Parents of Children with Autism

An Ethnography

Juliette de Wolfe

• Publisher: Palgrave Macmillan
• Year: 2014
• ISBN:
  9781137436238
• Topic: Education
• Subtopic: Educational Psychology

In a readable and highly accessible ethnographic account that is shaped by the stories of families and the voices of parents, De Wolfe examines how parents of children with autism navigate the educational and medical systems, understand their own and their children's bodies, and support and educate one another.

CHAPTER 1

ANTHROPOLOGIZING EXPERIENCES OF AUTISM

DOES AUTISM MATTER?

Educational anthropology has long been interested in how people learn about the world around them and how to live in it. Anthropologists in this field have explored how people understand their surroundings cognitively (knowing the slope of a hill where one grows crops, knowing how to read a map and street signs), and culturally (knowing what social cues and behaviors are appropriate, knowing the dos and don’ts of a community). They have researched the deliberate ways that people obtain this knowledge (through parents, schools, media, churches, etc.), and how they pass it on to others. Their research has shown how people become socialized into their families, local communities, workplaces, and societies. As an extension to this research, this book provides a unique example of how this socialization occurs when people are suddenly faced with a situation they may have never dreamed of facing—raising a child diagnosed with autism: What practices do they engage in? How do they talk about their experiences? How do they adopt a new lifestyle? By interrogating this socialization process, I describe in real life moments how the practices of autism parents are negotiated and renegotiated through a collaborative, educative process. This process simultaneously teaches them what it means to be an autism parent, while allowing them to co-construct the meanings of autism parenthood.

Additionally, this ethnography extends the work of disability studies by documenting the quotidian practices and experiences of autism parents to ask the question, “Does ‘autism’ matter?” It explores the elements of care, stigma, guilt, worry, and work that pervade the everyday experiences of parents of children diagnosed with disabilities. Many of the practices and situations documented here could be experienced by parents of children with mental illnesses, learning disabilities, or physical disabilities, just as readily as by parents of children with autism. However, the parents I studied identify as “autism parents” specifically, and regardless of the differences between one child in the group with autism and another very different child in the group with autism, the parents consider them all autistic and consider their lifestyle an “autism lifestyle.” Throughout the ethnography, I grapple with what this “autism” label means to parents and how they use it in their lives to address and learn from experiences that they consider unique to autism. I document moments when the label seems to be forgotten, and other times when it is the only way a parent can describe an experience. I question who or what makes autism important, and when or why it becomes part of a parent’s experience.

Furthermore, this work contributes to a dilemma with which anthropologists have historically struggled: How can we describe the uniqueness of human beings’ varied experiences, while still demonstrating and analyzing the powerful commonalities that allow them to come together in groups? How do we describe the power of these groups without generalizing characteristics to all members of the group? How do we explore their intragroup heterogeneity without neglecting the bonds that keep them together? I ask these questions throughout the ethnography as I present the multiple, varied experiences of parents, while at the same time describing the support groups they have formed, their collectively constructed identifications as autism parents, and the ways they consider themselves different from other parents.

I address these issues, and the others raised above, throughout the ethnography and, to do so clearly, I have organized this text to first introduce the journey that led me to this work, to then trace the path of my ethnographic journey with the parents in my study, and to finally chart a path for future journeys in educational anthropology, disability studies, and applied work with parents of children diagnosed with autism.

First, I situate myself both within the academic fields of study and “the field” where I collected data, describing how I entered this research literally, figuratively, and physically. Through this step, I introduce the reader to previous research I have conducted that has contributed to my understanding of the experiences of raising a child with autism.

Second, I situate this work within a theoretical discussion that involves two parts: (1) the notion of space, the constraints that define spaces, and what happens around and within spaces specifically as these activities are educative in nature, and (2) anthropology’s understanding of children’s bodies that are labeled as disabled, the parents who care for these children, the social spaces in which they find themselves, and the social activities in which they participate.

