AN ABSTRACT OF THE DISSERTATION OF

Hyun-Kyung You for the degree of Doctor of Philosophy in Human Development and

Family Studies presented on May 26, 2009.

Title: Mothering a Child With Autism in the United States and in South Korea.

Abstract approved:

____________________________________________________________________

Lori A. McGraw Katherine A. MacTavish

In this dissertation, I qualitatively examined the meaning of mothering a child

with autism in two countries: the United States and South Korea. The overarching

research question focused on how sociocultural ideas about mothering and disability,

particularly autism spectrum disorders, shape women’s understanding of themselves

and their children with disabilities.

In the first study, using symbolic interactionism and feminism, I examined (a)

how middle-class, White women who have children with autism understand

themselves as mothers and (b) how their ideas are shaped by social interactions with

others. Through in-depth interviews with 12 women who have children with autism, I

found that these mothers understand themselves to be empathic supporters, mediators,

and advocates for their children with autism. Their stories are shaped by selective
attention to those who support their self image and a disregard of those who

undermine it. Implications for policy and practice are offered.

In the second study, guided by the integration of feminist and disability

theories within a social constructionist framework, I asked (a) how dominant

sociocultural systems related to mothering and disability shape South Korean mothers’

understanding of themselves and their children with autism and (b) how mothers

conform to and resist these systems. To answer these questions, I conducted in-depth

interviews with 14 middle-class, South Korean mothers with children who have

autism. I found that these mothers resisted stigmatizing attitudes toward themselves

and their children and they reconstructed the meaning of “normal” childhood by

relying on a network of similarly situated mothers. They described themselves as

“good” by adhering to Confucian family values that encourage women to sacrifice

themselves to focus on their children’s success.

From these findings, the two studies collectively demonstrate that mothering a

child with autism is (a) gendered, (b) specific to ones’ understanding of autism, and (c)

both oppressing and empowering to women. The overarching implications for policy

and practice are offered.

© Copyright by Hyun-Kyung You

May 26, 2009

All Rights Reserved

Mothering a Child With Autism in the United States and in South Korea

by

Hyun-Kyung You

A DISSERTATION

submitted to

Oregon State University

in partial fulfillment of
the requirements for the
degree of

Doctor of Philosophy

Presented May 26, 2009

Commencement June 2010
Doctor of Philosophy dissertation of Hyun-Kyung You presented on May 26, 2009.

APPROVED:

__________________________________________________________________
Co-Major Professor, representing Human Development and Family Studies

__________________________________________________________________
Co-Major Professor, representing Human Development and Family Studies

__________________________________________________________________
Chair of the Department of Human Development and Family Sciences

__________________________________________________________________
Dean of the Graduate School

I understand that my dissertation will become part of the permanent collection of

Oregon State University libraries. My signature below authorizes release of my

dissertation to any reader upon request.

_________________________________________________________________
Hyun-Kyung You, Author
 ACKNOWLEDGMENTS

I would like to thank the many individuals who have supported me and

guided me throughout my graduate program. First of all, I wish to express my

gratitude to my co-advisors, Dr. Lori McGraw and Dr. Katherine MacTavish. It is

difficult to explain in words how much their support has meant to me. Without

their guidance and encouragement, I would not have completed this work. In

particular, I appreciate Dr. McGraw for spending countless hours passing on to me

her expertise in qualitative research methods and family care work. I am thankful

to Dr. MacTavish for believing in me and cheering me on throughout the process.

The insights and advice from my committee members, Dr. Leslie Richards and Dr.

Alexis Walker, also have been valuable. In addition to my committee members, I

thank my fellow Korean students--Yuiin Jeong, Soyoung Chun, and Sungrok

Kang--in the department of Human Development and Family Sciences. As we

have broadened our knowledge about families and children at Oregon State

University, our friendships have grown over the years. I have no doubt that we will

continue our friendships across time and place. I am also grateful to the South

Korean and Oregon mothers who shared their life stories with me in this

dissertation.

Most of all, without the support of my parents and grandmother, I would

have not even begun my journey. I am grateful that they have believed in me and

prayed for me. Finally, I am thankful to my partner, Tim, for his love, friendship,

and patience.
 CONTRIBUTION OF AUTHORS

Lori A. McGraw and Katherine A. MacTavish are the co-authors of the first

manuscript, Striving to Be a Better Mother: Women Who Have Children with Autism.

They offered conceptual, methodological, and analytic advice to the study. For the

second manuscript, The Intersection of Motherhood and Disability: Being a “Good”

Korean Mother to an “Imperfect” Child, Lori A. McGraw is the co-author. She

provided conceptual, methodological, and analytic guidance to the study.

 TABLE OF CONTENTS

Page

INTRODUCTION……………………………………………………………… 1

A Description of the Studies……………………………………………. 2

Theoretical Perspectives………………………………………………… 3

Overall Literature Review………………………………………………. 8

Rationale and Research Questions for the Present Studies………........... 18

Method………………………………………………………………….. 19

STRIVING TO BE A BETTER MOTHER:

WOMEN WHO HAVE CHILDREN WITH AUTISM………………………… 24

Abstract…………………………………………………………………. 25

Literature Review………………………………………………………. 27

Method………………………………………………………………….. 29

Themes………………………………………………………………….. 33

Discussion………………………………………………………………. 41

References……………………………………………………………..... 44

THE INTERSECTION OF MOTHERHOOD AND DISABILITY:

BEING A “GOOD” KOREAN MOTHER TO AN “IMPERFECT” CHILD….. 48

Abstract…………………………………………………………………. 49

Gender and Disability in South Korea…………………………….......... 50

Mothering a Child With a Disability…………………………………..... 54

Theoretical Framework………………………………………………..... 56

Method………………………………………………………………….. 58
 TABLE OF CONTENTS (Continued)

Page

Themes………………………………………………………………….. 62

Discussion and Implications……………………………………………. 74

References………………………………………………………………. 77

CONCLUSION……………………………………………………………... 83

Summary of Findings……………………………………………….. 83

Conclusions Drawn From Each Study……………………………… 84

Implications for Practice……………………………………………. 87

Future Direction…………………………………………………….. 92

BIBLIOGRAPHY………………………………………………………….. 93
 LIST OF APPENDICES

Appendix Page

A. Inventory for Severity of Autism Spectrum Disorders……………………… 104

B. Screening Questions for Eligibility………………………………………….. 106

C. Interview Protocol…………………………………………………………… 109

D. Demographic Information…………………………………………………… 112

 DEDICATION

I dedicate this dissertation to my mother, Jong-Bok Lee, my father, Jong-Hyun You,

and my husband Timothy Nam who believe in me.

 1

Mothering a Child With Autism in the United States and in South Korea

INTRODUCTION

The values and norms of a society influence what mothering means (Glenn,

1994). To be considered “good,” women in the United States are expected to take care

of their children, often sacrificing their own desires and interests for their children’s

needs (Arendell, 2001; Hays, 1996). They also are expected to cultivate the talents of

their children and socialize them to be successful in society (Lareau, 2002). These

expectations are not so different for mothers who have children with disabilities. In

addition, what these women are expected to do is uniquely related to their child’s

disability in particular sociocultural, historical, and political contexts (Skinner &

Weisner, 2007; Whyte & Ingstad, 1995). Because disability is viewed as an

individual’s failure or incompetence in most societies (Whyte & Ingstad, 1995),

mothers are expected to provide care and to manage the stigma and discrimination

associated with their children’s disabilities (Green, 2003; Read, 2000; Traustadottir,

1991).

In this dissertation, I attend to the meanings of mothering a child with autism.

In particular, I highlight how White American mothers and South Korean mothers who

have children with autism understand themselves and their children. In the first

manuscript, I pay attention to how White American mothers understand themselves

and their children with autism through social interactions with family members,

friends, and professionals. In the second manuscript, I concentrate on how mothers

conform to and resist sociocultural systems that stigmatize individuals with disabilities
 2

and devalue women’s care work. By focusing on the narratives of these women, I

expand the discussion of motherhood to embrace the experiences of mothers who

provide care to their children with autism.

A Description of the Studies

In the first study, Striving to Be a Better Mother: Women Who Have Children

with Autism, with Lori McGraw and Katherine MacTavish, I examined the

development of a maternal self-image by analyzing the stories of 12 middle-class,

White mothers who have children with autism in Oregon. Using a qualitative research

method, I conducted in-depth interviews with these women during the academic year

of 2007-2008. Guided by symbolic interactionism and feminism, I focused on (a) how

women who have children with autism understand themselves and their mothering and

(b) how their ideas are shaped by their social interactions with relatives, friends,

neighbors, and professionals. I paid attention to the ways that women exercise their

agency through social processes.

In the second study, The Intersection of Motherhood and Disability:

Being a “Good” Korean Mother to an “Imperfect” Child, with Lori McGraw, I

investigated the intersection of gender and disability by analyzing the narratives of 14

middle-class, South Korean women who have children with autism. Using a

qualitative research method, I conducted in-depth interviews with these women during

the summer of 2006. Guided by feminist and disability theories within a social

constructionist framework, I looked at (a) how dominant sociocultural systems related

to mothering and disability shape South Korean mothers’ understanding of themselves

 3

and their children with autism and (b) how mothers conform to and resist these

systems. I paid attention to both traditional and contemporary discourse on

motherhood and children with disabilities in South Korea.

Theoretical Perspectives

The studies in this dissertation are guided by unique but related theoretical

perspectives. For the first study, symbolic interactionism and feminism guided the

research process for investigating women’s understandings of themselves and their

children with autism. For the second study, the integration of feminist and disability

theories within a social constructionist framework offered a way to examine how

South Korean mothers conform to and resist discourse related to being a “good”

mother and a “normal” child.

Symbolic Interactionism

Since Herbert Blumer (1969) invented the term symbolic interactionism,

integrating thought from a number of theorists to form its foundation, symbolic

interactionism has been influential in advancing the understanding of human beings

(LaRossa & Reitzes, 1993). With attention to the relationship between symbols and

interactions (Blumer, 1969; Erikson, 2003; LaRossa & Reitzes, 1993), symbolic

interactionists focus on meanings that individuals create as they interact with others.

During this interactive process, individuals develop understandings of themselves. In

other words, they develop a self-concept through interaction with others. Their self-

conceptions, in turn, affect their behaviors.

 4

Symbolic interactionism has helped not only social scientists to understand

human beings but also family scholars to recognize that family is a social institution

(Erikson, 2003; LaRossa & Reitzes, 1993). According to LaRossa and Reitzes (1993),

symbolic interactionism uniquely contributes to family studies because of “the

emphasis it gives to the proposition that families are social groups and, its assertion

that individuals develop both a concept of self and their identities through social

interaction, enabling them to independently assess and assign value to their family

activities”(p. 136). A symbolic interactionist theoretical perspective suggests that

mothers understand themselves and their mothering a child with autism through

interaction with their extended family members, friends, neighbors, and professionals.

Social Constructionist Perspective

Since Berger and Luckmann (1966) initiated a discussion about the nature of

subjective and objective realities in their book Social Construction of Reality: A

Treatise in the Sociology of Knowledge, social constructionism has provided an

alternative worldview for social scientists studying diverse family relationships. The

origins of social constructionism, however, can be traced back to symbolic

interactionism (Gubrium & Holstein, 2000; Larkin, 2004). According to McGraw and

Walker (2005), both social constructionists and symbolic interactionists are interested

in how individuals understand themselves. Schwandt (2000) argues that with a social

constructionist perspective, individuals take an active part in the interactive process of

creating meanings; “We invent concepts, models, and schemes to make sense of

experience, and we continually test and modify these constructions in the light of new
 5

experiences (p. 197).” Social constructionists also focus on discourses within a

specific culture (Burr, 2003). Discourses are made up of cultural and material

practices that shape individuals’ understandings of themselves and their relationships

in the world (Denzin, 1997; Schwandt, 2000).

To understand this interactive process of creating meanings, a careful

examination of the existing knowledge about motherhood and disability is necessary

(Burr, 2003; Roy, 2001). For instance, although a wheelchair can be described as a

chair with two wheels, this physical description might have different meanings to

different individuals. For individuals who are physically capable of walking without

any assistance, a wheelchair might be a symbol of disability or of the inability to walk.

For those who are physically incapable of walking, however, a wheelchair might be a

symbol of mobility. Knowledge about a wheelchair is constructed through such

subjective interpretations of a wheelchair.

In studying the meanings given to the experiences of mothers who have

children with autism, a social constructionist theoretical perspective allows me to pay

close attention to both (a) how sociocultural systems shape women’s understandings

of themselves and their children and (b) how these women resist and/or conform to the

dominant discourse related to mothering and disability.

Feminist theories. Feminist theories highlight discourses that encourage

mothers but not fathers to be primary caregivers for their children with autism.

Feminism has inspired social scientists to focus on altering unfair power relations

between women and men both in and out of family contexts (Glenn, 1994; Osmond &
 6

Thorne, 1993; Thompson & Walker, 1995; Tong, 1998). Within a patriarchal family

structure, women, ironically, have been supported and suppressed (Ferree, 1990;

Thompson & Walker, 1995). Feminist theories, then, enable me to pay attention to

how mothering can simultaneously weaken and strengthen women’s position in

families and in the larger social world.

From a feminist perspective (Osmond & Thorne, 1993; Thompson & Walker,

1995; Weedon, 1997), the particular sociocultural context in which a woman lives

influences how she understands herself. For example, sociocultural discourses that

vary over time and place define and reinforce what it means to be a proper woman.

Glenn (1994) argues that mothering is closely connected with gender, not because of

women’s biological characteristics, but because of stratification and hierarchy within a

society that devalues women and children. Mothers who have children with autism

play a major caregiving role not because they are biologically more suited for the job,

but because they live in a society where the division of care work is hierarchical.

Feminism provides a political and theoretical framework to discuss the sociocultural

image of motherhood and to question the gendered care work in families of children

with autism.

Disability theories. Disability theories and disability rights movements also

provide a framework to understand the meanings of mothering a child with autism.

Historically, individuals with disabilities have been called disabled, retarded, or

crippled, terms that diminish their personhood and highlight their impairments

(Murphy, 1995; Whyte & Ingstad, 1995). Today, because of disability activists, the
 7

term, individuals with disabilities, is used to honor the social position of these

individuals and to relegate their disabilities to a secondary status (Barnes, 1996).

Being considered “abnormal” or “bad” and “normal” or “good” is related to

the values and norms of any given society and culture (Whyte & Ingstad, 1995).

Although disability has been universally defined as “any restriction or lack (resulting

from an impairment) of ability to perform an activity in the manner or within the range

considered normal for a human being” (World Health Organization, 1980, p. 28), the

meanings of disability are specific to how it is viewed in any given society. Disability

can be understood, then, not as a biological experience but as a sociocultural

experience that limits and constrains, and perhaps supports and enables the lives of the

affected individuals (Murphy, 1995; Whyte & Ingstad, 1995).

In conclusion, symbolic interactionist, social constructionist, feminist, and

disability theoretical perspectives guided the research in this dissertation. These

theories are unique, but related to one another in that individuals understand

themselves within social context. For both studies, feminist theories offered a

foundation to understand the socially undervalued care work that women perform

(Osmond & Thorne, 1993; Thompson & Walker, 1995; Tong, 1998; Weedon, 1997).

Both symbolic interactionist and social constructionist perspectives allowed me to pay

attention to the meanings that women assign to their mothering experiences (Blumer,

1969; Gubrium & Holstein, 2000; LaRossa & Reitzes, 1993; Schwandt, 2000). In

addition, disability theories helped me to notice how children with autism are viewed
 8

in the Korean cultural context for the second study (Murphy, 1995; Whyte & Ingstad,

1995)

Overall Literature Review

Women are expected to carry out the direct and indirect activities of providing

care for children in both South Korea and in the United States (Coltrane, 2000;

Hochshild & Machung, 1989; Lee & Keith, 1999; McGraw & Walker, 2004). Women

in each country have been expected to intensively socialize their children as well (Cho,

1998; Hays, 1996; Lee & Keith, 1999). A good mother in each of these cultural

contexts engages in activities that are “exclusive, wholly child centered, emotionally

involving, and time-consuming,” thereby sacrificing her desires and time for her

children’s needs (Arendell, 2001, p. 413).

Another similar pattern in these two countries is the stigma associated with

individuals with disabilities. In both South Korea and in the United States, there is

intentional and unintentional prejudice toward and discrimination against individuals

with disabilities (Kim, 2002; Lee, 1998; Murphy, 1995). Mothers who have children

with disabilities confront educational and social discrimination against their children

when they seek educational opportunities for them. Being a good mother may not be

enough for these women, however. Borrowing the term from Goffman (1963), they

also may need to be “wise,” accepting and embracing their children’s abnormality and

sharing the stigma experienced by their children.

Previous research on mothering and on mothering a child with disabilities has

paid scarce attention to how these mothers experience and create meanings in relation
 9

to the sociocultural images of good mothering (McDonnell, 1998; Pun, Ma, & Lai,

2004). Instead, most researchers from South Korea and the United States have focused

on the physical, psychological, and financial stresses that mothers experience because

of their children’s disabilities (Lee & Jun, 2004; Leiter, Krauss, Anderson, & Wells,

2004; Litt, 2004; Porterfield, 2002).

Gender and Mothering in the United States and South Korea

In the United States, motherhood is an institution that encourages women to

think and act in conformity with larger social and cultural expectations (Bernard, 1974;

Osmond & Thorne, 1993). One of these expectations is that a woman will sacrifice her

time and energy for her children (Hays, 1996; Thompson & Walker, 1989; Walzer,

2004). According to several scholars (Arendell, 2001; Glenn, 1994; Hays, 1996;

Walzer, 2004), mothers organize and carry out activities that nurture others and

strengthen family relationships. These activities range from hugging their children to

scrubbing toilet bowls. Whatever the meanings given to such activities, mothers often

perform a “second shift” of housework (Hochschild & Machung, 1989), childcare, and

household management beyond paid work outside the home more than fathers do

(Coltrane, 2000; Lareau, 2002; McGraw & Walker, 2004; Thompson & Walker, 1989).

An image of a good mother in South Korea is not so different from the image

in America, although it is rooted in a different philosophical foundation. Confucian

thought, one of the major belief systems in Korean society (Rhi, 1998), has played a

significant role in reinforcing the gendered position of women in families (Cho, 1998;

Lee, 1998). Confucianism promotes the understanding of human relationships through

 10

the logic of the Samkang-Oryun (Three Bonds and Five Relationships) (Tu, 1998). For

the purpose of social stability, the idea of Samkang (Three Bonds) is based on

dominance and obedience. Historically, this idea appeared in the Han fei tzu, an

original Confucian belief that was transformed into a political ideology: “The minister

serves the king, the son serves the father, and the wife serves the husband. If the three

are followed, the world will be in peace, if the three are violated, the world will be in

chaos” (Tu, 1998, p. 122). Oryun (Five Relationships) (i.e., father and son, ruler and

minister, husband and wife, young and old, and friend and friend) also provides

guidelines for relationships. In a husband-wife relationship, for example, the principle

of mutuality and the division of labor for accomplishing and maintaining family

stability is emphasized. For the purpose of family harmony, the idea of Samjong-jido

guided the lives of women (Cho, 1998). Within this principle, women must follow

three men in their lives: fathers, husbands, and eldest sons. The virtue of womanhood

in Confucianism is earned by being married to a man whom a woman follows,

accepting a subservient family role, and bearing a son. Some of these principles have

faded with modernization, but still continue to influence the lives of contemporary

women.

