Parents of Children with Autism: An Ethnography

By Juliette de Wolfe

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.

• Language: English
• Publisher: Palgrave Macmillan
• Release date: Jul 10, 2014
• ISBN: 9781137436238

Book preview

INTRODUCTION: GOING TO HOLLAND TOGETHER

When I arrived at a library in Queens, New York, Sarah was already setting up. She and I talked for 15 minutes or so while she put infor mational flyers about local service providers on the table, and pre pared the sign-in paperwork for the soon-to-arrive participants. We reflected on the celebratory dinner from the previous night. The dinner had been held to commemorate the by-parents-for-parents support group Sarah had started five years earlier for families of children with autism. Then a group member named Leslie arrived with three of her four children. The kids unpacked snacks and toys and wrote on the chalkboard while the adults continued to talk about the dinner. Shortly after, Julia the mother of an eight-year-old son with autism and vice president of the group, arrived, followed by Kate and her five-year-old son Braden. Braden, having never been to this particular library before, did not want to be there and repeated, I want to go to a different playdate loudly, monotonously for nearly 10 minutes, until he became familiar with his new surroundings, and decided to play with his toys.

The parents continued to talk about the dinner, reminiscing about how surprised they were that Nathan, Leslie’s husband, had stayed at the dinner, even though he’d ended up crying. Nathan has had difficulty accepting the diagnosis of his youngest son, which had been a constant source of tension in his relationship with his wife and, during one of the group members’ speeches, he’d broken down at the table. The women also chatted about the beautiful poem Kate had written for Leslie, celebrating their newfound friendship and bond as mothers of children with autism. Then they reflected on the attendance of Jody, a former teacher of one of the children in the group, at the previous evening’s dinner and how sweet it was of her to show her dedication, not only professionally, but also personally, by attending.

Once all of the regular group members had settled, a woman from a local developmental disability support agency arrived to speak to the parents and to answer parents’ questions about how to access services and supports for their children with autism. Sarah had met her when she was looking for therapeutic horseback riding services, and asked her to share information with the rest of the group during their monthly meeting. The woman explained some of the diagnostic procedures that determine which children can access autism services, and talked about a number of local agencies that provide medical care, legal care, respite services, etc., for children and their families.

About 15 minutes into the conversation, a new woman walked through the door. She introduced herself as Nicole, the mother of a little boy named Leon who had been recently diagnosed, and told us that she saw an announcement about this session for local agency supports online, and decided to attend. She said that she took her son to a local diagnostic agency at 22 months old, and he qualified for Occupational Therapy (OT), Physical Therapy (PT), and Applied Behavior Analysis (ABA) services with a diagnosis of autism. She was now trying to reach out to learn more about different agencies, because she felt that the diagnostic agency left her with a diagnosis, but no other help. Meghan, the mother of a four-and–a-half-year-old son who was diagnosed at two years old—when he was making no eye contact with others and was not speaking—empathized with Nicole and explained that she had to try three different support agencies until she found one that she liked.

The agency professional continued the informal conversation by explaining that once a child is diagnosed with autism and his or her services are determined (whether the child requires speech services, OT, PT, ABA, etc.), there must then be a determination regarding the number of service hours the child will receive, made by an Early Intervention official designee. Nicole explained that she had a big meeting coming up soon to decide the number of service hours Leon would receive and she was nervous about it. The agency professional suggested to Nicole that someone from the evaluation department be present at the meeting to ensure that Leon receives the highest number of service hours possible, and gave her a phone number to call.

The conversation then turned toward what happens once the service hours are set and the therapists begin to arrive to provide services. Rhea expressed that she had felt judged by the service providers at first—because she hadn’t showered yet when they arrived at 8:00 am, or that her house wasn’t clean enough—but then she just got used to their presence. The agency professional assured Nicole that therapists are not there to judge, but encouraged Nicole to get a new therapist if she felt uncomfortable. Reflecting on time immediately after the diagnosis, Kate told Nicole, It’s a loss and you have to absorb it. I wasn’t fully able to understand that it [Braden having autism] wasn’t my fault.