Third, I introduce an overall methodological approach to my work that emphasizes a shifting focus from discussions of autism at an abstract level, to discussions of individuals’ experiences at a localized, situational, observable level. I describe the dangers of relegating our understanding of autism to this abstract level and show how this ­ethnography responds to these dangers.

Finally, I introduce three thematic threads that run throughout the ethnography—reordering, multiplicity, and temporality—which are used to understand the complexity of the activities in which parents engage, in certain situations and at certain times.

STARTING THE JOURNEY

The journey began approximately six years ago when I worked as a special education teacher in a public school system in Virginia. I taught children with a variety of diagnostic labels, including those with autism. As an educator trained to understand the characteristics associated with an autism diagnosis—the repetitive behaviors, the trouble with social communication and awareness, the difficulty with language—I considered myself to be very knowledgeable about autism and about what the children in my classroom with this diagnosis experienced and what they needed from me as their teacher. I knew what special educational tools and tricks a teacher could employ to motivate and engage students (reinforcements, visual schedules, clear, tangible examples, etc.) and what goals I needed to set for them (making eye contact, initiating play with peers, self-regulation of emotions, etc.). As a teacher, this was the autism that I knew.

Autism to me was a problem that caused some of my students to struggle with learning things that some of my other students could do easily. I interacted with autism through students who had similar educational and social needs, goals, and strengths for which I was required to provide I provided these services and supports to the children and saw their caregivers as a means to better understand the children. As a teacher, the children with autism were my unit of focus, my unit of analysis. I saw the people in their lives—parents, siblings, other relatives—as a means to better understand the child and to help me better focus on “the child with autism.” I saw these individuals as other people in the child’s life who, too, must be focusing only on the child. I used to become frustrated when parents did not implement social skills, academic habits, or progress plans at home in the same manner that I did in school. I could not understand why family members saw different behaviors, or different moments of progress and regression than I did at school. I did not know why it seemed like parents and other caregivers had a different understanding of autism than I did. This interest led me to learn more about autism and, eventually, to pursue a doctoral program, for which I conducted a pilot study during the summer of 2009.

The major findings from my first study taught me about the ambiguous nature of autism as a label put on students in educational settings. Focusing on the educational programming of students diagnosed with autism at the elementary school level, I wanted to learn how teachers understood the autism diagnosis (how the diagnosis has changed over the years, how the rates of diagnostic incidence have increased, how they learned about what autism is, and how they saw their role in the lives of students diagnosed with autism), and how this affected the educational programming that they provided to their students. The first truly instructive finding came from a discussion with several preschool teachers at an elementary school in Virginia, while they discussed which children I should observe during my fieldwork.

A child diagnosed with autism, whom I had initially been encouraged to observe, moved to a new school one week prior to my arrival. Trying to be helpful, the teachers began to consider other kids who did not have official autism diagnoses, but who they believed had “autistic-y tendencies” or behaviors, and whom they thought I might benefit from observing. Before my very eyes (and ears), teachers informally labeled children as being “autistic enough” for an autism researcher to observe, despite having no official medical diagnosis. This showed me how powerful an unofficial diagnosis, created through such a discussion, could be, and made me wonder how these informal diagnoses would impact how teachers view, assess, talk about, and program for various children in their classrooms. I found myself reflecting on this powerful moment years later when I listened to ­several parents tell me that it was not the moment of the official medical diagnosis that changed them, but that informal diagnosis from a relative or that lingering question from another mother at the park. This informal labeling taught me that autism is not simply an official diagnosis, not simply a cluster of behavioral symptoms or characteristics attributed to an individual. Autism as a phenomenon to study meant looking not only at a diagnosis, a label (even when applied informally), but also at the changes in others’ treatments and responses to that label and that individual. This practice of labeling, both formal and informal, instructed teachers on how to understand and address autism in their classrooms. It also instructed them on how to address and understand the children’s families. These practices determined teachers’ notions of autism and how they would, in the future, identify and address autism and kids they considered “autistic-y.”