These beliefs have both encouraged and hindered the lives of women in South

Korea. Traditional Korean society has encouraged mothers to sacrifice their lives for

their children, especially their sons (Cho, 1998; Kim, 1999). When a mother raises a

successful son, then, usually when she becomes old, she achieves social respect, status,

and power over other family members. The social status of women more so than men
 11

is closely related to their role as mothers, regardless of their engagement in paid

employment (Cho, 1998; Kim, 1993). After World War II, western influences (e.g.,

democracy, capitalism, and Christianity) aided the social mobility of working and poor

families (Lee, 1998). Education, traditionally only available to privileged groups

according to the caste system, became a stepping-stone for poor individuals and

families to gain social and economic stability (Lee, 1998). Korean mothers have been

expected to take responsibility for educating their children. In this way, children can

achieve social and economic stability (Cho, 1998).

Mothering activities and practices are also closely linked to social, political,

and historical contexts in the United States (Glenn, 1994). In the late 17th and 18th

centuries, a major responsibility of a good mother was to breed a good line of children

for economic purposes (Badinter, 1981). During the late 19th century, with the advent

of the ideology of innocent childhood, mothers in middle-class families dedicated their

lives to educating and socializing their children (Badinter, 1981; Wishy, 1968). Since

the mid 20th century, the image of a good mother has been intensified among middle-

class American families (Hulbert, 2003). Advice literature, written primarily by male

child experts, highlights that mothers are essential for childrearing (Hays, 1996;

Hulbert, 2003; Walzer, 2004). Many women have followed this advice and have felt

valued for their mothering (Glenn, 1994). When mothers are not self-sacrificing and

all-giving, however, they are targeted for criticism. Furthermore, mothers are expected

to be professionally successful, meeting the sociocultural ideal of a supermom

(Arendell, 2001).
 12

Mothering a Child With a Disability

Previous studies often have focused on the stress parents who have children

with disabilities feel because of their experiences (Bailey & Simeonsson, 1988;

Beckman-Bell, 1981; Singer & Farkas, 1989). These studies also highlight what

parents need to do to cope successfully with their situations. The studies have shown

that parents who have children with disabilities do indeed have higher levels of stress

compared to their counterparts whose children do not have disabilities (Bristol &

Schopler, 1984). Parents also have more financial problems and marital difficulties

(Beckman-Bell, 1981). Past studies also emphasize that parents experience a life long

journey of caregiving that is accompanied by feelings of guilt, anger, devastation, and

sadness (Blaska, 1998; Turnbull & Turnbull, 1997). Although findings from these

studies have contributed to the understanding of families in such situations, a deficit-

focused approach fails to notice that caregiving is also rewarding.

Moreover, the highly gendered nature of caregiving for children with

disabilities has been overlooked (Traustadottir, 1991), despite the fact that fathers are

less likely to be involved in direct and indirect care for their children (Marcenko &

Meyers, 1991). Mothers spend more time and energy on family work than fathers do

(Coltrane, 2000; McGraw & Walker, 2004; Thompson & Walker, 1989), particularly

when they are providing care to their children with disabilities (Read, 2000;

Traustadottir, 1991, 2000).

The experiences of mothers who have children with disabilities are

contradictory and include both stresses and joys. Caring for children with disabilities
 13

can be empowering for some mothers because this experience gives them a sense of

satisfaction and pride (Nicholas, 1999; Traustadottir, 1991, 2000). These mothers can

see themselves as being good (Skinner, Bailey, Correa, & Rodriguez, 1999). Two

thirds of mothers with children who have developmental disabilities, for example, felt

that they had become good mothers (Skinner et al., 1999). Caregiving can also be a

troubling experience. Mothers can feel trapped and restricted by their responsibilities

(Nicholas, 1999; Read, 2000; Traustadottir, 1991). In a study by Traustadottir (1991),

caring meant “the caring work, which can be extremely hard and demanding” for the

mothers she interviewed (p. 216).

Evidence suggests that mothers caring for children with disabilities also work

to create a new kind of mothering image for themselves (Nelson, 2002). This process

involves mediation, meaning that mothers interpret their children’s needs to

professionals and even strangers (Read, 2000). They also make efforts to change the

stereotypical image of individuals with disabilities by presenting a positive image of

their children to friends, family, and others (Read, 2000). Advocating for the needs and

rights of their own children and others with disabilities can become a part of their

mothering as well (Traustadottir, 1991). Thus, for these women, being a good mother

involves mediating the stigma that is associated with their children’s disabilities.

Beyond these experiences, several scholars have paid attention to how the

sociocultural images of a good mother interact with mothering a child with a disability.

In raising children who have disabilities, mothers often feel they are being blamed or

labeled as bad (Landsman, 2000; McDonnell, 1998; McKeever & Miller, 2004; Read,
 14

2000). An image of a good mother who bears and raises a healthy child who can be a

productive member of society is strong in both South Korea and the United States.

Sometimes, though, sociocultural ideas that serve to blame mothers for their children’s

imperfection can be transformed by mothers into blame for the neurological

functioning of their children’s brain (Singh, 2004). This is especially true for mothers

whose children are diagnosed with Attention Deficit/Hyperactivity Disorder (Singh,

2004).

McKeever and Miller (2004), in their reanalysis of three qualitative studies,

found that Canadian mothers of children with disabilities are under social pressure to

conform to traditional ideas of mothering. Giving up or limiting their paid work hours

is one strategy these women used to engage in this kind of mothering (Leiter, Krauss,

Anderson, & Wells, 2004; McKeever & Miller, 2004; Porterfield, 2002). McKeever

and Miller argued that these mothers played within the rules of the sociocultural

ideologies of a good mother, but they also resisted the idea of a spoiled body image for

their children with disabilities. These mothers tried to increase the social position of

their children by paying extra attention to their children’s hygiene and clothing.

Mothering a Child With Autism

Approximately 1.5 million Americans (0.005%) and 13,000 South Koreans

(0.0002%) are diagnosed with autism spectrum disorders (United States Government

Accountability Office, 2005; Korean Ministry of Health and Welfare, 2008). Because

of the increasing prevalence of this disorder and the ambiguity of its cause

(Newschaffer, Falb, & Gurney, 2005), ASDs have recently received great attention
 15

from the general public in both South Korea and the United States. Over the last few

years, several news magazines in both countries published articles about children with

ASDs, focusing on its causes (Gorman, 2004; Kalb, Springen, Pierce, Raymond, &

Hontz, 2005; Kim, 2005; Lee, 2005). These articles alerted both South Korean and

American parents to watch for early signs of ASDs in their children. Reporters also

warned that routine childhood shots such as the MMR--the triple vaccine against

measles, mumps, and rubella—might cause children to develop ASDs.

Recently in South Korea, a nonfictional film was made about a young

marathoner with ASDs and his persistent mother. This film received great attention

from the general public, recording the highest box office rating in early 2005 and

receiving a number of awards (Lee, 2005). In the United States, the Oscar winning

film, “Rain Man,” casting Dustin Hoffman as a savant with autism has continued to

influence how the general public thinks of individuals with autism (Bumiller, 2008).

As more children are diagnosed with ASDs (Newschaffer, Falb, & Gurney, 2005), this

particular disability draws considerable interest.

In both countries, ASDs have been one of the latest disabilities to be

recognized. ASDs in the United States were included in the most recent American

Psychological Association classification manual, Diagnostic and Statistical Manual of

Mental Disorders 4th edition (Mauk, Reber, & Batshaw, 1997; Newschaffer, Falb, &

Gurney, 2005). In South Korea, ASDs were classified as developmental disabilities in

1999 (Kim, 2005). ASDs are pervasive disorders that affect individuals’ information

processing, integration, and organization abilities. These disorders are life-long

 16

conditions that qualify as developmental disabilities. The severity of the condition

varies greatly, from individuals who need someone else’s assistance for almost

everything they do to those who can function fairly independently. Overall, children

and adults with ASDs have problems with social interaction, communication, daily

functional skills, and educational performance (American Psychiatric Association,

1994; Mauk, Reber, & Batshaw, 1997). Unlike other developmental disabilities, the

physical appearance of these children often does not differ from those of typically

developing children. Moreover, about 80% of children with ASDs are boys (Mauk,

Reber, & Batshaw, 1997). Though we know major characteristic of ASDs, further

research is required to find out what causes this disability.

Leo Kanner, who first identified children with autism a half century ago,

theorized that cold, obsessive, and mechanical mothering contributed to children

developing autism (Kanner, 1943; Mauk, Reber, & Batshaw, 1997; McDonnell, 1998).

In his theory, “refrigerator” mothers, who lack affection and warmth, produce children

who cannot interact with others appropriately and exhibits odd behaviors, despite their

healthy appearance. The relatively late onset of the disability (at about age three) also

aided this theory. Unfortunately, such beliefs still exist in the United States. Mothers

who have children with autism often feel blamed for not interacting enough with their

young children, particularly if they have left their children in childcare in order to

work for pay (McDonnell, 1998).

A more recent debate about whether routine childhood vaccinations may cause

children to develop autism also may contribute to labeling mothers with children with
 17

autism as “bad.” Women are blamed for having their children immunized and for not

having them immunized. Although there are not any known causes for autism (Mauk,

Reber, & Batshaw, 1997; United States Government Accountability Office, 2005),

mothers of children with autism may feel guilty about their children’s disabilities

because of what they have or have not done.

Similar to previous studies about caring for children with disabilities,

researchers focusing on children with autism are concerned about parental or maternal

stress and their associated coping strategies (Bristol & Schopler, 1984; Gray, 1994,

Honey, Hasting, & McConachie, 2005). Most studies show that parents or mothers

experience psychological and physical stress when caring for their children with

autism, despite their children’s healthy physical appearance (Bristol & Schopler, 1984;

Gray, 1993, 1994; O’Brien, 2007). In his qualitative study of 33 parents of children

with autism, Gray (1994) identified the sources of stress as being related to the

characteristics of autism: (a) limited language development, (b) physically and/or

sexually aggressive behaviors, and (c) developmentally inappropriate eating and

toileting skills. Bristol and Schopler (1984) argued that the mothers of children with

autism had an especially difficult time accepting their children’s diagnosis because the

children exhibited some age or developmentally appropriate behaviors and they did

not look sick or disabled. Because of this ambiguous nature of autism, O’Brien (2007)

showed that the experience of receiving the diagnosis of autism is similar to the

experience of ambiguous loss that was positively related to higher level of perceived

stress and depressive symptoms in her mixed methods study of 63 mothers who have
 18

children with autism.

Although these studies have made valuable contributions to understanding the

experiences of parents who have children with autism, most of them fail to recognize

that caregiving is gendered (Traustadottir, 1991). Even a study about gender and

caring for a child with autism missed that caring for children with disabilities is highly

gendered work. Although Gray (2003) showed differences in the lives of mothers and

fathers with children who had high functioning autism, he did not fully investigate

what might have contributed to the differences. In comparing the experiences of

mothers and fathers, it was clear that fathers saw themselves as sources of support to

their wives, and their careers were not affected. Alternatively, mothers were direct

caregivers for their children with autism, experiencing more stress than fathers. These

women also reduced their paid work hours or quit their job altogether to care for their

children.

McDonnell (1998) investigated the issue of mothering a child with autism more

critically than Gary (2003). Her focus, however, was on the analysis of previous

literature that has shown the sociocultural view of motherhood and autism. Overall, no

empirical studies about mothering a child with autism have been conducted on

sociocultural ideologies of motherhood and disability in both South Korea and the

United States.

Rationale and Research Questions for the Present Studies

The review of literature suggests that there is no empirical study that focuses

on how women understand themselves and their children with autism highlighting
 19

how both gender and disability are sociocultural constructs that shape what it means to

be a mother with a child who has a disability. This is true for research conducted in

both the United States and in South Korea. Understanding the social construction of

gender and disability, though, is particularly important because mothering a child with

autism is closely related to the sociocultural contexts that perpetuate negative ideas

about individuals with disabilities and hold women responsible for the problems of

their children.

The main goal of this dissertation, therefore, is to expand the understanding of

mothering a child with autism. To achieve this goal, I paid attention to the meanings

women gave to their experiences in relation to sociocultural processes regarding

gender and disability in two distinct cultural contexts. The overarching research

question asks how sociocultural ideas about mothering and disability, particularly

autism, shape White American and South Korean mothers’ understanding of

themselves and their children with disabilities. For the first study, I examined (a) how

middle-class, White women who have children with autism understand themselves and

their mothering and (b) how their ideas are shaped via their social interactions with

relatives, friends, neighbors, and professionals. For the second study, I asked (a) how

dominant sociocultural systems related to mothering and disability shape South

Korean mothers’ understanding of themselves and their children with autism and (b)

how mothers conform to and resist these systems.

Method

A social constructionist theoretical framework along with symbolic

 20

interactionist, feminist, and disability theories provided guidance for this dissertation.

First, I discuss the theoretical perspectives that influenced the methodological

approach. Then, I describe the methodological approach, sampling method,

characteristics of participants, interview processes, and data analysis.

A social constructionist perspective allowed me to critically review what has

been understood as true (Burr, 2003). Rejecting a naturalistic interpretation of the

world, I emphasized that knowledge is constructed through subjective interpretations

of the world (Burr, 2003; Roy, 2001). A social constructionist approach also

recognizes that both researchers and participants actively engage in the construction of

knowledge through a reflective process (Allen, 2001; Fox & Murry, 2000). According

to McGraw, Zvonkovic, and Walker (2000), reflexivity is “a process whereby

researchers place themselves and their practices under scrutiny, acknowledging the

ethical dilemmas that permeate the research process and impinge on the creation of

knowledge (p.68).” This definition helped me to reflect on my position as a Korean

researcher who is married to a Korean American man in this dissertation. I also

considered how my position as a middle-class, childless woman would influence my

interviews with women and the analysis of the stories of women in the United States

and South Korea.

Considering the theoretical frameworks, relevant literature, and the research

questions, a qualitative research approach was appropriate for the studies in this

dissertation (Berg, 1998). Qualitative research is an inquiry process that provides a way

to understand the meanings individuals give to their experiences (Creswell, 2003;

 21

Denzin & Lincoln, 2000; Gilgun, 1992). A qualitative research design also allows the

researcher to emphasize that reality is constructed within specific social contexts

(Denzin & Lincoln, 2000).

To obtain rich information on the meanings mothers give to their experiences in

the United States and South Korea, I used a purposeful sampling method (Patton, 2002).

This sampling method allows researchers to gain insight into a phenomenon (Patton,

2002). Participants were selected on the basis of their potential for providing an in-

depth understanding of mothering a child with autism. Except for their nationality,

participants in the two studies shared similar characteristics: (a) having a child (age five

to nine years old) with a moderate level of autism, (b) being married to the biological

father of the child with autism, (c) having at least an Associate’s degree, (d) residing in

an urban area, and (e) being in a professional or managerial position or being in a

relationship with someone who is in a professional or managerial position. These

criteria were particularly relevant because maternal experiences vary depending on the

type and severity of a child’s disability (Gary, 1993, 1994) and they are influenced by

socioeconomic status, family structure, and geographic location (Collins, 1994).

Professionals who directly or indirectly work with families who have children

with autism assisted me by distributing the information about the study to mothers who

have children with moderate level of autism. Interested mothers provided their contact

information to the professionals or sent me a pre-stamped postcard indicating their

interest in participating. I then telephoned the women to screen them for their eligibility

described above. For the first study, local school districts and parent support groups
 22

assisted the recruitment process for White, Non-Hispanic women in the United States

who have children with autism. I selected only White mothers because race and

ethnicity influence maternal experiences (Collins, 1994). For the second study, the

Korea Institute for Special Education (KISE), special education schools, treatment

centers, and inclusive childcare centers assisted with the recruitment process.

Using a qualitative research approach, I conducted in-depth interviews with

participants in the United States and South Korea. For them to feel comfortable in

their natural settings, I asked mothers to choose their preferred place for interviews.

Interview questions were loosely structured, focusing on the ways mothers of children

with autism understand their experiences in relation to discourses on motherhood and

disability, more specifically autism. Each participant spent approximately two to two

and a half hours talking about her life. Participating mothers received a $10 gift

certificate as a symbol of my gratitude for their time and effort. After the interview,

mothers were asked to nominate other mothers who might be interested in the study.

All interviews were tape-recorded and transcribed verbatim. For the second study, all

interviews were translated into English.

In collaboration with co-authors, I identified patterns that inductively emerged

from the data. From these patterns, I developed distinct concepts and themes relevant

to the experiences of mothers within each sociocultural context. The data analysis

process was aided by the strategies of grounded theory such as memoing, drawing

diagrams, and clustering concepts (Charmaz, 2006). Using reflexivity (McGraw,

Zvonkovic, & Walker, 2000), I also paid attention to my position as a married,

 23

childless woman emigrated from South Korea during data collection and through the

writing phase. In the following sections, I present the two manuscripts examining the

meanings of mothering a child with autism: One regarding U.S. mothers and the other

South Korean mothers.

 24

STRIVING TO BE A BETTER MOTHER:

WOMEN WHO HAVE CHILDREN WITH AUTISM

Hyun-Kyung You

Lori A. McGraw

&

Katherine A. MacTavish

Oregon State University

Author Note:

Correspondence concerning this paper can be sent to the first author at the Department

of Human Development and Family Sciences, Oregon State University, 322 Milam

Hall, Corvallis, OR 97331-5102 ([email protected]).

This research was supported by a Thayer Raymond Research Fellowship, Oregon

State University, and by the Northwest Health Foundation, Portland, Oregon.

 25

Abstract

Guided by symbolic interactionism and feminism, we qualitatively examined (a) how

middle-class, White women who have children with autism understand themselves as

mothers and (b) how their ideas are shaped by social interactions with others. Through

in-depth interviews with 12 women who have children with autism, we found that

these mothers understand themselves to be empathic supporters, mediators, and

advocates for their children with autism. Their stories are shaped by selective attention

to those who support their self-image and a disregard of those who undermine it.

Implications for policy and practice are offered.

 26

Feminist scholars have argued for a more complex understanding of the nature

of motherhood by “focusing not just on the way women are oppressed as mothers, but

on the way they act to assert their own standards of mothering” (Glenn, 1994, p. 18).

This paper focuses on the ways that women who have children with autism are agentic

in their roles as mothers. Though we highlight women’s agency, we do so with an

understanding of the ways that women are oppressed by their care responsibility (Read,

2000; Traustadottir, 1991). Women are weighted down by motherhood because

sociocultural belief systems encourage women to think of themselves as naturally

suited for care work. Through this belief system, mothers are encouraged to place their

children’s needs before their own needs (Skinner & Weisner, 2007; Read, 2000;

Traustadottir, 1991). Having a child with a disability can be even more limiting to

mothers because of the special needs of their children (Leiter, Krauss, Anderson, &

Wells, 2004). In this sociocultural system, women learn to think of themselves as good

when they devote their lives to their children with disabilities (Nicholas, 1999; Skinner,

Bailey, Correa, & Rodriguez, 1999). Many of these women come to recognize their

care work as a way to gain social recognition and a sense of accomplishment (Read,

2000; Traustadottir, 1991).

In this paper, we aim to answer two main questions: (a) How do middle-class,

White women who have children with autism understand themselves as mothers and;

(b) How are their ideas shaped by social interactions with others? We begin our paper

by describing the literature on mothers who have children with disabilities. Then, we

detail our qualitative study and discuss implications for policy and practice.
 27

Literature Review

Researchers have focused extensively on cultural beliefs that surround

motherhood (Arendell, 2001). For a woman to be considered a “good mother,” she

must sacrifice her time and energy for her child (Hays, 1996; Thompson & Walker,

1989; Walzer, 2004). Beliefs about motherhood are intertwined with beliefs about

childhood (Badinter, 1981; Wishy, 1968). Middle-class children have been

conceptualized over time as individuals who are innocent and in need of protection

from the larger world (Coltrane, 2000). Middle-class women, then, are charged with

the responsibility of protecting their children. Middle-class children are also thought

of as a group who needs intensive education and support to develop their full potential

in adulthood. Mothers, in turn, are expected to intensively socialize their children and

cultivate their talents (Hays, 1996; Lareau, 2003). To nurture their children, mothers

must engage in activities that are “exclusive, wholly child centered, emotionally

involving, and time-consuming” (Arendell, 2001, p. 413).

