Education, Faculty of
Educational and Counselling Psychology, and Special Education (ECPS), Department of
DSpace
UBCV
Wallace, Glenda
Master of Arts - MA
University of British Columbia
This study explored the experiences of immigrant parents caring for their child with autism. It has been suggested that families living with a child with autism are more likely to experience higher levels of stress compared to families who have typical children. Increased stress is also evident in immigrant families as they are exposed to new beliefs, values, and world views. Literature suggests that the experience of immigrant families and autism has not been explored. Hence, an exploratory investigation was conducted to investigate questions pertaining to these parents' experiences, and to generate questions for further research. A narrative paradigm was employed and focused on the experiences of three pairs of immigrant parents caring for a child with autism. The participants interviewed shared their experiences from their countries of origin; their current situations in Vancouver, B.C.; and their speculations and insights about the future. The narrative interviews were audio-taped, transcribed, and analyzed to develop a rich description of the participants' experiences. A systems - ecological approach was used to examine the topics in terms of relationships and subsequently applied to Christa Hoffman-Riem's conceptualization of "emotional normalization" (Hoffman-Riem, 1980). Each of the experiences described in this study was unique and reflected the experiences of the primary participants from their own perspectives. Parents were primarily concerned about their child with autism as compared to the stresses related to immigration. From these experiences, common issues emerged in areas such as behaviour; social support; communication; family functioning styles and family related concerns; general stress; self-care; religion and spirituality; integration; finances; child care; formal and informal support systems; parent advocacy; education and related services; independence and future concerns.
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A NARRATIVE STUDY OF THE EXPERIENCES OF IMMIGRANT PARENTS IN CARING FOR THEIR CHILD WITH AUTISM by GLENDA WALLACE B.A., The University of British Columbia, 1990 BEd., The University of British Columba, 1992 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS in THE FACULTY OF GRADUATE STUDIES (Department of Counselling Psychology) We accept this thesis as conforming The Univerisity of British Columbia September, 1998 © Glenda Wallace, 1998 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of Coi^/SCLLlfJG PS^CrfVUDO^ The University of British Columbia Vancouver, Canada Date Och>t>er /3t f?1& . DE-6 (2/88) Abstract This study explored the experiences of immigrant parents caring for their child with autism. It has been suggested that families living with a child with autism are more likely to experience higher levels of stress compared to families who have typical children. Increased stress is also evident in immigrant families as they are exposed to new beliefs, values, and world views. Literature suggests that the experience of immigrant families and autism has not been explored. Hence, an exploratory investigation was conducted to investigate questions pertaining to these parents' experiences, and to generate questions for further research. A narrative paradigm was employed and focused on the experiences of three pairs of immigrant parents caring for a child with autism. The participants interviewed shared their experiences from their countries of origin; their current situations in Vancouver, B.C.; and their speculations and insights about the future. The narrative interviews were audio-taped, transcribed, and analyzed to develop a rich description of the participants' experiences. A systems - ecological approach was used to examine the topics in terms of relationships and subsequently applied to Christa Hoffman-Riem's conceptualization of "emotional normalization" (Hoffman-Riem, 1980). Each of the experiences described in this study was unique and reflected the experiences of the primary participants from their own perspectives. Parents were primarily concerned about their child with autism as compared to the stresses related to immigration. From these experiences, common issues emerged in areas such as behaviour; social support; communication; family functioning styles and family related concerns; general stress; self-care; religion and spirituality; integration; finances; child care; formal and informal support systems; parent advocacy; education and related services; independence and future concerns. Table of Contents Abstract _ _ ii Table of Contents iv Acknowledgements viii Chapter I. Introduction _ 1 Previous Investigations _ 3 Rationale for the study 4 Definition of Terms 6 Research Approach 6 Overview of the Thesis 7 Chapter II. Literature Review 9 Experiences of Parents of a Child with a Disability 9 Experiences of Immigrants 10 Personal Resources 11 Parents' Use of Personal Resources in Caring for a Child with a Disability 11 Immigrant Families' Use of Personal Resources 11 Social Support 12 Social Support and Parents Caring for