Sarah contributed by telling Nicole that she will run into other people who will judge and stare. She then recounted a story of going to a large warehouse store with her daughter and how awful the experience had been. Her daughter had had a terrible meltdown in the store because of the loud noise from one of the carts backing up in the aisle, and Sarah had to remove her, kicking and screaming, while passersby stared and whispered. Rhea added that, when there is a meltdown, you feel like the whole world is looking at you, you feel defensive, weak, and vulnerable. Nicole explained that she’s already experienced some of this as people have been telling her how to parent, and that someone at the park told her to just spank her child when he had a tantrum recently. Sarah explained that it will not only be strangers, but also family members and loved ones who judge her and Leon. Sarah’s mother, for example, told Sarah soon after her daughter’s diagnosis, that the family should institutionalize the little girl. Rhea agreed with Sarah’s cautioning and gave an example of how her brother doesn’t understand when she and her son cannot attend large family functions like the family used to, and that he becomes offended and angry.

Sarah, nodding along in agreement with Rhea’s anecdote, then looked directly at Nicole and told her that when your child is diagnosed with autism, your old life dies and you have to start a new one. She then offered to read a poem to Nicole called Welcome to Holland (Kingsley 1987) about a parent who likens having a child with a disability to planning a fabulous vacation trip to Italy, only to find out once the plane lands that you’ve unexpectedly arrived in Holland. The poem goes on to explain that while you may always feel the pain of the loss of that trip to Italy that all of your friends are taking, if you spend all of your time mourning that loss, you may never see what wonderful sights and experiences Holland has to offer. By the end of the poem recitation, Rhea, Leslie, and Sarah were all crying, and Nicole sat with her head in her hands, sobbing. She looked up at us and said, I don’t want to go to Holland. Sarah put her hand on Nicole’s knee and said, I know. She then explained that while it’s not a life any of them chose, they were now in it together, and they were going to help each other through it.

The story recounted above is exemplary of the experiences I encountered throughout an18-month study of the quotidian activities of parents of children with autism. Entering the research, I wanted to know what obstacles parents face and how they manage the added stressors of caring for and supporting children with additional cognitive, sensory, physical, or developmental challenges. I wanted to know what it meant to be an autism warrior, fighting for the rights of vulnerable children, and I needed to know all of this to become a better educator, a better empathizer, and a better person in this world. Throughout my research I found that to answer my questions, I needed to learn about parents’ daily activities, the decisions they make when caring for their children, the relationships they create, maintain, and relinquish, and the ways in which they learn about what being a parent to a child with autism means to each of them. In doing so, I chose to explore not only autism parents’ individual experiences, but also the collaborative efforts of support groups for parents of children with autism and how the groups serve as a forum for parents to take action and to be part of an autism family.

To better understand these issues, I conducted fieldwork with individuals connected through APSG, a New York City support group for parents of children diagnosed with autism. By observing group and individual practices, listening to stories, and participating in activities, I was able to learn about parents’ experiences and to interrogate the ways in which those experiences have influenced their lives and, from this research, I’ve gained three important findings that I share throughout this story.

First, parental experiences of autism are multiple and varied, and the moments and spaces parents encounter, the practices they engage in, and the decisions they make for their children, constitute the production and reproduction of their lives as autism parents. Throughout this text I trace the negotiations and renegotiations that parents engage in as they manage personal relationships, cater to their children’s bodies, and navigate various bureaucratic institutions to seek services and supports.

Second, parents engage in collaborative, educative work as members of families, schools, parent support groups, neighborhoods, etc., as they learn about their children’s needs, and teach others about them as well. This work has been put together by reading books and blogs, Googling new treatments, attending meetings, sharing the information parents learn with other parents, with strangers, with loved ones, and making crucial decisions about their children’s lives, based on this information.

Third, parents do this work by employing the autism label, one that is applied—by themselves and others—to their children, their activities, and their identifications as parents. They call themselves autism parents and autism warriors. They recognize that this label has had a tremendous impact on the reorganization of their lives and, so, they own it, use it, and manipulate it in order to care for their children. But while they recognize it as a term to index, an identity to reference, or a label with which to situate themselves, they explain that it can never fully describe the complexities of their lives. Through their stories, I have come to recognize that it is not the autism label that defines their lives, rather it is the daily activities each of them dedicate to caring for their children that define their lives and, in so doing, define autism for each of them.

It is my goal throughout this ethnography to tell the stories of the parents with whom I spent 18 months, as well as to show how parents not only work within the constraints of their daily lives, but engage with those constraints to produce their lives in meaningful ways. In so doing, I strive to demonstrate the power of the educative practices in which the parents in my study engaged, and to suggest that if we want to know more about autism, we must recognize the multiplicity of parental experiences, listen to parents’ stories, privilege those stories as expert knowledge, and take care to learn about the daily activities that define their lives.

CHAPTER 1

Opener.tif

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