The same sociocultural expectations applied to mothers in general are also

applied to mothers who have children with disabilities. These mothers are expected to

love their children regardless of their disabilities. They also are expected to provide

medically and educationally appropriate care for their children’s special needs. The

demands of this care often leave mothers feeling constrained by their responsibilities

(Nicholas, 1999; Read, 2000; Singer & Farkas, 1989; Traustadottir, 1991). They show

more depressive symptoms and they experience more stress than similarly situated

mothers with typically developing children (Bailey & Simeonsson, 1988; Beckman-
 28

Bell, 1981; Goldberg, Morris, Simmons, Fowler, & Levison, 1990).

In contrast, previous studies show that mothers with children with disabilities

experience a sense of fulfillment when they master the skills necessary to provide care

for their medically fragile children (Nicholas, 1999; Singer & Farkas, 1989). For

example, Latina mothers with children who have disabilities perceived their mothering

experiences as transformative of their lives (Skinner, Bailey, Correa, & Rodriguez,

1999). Mothers of children with disabilities develop positive self-images by becoming

allies with their children and by negotiating positive interpretations of their children

with professionals (Nelson, 2002; Read, 2000). Some mothers extend their care work

to advocate for the rights of all children with disabilities (Read, 2000; Traustadottir,

1991). In this way, mothers are agentic in their resistance to a larger social order that

stigmatize children with disabilities.

Women who have children with autism have experiences that are similar to

women who have children with other types of disabilities. Their experiences are

unique as well (Gray, 1993, 1994; Mauk, Reber, & Batshaw, 1997; O’Brien, 2007).

Mothers of children with autism often feel a sense of ambiguous loss because it is

difficult to diagnose children with autism, particularly when the child is very young

(O’Brien, 2007). Children with autism often look healthy and their developmental

delays vary (Bristol & Schopler, 1984; Mauk, Reber, & Batshaw, 1997). Consequently,

Bristol and Schopler (1984) argue that mothers of children with autism struggle to

accept their children’s diagnosis. The cause of autism is not fully understood. Mothers

must wade through a variety of contradictory information to determine what the best
 29

course of treatment is for their children. Sometimes, they doubt their decisions. For

example, some mothers believe that their children’s autism was caused by

immunizations they allowed their children to have (Newschaffer, Falb, & Gurney,

2005). Without a full explanation of the cause of autism (Newschaffer, Falb, & Gurney,

2005), mothers feel responsible for their children’s disabilities (Read, 2000).

These studies have broadened our knowledge of mothers who have children

with autism. Scarce attention has been paid, however, to the ways that these women

negotiate their identity as mothers via social interactions with others.

Theoretical Framework

To understand how middle-class, White women who have children with autism

understand themselves as mothers, we used feminist and symbolic interactionist

theoretical perspectives. Symbolic interactionism provides a framework to investigate

the creative process women use to develop a maternal identity (Erikson, 2003;

LaRossa & Reitzes, 1993). For example, research has shown that first-time mothers

begin to develop a maternal identity during their pregnancy. At this time, they imagine

the kind of mother that they will become (Miller, 2007). This identity is revised

through interactions with their actual child and with others in their social world

(Arendell, 2001; Glenn, 1994; Marshall, Godfrey, & Renfrew, 2007). The focus of this

study is on how women develop and modify their maternal role as they interact with

their child and close others (Blumer, 1969; LaRossa & Reitzes, 1993).

Method

Our study was part of a larger cross-cultural research project that examines
 30

discourse on gender and disability in South Korea and in the United States. The

present analysis focuses on the data collected from mothers in the United States. To

investigate how women understand mothering a child with autism, we interviewed 12

middle-class, White women. We focused on two main questions: (a) how do middle-

class women who have children with autism understand their mothering role? and (b)

how are their ideas shaped via social interaction with others? A qualitative research

approach offered the best way to examine the meaning-making processes of the

women in our sample (Creswell, 2003; Denzin & Lincoln, 2000).

Sampling

Using a purposeful sampling method (Patton, 2002), we intentionally pursued

a narrowly defined sample because women’s understandings of themselves are

intertwined with their social environment (Collins, 1994). Therefore, we limited our

sample by disability, socioeconomic status, family structure, geographic location, and

racial/ethnic background. First, we sought mothers who have young children with

autism. Because maternal experiences vary depending on the level of a child’s autism

(Gary, 1994), we focused on mothers of children with moderate communicative and

social dysfunctions. Additionally, we recruited mothers whose children had been

diagnosed with autism several years earlier. In this way, these mothers were not

adjusting to new information about their children’s disabilities. We limited our sample

to mothers whose children were between the ages of five and nine years old.

We asked special education professionals and parent support group leaders to

distribute a total of 90 research packets to potential participants in Oregon. A total of

 31

28 mothers responded to our request by sending a pre-stamped letter of interest back

to us. The first author then telephoned interested women to determine if additional

eligibility criteria were met: (a) Being a White American, (b) currently married to the

biological father of her child with autism, (c) residing in an urban setting, (d) having at

least an Associate’s Degree, and (e) having a professional or managerial position or

having a husband who is in a professional or managerial position. Our final sample

consisted of middle-class, married White mothers who reside in an urban setting and

who have a child with a moderate level of autism.

Participants

Twelve out of the fourteen women who showed interested in the study met the

additional criteria and agreed to participate in the study. Three mothers had Associate

Degrees, 8 mothers had Bachelors’ Degrees, and 1 mother had a Masters’ Degree.

Eight mothers were employed: 3 full-time, 3 self-employed, and 2 part-time. All of the

fathers were employed full-time except for one who recently quit working due to his

own disability. Household incomes were around or above the national median

household income of $48,451 (http://www.census.gov/). The women were ranged in

age from 30 to 51 years (M = 39), and their children were, on average, 7 years of age

in range of age 6 to 9 years. The children with autism in our study included more boys

(n = 11) than girls (n = 1).

Interviews

The first author conducted in-depth interviews with each mother. Interviews

were loosely structured (Patton, 2002). Each interview took place in a location of the
 32

mother’s choosing. Half of the women in our study preferred to be interviewed at their

homes and the others chose local coffee shops or restaurants. During the interviews,

mothers were encouraged to tell stories about their children with autism and

themselves. We began the interviews by asking mothers about the birth stories of their

children with autism and progressed to questions about their present lives. We also

asked them to discuss their ideas about motherhood in general and about mothering a

child with autism specifically. Some example questions are, “What does being a good

mother mean to you?” and “How has having a child with autism influenced your view

of what makes a good or bad mother?” We also asked “What do you think that your

relatives think makes a good mother to a child with a disability? How do these ideas

influence your view of your own mothering, if at all?” These questions served to

encourage the mothers to talk about their experiences with extended family members,

friends, neighbors, and professionals. Interviews lasted an average of two hours each.

Mothers received a $10 gift certificate as a gesture of our gratitude for their time and

effort in the study. All interviews were tape-recorded and transcribed verbatim. In

order to ensure confidentiality of participants and their children, pseudonyms have

been used in this paper.

Data Analysis Process

Our data analysis began with our choice of theory, with the questions we

constructed, and with the way we wrote about our findings (Denzin & Lincoln, 2000).

Using symbolic interactionist and feminist theoretical perspectives, we examined

middle-class, White women’s narratives to conceptualize how they understand

 33

themselves as mothers and how their ideas are shaped by social interactions with close

others. During the initial coding phase (Lofland & Lofland, 1995; Charmaz, 2006), we

identified codes such as acceptance, patience, and advocacy. We also paid attention to

supportive and unsupportive interactions the women had with family members, friends,

and professionals. We attended to how they described themselves interacting with

others in relation to their children with autism. During the focused coding phase, we

concentrated on concepts that appeared more frequently (Lofland & Lofland, 1995)

and we sought relationships among these codes. Finally, we developed primary themes

and patterns that are discussed below.

Themes

We found that middle-class mothers who have children with autism understand

themselves as empathic supporters, mediators, and advocates for their children with

autism. Their stories are shaped by selective attention to those who support their self-

image and a disregard of those who undermine it.

Empathic Supporter: “Patience Makes a Good Mother”

All 12 women in our study understood themselves as striving to be better

mothers to their children with autism. They stated that being a better mother began

with their acceptance of their children with disabilities. They shared the idea that

acceptance of their children was the primary determinant of whether they were to be

considered “good” or “bad” mothers. When asked what makes a good mother, Joanne

stressed “accepting [children] for who they are.” Debbie similarly explained: “I think a
 34

lot of it is accepting that your child is who he is.” Mary reflected on the process: “You

just have to work through it until you get to the point of acceptance.”

Although these mothers were careful not to be judgmental about other mothers,

they explained that when mothers denied their children’s diagnosis they were, in fact,

rejecting their children. According to them, women could be perceived as bad mothers

if they were unaware of the needs of their children and were unwillingly to seek

appropriate educational and medical treatments for their children. Joanne discussed

her idea of a bad mother: “I think someone who doesn’t recognize the special needs of

their child, or care about them, or is in denial.” Sheila stated her opinion: “I’ve seen

some pretty bad autism mothers. I would think not knowing the facts about what your

kid has. That’s what really pains me.” Debbie stated: “If you’re still in denial, I don’t

think you’ll be a good parent.”

Four of the mothers explained that receiving information that their child had

autism reassured them that they were not bad mothers. Instead of attributing their

children’s strange behavior to their own incapacity to raise children, they could

attribute the behaviors to a disability. For these women, the diagnosis provided a

sensible explanation for why their children were different. Prior to receiving a

diagnosis of autism, Erica said that she questioned her mothering ability: “I thought,

‘Maybe I’m an innately bad parent.’” Sheila noted: “I was really relieved because we

were being judged.” Michelle explained: “It was a weird thing for me to get closure.

He has autism. I was thinking ‘This is what I thought it was for a long time.’”
 35

In order to raise their children with autism well, half of the women in our study

explained that they needed extra patience to be a good mother. Joanne stated: “I often

wish I were a better mother. I need to be more patient.” Teresa agreed: “I wish I was a

little bit more patient.” Mindy said: “People have always told me I am very patient.”

She continued: “That’s been even more important now.” Jane discussed: “If I lose my

temper, it might have a bigger effect on my child with autism than if lost my patience

with another one.” Kerry stated: “Patience makes a good mother.”

To support their belief that they were accepting and patient mothers, women in

our sample attended to reassuring comments from others. Karen stated: “My relatives

have really validated my mothering.” Mindy described her extended family members’

comments: “My relatives say, ‘It’s great that you take him to music lessons. It’s great

that you take him to soccer.’” Erica stated that her relatives thought highly of her

patience: “All of my relatives have said, ‘Oh, thank God, you are her mother.’”

Debbie appreciated the support she received from her in-laws: “It gives me positive

reinforcement for the job that I am doing.”

Seven mothers focused on comments that highlighted the progress that their

children had made. According to these mothers, their extended family members

attributed their children’s success to them. Michelle remembered a compliment: “My

brother said, ‘I don’t think Tyler would be as good as he is if he didn’t have you for a

mother.’” Mindy talked about her extended family members, who only see her child

once or twice a year: “They see huge differences in him. So [they say], ‘Whatever
 36

you’re doing, keep it up.’” Jane felt good about herself when her relatives commented:

“’Wow, he is really doing good. You guys are doing a good job with him.’”

Eight women maintained positive self-images by attending to affirming

comments from professionals. The mothers believed that these comments motivated

them to try harder to be good mothers. Joanne stated: “My son’s teacher thinks I’m

doing a great job.” Michelle described her visit to a new doctor: “I was making [my

son] laugh and playing with him and playing with some toys with him. The doctor said,

‘You’re really good with him. You really understand him.’” Teresa talked about a

meeting she had with her child’s teachers: “They said, ‘See, that’s what makes a good

mom—someone who understands the needs of her child.’ So, those comments make

me feel good.”

Not everyone acknowledged the effort mothers make on behalf of their

children with autism. Ten of the mothers told of times when strangers criticized their

efforts. When they were criticized, a few mothers explained to these strangers that

their children had autism and that was why their behavior was different. Most women,

however, ignored the comments of strangers. Mary explained: “People tend to jump to

conclusions. ‘Look at them. They are letting their children get by with it.’” Her

response was to just “ignore it.” Jane’s response was similar: “Lots of people look at

me like ‘What’s that kid’s problem?’ which I just try to ignore.” Sheila agreed: “A few

years ago, [I] would’ve been compelled to explain it. Now, I just don’t.”

Mediator: “I Have Introduced Them to Autism”

 37

The women in our study described themselves as mediators. Through their

stories they relayed the idea that a mediator is someone who can act as a conduit

through which broader understanding and acceptance of children with autism can

occur. They explained that their role as a mediator was not easy because a lot of

misinformation about autism existed. Eleven women stated, for example, that some of

their extended family members initially did not understand how autism affected their

children. These relatives thought that the children would “grow out of” their behaviors.

When Michelle told her mother about her son’s autism, her mother responded: “Well,

he’ll grow out of this, won’t he?” Other relatives did not take the diagnosis of autism

seriously. Erica explained: “They kept saying, ‘Oh, no, she can’t possibly be autistic.’”

Sheila described her father-in-law’s attitude about her son’s behavior: “He’s a little

touched. It’s no big deal, why would he need all of this help?” Several mothers

mentioned that their relatives thought that their children were spoiled. For example,

Mary’s brother said: “Christopher is just a brat and that’s about it.”

The women indicated that they educated their relatives about their children

with autism, particularly to explain how autism varies in severity across children.

Erica confirmed to her relatives who were not so sure that her daughter has autism:

“She is definitely autistic. I am trusting teachers’ experiences. The doctors were like

‘She is definitely under the umbrella somewhere.’” Michelle offered this account to

her relatives: “He is like a typical boy. He’s just not comfortable with everybody.”

Kerry clarified to her father who believed that his grandson would grow out of autism:
 38

“He is not gonna grow out of it.” Teresa highlighted how she educated her parents and

her in-laws: “If we find an article on autism, we share it with them.”

Eight women in our study also discussed negative interactions with their

friends and neighbors who did not understand the special needs of children with

autism. These interactions required the mothers to clarify the symptoms of their

children’s disability. When a friend thought that autism was temporary condition, Jane

explained: “No, they don’t grow out of it. They learn their life skills so they can

progress, but he is gonna have it for the rest of his life.” Teresa acknowledged: “I have

introduced my friends to autism because they just didn’t know what it was.”

When friends and family members could not accept their children with autism,

mothers discontinued these ties. Sheila offered the following example: “We have

friends that are not friends anymore.” She further explained that her father-in-law

“rejected [her son] completely and only paid attention to her daughter.” She stated:

“He’s not invited back. We’ve had to give up some relatives. He’s not invited to our

house ever again.”

In contrast, mothers maintained ties with those who accepted their children

with autism. These accepting individuals often knew of someone else with a disability.

Karen, whose husband was recently diagnosed with Asperger’s syndrome, mentioned

that she has a special connection with her mother-in-law. She stated, “My mother-in-

law and I are very close. I usually call her first when something happens because she

raised a child with autism without knowing it. It’s a special relationship that she and I

have.” Teresa talked about her parents who adopted her sister with Down syndrome:
 39

“They understand autism and they understand what it is like raising a child with a

disability.” According to Debbie “All of my friends were accepting.” Joanne said:

“Friends of mine are like ‘Oh! It’s not a big deal.’” Sheila appreciated having

neighbors who accepted her son: “The people across the street babysit a little girl with

William’s Syndrome. They totally get it.”

Advocate: “Going Outside of Your Comfort Zone”

Some of the women in our sample extended their mothering role to include

advocacy for their own as well as other children with autism. Seven mothers discussed,

for example, how they learned to voice their concerns to medical professionals. They

explained that when they drew their pediatrician’s attention to their children’s slow

language acquisition, they were ignored. Their pediatricians responded by saying,

“let’s wait and see.” These physicians put off making referrals to professionals who

could better understand their children’s developmental delays. Karen recalled asking

for an evaluation of her son’s hearing. Instead of arranging for the hearing test, the

pediatrician told her: “He won’t like [getting tested].” When Joanne discussed her

son’s hand twisting and flapping behaviors, the pediatrician stated: “Oh, he’s just

excited.” Cory had a similar experience. When she took her two-year-old son to the

doctor because he was not speaking, the doctor said: “I think he is a thinker. I can tell

he is really thinking.” Jane, talked about how her son’s pediatrician discredited her

childrearing ability:

The doctor said to me, ‘Just read him more books and come back when he’s
three.’ I thought, ‘Is she, stupid?’ I told her the problem. I’m a teacher. I know
how I’m supposed to be reading a book to my child.
 40

Instead of acquiescing to the opinion of their pediatricians, these mothers

sought a second opinion. They wanted a better explanation of their children’s

behaviors and they wanted validation of their concerns. Karen talked about her

decision to find a different pediatrician for her son: “I changed doctors because that’s

not the right answer for me.” Michelle explained: “I took him to an occupational

therapist and a speech guy to have him evaluated.” Another mother, Jane, stated that

she “went to a different doctor,” and he said, “Okay, we’ll do a referral to early

intervention.”

One mother confronted teachers in her child’s school district about

inappropriate treatment she believed her son was receiving. Karen explained that she

demanded that her son be released from a locked three-by-five cell called the quiet

room. Her son spent two to five hours a day in this room. She said: “When I saw

where my son was spending a large part of his day, I felt like he was being mentally

tortured.” The teachers believed that the quiet room was their best behavior

management option. Karen made it clear, however, that the treatment that her son

received was inhumane.

According to five mothers, their identity expanded to include advocacy for the

larger group of children with autism. These mothers explained that they worked to

educate the larger community about children with autism. Two of these women were

leaders of local support groups for families who have children with disabilities. Karen

believed that an essential characteristic of a good mother is someone who is willing

“to go outside her comfort zone to advocate for her child” and is “ready to go to battle.”
 41

Kerry said that activist mothers are good mothers because they “fight for the rights of

their children. They are the squeaky wheels.” Erica agreed: “I want to become an

advocate and help more people understand what [autism] is.” Michelle stated: “Now,

anywhere I go, I tell people ‘My son has autism.’ It was a matter of pride.”

Six mothers pointed out that their ties to other mothers who have children with

autism helped them to be more vocal about their children’s needs. Four of them were

closely connected to support groups for parents who have children with disabilities.

Jane explained the benefits of the group: “It’s nice to know other moms going through

the same thing you are. I think that’s the greatest thing you can have. Then you don’t

feel all alone.” Karen explained: “I could say almost all of my friends are other

mothers with children with autism. It’s a community that I built.” Through the support

they received in the group, Jane and Karen learned new ways to interact with others in

public. Jane stated: “If someone ever says anything to me, I can hand them a card that

tells them about autism.” Karen agreed: “Now I have little cards that I hand them.”

Michelle summarized her relationships with other mothers who have children with

autism in this way: “I think we always cheerlead for each other.”