a Child with A Disability 12 Informal Social Support _ 13 Formal Support Systems in British Columbia 14 Respite Care 15 Behaviorial Support 16 Self-Help Support Groups 16 Educational Supports 17 Social Support and Immigrant Families 20 Family Functioning 21 Family Functioning and Parents Caring for a Child with a Disability 21 Commitment 22 Flexibility 22 Optimism 22 Family Functioning and the Influence of Immigration 22 Systems-Ecological Perspective 24 Families as Systems ____ 24 Emotional Normalization 25 Summary of the Literature Review 25 Chapter III. Methodology 27 Basic Assumptions 27 Rationale 28 Relationships 29 Personal Background 32 Selection of the participants 33 In - Depth Interview 34 Analysis 36 Trustworthiness of the Study 38 42 Chapter IV. Case Portraits Portrait of a Korean Family H j L Portrait of a Philippino Family 4 9 Portrait of an English Family 5 5 Chapter V. Discussion 6 6 The Interviews 6 6 The Relationships 6 8 Intra-familial Strengths 7 0 vi Family Identity 71 Commitment 71 Appreciation 71 Allocation of Time 72 Sense of Purpose 73 Congruence 74 Information Sharing 75 Communication _ 75 Rules and Value Systems 76 Coping / Resource Mobilization 77 Coping Strategies 77 Problem Solving Abilities 77 Optimism 78 Flexibility and Adaptability 79 Balance 81 Extra-familial relationships 81 The Education System 81 The Ministry for Children and Families 85 Autism Society of British Columbia 87 Finances 88 Informal Support System 88 Intra-, Inter-, and Extra-Familial Emotions 88 Sadness 89 Frustration 89 Guilt and Self-Blame 90 Anxiety 90 Fear 91 Embarrassment 91 Courage 92 Parents as Agents 93 vii Searching for Normality 94 Emotional Normalization 95 Practical Implications 97 Implications for Future Research 102 Summary _ 105 References 107 Appendix A - Bronfenbrenner's Ecological Model 117 Appendix B - Letter of Consent 118 Appendix C - Letter of Information _____ 120 Acknowledgements I would like to thank the parents who contributed their time and shared their thoughts, memories, hopes, and feelings with me. Their experiences provided an invaluable perspective to an understanding of the lives of immigrant parents caring for their child with autism. This paper would not have been written without their cooperation and participation. My sincere thanks goes out to them. 1 Chapter I Introduction Autism is a developmental disability characterized by qualitative impairments in social interaction and communication, and a markedly restricted repertoire of activities and interests (Fong & Wilgosh, 1992). In many ways, the characteristics of autism are similar to the experiences of immigrant families caring for a child with autism, which is the focus of this thesis. The feeling of isolation is being all by oneself even though there are people around. The 'self depends on the sense of place an individual has, not only physically, but also socially in terms of mutual obligations, commitments, and relationships (Ellis, 1994). Being burdened with linguistic handicaps, behavioral abnormalities and problems relating to others, a child with autism depends on his/her family to help plug him/her in. Families, more than any other entity, play an integral role in the development of their children (McDonald, Couchonnal, & Early, 1996). In fact, children with disabilities are more likely to be cared for by their families than any other social organization (McDonald et al., 1996). Generally, the family attempts to accommodate the developmental needs of its members and adapt to the demands of major events and changed social circumstances (McDonald et al., 1996). Bronfenbrenner (1979) designed an ecological model which proposed that the individual and the family are affected by their immediate social and physical environment as well as by the interrelationship among the various settings of their immediate environment. They are further influenced by more remote social settings, such as economic and political processes, which, in turn, are influenced by cultural attitudes and ideologies (Strier, 1996). Bronfenbrenner's model is a useful approach to understand 2 immigrant parents caring for their children with autism. To illustrate, immigration often involves major changes in the physical, cultural, and social settings in which families function and develop (Strier, 1996). Consequently, the family is often confronted with unfamiliar challenges as members attempt to build new relationships. Having a child with autism combined with a lack of interaction with a foreign community may enhance feelings of isolation (Mesibov & Schopler, 1984; Strier, 1996). It has been said that culture is communication; and language, both verbal and nonverbal, is the primary mediator of our interactions with others. Language is more than words; it is a way of thinking and viewing the world (Hanson, 1992). For many immigrant families caring for a child with autism, messages cannot be adequately communicated, and thus the establishment of relationships is difficult. Consequently, feelings of frustration and isolation might prevail. Different patterns of interaction are required and each have a set of rules and norms. In a new culture with a new communication style, the establishment of new relationships take time. Traditionally, the white middle class norm has informed our professional understanding of families living with autism (Hanson, 1990; Strier, 1996; Weick & Saleebey, 1995). As immigrants constitute a large percentage of the population, it is crucial that professionals value and recognize how culture influences family behavior. Moreover, in order to be an effective helper, an understanding of the different cultural perspectives that exist in issues surrounding child rearing, disabilities, change and intervention, treatment, family and family roles, and communication is essential (Hanson, 1990). 