA both assists in recognizing behaviors and responding to them. I came to see ABA as a medium through which to interact with a student. In part, this is because we have little to no access into the internal mental lives of children with severe autism. Science can infer many elements of that internal life from our understanding of typically-developing children. But this understanding, based firmly in the cause-and-effect logic of science itself, yields answers that can only achieve a simple level of complexity.
At the school, we stressed communicating wants. At snack-time, one student would hand a sentence strip to me with four laminated words Velcro-ed to it: “Teacher, I want pretzels.” As far as I know, earlier in the student’s life, he had learned that handing a picture of pretzels to a teacher resulted in him receiving pretzels. Later on, he was taught to form a sentence with the food item he wanted at the end of it. He saw that performing this task correctly led to a certain result. The very cause-and-effect logic used in the ABA method was successfully imposed onto the mental life of the child.
Understanding my interactions in the classroom from a behavioral perspective also provided a necessary buffer for me. This became clear in the case of student stress and aggression. Many students with severe cases of ASD have developed aggressive or self-injurious reactions to certain situations; unfamiliar staff, overly bright lighting, disruptions in schedule, and being told “No” can all be triggers. These environmental factors—“antecedents” in ABA parlance—lead to a build-up of stress which, in some cases, can lead to banging tables, scratching, biting, punching, or the like. This language, describing aggressive behaviors in a pattern of stress levels, changed my encounter with a potentially dangerous student. When I was scratched across the cheek, after a moment of shock, I did not feel immediately threatened. I saw it as a failure of communication. That student could not let me know that I was too close for comfort.
Encountering students with ASD, admittedly, is an extreme encounter with otherness. Most of my hopes, goals, and perspective on the world will never be accessible to a child with autism, severely limiting our shared surface. A child with autism may never read a novel for enjoyment or talk for hours with a friend about experiences and dreams. This is not to say that people with ASD cannot find fulfillment and happiness in life; rather the terms of this fulfillment and happiness need to be radically adjusted. Perhaps a woman with Asperger Syndrome—a less severe type of ASD—will be hired to a job that promotes her skills in processing raw data. And she will have had the support in childhood such that she can express the terms of her social anxiety to her colleagues. But in general, our society does not provide a patient and understanding environment that caters to the needs of people with ASD in any way close to the way my co-workers could provide. Some adults with ASD may never be able to live outside a residential community that gives them the necessary support to live each day. In many ways, the school is providing some of the most rigorous and holistic treatment available.
Behind the work that the school does with these children is a set of ethical values in the subtext of our society. We value human interaction, we value personal agency, and we value happiness. So, the end goal of a communication program for a student is the eventual ability to interact with other people in his or her life, to express needs and wants. Yet inevitably, the terms of these ends will not fit anything perceived as ‘normal.’ A person with autism may be able to survive, but not without being placed in a specific position of being cared for. The decisions and lived experiences of people with autism will always be framed by the limits of our ability to support them. There is an intense sorrow in this realization. It is a sorrow borne on the back of the very character of the society we inhabit, combined with the ethical obligation to each human life, typical or not.
STEPHEN CARMODY B’12 had an enlightening summer.