Discussion

The stories these mothers shared illustrate how mothers who have children

with autism may think about themselves. They highlighted that they are empathic

supporters, mediators, and advocates for their children with autism. Their images of

themselves were constructed through their daily interactions with others. As empathic

supporters, they indicated that they worked to accept their children and they tried hard
 42

to be patient with their unique characteristics. To support their belief that they were

accepting and patient mothers, women in our sample attended to reassuring comments

from family members, friends, and professionals. For those individuals that were

unsupportive of their identities as competent mothers, the women explained that they

ignored the comments of these individuals. The mothers told stories that indicate that

they served as a mediator between their children and those around them as well. As a

mediator, they educated others about their children with autism. During the mediation

process, mothers were selective about who they allowed into their lives. When friends

and family members could not accept their children with autism, mothers discontinued

their ties with these individuals. Advocating for their children with autism was an

important aspect of these mothers’ identities too. Some mothers depended on formal

support groups to bolster their advocacy work.

Our findings are similar to other studies that highlight the challenges that

mothers have raising children with autism. The literature suggests, for example, that

mothers have a difficult time accepting the diagnosis of their children with autism

(Gary, 1993; O’Brien, 2007) and they sometimes serve as advocates for children with

disabilities (Read, 2000; Traustadottir, 1991). Our study enhances the empirical base

of information on children with autism by focusing on the selective social processes

that women engage in to make sense of their maternal self.

Because our sample consists of a small number of women who share

similarities in that they are White, middle-class and live in an urban setting,

generalizing our findings to all mothers who have children with autism in the United
 43

States would not be appropriate. However, our study provides a first step toward

understanding how women are agentic in their roles as mothers to children with autism

and how they can be better supported by family life educators. Our findings support,

for instance, the further implementation of a policy proposed by the American

Academy of Pediatrics (http://www.aap.org/publiced/autismtoolkit.cfm). The

American Academy of Pediatrics recognizes the importance of early identification of

autism in young children. A recent survey, however, has shown that only 8% of

pediatricians routinely screen for autism in their young patients (Johnson & Meyers,

2007). This number is alarming given the rise in the rate of autism in the United States

(Mauk, Reber, & Batshaw, 1997). Training that incorporates the importance of

listening to mothers’ concerns would be one way that family professionals could

contribute to this conversation.

 44

References

Arendell, T. (2001). Conceiving and investigating motherhood: The decade's

scholarship. In R. M. Milardo (Ed.), Understanding families into the new
millennium: A decade in review (pp. 411-426). Lawrence, KS: National
Council on Family Relations.

Badinter, E. (1981). Mother love: Myth and reality. New York: Macmillan.

Bailey, D. B., & Simeonsson, R. J. (1988). Assessing needs of families with

handicapped infants. Journal of Special Education, 22, 117-127.

Beckman-Bell, P. (1981). Child-related stress in families of handicapped children.

Topics in Early Childhood Special Education, 1(3), 45 –53.

Blumer, H. (1969). Symbolic interactionism: Perspective and method. Englewood

Cliffs, NJ: Prentice-Hall.

Bristol, M. M., & Schopler, E. (1984). A developmental perspective on stress and

coping in families of autistic children. In J. Blacher (Ed.), Severely
handicapped young children and their families: Research in review (pp. 91-
141). Orlando, FL: Academic Press.

Charmaz, K. (2006). Constructing grounded theory: A practical guide through

qualitative analysis. Thousand Oaks, CA: Sage.

Coltrane, S. (2000). Research on household labor: Modeling and measuring the social
embeddedness of routine family work. Journal of Marriage and the Family, 62,
1208-1233.

Collins, P. H. (1994). Shifting the center: Race, class, and feminist theorizing about
motherhood. In E. N. Glenn, G. Chang, & L. R. Forcey (Eds.), Mothering:
Ideology, experience and agency (pp. 45-65). New York: Routledge.

Creswell, J. (2003). Research design (2nd ed.). Thousand Oaks, CA: Sage.

Denzin, N. K., & Lincoln, Y. S. (2000). Introduction: The discipline and practice of
qualitative research. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of
qualitative research (2nd ed., pp. 1-28). Thousand Oaks, CA: Sage.

Erickson, R. J. (2003). The familiar institution. In L. T. Reynolds & N. J. Herman-

Kinney (Eds.), Handbook of symbolic interactionism (pp. 511-538). New York:
Altamira.
 45

Glenn, E. N. (1994). Social constructions of mothering: A thematic overview. In E. N.

Glenn, G. Chang, & L. R. Forcey (Eds.), Mothering: Ideology, experience and
agency (pp. 1-29). New York: Routledge.

Goldberg, S., Morris, P., Simmons, R. J., & Fowler, R. S. (1990). Chronic illness in
infancy and parenting stress: A comparison of three groups of parents. Journal
of Pediatric Psychology, 15, 347-358.

Gray, D. E. (1993). Perception of stigma: The parents of autistic children. Sociology of

Health and Illness, 15, 102-120.

Gray, D. E. (1994). Coping with autism: Stress and strategies. Sociology of Health and
Illness, 16, 275-300.

Hays, S. (1996). The cultural contradictions of motherhood. New Haven: CT: Yale
University Press.

Johnson, C. P., & Myers, S. M. (2007). Identification and evaluation of children with
autism spectrum disorders. Pediatrics, 120, 1183-1215.

Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217-

250.

Lareau, A. (2003). Unequal childhoods: class, race, and family life. Berkeley:
University of California Press.

LaRossa, R., & Reitzes, D. C. (1993). Symbolic interactionism and family studies. In
P. G. Boss, W. J. Doherty, R. LaRossa, W. R. Schumm, & S. K. Steinmetz
(Eds.), Sourcebook of family theories and methods: A contextual approach (pp.
135-163). New York: Plenum Press.

Leiter, V., Krauss, M. W., Anderson, B., & Wells, N. (2004). The consequences of
caring: Effects of mothering a child with special needs. Journal of Family
Issues, 25, 379-403.

Lofland, J., & Lofland, L. H. (1995). Analyzing social settings: A guide to qualitative
observation and analysis (3rd ed.). Belmont, CA: Wadsworth.

Marshall, J. L., Godfrey, M., & Renfrew, M. J. (2007). Being a ‘good mother’:
Managing breastfeeding and merging identities. Social Science & Medicine, 65,
2147-2159.

Mauk, J. E., Reber, M., & Batshaw, M. L. (1997). Autism: And other pervasive
developmental disorders. In M. L. Batshaw (Ed.), Children with disabilities
 46

(4th ed., pp. 425-447). Baltimore, MD: Paul H. Brookes.

Miller, T. (2007). “Is this what motherhood is all about?” Weaving experiences and
discourse through transition to first-time motherhood. Gender & Society, 21,
337-358.

Newschaffer, C. J., Falb, M. D., & Gurney, J. G. (2005). National autism prevalence
trends from United States special education data. Pediatrics, 115, 277-282.

Nicholas, D. B. (1999). Meaning of maternal caregiving: Children with end stage renal
disease. Qualitative Health Research, 9, 468-478.

O’Brien, M. (2007). Ambiguous loss in families of children with autism spectrum

disorders. Family Relations, 56, 135-146.

Patton, M. Q. (2002). Qualitative evaluation and research method (3rd ed.). Thousand
Oaks, CA: Sage.

Read, J. (2000). Disability, the family, and society: Listening to mothers. Buckingham,
UK: Open University Press.

Singer, L., & Farkas, K. J. (1989). The impact of infant disability on maternal
perception of stress. Family Relations, 38, 444-449.

Skinner, D., Bailey, D. B., Correa, V., & Rodriquez, P. (1999). Narrating self and
disability: Latino mothers’ construction of identities vis-à-vis their child with
special needs. Exceptional Children, 65, 481-495.

Skinner, D., & Weisner, T. (2007). Sociocultural studies of families of children with
intellectual disabilities. Mental Retardation and Developmental Disabilities
Research Reviews, 13, 302-312.

Thompson, L., & Walker, A. J. (1995). The place of feminism in family studies.
Journal of Marriage and the Family, 57, 847-865.

Traustadottir, R. (1991). Mothers who care: Gender, disability, and family life.
Journal of Family Issues, 12, 211-228.

Walzer, S. (2004). Encountering oppositions: A review of scholarship about

motherhood. In M. Coleman & L. H. Ganong (Eds.), Handbook of
contemporary families: Considering the past, contemplating the future (pp.
209-223). Thousand Oaks, CA: Sage.
 47

Wishy, B. (1968). The child and the republic: The dawn of modern American child
nurture. Philadelphia: University of Pennsylvania Press.
 48

THE INTERSECTION OF MOTHERHOOD AND DISABILITY:

BEING A “GOOD” KOREAN MOTHER TO AN “IMPERFECT” CHILD

Hyun-Kyung You

Lori A. McGraw

Oregon State University

Author Note:

Correspondence concerning this paper can be sent to the first author at the Department of

Human Development and Family Sciences, Oregon State University, 322 Milam Hall,

Corvallis, OR 97331-5102 ([email protected]).

This research was supported by a Thayer Raymond Research Fellowship, Oregon State

University and by the Northwest Health Foundation, Portland, Oregon.

Submitted to Exceptional Children in May, 2009.

 49

Abstract

Integrating feminist and disability theories within a social constructionist framework, we

asked (a) how dominant sociocultural systems related to mothering and disability shape

South Korean mothers’ understanding of themselves and their children with autism and

(b) how mothers conform to and resist these systems. To answer these questions, we

conducted in-depth interviews with 14 middle-class, South Korean mothers with children

who have autism. We found that these mothers resisted stigmatizing attitudes toward

themselves and their children and reconstructed the meaning of “normal” childhood by

relying on a network of similarly situated mothers. They described themselves as “good”

by adhering to Confucian family values that encourage women to sacrifice themselves to

focus on their children’s success. From these findings, we offer implications for practice.
 50

Since Sociologist Ann Oakley rejected the belief “that all women need to be

mothers, that all mothers need their children, and that all children need their mothers”

(1970, p.186), scholars have become increasingly aware of motherhood as a socially

constructed rather than a biologically determined phenomenon (Glenn, 1994).

Researchers also have shifted their view of disability away from a medical model toward

a perspective that highlights the social processes that shape the experiences of individuals

with disabilities (Whyte & Ingstad, 1995). How gender and disability are experienced,

these researchers argue, is shaped by symbolic and material practices that evolve over

time within particular historical and political contexts (Skinner & Weisner, 2007; Smith,

2003).

In this paper, we examine sociocultural beliefs about motherhood and disability in

South Korea. We aim to answer two main questions: (a) How do sociocultural systems

related to mothering and disability, particularly autism spectrum disorders, shape South

Korean mothers’ understanding of themselves and their children with disabilities; and (b)

How do these mothers resist and/or conform to dominant discourse about being a “good”

mother and a “normal” child? We begin our paper by describing the sociocultural

contexts within which South Korean mothers and their children with disabilities live.

Then, we provide a summary of empirical evidence related to mothering a child with

disabilities. Finally, we detail our qualitative study and provide evidence for how South

Korean mothers understand themselves and their children with autism within this milieu.

Gender and Disability in South Korea

 51

The lives of South Korean women have long been influenced by the Confucian

way of understanding social ties. Through Samkang-Oryun, or the Three Bonds and Five

Relationships, Confucianism provides Koreans with a framework that structures

relationships between men and women and between families and the larger society (Lee,

1998; Tu, 1998). To encourage social stability and discourage change, the idea of

Samkang, or the Three Bonds, emphasizes dominance of the king over the minister, the

father over the son, and the husband over the wife. Those in a subservient position are

encouraged to be obedient to those in a dominant position. Oryun, or Five Relationships,

also provides guidance on appropriate social interactions. In husband-wife relationships,

for example, a clear division of labor is considered ideal because Confucian thought

argues that separate spheres for men and women will promote family stability. Finally, to

encourage family harmony, the idea of Samjongjido, or the Three Principles, guides

women’s lives (Cho, 1998). These principles dictate that a woman must follow three men

over the course of her life: Early in her life she follows her father, in adulthood she

follows her husband, and in later life she follows her eldest son. Though Confucian

influence has faded somewhat with modernity, these beliefs continue to influence the

lives of Korean women (Cho, 1998; Yang & Rosenblatt, 2008).

Confucianism influences South Korean women’s daily lives in that mothers but

not fathers are expected to sacrifice their lives for their children (Cho, 1998; Kim & Ryu,

1996). Korean women are not evaluated by their own professional accomplishments, but

by their children’s achievements (Kim & Ryu, 1996). Thus, Korean mothers carefully

manage the academic success of their children to ensure their own and their children’s
 52

social status (Cho, 1998). In an effort to promote their children’s academic success, South

Korean mothers commonly hire tutors and enroll their children in educational after-

school programs (Hur & Yoon, 1998). When a mother raises a successful child, she

achieves social respect, status, and power. The social status of women is closely related

to their role as mothers, regardless of their engagement in paid employment (Lee & Keith,

1999).

Confucianism also shapes the lives of present-day persons with disabilities in

South Korea. Individuals with disabilities have been stigmatized in Korea partly because

they are viewed as people who threaten reciprocal family ties. Confucianism requires

younger generations to give respect to and provide care for older generations (Lee, 1998).

Koreans believe that having a disability inhibits an individual’s ability to care for aging

parents. Having a disability also can limit individual ability to pay respect to ancestors

via the practice of jesah or the memorialization of ancestors via gravesite ceremonies.

Related to the practice of jesah is the idea that disabilities occur in the present generation

because past generations have chosen inappropriate grave locations for family members

or have not taken proper care of their ancestors’ graves (Kim & Kang, 2003).

Individuals with disabilities also are less valued in Korean Society because they

bring shame to their families by not conforming to societal ideals of success and by

threatening the homogeneity of society (Kim & Kang, 2003; Lee, 1998; Yang &

Rosenblatt, 2001). Historically, South Korean individuals with disabilities have been

dehumanized with words such as byungshin or dungshin, roughly translated as crippled

or retarded. Today, because of work done by disability activists, terms such as jangaein
 53

or individuals with disabilities and jangaewoo or friends with disabilities are used. These

newer terms place emphasis on the personhood of individuals with disabilities rather than

on their disabilities. Still, disability is considered a shameful experience for individuals

and their families in South Korea (Kim & Kang, 2003).

Though disability continues to be conceptualized as a shameful experience (Kim,

2002; Lee, 1998), recent social movements have improved the lives of individuals with

disabilities (Kwon, 2005; Park, 2002). The latest data from the Korean Ministry of Health

and Welfare (http://www.mohw.go.kr/user.tdf) indicates that over 1.6 million individuals

with disabilities have registered for educational and financial services that were not

available even as late as the 1970s. Through the 1977 Special Education Promotion Act

(SEPA), children and individuals with disabilities became eligible to receive a free and

appropriate education (Kwon, 2005; Park, 2002). Since this legislation was enacted, the

number of special schools for school-aged children with disabilities has increased. Over

53,000 children with disabilities currently are educated in a variety of settings in South

Korea (Park, 2002). Additional therapeutic treatments are provided to children of all ages

at no cost to parents. Parents must register their children with the Korean Ministry of

Health and Welfare to receive these services. Parents who can afford to do so often

pursue and pay for private services, believing that these services are of higher quality

than services offered by the government (Jung, 2007). Clearly, both continuity and

change characterize the lives of individuals with disabilities living in South Korean.

In this section, we have illustrated how complex gender and disability systems

have evolved to produce a unique cultural context within which South Korean mothers
 54

and their children with autism live. Next, we provide an overview of the literature on

mothering a child with a disability, both in the United States and in Korea, to lay a

rationale for our study.

Mothering a Child With a Disability

Mothering a child with a disability can be both rewarding and challenging

(Marcenko & Meyers, 1991; Read, 2000; Traustadottir, 1991). Beckman-Bell (1981), for

example, found that mothering a child with a disability is more stressful than mothering a

child without a disability. Mothers who have children with special needs can feel

overwhelmed by their responsibilities (Read, 2000; Traustadottir, 1991). For example,

mothers caring for children with end stage renal disease feel trapped by their extensive

and ongoing caregiving duties, and they believe that these duties limit their autonomy and

independence (Nicholas, 1999).

Caring for a child with a disability can be gratifying as well. For example, some

mothers of children with disabilities experience a sense of satisfaction and pride when

they master medical techniques necessary to maintain their children’s health (Nicholas,

1999). Mothers who have children with disabilities sometimes experience a broadening

of their identities because of a newfound sense of responsibility for others (Nelson, 2002;

Skinner, Bailey, Correa, & Rodriguez, 1999). This larger sense of responsibility can

translate into advocacy for children with disabilities (Traustadottir, 1991).

Mothers who have children with disabilities share common experiences, but they

also experience mothering within a unique disability context (Gray, 1993, 1994; O’Brien,

2007). Because of the ambiguous nature of autism, mothers of these children experience
 55

substantial levels of stress (Bristol & Schopler, 1984). For example, the causes of autism

have not been fully explained, despite its increasing prevalence (Newschaffer, Falb, &

Gurney, 2005). Mothers of children with autism often do not know why their seemingly

healthy children begin to show signs of developmental delay. Children with autism also

vary widely in their intellectual, educational, social, and communication capacities

(American Psychiatric Association, 1994; Mauk, Reber, & Batshaw, 1997). The question,

“Does my child have autism?” is often difficult to answer. Finally, unlike other

developmental disabilities, the physical appearance of children with autism usually does

not differ from that of those without disabilities (Mauk, Reber, & Batshaw, 1997).

Mothers of children with autism sometimes encounter strangers who blame them for their

children’s misbehavior rather than attribute the behavior to the child’s disability

(McDonnell, 1998).

In addition to managing a unique disability context, mothers manage their

children within a particular cultural context. South Korean mothers who have children

with disabilities socialize their children intensively to conform to Korean ideals of

success (Cho, Singer, & Brenner, 2003). Academic achievement is emphasized for

children with disabilities in the same way that it is emphasized for children without

disabilities (Park, Kim, Kim, Lee, Wu, & Jung, 2004). Researchers also have shown that

Korean mothers who have children with disabilities struggle because of the discrepancy

between their beliefs about how children should behave and the limited success they have

changing their own child’s behavior (Kim & Kang, 2003). In Korean society, these
 56

mothers face extensive criticism from strangers for not teaching their children to behave

appropriately in public (Lee, S. 2002; Lee, H. W., 1994; Lee & Jun, 2004).

Empirical evidence suggests, then, that mothering a child with autism occurs

within particular disability and cultural contexts. Most researchers studying mothers with

children who have autism, however, ignore or downplay the influence of sociocultural

systems that constitute women’s understandings of themselves and their children’s

disability. Instead, researchers tend to focus narrowly on how mothers cope with the

stressful experience of having a child with a disability. This is true for research that takes

place in the United States (e.g., Nelson, 2002; Nicholas, 1999) and in South Korea (e.g.,

Cho, Singer, & Brenner, 2003; Park, Kim, Kim, Lee, Wu, & Jung, 2004). Our aim is to

broaden our understanding of mothering a child with autism by focusing on the interplay

between sociocultural belief systems related to being a “good” mother and a “normal”

child and the ways that mothers conform to and resist these systems.

Theoretical Framework

To understand the dialectic interaction between sociocultural systems or discourse

and agency, we integrate several unique but related theories. A social constructionist

perspective provides the overarching epistemological framework for the study (Burr,

2003; Schwandt, 2000). The origins of this perspective can be traced to symbolic

interactionism in that it emphasizes the connection between language and social

interaction (Gubrium & Holstein, 2000; LaRossa & Reitzes, 1993). Schwandt (2000)

argues, however, that social constructionism is unique because the theory highlights how

individuals play an active role in the process of creating meaning. Social constructionists
 57

also attend to discourses that are made up of both cultural and material practices that

shape individuals’ understandings of themselves and their relationships (Burr, 2003;

Schwandt, 2000; Smith, 2003). For example, both Confucianism and Korean women’s

responsibility for unpaid care shape mother’s understandings of themselves and their

children with disabilities.