3 Previous Investigations The body of literature on the effects of a disability on families present an "overwhelming and confusing body of knowledge characterized by competing hypotheses, conflicting findings, and tentative conclusions" (Jensen, 1992). Generally speaking, however, the current view in the literature on families of children with autism and other special needs is that these families are more likely to experience significantly higher levels of stress compared to families who have typical children (Beavers, Hampson, Hulgus, & Beavers, 1986; Donenberg & Baker, 1993; Factor, Perry, & Freeman, 1990; Fong & Wilgosh, 1992; Gallagher, Beckman, & Cross, 1983; Halroyd & McArthur, 1983; Hanson & Hanline, 1990; McDonald et al., 1996; Potasznik & Nelson, 1984; Rousey, Best & Blacher, 1992; Wikler, 1981). It is important to note however that in facilitating change and maintaining continuity, many families have shown an ability to adapt to a variety of stressful events (Hanson, 1990). On the other hand, this stress may lead to family dysfunction requiring societal intervention (DeMyer, 1979; Fong & Wilgosh, 1992; Wikler, 1981). Research on families of special needs children has repeatedly indicated that the increased stress can result in social isolation (Cook, 1963; Cummings, Bailey, & Rie, 1966; Davis & MacKay, 1973; Erickson, 1968; Farber, 1975; McAllister, Butler, & Lei, 1973), and there are increased indicators of stress in the parents (Fong & Wilgosh, 1992; Bosch, 1996; Cummings et al., 1966; Cook, 1963; Erickson, 1968; Gallagher et al, 1983; McDonald et al., 1996). Increased stress is also evident in families who are forced to live in a new culture as they are bombarded by unfamiliar beliefs, values, self-views, and world views. These families are confronted by new cultural norms and are forced to learn new ways of thinking and behaving as different child rearing practices and ideologies held by the socializing agents of the host culture are dominant (Strier, 1996). On a basic level, the relations between immigrant parents and their children are vulnerable to the risks of immigration (Strier, 1996). Culture change also poses obstacles such as language difficulties, loss of friends and family, and the need to learn appropriate new social skills. Consequently, many families often experience psychological stress and isolation (Cross, 1995; Strier, 1996). A literature review reveals that the subject, 'immigrant families and autism' has not been explored, and thus is the impetus for this study. Some parents come to Canada for their children's welfare only to find themselves isolated (Hee Nah, 1993). Indeed, the purpose of this exploratory study is to provide a foundation for subsequent research, generate hypotheses, and perhaps enrich future policies and programs. Rationale for the Study "Culture is the widening of the mind and of the spirit" (Hanson, 1990). Although it is a challenge to understand the many different customs, beliefs, and practices in our pluralistic society, it is essential for professionals who work with immigrant families caring for a child with autism to understand each family's value and belief system and attempt to eliminate their own inherent biases. The opportunity is for increased respect, trust, and understanding that will enable helpers and immigrant families to work together more harmoniously and effectively (Hanson, 1990; Sontag & Schacht, 1993). To empower an immigrant family, helpers must first honour the immigrants' home cultures and respect their knowledge and understanding, be sensitive to their decisions and choices, and be prepared to use the family's own expertise (Cochran, 1992; Hanson, 5 1990; Hirayama & Cetingok, 1988; Sontag & Schacht, 1993; Turnbull & Turnbull, 1994; Weick & Saleeby, 1995). "Empowering relationships develop over time and it takes time for participants to recognize the value that the relationship holds. Empowering relationships involve feelings of connectedness that are developed in situations of equality, caring and mutual purpose and intention"(Connelly & Clandinin, 1990). In a narrative interview, we can connect with these families and understand an immigrant family's personal dimension. Over the past decade, professionals have been encouraged to collaborate with families of persons with special needs and mental illness, as families of children with disabilities are valuable resources for professionals who wish to help them (Collins & Collins, 1990; DeChillo, 1993: Grunebaum, 1986; Hatfield & Lefley, 1987; Lazar, 1988). Moreover, the empowerment of immigrant families, a goal of social work, relies on effective