A second finding from that study demonstrates how classroom practices can inform the presentation of autism, as well as what characteristics and behaviors a person diagnosed with autism may exhibit. I found that the decision to operate an “autism classroom” in a particular way (versus a general education classroom), including scheduling, seat arrangement, division of labor between educators in the room, etc., and the practices involved, could bring about the characteristics that are used to define autism, such as a child’s frustration, self-stimulatory behaviors, and acting out. At an elementary school, I observed autism classrooms with autism teachers in special autism summer school programs created to address the needs of students with autism. Despite their good intentions, I observed these people and their supports create the kind of confusion and inconsistency that can lead a child to exhibit hand flapping, inattention, and frustration.

For example, during independent work time, the teacher rotation (a highly structured model in autism classrooms where students rotate around the room to work with different teachers on different activities) got mixed up and a student was sent to an activity he had attended, rather than the free time he had earned. This injustice made him very upset, but because he could not speak, he could not communicate the error to his teachers. Instead, to get the teachers’ attention, he began to flap his arms, shake his head, and refused to complete the assigned activity. In this research I found that the organization and implementation of some classroom practices could actually highlight these autistic characteristics in students. I was able to see that autism is not simply an internal neurodevelopment difference, or a set of behaviors exhibited by a child with a diagnosis, but rather a complex interworking of people, places, rules, paperwork, behaviors, and structures; the behaviors of children are impacted greatly by the environment around them.

Reflecting on the findings from this study, it seemed almost as if autism was being socially constructed in front of me—teachers were calling kids “autistic-y” and classrooms were being arranged in a way that only seemed to heighten autistic behaviors, and all with the very best intentions. This theory of autism as a social construct is not novel, however. Timimi et al., for example, suggest that autism is a social consequence of society’s changing definition of emotional competence (2010). Nadesan, a mother of a child diagnosed with autism, offers a different kind of theory, suggesting that autism does have a biological component, but the way that autism is described, treated, managed, interpreted, etc., has socially evolved from the work of institutions and organizations, work that now defines what it means to be autistic (2005). Hacking (1999) also writes about the social construction of autism by presenting autism as something he calls an interactive kind, a label or category that is able to interact with the ideas, discussions, and actions around it and can be transformed by these interactions. For example, when the label “autism” interacts with a new piece of health insurance legislation that details the symptoms necessary to receive coverage, those symptoms may be recorded by doctors more often to help families receive coverage and, in turn, those symptoms may soon seem more characteristic of the label than others.

Remembering my own time as a classroom teacher, however, I was not content with dismissing autism as simply a social construction. Through my research I noticed that practices surrounding, and beliefs concerning, autism were made and remade through everyday interactions in the classroom, but I was not prepared to say that this was simply “made up.” My experience as a teacher had been real. The experiences of the teachers and administrators I studied had been real. And thinking back to the parents I had struggled to understand, the experiences of families—these had to be real as well. As a teacher I had seen too many parents sad, angry, frustrated, and confused to wave off autism as without a realness, without a reality. It was at this time that I started to recognize the research paradigm that I was forming in regard to autism: there was not just one autism reality, there were many. Infinitely many, even, and I wanted to study some of them.

I soon realized that in my work the focus would never be corralling a finite definition of autism, discovering the ultimate cause, or ridding the world of autism. I instead began with the premise that autism had meant something very different to me as an educator than it may have to the parents of my students with this diagnostic label, and that the only way I would be able to understand what those meanings were, was by asking them about autism and experiencing their autism lifestyle with them, through participant observation. With this approach, I became interested in finding out how parents of children diagnosed with autism learn about autism. This led to a project conducted with several parent support groups in New York City from April through July, 2010.

FRAMING THE WORK

Through this work in New York, and in getting to know the parents intimately by listening to their experiences, I began to develop a framework for thinking about what I heard and saw. This theoretical understanding formed first around the notion of bodily interactions with the world—how parents’ bodies int...