We used feminist and disability rights theories to pay particular attention to the

ways women’s everyday lives were shaped by systems of power related to gender and

disability. By focusing on previously ignored aspects of female life, critical feminist

theorists work to correct "both the invisibility and distortion of female experience in ways

relevant to ending women's unequal social position" (Lather, 1991, p. 71). In essence,

feminists attempt to explain women’s historical oppression by accounting for political,

economic, cultural, and psychological forces that support it. Caring for young children is

undervalued work in South Korea (Oh & Kim, 1996) and it is work that is almost entirely

the responsibility of women (Cho, 1998; Yang & Rosenblatt, 2008). Still, some evidence

suggests that South Korean women are beginning to resist traditional values that require

them to sacrifice their own lives to raise children (Duncan, 2002; Hyun, 2001). We

sought evidence of both conformity and resistance to the dominant gender system in

Korea via stories mothers told about their lives with children with autism.

Disability theory added to our thought by providing a way to critique dominant

sociocultural narratives that devalue children with autism in Korea. Disability theorists

argue that the inferior social status given to individual with disabilities does not result

from bodily defects, but rather to “myths, fears, and misunderstandings that society
 58

attaches to them” (Murphy, 1995, p.140). Goffman (1963) posited that individuals with

disabilities experience stigma, a social process that dishonors and shames them. He also

argued that family members and friends can experience stigma via their close ties with

those who have disabilities. In this study, we analyzed mothers’ stories for evidence of

shame and pride related to their children with autism.

Method

To understand how mothers conform to and resist dominant sociocultural

discourses related to gender and disability, we conducted in-depth interviews with 14

women. This method provided a way to investigate how women understand their

everyday experiences (Creswell, 2003; Gilgun, 1992) and it allowed us to highlight how

reality is constructed via sociocultural processes (Denzin & Lincoln, 2000). Our method

is also rooted in phenomenology in that we assume people actively construct their worlds

and themselves through the creation of symbolic and representational stories or narratives

(Bruner, 1986; White & Epston, 1990).

Sampling

Because we were interested in dominant beliefs about gender and disability in South

Korea, we used a purposeful sampling method called theory-based sampling (Patton,

2002). In this method, participants are selected on the basis of their potential

representation of important theoretical constructs. We sought to select mothers of

children with moderate levels of dysfunction because maternal experiences vary

depending on the level of a child’s autism (Gary, 1993, 1994). We also chose to limit the

range of disability because we hypothesized that the level of stigma a mother experiences
 59

is associated with the level of her child’s disability. Because mothers typically learn of

their child’s diagnosis by the time their child reaches the age of three (Mauk, Reber, &

Batshaw, 1997), we sought mothers whose children were slightly older. We did so to

ensure that we recruited mothers who had moved beyond the initial stages of adjustment

to their children’s disability. With these criteria in mind, we asked professionals working

with children with autism in public schools, childcare settings, and private agencies to

distribute packets to mothers whose children had a diagnosis of autism and a moderate

level of communication dysfunction. We also focused on children who were between five

and nine years of age. Professionals circulated 60 packets on our behalf. Mothers who

were interested in learning more about the study were asked to notify either the

professional who distributed the packet or to send a pre-stamped letter of interest back to

the first author. A total of 19 women responded to our request.

We intentionally narrowed the social context in which participating mothers live

because socioeconomic class and geographical location shape the ways that women make

sense of themselves and their children (e.g., Lareau, 2003). We purposefully selected

middle-class mothers living in urban areas for the study. The first author telephoned

interested women to determine their eligibility for participation. Eligibility criteria

required mothers to (a) reside in an urban area, (b) be married to the biological father of

the child with autism, (c) have at least an associate’s degree, and (d) be in a professional

or managerial position or be in a relationship with someone who is in a professional or

managerial position.

Participants
 60

Fourteen South Korean mothers were eligible for participation. All of the mothers

were married and had obtained at least an Associate’s degree. Two of the mothers were

employed, one full-time and one part-time. All of the fathers were employed full-time in

professional or managerial positions. The mothers’ household incomes were around or

above the South Korean median household income of 2.7 million won

(http://kosis.nso.go.kr/). On average, these women were 37 years old (ranging from 32 to

43 years). Their children with autism were, on average, seven years old (ranging from 5 to

9 years); nine of the children were boys and five were girls. To ensure confidentiality of

participants and their children, pseudonyms are used.

Interview & Translation

The first author conducted in-depth interviews with participants in their own

homes or in locations the women chose. Consistent with feminist methodology, this

approach served to minimize the hierarchical relationship between the researcher and the

researched (Fontana & Frey, 2000; Smith, 2000). Each participant spent an average of

two and a half hours talking about her life. Interviews were conducted in Korean and

resulted in a total of 34 hours and 25 minutes of discussion.

Congruent with our interest in understanding how women view their lives, we

asked mothers to tell stories of their child’s birth and diagnosis. We asked questions such

as: (a) Who first noticed something was different about your child, and (b) How was the

diagnosis of your child made? Mothers also had freedom to discuss issues that were of

concern to them. For example, they described what their lives were like with a young

child with autism. The second part of the interview asked mothers to explain how they
 61

and others understand what it means to be a good mother and what it means to be a child

with autism. We asked questions such as: (a) What do you think makes a good mother,

and (b) What do most people think about children with autism spectrum disorders?

Mothers received a 10,000 won ($10) gift certificate as a symbol of our gratitude for their

time and effort.

All interviews were tape-recorded, transcribed verbatim, and translated into

English by the first author. Next, both authors read and discussed each translated

transcript to ensure that the first author, a Korean American who was born and raised in

South Korea, and the second author, a European American, understood the meaning

participants were conveying in their interviews. Also, because English is the first author’s

second language, the second author reviewed and edited the transcripts to ensure that they

accurately reflected the mothers’ stories in English. This editing process was done in

cooperation with the first author.

Data Analysis

Using social constructionist, critical feminist, and disability theories, we analyzed

South Korean mothers’ understandings of themselves and their children with autism in

relation to sociocultural ideas of what it means to be a “good” mother and a “normal”

person. Answers to the following research questions were sought: (a) How do

sociocultural systems related to mothering and disability, particularly autism spectrum

disorders, shape South Korean mothers’ understanding of themselves and their children

with disabilities; and (b) How do these mothers resist and/or conform to dominant

discourse about being a “good” mother and a “normal” child?

 62

In the initial phase of our analysis, individually and together, we read each

transcript to identify and label significant concepts related to gender and disability

(Charmaz, 2006). To enhance our theoretical sensitivity (Strauss & Corbin, 1990) we

asked: (a) How do the participants define good motherhood, and (b) In what ways do

their stories argue against this definition? We also asked: (a) How do they think and feel

about their children with autism, and (b) How do their stories deviate from dominant

ideas of success in South Korea? From these questions, we determined initial theoretical

concepts. Examples of these concepts are managing sympathy and pity, accepting blame,

and raising a successful child with autism.

During the focused coding phase of our analysis, we paid special attention to how

definitions of normality and abnormality in both gender and disability relations served to

establish boundaries of acceptable beliefs for the women in our study. In turn, evidence

of resistance to sociocultural boundaries was sought (Gavey, 1989). Each woman’s story

also was compared and contrasted to the other stories to determine similarities and

differences among the women. Through this process, we used the technique of negative

case analysis to verify our main themes and to elaborate variation within themes (Strauss

& Corbin, 1990).

Themes

South Korean mothers understood themselves and their children with autism

within a sociocultural context that requires mothers to provide high levels of nurturance

and support to their children and conceives of disability as a shameful experience for both

individuals with disabilities and their family members (Kim & Kang, 2003; Lee, 1998).
 63

Within this context, women struggled to transcend the shame they experienced. Even

though strangers and family members blamed them for their children’s disability, these

mothers told of ways that they had begun to redefine what “normal” means for children

with autism in Korean society. These same mothers, however, did not challenge the

meaning of “good” motherhood. All of the women believed that their success was tied to

their children’s success, and their stories highlighted their efforts to help their children

with autism succeed. A few of the mothers argued that they were justifiably limited in

their success because of their children’s limitations. Mainly, though, the women accepted

their mothering responsibilities.

Resisting Shame: “I Don’t Pay Attention to How Others Look at Me”

All 14 mothers in our study were aware of negative attitudes strangers held

toward their children with autism. Although South Koreans increasingly are aware of

individuals with autism, they explained that prejudice still exists. Ten mothers stated that

most people think their children are “dumb, slow, or poor.” Mothers told of how they

regularly see strangers give their children with autism “a look,” indicating that the

children are inferior to others. Kyung-Sook, 36, felt that others looked at her son as if he

were an “animal in the zoo.” Sun-Hee, 38, explained that because her child’s size does

not match his maturity level, people “tend to think that he’s an idiot.” Jung-Min, 35,

believed that “There are people who still think that children with autism should stay

home.”

Four mothers believed that people fear children with autism. According to Mi-

Ran, 35, some people are frightened because of worry about potentially aggressive
 64

behaviors. She explained: “Most people have a difficult time getting close to [children

with autism] because of their problematic behaviors.” Sun-Hee, 38, agreed: “Other

mothers might worry that our children will harm their children.” All of the mothers in our

sample had empathy for the concerns of strangers. Ji-Woo, 37, summarized it this way,

“You don’t know about [autism] until you spend a lot of time with [someone who has

autism].”

Though the mothers had empathy for the concerns of others, they also

experienced tension during encounters with strangers. Eleven mothers noted that public

outings were problematic because of the discrepancy between their children’s appearance

and their children’s behavior. Strangers did not automatically understand that their

children were behaving inappropriately because of a disability. This discrepancy brought

about a situation in which the mothers had to decide whether to share their child’s

diagnosis or maintain their own and their child’s privacy. Sun-Hee, 38, found these

repeated interactions tiring: “If he misbehaves in front of others who don’t know about

him, I don’t want to have to explain to them over and over that ‘My child has a

developmental disability.’” Jung-Min, 35, eventually decided to ignore how others

looked at her daughter and herself. She stated, “It used to bother me. These days, I don’t

pay attention to how others look at me. I don’t care.”

Two mothers discussed times in which they had to defend their children or

themselves from inappropriate reactions from strangers. Hae-Jung, 36, remembered a

time when she encountered strangers who assumed her son was crazy. She saw a boy

talking to his father, making a gesture in which he circled his index finger by his head,
 65

indicating that her son was crazy. As she walked out of the restaurant, she looked at the

father and the son and told them firmly, “My son doesn’t have a mental illness.” Another

mother, Hee-Yeon, 39, told of a time in which she uncharacteristically raised her voice to

an older woman who had scolded her daughter for throwing soap at others in a public

sauna. When the woman accused Hee-Yeon of not properly teaching her child to behave,

she replied, “Shut your mouth!”

Four mothers in our study not only managed difficult interaction with strangers,

but also dealt with husbands and in-laws who blamed them for their children’s problems.

When Hae-Jung, 36, and her husband were struggling to understand their oldest son’s

problem, her husband blamed her:

My husband gave me a book and told me to read it. His point was that I didn’t
raise our child right. I am not very talkative and I don’t talk much to the kids
either. My husband was saying that moms should give lots of stimulation to their
kids. But I didn’t do this and, consequently, our child turned out like this.

It was not much different for Eun-Hae, 32. Both her husband and her parents-in-law

accused her of not raising her daughter properly, “My husband blamed me. He said that it

was my fault because I didn’t raise her right. My in-laws were saying the same thing.”

Mi-Ran, 35, remembered, “The whole family’s blame came down on me. My in-laws

pointed their fingers at me, saying that he was like this because of me.”

Nine mothers said that they initially blamed themselves for their children’s

disabilities. Yoon-Ju, 36, said, “I kept asking myself, ‘What did I do wrong?’” Sang-Mi,

37, remembered learning about her daughter’s disability: “I thought that I was too

negligent of her.” Kyung-Sook, 36, said, “I realized that it all happened when he was
 66

really young. I neglected him.” Another mother, Hae-Jung, 36, agreed: “If I had

interacted with him a little bit more, he would be doing much better.”

Half of the mothers struggled with depression when they first learned of their

children’s autism. Yoon-Ju, 36, remembered, “I cried for about 6 months. Day after day, I

cried.” Ji-Woo, 37, explained: “I think I had depression.” Six mothers in our study

indicated that suicide was an option that they had considered during this initial time of

adjustment. Hee-Yeon, 39, said, “I wanted to die by jumping to the ground from this 10th

floor.” These mothers explained that if they had committed suicide, they also would have

killed their children with autism. Kyung-Ju, 43, stated, “’There was no reason to die

without my child.’” Hae-Jung, 36, also thought of ending her son’s life and her own life.

She later came to realize, though, that it was her problem not her son’s problem. She

stated, “I thought about it a lot. I used to think he was miserable, but then I realized he

may be happy with his life.”

Though all of the mothers struggled with negative attitudes present in South

Korean society, 10 mothers resisted these prejudices. For example, 5 of these women

refused to accept pity from their friends and family. Sang-Mi, 37, remembered a time

when she told a friend, “We’re not that miserable. Sometimes I am happy too. Maybe the

degree of happiness might be different, but I think I am happy enough.” Mi-Ran, 35,

stated: “I don’t like when others feel sorry for us. Honestly, I want others to look at him

as he is.” Instead of hiding their children with autism, 5 mothers integrated their children

into their public lives. Jung-Min, 35, interacted with her neighbors this way: “I open my

door and let others know about Hyo-Kyung—just as she is.” Another mother, Hae-Jung,
 67

36, said, “I am not embarrassed to talk about him or to go somewhere with him because

he has a disability. I didn’t do anything wrong. Why should I hide my child’s disability?”

Kyung-Ju, 43, moved beyond a focus on her own child to a focus on the larger

community of individuals with disabilities. She contributed money to organizations that

served people with disabilities and she recruited others to do so as well. She stated, “I am

interested in human rights for people with mental retardation.” She also spoke in front of

the South Korean National Assembly, a group akin to the United States Congress. She

explained, “I spoke as a parent representative for assistance with tuition for childcare.”

Reconstructing Normal Childhood: “I Want Her to Have Good Social Skills”

All of the mothers went through a process of redefining what normal means for

their children with autism. During infancy, they explained, they had thought that their

children were developing normally. Kyung-Ju, 43, explained: “All of my children were

healthy.” Jin-Young, 38, said: “She looked very smart staring at the mobile or looking at

pictures on the wall in her room.” Hae-Jung, 36, stated: “It was hard to pick out

something that was different about him.” She elaborated: “Before he was a year old, he

said ‘ma.’ So, I thought he was fine.” Jung-Min, 35, also did not notice a problem with

her infant: “She didn’t have any problems with her physical development. Actually she

controlled her neck, sat up, and walked faster than normal.” Because their children

looked and acted like other infants, the mothers assumed that their children would

develop in a typical way.

Once they discovered that their children had autism, 10 mothers believed that

their children could be cured or could become “normal” through intensive medical and
 68

educational treatments. Sun-Hee, 38, stated: “I believed that if I did my best for Dong-

Kun for a year, whatever it was, he would become the same as a normal child.” Hae-Jung,

36, said that she tried Chinese medicine and acupuncture to cure her son’s autism. She

explained: “We thought that he might be cured. So, we held him down for the doctor to

place 30 needles all over his body. He was crying so hard. We were so foolish. ” Eun-Hae,

32, also said that she believed that her daughter could change: “Until she was 6 years old,

I thought that she might be normal when she grew up. But now I do not think that she

will become normal.” When Jin-Young, 38, found out about her daughter’s disability, she

explained: “I thought my child would be cured if I followed everything that was

recommended.”

During this time, 11 of the women’s connections to other mothers who have

children with autism helped them to become reconciled with their children’s limitations.

Hae-Jung explained that she gained emotional support from other mothers whose

children have autism: “I am not the only one who has pain and difficulty.” Ji-Woo, 37,

stated: “It is easier for me to talk to other moms who have children with disabilities.”

Sun-Hee, 38, explained: “We all share the same issue—our children.” Kyung-Ju, 43, said:

“I learned from other mothers.”

As the mothers confronted their children’s limitations and learned more about

autism, they adjusted their expectations of success for their children. Rather than focusing

on academic success, seven mothers emphasized the importance of teaching social and

communication skills to their children with autism. Their hope was that their children will

be included in society. So-Hyun, 37, stated: “What I want for Ho-Seok is that he can
 69

communicate with others.” Jung-Min, 35, agreed: “To live in this society, [my daughter]

needs to be able to communicate what she wants.” Jin-Young, 38, had a similar goal for

her daughter: “I want her to have good social skills and be included in society.” Sun-Hee,

38, talked about her expectation this way: “Teaching Dong-Kun to live without harming

or hurting others in society. I think that it is my current goal.”

Unlike the very goal-oriented approach that most South Korean mothers use with

their children, four mothers in our sample did not have specific goals for their children.

Instead, they wanted their children to be happy. When asked about her expectations for

her son, Ji-Woo, 37, said, “Maybe when he is a little bit older, he will do something that

he likes. I just want him to do whatever he wants to do.” Jung-Min, 35, said that she

wants to raise her child “to be psychologically comfortable and physically healthy.”

Yoon-Ju, 36, explained: “Even if he has autism, he can still do whatever he likes to do.”

She described her childrearing philosophy in this way: “I focus less on education and

more on play.” In addition to communication skills, So-Hyun, 37, stated: “I just want him

to enjoy his life.”

Three mothers had a goal in mind but the goal was shaped by their children’s

circumstances. These mothers wanted their children to live semi-independently or

independently. Kyung-Ju, 43, said, “He can live near me in a duplex. I can live upstairs

and he can live with his friends on the lower floor. I hope he can live in a group home in

our community.” Eun-Hae, 32, stated: “I really want her to live independently,

somewhere without me. I worry about that most. That is my goal.” Sun-Hee, 38, asked
 70

“What kind of work can he do so that he can live independently without his mom and

dad? What can we do to help him be independent?”

Not only did mothers redefine what it means to be normal for their children with

autism, but also 4 mothers redefined success for their children without disabilities.

Kyung-Ju, 43, for example, encouraged her oldest daughter to attend a high school that

focused on animation skills rather than a school that emphasized more highly regarded

subjects such as math, science, and literature. She stated, “I respect my children’s

opinions as much as possible.” Another mother, Hae-Jung, 36, explained, “I don’t believe

that my children should do something well or that I should raise them successfully. I

don’t think that parents have the right to force their children to study harder to make them

successful.” Sun-Hee, 38, talked about her daughter without a disability in this way: “She

may find something that she likes instead of me pushing her to become something I want

her to be.” So-Hyun, 36, criticized the way her friend pressured her daughter to become a

doctor: “What if she doesn’t want to be a doctor? I just tell my children, ‘Be whoever you

want to be.’”

Being a Good Mother: “It Depends On How Successful Our Children Are”

Though the women in our sample described ways in which they had begun to

redefine what it means to be a normal child in Korean society, most of the women

showed little evidence of transforming their ideas about what it means to be a good

mother. They explained that in South Korea, a mother’s success is equal to her child’s

success. When a child receives good grades, goes to a prestigious university, and finds a

lucrative job, most Koreans believe that this success results from the successful practices
 71

of the mother. According to Mi-Ran, 35, “When children grow up successfully, people

think ‘This mom is great. It is about looking at the results.” Kyung-Sook, 36, agreed: “A

mom who raises her child to be a famous musician or a genius is considered to be a

wonderful mom. It depends on how successful her children are.” Because mothers are

evaluated by their children’s success, Kyung-Hee, 42, explained that Korean mothers

“push [their] kids to work harder and harder” so that their children can go to prestigious

high schools and universities.

When asked what makes a good mother to a child with autism, all 14 women

talked about Jin-Ho’s and Hyung-Jin’s mothers, women portrayed in Korean media as

successful mothers of sons with autism. Jin-Ho and Hyung-Jin are teenagers with autism

who have won multiple sports competitions. Their mothers have received significant

attention because of their success, and the personal stories of both mothers and their sons

have been made into television shows and films (Lee, 2005). In addition, Jin-Ho’s mother

wrote several books about her devotion to her son and her educational strategies to train

him. She travels across Korea, explaining her strategies to other mothers with children

who have autism. According to So-Hyun, 37, most people believe that a good mother to a

child with autism is someone like “Jin-Ho’s and Hyung-Jin’s moms. Those moms are

persistent in their efforts to help their children.” Eun-Hae, 32, who read one of the books

written by Jin-Ho’s mother, said that “Most people think of them as good moms.” She

continued to explain how devoted this mother was:

She recorded everything about him and monitored every detail of his problematic
behaviors. She did individualized education, which was different from how others
do. There were lots of things that she actually did by herself. Her focus was on
Jin-Ho.
 72

All 14 women said that they admired these model mothers. Hae-Jung, 36, said,

“Everyone wants to be like them. They are our idols! I think to myself, ‘Will my son be a

swimmer like Jin-Ho? Or will he become a marathoner like Hyung-Jin? Will I become

like their moms?’” Another mother, Sun-Hee, 38, talked highly about the educational and

behavioral strategies that these mothers used to train their children: “I was actually pretty

envious of them. I still think, ‘Wow, such a mom exists!’ Not that I’ve exactly followed

her ways. It is kind-of my dream.” In comparing herself with these idol mothers, So-

Hyun, 37, said that she felt sorry for her son: “I am sorry that he met the wrong mom. He

could have gotten better if he had met a mother like them.”

Though all of the mothers admired Jin-Ho and Hyung-Jin’s mothers, 6 indicated

doubt about the standards these women set. They stated that media representations of the

women created a false image of what mothering a child with autism is really like. Yoon-

Ju, 36, described the media stories in this way:

These children can make progress when their moms help them. Most people
misunderstand that most children with autism are not like Jin-Ho and Hyung-Jin.
Maybe they are in the upper 1%. Most children with autism are worse. These
mothers were successful because their children had some abilities to do well with
support.

Sang-Mi, 37, felt that “Children need to meet good parents, but moms also need to meet

good kids.” These 6 mothers reduced the pressure to be ideal by highlighting that not all

children with autism are capable of high success. Kyung-Sook, 36, recognized that

financial support was necessary for mothers to raise their children with autism

successfully. When her brother suggested that she was not meeting the standards of these

famous mothers, she replied firmly: ‘It requires financial support. And other things are
 73

sacrificed. This is the reality. I said, ‘Wasn’t Jin-Ho’s dad a doctor? Wasn’t he an only

son?’

Although some mothers questioned the high standard of mothering a child with

autism, all 14 of the women told stories that highlighted their responsibility for their

children. They explained that they engaged in an intensive practice of following. The

mothers explained that following meant that they persistently walked behind their

children to anticipate their every action. Jin-Young, 38, explained, “I direct all of my

attention to her. I try to read her mind.” The practice of following, they explained,

required almost 24 hours of vigilance. Hae-Jung, 36, states: “I have to pay attention to

him 24 hours a day. I need to know what he is doing. I need to be alert all the time.” All

of the mothers told stories of how they spent significant amounts of time and energy to

help their children with autism “get better.” Jin-Young, 38, said, “It is difficult, but with

education she will get better.” All 14 mothers stated that they worked hard to locate

private therapists for their children, despite the fact that public professionals were

available to provide services to them. Two mothers stated that they resorted to begging to

have their children seen by a particular private specialist. Hee-Yeon, 39, explained, “I

said, ‘I feel like I am going to die if you don’t help my child.’”

Though all of the mothers described ways they conformed to South Korean

standards of good mothering, two of the women indicated dissatisfaction with their

arrangements. Sun-Hee, 38, pointed out the psychological and social oppression that

South Korean women experience:

 74

It is about Confucianism and traditional ideas against women that are passed
down from generation to generation. When you ask all moms, all women, they
say they want to be born as men. There is a lot of inequality.

So-Hyun, 37, stated, “In our country, to be a good mom, you need to sacrifice yourself,

though, I don’t want to.”

Despite these few examples, most of the mothers accepted the gender relations in

their lives or they had become reconciled to them over time. Mi-Ran, 35, said that she

used to be very upset with her husband who did not spend much time with their son, “[He]

is not a family guy. He plays computer games all the time. When he comes home after

midnight, he doesn’t even look at his son.” Mothers excused their husbands’ behavior by

explaining that their husbands did not know how to take care of their children. For

example, Sang-Mi, 37, remembered when she was 5 months pregnant, taking care of her

oldest child, and doing all of the housework by herself, “My husband is not a very caring

type. He doesn’t know how to play with the kids. So, I do it all by myself. I don’t even

expect [him to help].” Ji-Woo, 37, thought that her husband did not understand the

important details of their child’s life because of his own busy life. She explained that

“Men go to work and come home at night. They have dinner and go to bed. [My husband]

doesn’t know much about Yu-Min’s behaviors. He doesn’t know how I take care of

things.” Instead of emphasizing their husband’s caregiving responsibilities, all of the

women stated that their husbands’ role as breadwinner was primary. Their husbands’

ability to provide financial support was particularly important to them because private

therapy for their children with autism was expensive.

Discussion and Implications

 75

The mothers in our study illustrate how Confucian thought continues to influence

the daily lives of women, dictating that mothers accept primary responsibility for raising

their children, including children with autism. This finding is congruent with other

studies that indicate South Korean men engage in very little unpaid care work (e.g.,

Budlender, 2007). Most women in our study did not question their mothering

responsibilities. As one mother pointed out, “I don’t really think that it is sacrificing. Isn’t

it my responsibility?” Though a few Korean scholars have problematized the patriarchal

aspects of Confucian thought (Cho, 1998; Duncan, 2002; Kim, 1993), the women in our

study focused on being good mothers by raising successful children. Because their

children had special needs, they “followed” their children vigilantly and they arranged for

their children to participate in private therapies to help them “get better.” To provide this

level of care, the mothers did not engage in paid employment. Giving up or limiting paid

work are strategies that women in the United States use to raise their children with

disabilities (Leiter, Krauss, Anderson, & Wells, 2004; McKeever & Miller, 2004;

Porterfield, 2002). The mothers in our study used these strategies as well. Perhaps the

women were highly motivated to be successful mothers because it is the primary means

by which they can obtain social recognition in South Korea (Kim & Ryu, 1996). The

recognition they received, however, was tempered by the fact that their children were not

perfect.

All of the mothers in our study were aware of the negative attitudes that strangers

and family members alike had toward them and toward their children with autism. Over

time, though, they began to resist stigmatizing discourses that define disability as
 76

shameful. The mothers redefined what their goals were for their children and they learned

to advocate for them—in the home, in the community, and in the larger society. A

primary way that they adjusted their beliefs was through ties to other mothers who have

children with autism.

Of course, our sample is small and our participants are similar in that they are

married, live in an urban setting, and are middle-class, South Korean mothers. Because of

this homogeneity and because of our sample size, generalizing our findings to all Korean

mothers who have children with autism would be inappropriate. Still, our study begins to

illuminate how sociocultural systems influence South Korean mothers’ understanding of

themselves and their children. Our findings suggest that middle-class, Korean women can

resist sociocultural discourse, particularly that which is harmful to their children, via

supportive ties with one another. The impetus for women to resist oppressive belief

systems related to motherhood may occur through these same support networks. Feminist

family researchers advocate for knowledge that can serve to transform society (Allen,

Lloyd, & Few, 2009). To this end, we intend to disseminate our findings to participants

and to professionals who assisted us with recruitment, addressing problems identified in

the study (e.g., both mothers of children with disabilities and the larger society blame

mothers for children’s disabilities). Through this effort, we hope to offer Korean mothers

and the professionals who work with them an alternative narrative to consider, one that

acknowledges women’s oppression and empowers them to advocate for themselves as

well as their children with autism.

 77

References

Allen, K. R., Lloyd, S. A., & Few. A. L. (2009). Reclaiming feminist theory, method,
and praxis for family studies. In K. R. Allen, S. A. Lloyd, & A. L. Few (Eds.)
Handbook of feminist family studies (pp. 3-17). Thousand, Oaks, CA: Sage.

American Psychiatric Association (1994). Diagnostic and Statistical Manual of

Mental Disorders (4th ed.). Washington, DC: APA.

Barnes, C. (1996). Theories of disability and the origins of the oppression of disabled
people in western society. In L. Barton (Ed.), Disability and society: Emerging
issues and insights (pp. 43-60). London: Longman.

Beckman-Bell, P. (1981). Child-related stress in families of handicapped children.

Topics in Early Childhood Special Education, 1(3), 45 –53.

Berger, P. L., & Luckmann, T. (1966). The social construction of reality: A treatise in
the sociology of knowledge. New York: Doubleday.

Bernard, J. (1974). The future of motherhood. New York: Dial.

Blaska, J. K. (1998). Cyclical grieving: Reoccurring emotions experienced by parents

who have children with disabilities [Electronic version]. Information Analyses,
70. 1 – 18.

Bristol, M. M., & Schopler, E. (1984). A developmental perspective on stress and

coping in families of autistic children. In J. Blacher (Ed.), Severely
handicapped young children and their families: Research in review (pp. 91-
141). Orlando, FL: Academic Press.

Budlender, D. (2007). A critical review of selected time use surveys. Geneva,

Switzerland: United Nations Research Institute for Social Development.

Burr, V. (2003). Social constructionism (2nd ed.). New York: Routledge.

Bruner, J. (1986). Actual minds: Possible worlds. Cambridge, MA: Harvard

University Press.

Charmaz, K. (2006). Constructing grounded theory: A practical guide through

qualitative analysis. Thousand Oaks, CA: Sage.
 78

Cho, H. (1998). Male dominance and mother power: The two sides of Confucian
patriarchy in Korea. In W. H. Slote & G. A. Devos (Eds.), Confucianism and
the family (pp. 187-208). Albany, NY: State University of New York Press.

Cho, S., Singer, G. H., & Brenner, M. (2003). A comparison of adaptation to

childhood disability in Korean immigrant and Korean mothers. Focus on
Autism and Other Developmental Disabilities, 18, 9-20.

Creswell, J. (2003). Research design (2nd ed.). Thousand Oaks, CA: Sage.

Denzin, N. K., & Lincoln, Y. S. (2000). Introduction: The discipline and practice of
qualitative research. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of
qualitative research (2nd ed., pp. 1-28). Thousand Oaks, CA: Sage.

Duncan, J. B. (2002). Uses of Confucianism in modern Korea. In B. A. Elman, J. B.

Duncan, & H. Ooms (Eds.), Rethinking Confucianism: Past and present in
China, Japan, Korea, and Vietnam (pp. 431-462). Los Angeles: University of
California.

Fontana, A., & Frey, J. H. (2000). The interview: From structured questions to
negotiated text. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of
qualitative research (2nd ed., pp. 645-672). Thousand Oaks, CA: Sage.

Gilgun, J. (1992). Definitions, methodologies, and methods in qualitative family

research. In J. F. Gilgun, K. Daly, & G. Handel (Eds.), Qualitative methods in
family research (pp. 22-39). Thousand Oaks, CA: Sage.

Gavey, N. (1989). Feminist poststructuralism and discourse analysis: Contributions to

a feminist psychology. Psychology of Women Quarterly, 13, 459-475.

Glenn, E. N. (1994). Social constructions of mothering: A thematic overview. In E. N.

Glenn, G. Chang, & L. R. Forcey (Eds.), Mothering: Ideology, experience and
agency (pp. 1-29). New York: Routledge.

Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood

Cliffs, NJ: Prentice-Hall.

Gray, D. E. (1993). Perception of stigma: The parents of autistic children. Sociology of

Health and Illness, 15, 102-120.

Gray, D. E. (1994). Coping with autism: Stress and strategies. Sociology of Health and
Illness, 16, 275-300.
 79

Gubrium, J. F., & Holstein, J. A. (2000). Analyzing interpretive practice. In N. K.

Denzin & Y. S. Lincoln, (Eds.), Handbook of qualitative research (2nd ed., pp.
487-508). Thousand Oaks, CA: Sage.

Hur, Y. R., & Yoon, H. J. (1998). A survey of Korean mothering behavior toward
childrearing practice and education. Journal of Korea Open Association for
Early Childhood Education, 3, 109-126.

Hyun, K. K. (2001). Sociocultural change and traditional values: Confucian values

among Koreans and Korean Americans. International Journal of Intercultural
Relations, 25, 203-226.

Jung, D. Y. (2007). South Korean perspective on learning disabilities. Learning

Disabilities Research & Practice, 22, 183-188.

Kim, M. (2002). The study on social distance against individuals with disabilities.
Mental Health and Social Work, 14, 99-126.

Kim, S. J., & Kang, K. A. (2003). Meaning of life for adolescents with a physical
disability in Korea. Issues and Innovations in Nursing Practice, 43, 145-157.

Kim, B. C., & Ryu, E. (1996). Korean families. In M. McGoldrick, J. Giordano, & J.
K. Pearce (Eds.), Ethnicity and family therapy (2nd ed., pp. 281-294). New
York: Guilford.

Kwon, H. (2005). Inclusion in South Korea: The current situation and future directions.
International Journal of Disability, Development and Education, 52, 59-68.

Lareau, A. (2003). Unequal childhoods: Class, race, and family life. Berkeley, CA:
University of California Press.

LaRossa, R., & Reitzes, D. C. (1993). Symbolic interactionism and family studies. In
P. G. Boss, W. J. Doherty, R. LaRossa, W. R. Schumm, & S. K. Steinmetz
(Eds.), Sourcebook of family theories and methods: A contextual approach (pp.
135-163). New York: Plenum Press.

Lather, P. (1991). Getting smart: Feminist research and pedagogy with/in the
postmodern. New York: Routledge.

Lee, H. W. (2002). A study of family support and parenting stress of children with
developmental disabilities. Journal of Emotional Disturbances & Learning
Disabilities, 18, 327-349.
 80

Lee, K. K. (1998). Confucian tradition in the contemporary Korean family. In W. H.

Slote & G. A. Devos (Eds.), Confucianism and the family (pp. 249-266).
Albany, NY: State University of New York Press.

Lee, S. (2005, January). Humanistic drama, “Marathon”: A victory of a twenty-year-

old with autism, Retrieved January 3, 2006, from
http://magazine.joins.com/newsweek/

Lee, S. (1994). A stress research of parent child rearing practices relating to autistic
behavior problems. Korea Institute for Special Education, 1, 23-39.

Lee, S., & Jun, G. (2004). A study on the experience of mothers with children with
developmental disabilities and parent education program: Focus on the mothers
with autistic and feebleminded children. Journal of Korean Family Relations,
9, 57-83.

Lee, S., & Keith, P. M. (1999). The transition to motherhood of Korean women.
Journal of Comparative Family Studies, 30, 453-470.

Leiter, V., Krauss, M. W., Anderson, B., & Wells, N. (2004). The consequences of
caring: Effects of mothering a child with special needs. Journal of Family
Issues, 25, 379-403.

Marcenko, M. O., & Meyers, J. C. (1991). Mothers of children with developmental

disabilities: Who shares the burden? Family Relations, 40, 186-190.

Mauk, J. E., Reber, M., & Batshaw, M. L. (1997). Autism: And other pervasive
developmental disorders. In M. L. Batshaw (Ed.), Children with disabilities
(4th ed., pp. 425-447). Baltimore, MD: Paul H. Brookes.

McDonnell, J. T. (1998). On being the “bad” mother of an autistic child. In M. Ladd-

Taylor & L. Umanky (Eds.), “Bad” mothers: The politics of blame in
twentieth-century America (pp. 220-229). New York: New York University
Press.

McKeever, P., & Miller, K-L, (2004). Mothering children who have disabilities: A
Bourdieusian interpretation of maternal practices. Social Science & Medicine,
59, 1177-1191.

Murphy, R. (1995). Encounters: The body silent in America. In B. Ingstad, & S. R.

Whyte (Eds.), Disability and culture (pp. 140-158). Berkeley, CA: University
of California Press.
 81

Nelson, A. M. (2002). A metasynthesis: Mothering other-than-normal children.

Qualitative Health Research, 12, 513-530.

Newschaffer, C. J., Falb, M. D., & Gurney, J. G. (2005). National autism prevalence
trends from United States special education data. Pediatrics, 115, 277-282.

Nicholas, D. B. (1999). Meaning of maternal caregiving: Children with end stage renal
disease. Qualitative Health Research, 9, 468-478.

Oakley, A. (1974). Woman’s work: The housewife, past and present. New York:
Pantheon Books.

O’Brien, M. (2007). Ambiguous loss in families of children with autism spectrum

disorders. Family Relations, 56, 135-146.

Oh, Y., & Kim, S. (1996). Directors’ reports of day care centers. Korea Journal of
Child Care and Education, 8, 33-52.

Park, J. (2002). Special education in South Korea. Teaching Exceptional Children,

34(5), 28-33.

Park, S., Kim, Y., Kim, E., Lee, D., Wu, J., & Jung, J. (2004). A Study on Perceptions
on Academic Achievement Tests and the Status of Academic Achievement of
Students With Developmental Disabilities. Seoul: Korea Institute for Special
Education.

Patton, M. Q. (2002). Qualitative evaluation and research method (3rd ed.). Thousand
Oaks, CA: Sage.

Porterfield, S. L. (2002). Work choices of mothers in families with children with

disabilities. Journal of Marriage and Family, 64, 972-981.

Read, J. (2000). Disability, the family, and society: Listening to mothers. Buckingham,
UK: Open University Press.

Skinner, D., Bailey, D. B., Correa, V., & Rodriquez, P. (1999). Narrating self and
disability: Latino mothers’ construction of identities vis-à-vis their child with
special needs. Exceptional Children, 65, 481-495.

Skinner, D., & Weisner, T. (2007). Sociocultural studies of families of children with
intellectual disabilities. Mental Retardation and Developmental Disabilities
Research Reviews, 13, 302-312.

Smith, C. (2003). Moral, believing animals. New York: Oxford University Press.
 82

Stauss, A. L., & Corbin, J. (1990). Basics of qualitative research: Grounded theory
procedures and techniques. Newbury Park, CA: Sage.

Schwandt, T. A. (2000). Three epistemological stances for qualitative inquiry:

Interpretivism, hermeneutics, and social constructionism. In N. K. Denzin & Y.
S. Lincoln (Eds.), Handbook of qualitative research (2nd ed., pp. 189 – 214).
Thousand Oaks, CA: Sage.

Traustadottir, R. (1991). Mothers who care: Gender, disability, and family life.
Journal of Family Issues, 12, 211-228.

Tu, W. (1998). Probing the “Thee Bonds” and “Five Relationships” in Confucian
humanism. In W. H. Slote & G. A. Devos (Eds.), Confucianism and the family
(pp. 121-136). Albany, NY: State University of New York Press.

White, M., & Epston, D. (1990). Narrative means to therapeutic ends. New York:
Norton.

Whyte, S. R., & Ingstad, B. (1995). Disability and culture: An overview. In B. Ingstad
& S. R. Whyte (Eds.), Disability and culture (pp. 3-34). Berkeley, CA:
University of California Press.

Yang, S., & Rosenblatt, P. C. (2001). Shame in Korean families. Journal of

Comparative Family Studies, 32, 361-375.

Yang, S., & Rosenblatt, P. C. (2008). Confucian family values and childless couples in
South Korea. Journal of Family Issues, 29, 571-591.
 83

CONCLUSIONS

I examined the ways women understand themselves and their children with

autism in two cultural contexts: the United States and South Korea. As a whole, the

findings of these two studies suggest that middle-class women in both cultural

contexts understand their children with autism and themselves through sociocultural

lenses related to gender and disability. In this conclusion, I provide summaries of the

findings from each study and I discuss their shared significance. Then, I offer

suggestions to support the lives of women who have children with autism in both

countries. Finally, I discuss the future direction of research needed to better

understand the lives of mothers caring for their children with autism.

Summary of Findings

The first study, Striving to Be a Better Mother: Women Who Have Children

With Autism, was conducted with Lori McGraw and Katherine MacTavish. Guided by

symbolic interactionist and feminist theoretical perspectives, I qualitatively examined

(a) how middle-class, White women who have children with autism understand

themselves as mothers and (b) how their ideas are shaped by social interactions with

others. Through in-depth interviews with 12 women who have children with autism, I

found that these women understand themselves as empathic supporters, mediators, and

advocates for their children with autism. Their stories are shaped by selective attention

to those who support their self-image and a disregard of those who undermine it.
 84

In the second study with Lori McGraw, The Intersection of Motherhood and

Disability: Being a “Good” Korean Mother to an “Imperfect” Child, I conducted in-

depth interviews with 14 middle-class, South Korean women who have children with

autism to gain a better understanding of how these women understand themselves and

their children with autism within a sociocultural context that devalues mothers and

individuals with disabilities. The narratives of the women provide evidence that they

resist attitudes that devalue and stigmatize their children with autism by redefining

what “normal” childhood means. These mothers did not, however, resist attitudes that

devalue women. They continued to perceive themselves as “good” by holding on to

Confucian family values that encourage women to sacrifice themselves for their

children’s success.

Conclusions Drawn From Each Study

Although each study in my dissertation was conducted in a distinct cultural

context with slightly different theoretical frameworks, the main focus of the studies

centers on the understandings mothers who have children with autism have of

themselves and their children. The findings of the two studies collectively tell us that

mothering a child with autism is (a) gendered, (b) influenced by the stigmatized nature

of autism, and (c) simultaneously oppressive and empowering to women. In the

following sections, I detail these aspects of mothering a child with autism.

The Gendered Nature of Caring for a Child With Autism

The experiences mothers have caring for their children with autism are shaped

by sociocultural processes related to motherhood. As feminist scholars have long

 85

argued, gender is a socially constructed rather than biologically given concept

(Bernard, 1974; Oakley, 1974; Osmond & Thorne, 1993; Thompson & Walker, 1989).

Women’s identities and experiences are shaped by sociocultural beliefs about what it

means to be a mother (Arendell, 2001; Glenn, 1995; Hays, 1996). The women in the

first study, Striving to Be a Better Mother: Women Who Have Children with Autism,

understood themselves and their mothering a child with autism through paying

attention to their social ties. These White American women pursued relationships that

support their mothering a child with autism while they discontinued relationships that

threaten their ideas. A similar social process was shown in the second study, The

Intersection of Motherhood and Disability: Being a “Good” Korean Mother to an

“Imperfect” Child. The ways that Korean mothers understood themselves and their

children with autism were closely related to Confucian beliefs about disability and the

proper role of women in the culture. These mothers accepted their role as primary

caregivers for their children. They did so without much questioning of their husband’s

lack of involvement in child rearing. Furthermore, as the social status of mothers is

highly dependent on the outcome of their children in South Korea, the mothers in the

study were highly engaged in the pursuit of treatments to help their children “get

better.”

Mothering Within Cultures That Stigmatize Persons With Autism

The ways mothers understand themselves and their children with autism is not

only gendered, but also is shaped by sociocultural processes related to disability.

Mothers often struggle with the ambiguous nature of autism in that their children
 86

appear to be physically healthy but are delayed in their cognitive, social, and language

development (Gray, 1993, 1994, O’Brien, 2007). Mothers’ understanding of autism is

also related to how individuals with autism are viewed in their society (Skinner &

Weisner, 2007; Whyte & Ingstad, 1995). For example, the way that women in Oregon

understood autism was shaped by their interactions with extended family members,

friends, and professionals. The way that South Korean mothers understood autism was

influenced by their culture’s belief that having a child with autism is shameful.

As an empathic support to their children with autism, the women in Oregon

accepted their children and their disability and made efforts to be patient with their

children with autism. They also engaged in educating their relatives, friends, and

neighbors so that others have accurate information about their children with autism.

The South Korean mothers also experienced challenges in understanding autism. Their

understanding of autism prior to their children’s diagnosis was limited to stereotypical

images of someone with severe autism. Additionally, their children’s typical

appearance did not match with the problematic behaviors that their children exhibited.

Rather than attending more to a medical or educational explanation for their children’s

disability, these mothers felt humiliated by shame that is typically associated with

individuals with autism in Korean society (Yang & Rosenblatt, 2001).

The Two Sides of Mothering: Oppression and Empowerment

My dissertation continues the discussion about how mothers can be both

oppressed and empowered (Arendell, 2001; Glenn, 1994). Because of their children’s

disabilities, women in my studies seemed to be more pressed to meet cultural

 87

expectations of being a caring mother. They were influenced by the patriarchal idea

that women are mainly responsible for nurturing their children with disabilities (Read,

2000; Traustadottir, 1991). For example, the Oregon mothers indicated that they tried

harder than mothers with typically developing children to be good mothers. The same

was true for the mothers in South Korea. They were blamed by family members for

their children’s problems, and they worked extremely hard to find a way to help their

children “get better.”

In contrast, mothers may hold a positive image about themselves when they

meet high standards for mothering (Skinner, Bailey, Correa, & Rodriguez, 1999). In

addition, women can feel empowered to advocate for the needs of their own and other

children with disabilities (Read, 2000; Traustadottir, 1991). The stories of the mothers

in the first study indicate that they selectively paid attention to reassuring comments

that they are caring for their children well. These women sought second opinions

when relatively powerful medical and educational professionals discredited their own

concerns and knowledge about their children. Although the South Korean mothers

seldom resisted sociocultural ideas related to being a “good” mother, they resisted

ideas that were hurtful to their children by building supportive relationships with other

mothers who have children with disabilities.

Implications for Practice

The findings of these studies illustrate that women primarily think of

themselves as “good” when they accept dominant sociocultural ideas that hold them

responsible for their children’s care--both in the United States and in South Korea.
 88

Here, I offer several implications for practice to support mothers and to encourage

fathers to share responsibility for providing care to their children with autism. To be

effective, each approach requires a sensitive adaptation to the cultural context within

which women live.

Recognizing Mothers’ Care Work and Encouraging Fathers’ Care Work

Women can benefit from social recognition of the gendered nature of care

work (Read, 2000; Traustadottir, 1991). Educational and support programs can serve

to address how care work is unequally divided between women and men and the effort

to change the family care work pattern (Dillaway & Paré, 2008).

Current support programs for families who have children with disabilities

focus on providing information on services for children and training for parents

(Matthews & Hudson, 2001). These programs tend to use gender-neutral terms, such

as parent. For example, the U.S. Department of Health and Human Services

(http://www.disabilityinfo.gov/digov-

public/public/DisplayPage.do?parentFolderId=5252) provides an extensive list of

programs that include The Arc-Parents with Intellectual Disabilities, Family Support

360, Parent Training & Information Centers, and Community Parent Resources

Centers. These programs emphasize the development of parental skills to reduce stress

and increase coping. Instead of this gender-neutral approach, programs should

recognize the work that mothers do as primary caregivers. With this acknowledgement,

program providers can not only support mothers but also encourage fathers’

involvement in providing care to their children with autism. This issue is equally or
 89

even more urgent in South Korea because of sociocultural beliefs that overlook the

unequal division of care work between women and men (Cho, 1998; Lee & Keith,

1999; Yang & Rosenblatt, 2008).

Optimizing Mothers’ Agency and Resiliency

Women caring for their children with autism also can benefit from programs

that encourage their agency and resiliency. This issue is complex though because

mothers and the larger society often put children’s needs before women’s needs. This

focus is more prevalent when children have a lot of needs. Consequently, the well-

being of mothers receives scarce attention when they have children with disabilities.

One of the ways to support women is to help them build support networks with

other women who have children with autism. The mothers in both studies stressed that

their relationships with other women who have children with disabilities were helpful

to them. Although mothers seem to find other women in similar situations through

informal networks, organized programs can be effective as well. These formal

programs can assist women with information and resources useful for mothering their

children, and can help women recognize their own worth. For example, a U.S.

program such as Parent-to-Parent helps mothers caring for their children with

disabilities by matching a veteran mother with a novice mother in a similar situation

(Santelli, Turnbull, Marquis, & Lerner, 1997; Santelli, Turnbull, & Higgins, 1997).

South Korean mothers could also benefit from this program.

Another way to support women who have children with disabilities is to

provide them with respite care. Respite care provides mothers time away from
 90

immediate care responsibility for their children (Chan & Sigafoos, 2001; Herman &

Marcenko, 1997). In fact, previous studies show that respite care reduces the stress

and depressive symptoms of U.S. mothers who have children with developmental

disabilities (Chan & Sigafoos, 2001; Herman & Marcenko, 1997). Government funded

respite care, however, is not readily available for mothers in South Korea (Lee &

Kang, 1997). In South Korea, instead of using government funded and implemented

programs, mothers often rely on informal networks or voluntary associations such as

church groups for provision of care to their children with disabilities (Kim & Ross,

2008). Indeed, none of the South Korean women in the second study mentioned that

they used respite care. The availability and implementation of respite care could help

South Korean women to psychologically and physically distance themselves from the

difficulties associated with care demands.

Reshaping Relationship With Professionals

Women who have children with autism can benefit from supportive ties with

professionals who work with their children. In particular, professionals in the medical

sector need to be educated about the signs of developmental delay in young children

and the need to pay attention to mothers’ concerns about their children.

Incorporating a brief screening for autism into pediatricians’ routine well baby

care protocols in both the United States and South Korea would greatly enhance early

detection of autism. Although the American Academy of Pediatrics (AAP)

(http://www.aap.org/publiced/autismtoolkit.cfm) is committed to early identification

of autism in young children, the implementation of this proposal has been limited.
 91

Autism screening is not readily practiced among most pediatricians in the United

States (Johnson & Meyers, 2007). This issue is not emphasized in the Korean

Pediatrics Academy (http://www.pediatrics.or.kr/index.html). Pediatricians and

primary care doctors need to listen to mothers about their concerns related to delayed

development in their children (Johnson & Meyers, 2007). It is important not to

discredit mothers’ own experiences and knowledge about their children.

Increasing Awareness of Autism

Lastly, mothers and children with autism would benefit from a greater public

understanding of autism. Appreciating the various functional and communicative

levels of children with autism will help people to be supportive when their family

members, friends, and neighbors have a child with autism. Autism is a spectrum

disorder and children with autism have various levels of intelligence, language, and

daily functions (Mauk, Reber, & Batshaw, 1997; O’Brien, 2007). For example, public

campaigns to educate the public should be continuously available. Also, support

programs for extended family members to help them understand their grandchildren,

nephews, and nieces with autism are needed.

In addition to having national and local programs to help people understand

children with autism, it is time to eliminate the stereotypical image of someone with

autism as a person with extraordinary intellectual capabilities when most individuals

with autism are developmentally delayed. This image creates a false understanding of

someone with autism. Especially for South Korean mothers, it is important not to

exaggerate the potential success of their children with autism. Although the stories of
 92

Jin-Ho and Hyung-Jin and their mothers might have helped the general public to

become more aware of children with autism, focusing only on children with high

functioning autism creates a false image of someone with autism and mothers who

care for their children with autism.

Future Directions

The studies in my dissertation together illustrate the ways mothers in the

United States and South Korea understand themselves and their children with autism.

Although the stories of the women are unique to their historical, political, and

sociocultural contexts, they share similar experiences in that both U.S. and Korean

mothers are primary caregivers for their children with autism in societies that devalue

care work and children with autism. To better understand mothering a child with

autism, my next step will be to compare and contrast the stories shared by the women

in South Korea and in the United States, This cross-cultural research approach will

better address the similar ways and the unique ways that women understand

themselves and their children with autism.

 93

Bibliography

Allen, K. R., Lloyd, S. A., & Few. A. L. (2009). Reclaiming feminist theory, method,
and praxis for family studies. In K.R. Allen, S. A. Lloyd, & A. L. Few (Eds.)
Handbook of feminist family studies (pp. 3-17). Thousand, Oaks, CA: Sage.

American Psychiatric Association (1994). Diagnostic and Statistical Manual of

Mental Disorders (4th ed.). Washington, DC: APA.

Arendell, T. (2001). Conceiving and investigating motherhood: The decade's

scholarship. In R. M. Milardo (Ed.), Understanding families into the new
millennium: A decade in review (pp. 411-426). Lawrence, KS: National
Council on Family Relations.

Badinter, E. (1981). Mother love: Myth and reality. New York: Macmillan.

Bailey, D. B., & Simeonsson, R. J. (1998). Assessing needs of families with

handicapped infants. Journal of Special Education, 22, 117-127.

Beckman-Bell, P. (1981). Child-related stress in families of handicapped children.

Topics in Early Childhood Special Education, 1(3), 45 –53.

Berger, P. L., & Luckmann, T. (1966). The social construction of reality: A treatise in
the sociology of knowledge. New York: Doubleday.

Blumer, H. (1969). Symbolic interactionism: Perspective and method. Englewood

Cliffs, NJ: Prentice-Hall.

Bristol, M. M., & Schopler, E. (1984). A developmental perspective on stress and

coping in families of autistic children. In J. Blacher (Ed.), Severely
handicapped young children and their families: Research in review (pp. 91-
141). Orlando, FL: Academic Press.

Budlender, D. (2007). A Critical review of selected time use surveys. Geneva,

Switzerland: United Nations Research Institute for Social Development.

Bumiller, K. (2008). Quirky citizens: Autism, gender, and reimagining disability.

Signs, 33, 967-991.

Burr, V. (2003). Social constructionism (2nd ed.). New York: Routledge.

Bruner, J. (1986). Actual minds: Possible worlds. Cambridge, MA: Harvard

University Press.
 94

Chan, J. B., & Sigafoos, J. (2001). Does respite care reduce parental stress in families
with developmental disabilities? Child & Youth Care Forum, 30, 253-263.

Charmaz, K. (2006). Constructing grounded theory: A practical guide through

qualitative analysis. Thousand Oaks, CA: Sage.

Cho, H. (1998). Male dominance and mother power: The two sides of Confucian
patriarchy in Korea. In W. H. Slote & G. A. Devos (Eds.), Confucianism and
the family (pp. 187-208). Albany, NY: State University of New York Press.

Cho, S., Singer, G. H., & Brenner, M. (2003). A comparison of adaptation to

childhood disability in Korean immigrant and Korean mothers. Focus on
Autism and Other Developmental Disabilities, 18, 9-20.

Collins, P. H. (1994). Shifting the center: Race, class, and feminist theorizing about
motherhood. In E. N. Glenn, G. Chang, & L. R. Forcey (Eds.), Mothering:
Ideology, experience and agency (pp. 45-65). New York: Routledge.

Coltrane, S. (2000). Research on household labor: Modeling and measuring the social
embeddedness of routine family work. Journal of Marriage and the Family, 62,
1208-1233.

Creswell, J. (2003). Research design (2nd ed.). Thousand Oaks, CA: Sage.

Denzin, N. K. (1997). Interpretive ethnography: ethnographic practices for the 21st

century. Thousand Oaks, CA: Sage.

Denzin, N. K., & Lincoln, Y. S. (2000). Introduction: The discipline and practice of
qualitative research. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of
qualitative research (2nd ed., pp. 1-28). Thousand Oaks, CA: Sage.

Dillaway, H., & Paré, E. (2008). Locating mothers: How cultural debates about stay-
at-home versus working-mothers define women and home. Journal of Family
Issues, 29, 437-464.

Duncan, J. B. (2002). Uses of Confucianism in modern Korea. In B. A. Elman, J. B.

Duncan, & H. Ooms (Eds.), Rethinking Confucianism: Past and present in
China, Japan, Korea, and Vietnam (pp. 431-462). Los Angeles: University of
California.

Erickson, R. J. (2003). The familiar institution. In L. T. Reynolds & N. J. Herman-

Kinney (Eds.), Handbook of symbolic interactionism (p. 511-538). New York:
Altamira.
 95

Ferree, M. M. (1991). Feminism and family research. In A Booth (Ed.), Contemporary

families: Looking forward, looking back (pp. 103-121). Minneapolis, MN:
National Council on Family Relations.

Fontana, A., & Frey, J. H. (2000). The interview: From structured questions to
negotiated text. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of
qualitative research (2nd ed., pp. 645-672). Thousand Oaks, CA: Sage.

Fox, G. L., & Murry, V. M. (2000). Gender and families: Feminist perspectives and
family research. Journal of Marriage and the Family, 61, 1160-1172.

Gilgun, J. (1992). Definitions, methodologies, and methods in qualitative family

research. In J. F. Gilgun, K. Daly, & G. Handel (Eds.), Qualitative methods in
family research (pp. 22-39). Thousand Oaks, CA: Sage.

Gavey, N. (1989). Feminist poststructuralism and discourse analysis: contributions to

a feminist psychology. Psychology of Women Quarterly, 13, 459-475.

Glenn, E. N. (1994). Social constructions of mothering: A thematic overview. In E. N.

Glenn, G. Chang, & L. R. Forcey (Eds.), Mothering: Ideology, experience and
agency (pp. 1-29). New York: Routledge.

Green, S. E. (2003). “What do you mean ‘what’s wrong with her?”: Stigma and the
lives of families of children with disabilities. Social Science and Medicine, 57,
1361-1374.

Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood

Cliffs, NJ: Prentice-Hall.

Goldberg, S., Morris, P., Simmons, R. J., & Fowler, R. S. (1990). Chronic illness in
infancy and parenting stress: A comparison of three groups of parents. Journal
of Pediatric Psychology, 15, 347-358.

Gray, D. E. (1993). Perception of stigma: The parents of autistic children. Sociology of

Health and Illness, 15, 102-120.

Gray, D. E. (1994). Coping with autism: Stress and strategies. Sociology of Health and
Illness, 16, 275-300.

Gubrium, J. F., & Holstein, J. A. (2000). Analyzing interpretive practice. In N. K.

Denzin & Y. S. Lincoln, (Eds.), Handbook of qualitative research (2nd ed., pp.
487-508). Thousand Oaks, CA: Sage.
 96

Herman, S. E, & Marcenko, M. O. (1997). Perceptions of services and resources as

mediators of depression among parents of children with developmental
disabilities. Mental Retardation, 35, 458-467.

Honey, E., Hasting, R. P., & McConachie, H. (2005). Use of the questionnaire on
resources and stress (QRS-F) with parents with young children with autism.
Autism, 9, 246-255.

Hur, Y. R., & Yoon, H. J. (1998). A survey of Korean mothering behavior toward
childrearing practice and education. Journal of Korea Open Association for
Early Childhood Education, 3, 109-126.

Hulbert, A. (2003). Raising America: Experts, parents, and a century of advice about
children. New York: Knopf.

Hyun, K. K. (2001). Sociocultural change and traditional values: Confucian values

among Koreans and Korean Americans. International Journal of Intercultural
Relations, 25, 203-226.

Johnson, C. P., & Myers, S. M. (2007). Identification and evaluation of children with
autism spectrum disorders. Pediatrics, 120, 1183-1215.

Jung, D. Y. (2007). South Korean perspective on learning disabilities. Learning

Disabilities Research & Practice, 22, 183-188.

Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217-

250.

Kim, M. (2002). The study on social distance against individuals with disabilities.
Mental Health and Social Work, 14, 99-126.

Kim, S. J., & Kang, K. A. (2003). Meaning of life for adolescents with a physical
disability in Korea. Issues and Innovations in Nursing Practice, 43, 145-157.

Kim, B. C., & Ryu, E. (1996). Korean families. In M. McGoldrick, J. Giordano, & J.
K. Pearce (Eds.), Ethnicity and family therapy (2nd ed., pp. 281-294). New
York: Guilford.

Kim, R. (2005). Autistic swimmer breaks world record. The Korean Times. September
2005. Retrieved January 3, 2006, from http://times.hankooki.com/

Kim, Y. D., & Ross, L. (2008). Developing services user involvement in the South
Korean disability services: Lessons from the experience of community care
 97

policy and practice in UK. Health and Social Care in the Community, 16, 188-
196.

Korean Ministry of Health and Welfare (2008). 2008 Report on individuals with
disabilities. Seoul: Korean Ministry of Health and Welfare.

Kwon, H. (2005). Inclusion in South Korea: The current situation and future directions.
International Journal of Disability, Development and Education, 52, 59-68.

Landsman, G. (2000). “Real motherhood,” class and children with disabilities. In H.

Ragone & F. W. Twine (Eds), Ideologies and technologies of motherhood:
Race, class, sexuality, nationalism (pp. 169-187). New York: Routledge.

Lareau, A. (2003). Unequal childhoods: Class, race, and family life. Berkeley, CA:
University of California Press.

Larkin, M. (2004). What is social constructionism? Retrieved September, 9, 2005,

from http://www.psy.dmu.ac.uk/michael/soc_con_disc.htm

LaRossa, R., & Reitzes, D. C. (1993). Symbolic interactionism and family studies. In
P. G. Boss, W. J. Doherty, R. LaRossa, W. R. Schumm, & S. K. Steinmetz
(Eds.), Sourcebook of family theories and methods: A contextual approach. (pp.
135-163). New York: Plenum Press.

Lather, P. (1991). Getting smart: Feminist research and pedagogy with/in the
postmodern. New York: Routledge.

Lee, H. S., & Kang, Y. Y. (1997). Support for families who have children with autism.
Korean Journal of Special Education, 20, 95-120.

Lee, H. W. (2002). A study of family support and parenting stress of children with
developmental disabilities. Journal of Emotional Disturbances & Learning
Disabilities, 18, 327-349.

Lee, K. K. (1998). Confucian tradition in the contemporary Korean family. In W. H.

Slote & G. A. Devos (Eds.), Confucianism and the family (pp. 249-266).
Albany, NY: State University of New York Press.

Lee, S. (1994). A stress research of parent child rearing practices relating to autistic
behavior problems. Korea Institute for Special Education, 1, 23-39.

Lee, S. (2005). Humanistic drama, “Marathon”: A victory of a twenty-year-old with

autism, January 2005, Retrieved January 3, 2006, from
http://magazine.joins.com/newsweek/
 98

Lee, S., & Jun, G. (2004). A study on the experience of the mothers with children with
developmental disabilities and parent education program: Focus on mothers
with autistic and feebleminded children. Journal of Korean Family Relations,
9, 57-83.

Lee, S., & Keith, P. M. (1999). The transition to motherhood of Korean women.
Journal of Comparative Family Studies, 30, 453-470.

Leiter, V., Krauss, M. W., Anderson, B., & Wells, N. (2004). The consequences of
caring: Effects of mothering a child with special needs. Journal of Family
Issues, 25, 379-403.

Marcenko, M. O., & Meyers, J. C. (1991). Mothers of children with developmental

disabilities: Who shares the burden? Family Relations, 40, 186-190.

Marshall, J. L., Godfrey, M., & Renfrew, M. J. (2007). Being a ‘good mother’:
Managing breastfeeding and merging identities. Social Science & Medicine, 65,
2147-2159.

Matthews, J. M., & Hudson, A. M. (2001). Guidelines for evaluating parent training
programs. Family Relations, 50, 77-86.

Mauk, J. E., Reber, M., & Batshaw, M. L. (1997). Autism: And other pervasive
developmental disorders. In M. L. Batshaw (Ed.), Children with disabilities
(4th ed., pp. 425-447). Baltimore, MD: Paul H. Brookes.

McDonnell, J. T. (1998). On being the “bad” mother of an autistic child. In M. Ladd-

Taylor & L. Umanky (Eds.), “Bad” mothers: The politics of blame in
twentieth-century America (pp. 220-229). New York: New York University
Press.

McGraw, L. A., & Walker, A. J. (2004). Gender in families: The more things change,
the more they stay the same. In M. Coleman & L. H. Ganong (Eds.),
Handbook of contemporary families: Considering the past, contemplating the
future (pp. 174-191). Thousand Oaks, CA: Sage.

McGraw, L. A., & Walker, A. J. (November, 2005). The sociocultural parameters of

siblinghood and developmental disability: A dialectic process of agency and
structural constraint. Paper presented at the Theory Construction and Research
Methodology Workshop, National Council on Family Relations, Phoenix, AZ.

McGraw, L. A., Zvonkovic, A., & Walker, A. J. (2000). Studying postmodern families:
A feminist analysis of ethical tensions in work and family research. Journal of
Marriage and the Family, 62, 68-77.
 99

McKeever, P., & Miller, Karen-Lee, (2004). Mothering children who have disabilities:
A Bourdieusian interpretation of maternal practices. Social Science &
Medicine, 59, 1177-1191.

Miller, T. (2007). “Is this what motherhood is all about?” Weaving experiences and
discourse through transition to first-time motherhood. Gender & Society, 21,
337-358.

Murphy, R. (1995). Encounters: The body silent in America. In B. Ingstad & S. R.

Whyte (Eds.), Disability and culture (pp. 140-158). Berkeley, CA: University
of California Press.

Nelson, A. M. (2002). A metasynthesis: Mothering other-than-normal children.

Qualitative Health Research, 12, 513-530.

Newschaffer, C. J., Falb, M. D., & Gurney, J. G. (2005). National autism prevalence
trends from United States special education data. Pediatrics, 115, 277-282.

Nicholas, D. B. (1999). Meaning of maternal caregiving: Children with end stage renal
disease. Qualitative Health Research, 9, 468-478.

Oakley, A. (1974). Woman’s work: The housewife, past and present. New York:
Pantheon Books.

O’Brien, M. (2007). Ambiguous loss in families of children with autism spectrum

disorders. Family Relations, 56, 135-146.

Oh, Y., & Kim, S. (1996). Directors’ reports of day care centers. Korea Journal of
Child Care and Education, 8, 33-52.

Osmond, M. W., & Thorne, B. (1993). Feminist theories: The social construction of
gender in families. In P. G. Boss, W. J. Doherty, R. LaRossa, W. R. Schumm,
& S. K. Steinmetz (Eds.), Sourcebook of family theories and methods: A
contextual approach (pp. 591-622). New York: Plenum Press.

Park, J. (2002). Special education in South Korea. Teaching Exceptional Children, 34,
28-33.

Park, S., Kim, Y., Kim, E., Lee, D., Wu, J., & Jung, J. (2004). A Study on Perceptions
on Academic Achievement Tests and the Status of Academic Achievement of
Students With Developmental Disabilities. Seoul: Korea Institute for Special
Education.
 100

Patton, M. Q. (2002). Qualitative evaluation and research method (3rd edition).

Thousand Oaks, CA: Sage.

Porterfield, S. L. (2002). Work choices of mothers in families with children with

disabilities. Journal of Marriage and Family, 64, 972-981.

Pun, S. H., Ma, J. L. C., & Lai, K. C. C. (2004). In search of perfect motherhood for
imperfect children-experiences of 22 Chinese mothers. Child and Family
Social Work, 9, 285-293.

Read, J. (2000). Disability, the family, and society: Listening to mothers. Buckingham,
UK: Open University Press.

Rhi, B. (1998). Mental illness in its Confucian context. In W. H. Slote & G. A. Devos
(Eds.), Confucianism and the family (pp. 285-310). Albany, NY: State
University of New York Press.

Roy, W. G. (2001). Making societies: The historical construction of our world.

Thousand Oaks, CA: Pine Forge Press.

Santelli, B., Turnbull, A., & Higgins, C. (1997). Parent to parent support and health
care. Family Matters, 23. 303-306.

Santelli, B., Turnbull, A., Marquis, J., & Lerner, E. (1997). Parent-to-parent programs:
A resource for parents and professionals. Journal of Early Intervention, 21, 73-
83.

Singh, I. (2004). Doing their jobs: Mothering with Ritalin in a culture of mother-blame.
Social Science & Medicine, 59, 1193-1205.

Singer, L., & Farkas, K. J. (1989). The impact of infant disability on maternal
perception of stress. Family Relations, 38, 444-449.

Skinner, D., Bailey, D. B., Correa, V., & Rodriquez, P. (1999). Narrating self and
disability: Latino mothers’ construction of identities vis-à-vis their child with
special needs. Exceptional Children, 65, 481-495.

Skinner, D., & Weisner, T. (2007). Sociocultural studies of families of children with
intellectual disabilities. Mental Retardation and Developmental Disabilities
Research Reviews, 13, 302-312.

Smith, C. (2003). Moral, believing animals. New York: Oxford University Press.
 101

Stauss, A. L., & Corbin, J. (1990). Basics of qualitative research: Grounded theory
procedures and techniques. Newbury Park, CA: Sage.

Schwandt, T. A. (2000). Three epistemological stances for qualitative inquiry:

Interpretivism, hermeneutics, and social constructionism. In N. K. Denzin & Y.
S. Lincoln (Eds.), Handbook of qualitative research (2nd ed., pp. 189 – 214).
Thousand Oaks, CA: Sage.

Thompson, L., & Walker, A. J. (1995). The place of feminism in family studies.
Journal of Marriage and the Family, 57, 847-865.

Tong, R. P. (1998). Feminist thought: A more comprehensive introduction. Boulder,

CO: Westview Press.

Traustadottir, R. (1991). Mothers who care: Gender, disability, and family life.
Journal of Family Issues, 12, 211-228.

Traustadottir, R. (2000). Disability reform and women’s caring work. In M. H. Meyer

(Ed.), Care work: Gender, class, and welfare state (pp. 249-269). New York:
Routledge.

Tu, W. (1998). Probing the “Thee Bonds” and “Five Relationships” in Confucian
humanism. In W. H. Slote & G. A. Devos (Eds.), Confucianism and the family
(pp. 121-136). Albany, NY: State University of New York Press.

Turnbull, A. P., & Turnbull, H. R. (1997). Families, professionals, and exceptionality:

A special partnership. Upper Saddle River, NJ: Prentice-Hall & Merrill.

United States Government Accountability Office (2005). Special education: Children

with autism. Washington, DC: GAO

Walzer, S. (2004). Encountering oppositions: A review of scholarship about

motherhood. In M. Coleman & L. H. Ganong (Eds.), Handbook of
contemporary families: Considering the past, contemplating the future (pp.
209-223). Thousand Oaks, CA: Sage.

Weedon, C. (1997). Feminist practice and poststructuralist theory (2nd ed.). Malden,
MA: Blackwell.

White, M., & Epston, D. (1990). Narrative means to therapeutic ends. New York:
Norton.
 102

Whyte, S. R., & Ingstad, B. (1995). Disability and culture: An overview. In B. Ingstad
& S. R. Whyte (Eds.), Disability and culture (pp. 3-34). Berkeley, CA:
University of California Press.

Wishy, B. (1968). The child and the republic: The dawn of modern American child
nurture. Philadelphia: University of Pennsylvania Press.

Yang, S., & Rosenblatt, P. C. (2001). Shame in Korean families. Journal of

Comparative Family Studies, 32, 361-375.

Yang, S., & Rosenblatt, P.C. (2008). Confucian family values and childless couples in
South Korea. Journal of Family Issues, 29, 571-591.
 103

APENDICES
 104

Appendix A
Inventory for Severity of Autism Spectrum Disorders

The purpose of this inventory is to obtain information about the severity of the
condition of a child with autism spectrum disorders. This inventory was developed by
modifying the diagnostic criteria for autistic disorders of the Diagnostic and Statistical
Manual of Mental Disorders 4th edition (DSM-IV).

1. Birthday of the child (MM/DD/YY): _________________________________

2. Gender: Male Female

3. Medical or Educational Diagnosis:___________________________________

4. When was the child diagnosed? (MM/YY) ___________________________

5. How does the child do in the following areas?

Areas Rarely Sometime Always

Social Uses nonverbal
Interaction interactions 1 2 3 4 5
(e.g., eye-to-eye
gaze)

Shows age
appropriate peer 1 2 3 4 5
relationships

Shows social
and emotional 1 2 3 4 5
reciprocity (e.g.,
exchange
greeting)

Shares
enjoyment or 1 2 3 4 5
interests with
other people
 105

Areas Rarely Sometime Always

Communication Uses verbal

communication 1 2 3 4 5

Initiates
communication 1 2 3 4 5

Communication Repeats certain

(continued) words or phrases 1 2 3 4 5

Participates in
make-believe 1 2 3 4 5
play

Stereotyped Flexible with

Behaviors changes in 1 2 3 4 5
routine

Repeats certain
behaviors (e.g., 1 2 3 4 5
hand flapping)

Shows intense
interests or 1 2 3 4 5
focuses on
something over
a long period of
time

Shows interests
or focus on parts 1 2 3 4 5
of objects
 106

Appendix B
Screening Questions for Eligibility

Thank you for your time and interest in the study. I have some questions to determine
your eligibility for the current study. I will read questions and choices to you, and you
can choose an answer that explains your situation most appropriately.

I will ask you about your child who has autism. Then I will ask questions about you
and your spouse. Do you have questions so far?

1. Do you have at least one child who is diagnosed with autism?

a. Yes
b. No

2. When is the child’s birthday? (MM/DD/YY)

3. What is the birth order of the child?

4. Is the child a boy or a girl?

5. When was he or she diagnosed with autism? (MM/YY) How old was he or she
at the time of diagnosis?

6. How does he or she do in the following areas? (Inventory of severity of autism

spectrum disorders)

7. How have professionals described your child’s condition?

 107

Now, I will ask some questions about you and possibly about your spouse.

1. First, how much education have you completed up till now?

a. No High School Diploma nor GED
b. High School Diploma (or GED)
c. Associate Degree
d. Bachelor Degree
e. Masters Degree or Above

2. Are you currently employed?

a. No
b. Yes

2.1. If you are employed, can you tell me what types of work you do? How
many hours per week do you work?

3. Are you currently married?

a. No
b. Yes

3.1. If you are married, can you tell me how much education your spouse has
completed up till now?
a. No High School Diploma nor GED
b. High School Diploma (or GED)
c. Associate Degree
d. Bachelor Degree
e. Masters Degree or Above

3.2. If you are married, is your spouse currently employed?

b. No
c. Yes

3.3. If your spouse is currently employed, what type of work does he do? How
many hours per week does he work?

4. How would you describe your race or ethnicity?

4.1. How would you describe your spouse’s race or ethnicity?

 108

Thank you for answers. You will receive a call from me about your eligibility within a
few days. You may or may not be selected for the current study depending on the
criteria we are looking for. If your situation meets the criteria of the study, you will be
asked to schedule an interview.

In case you are not eligible for the current study, would you be still interested in
hearing from us for another study?

YES NO

Thank you very much again.

 109

Appendix C
Interview Protocol

Mothering a Child with Autism Spectrum Disorder

1. The birth of a child is often an experience mothers remember well. Can you

tell me about the birth of your child?

2. How was the diagnosis of [insert the diagnosis] made? Who first noticed

something was different about your child? Had you heard about autism before

your child’s diagnosis? How much did you know about autism before the

diagnosis?

3. How have your expectations for your child changed, if at all, as a result of

his/her diagnosis?

4. In what way, if any, did your ideas about yourself change from before to after

you had your child with ASDs?

5. What did ‘being a mother’ mean to you before your child was born? What does

‘being a mother’ mean to you now?

Discourses related to good mothering

1. What do most people think makes a good mother? Are there other ways that

people think a woman can be a good mother?

2. What do most people think makes a bad mother? Are there other ways a

woman can be thought of as a bad mother?

3. In your personal view, what makes a good mother? A bad mother?

 110

4. Has having a child with ASD influenced your view of what makes a good

mother? If so, how? Has having a child with ASD influenced your views of

what makes a bad mother? If so, how?

5. What do you think that your relatives (e.g., husband, parents, parents-in-laws,

and cousins) think makes a good mother to a child with a disability? How do

these ideas influence your view of your own mothering, if at all?

6. What do you think that professionals (including teachers) think makes a good

mother to a child with a disability? How do these ideas influence your view of

your own mothering?

7. What do you think neighbors and friends think makes a good mother to a child

with a disability? How do these ideas influence your view of your own

mothering?

Discourses related to disability, especially autism spectrum disorders

1. What did you think about people with disabilities before your child was born?

What do you think now?

2. What do you think that your relatives (e.g., husband, parents, parents-in-laws,

and cousins) think about people with disabilities? How do you know?

3. What do you think that professionals (including teachers) think about people

with disabilities? How do you know?

4. What do you think your neighbors and friends think about people with

disabilities? How do you know?

 111

5. What did you think about people with ASDs before your child was diagnosed?

What do you think now?

6. What do you think that your relatives think about people with ASDs? How do

you know?

7. What do you think that professionals (including teachers) think about people

with ASDs? How do you know?

8. What do you think that your neighbors and friends think about people with

ASDs? How do you know?

 112

Appendix D
Demographic Information

Participant Identification Number ____________________________

I. Participant:

1. Birthday (MM/DD/YY): ___________________________________________

2. Education Level:
a. No High School Diploma nor GED
b. High School Diploma (or GED)
c. Associate Degree
d. Bachelor Degree
e. Masters Degree or Above

3. Household Income:
a. Less than $24,999
b. $25,000 -- 39,999
c. $40,000 -- 59,999
d. $60,000 – 74,999
e. $75,000 – 99,999
f.$100,000 more

4.1 Employment:
a. Not employed
b. Part time employed less than 20 hrs/wk
c. Part time employed more than 20 hrs/week but less than 36 hrs/wk
d. Full time employed

4.2 Type of Work (if employed or previously employed)

 113

5.1 Current Marital Status:

a. Never Married
b. Divorced
c. Widowed
d. Married

5.2 Educational Level of Spouse (if currently in married relationship)

f. No High School Diploma nor GED
g. High School Diploma (or GED)
h. Associate Degree
i. Bachelor Degree
j. Masters Degree or Above

5.3 Employment of Spouse (if currently in married relationship)

a. Not employed
b. Part time employed less than 20 hrs/wk
c. Part time employed more than 20 hrs/week but less than 36 hrs/wk
d. Full time employed

5.4 Spouse’s Type of Work (if currently in married relationship, and spouse is
employed)

6. How many children do you have?

7. What is your religious preference?

7.1 If you are affiliated with religious organization, how religious are you?
 114

II. Target Child:

1. Birthday (MM/DD/YY): __________________________________________

2. Birth order:

3. Gender: Male Female

4. Medical or Educational Diagnosis:___________________________________

5. When was the child diagnosed? (MM/YY) ___________________________

6. What grade level is the child in? ____________________________________

7. Is your child included in the regular classroom?

8. Is the child receiving any service?

If he is receiving services, then what kinds of services?

Speech Therapy _____________________________

Occupational Therapy ________________________

Physical Therapy_____________________________

Other services________________________________