collaboration between immigrant families and helping professionals (Gold & Bogo, 1992; Hirayama & Cetingok, 1988; Strier, 1996). A review of previous research suggests that there is a lack of information pertaining to immigrant parents caring for their child with autism. It was hoped that my research would provide insight into the functioning of these immigrant families. It endeavored to highlight the concerns as well as the positive elements in their day-to-day experiences in caring for their child with autism. The purpose of this study was to understand the experiences of immigrant parents in caring for their child with autism. Parental strengths, ecological context of families, and instrumental needs including child care, financial, informational, and emotional parental needs were hoped to be highlighted. 6 Definition of Terms This study explores the experiences of immigrant parents in caring for their child with autism. For the purpose of my thesis an 'immigrant' is defined as one who comes as a permanent resident to Canada. 'Autism' refers to a condition present from childhood characterized by complete self-absorption and a reduced ability to respond to or communicate with the outside world (Hart, 1993). Moreover, it is a severe, life-long, developmental disability, which affects an individual's behavior, communication skills, cognitive abilities, and social relationships (Fong & Wilgosh, 1992). It is identified by the presence of a set of behavioral symptoms that include the failure to develop normal social relationships; abnormalities in speech, language, and communication; abnormal relationships to objects, events and sensations; and a pattern of developmental delays or differences (Fong & Wilgosh, 1992). It is interesting to note that autism has been documented to be more stressful for families than other childhood disorders such as mental retardation or chronic physical illness (Bristol, 1984; Cummings et al., 1966; Fong & Wilgosh, 1992, & Holroyd & McArthur, 1976). 'Caring' refers to the ability to support and nurture one's children. Research Approach A narrative approach was employed for this research as this methodology is considered to be ideal in highlighting the living elements of relationships and the psychological processes (Jensen, 1992). Three immigrant couples from different countries were selected on an opportunistic basis, and were independently interviewed. In all cases, participants were parents caring for one or two primary aged (5-8 years) children with autism. Case portraits were developed which provided a collection of 7 perceptions from the participants used in the analysis. This method is an effective way to draw out valuable detailed information. According to Strickland (1994), participants are in the best position to make observations about "what one thinks one did in what settings in what ways for what felt reasons" (Strickland, 1994). In the analysis, a systems-ecological model was used to review the themes in terms of intra-, inter-, and extra-familial relationships. As parents caring for a child with autism attempt to achieve normality in relation to families living with typical children, Christa Hoffman-Riem's conceptualization of emotional normalization is useful in that it helps describe the family's quest to overcome the unordinary circumstances in caring for a child with autism (Hoffman-Riem, 1980). Overview of the Thesis This paper is organized into five chapters. Chapter 1 overviews the ecological context of immigrant families in caring for their child with autism. Previous investigations pertaining to autism and immigrants are discussed. It also includes the rationale for the study, definition of terms, and the research approach. Chapter 2, through an examination of the literature on autism and immigrants, discusses the information in two strands, immigrants and autism. The literature is reviewed within categories including personal resources, social support, and family functioning styles. Chapter 3 explains the methodology used. My personal perspective, design, procedures, selection of the participants, in-depth interview, analysis, the systems-ecological perspective, results, and strengths and limitations are discussed as well. Three case portraits of families from Korea, the Philippines, and England are included in Chapter 4. Chapter 5 includes the discussion of the findings. Themes are sorted into intra-familial and extra-familial 8 relationships. Intra-familial relationships include family identity, information sharing, and coping/resource mobilization. Extra-familial relationships include education, Ministry for Children and Families, finances, and informal support systems. As well, intra-, inter-, and extra-familial emotions are discussed. deCharm's concept of agency is useful in describing these parents (deCharms, 1976). Finally, Christa Hoffman-Riem's conceptualization of emotional normalization is discussed. This paper concludes with a discussion of practical and future implications. 9 Chapter II Literature Review An abundance of literature exists on families living with children with autism and/or other disabilities (Beavers et al., 1986; Beckman et al., 1983; Bosch, 1996; Bristol & Schopler, 1984; Cutler & Kozoff, 1987; DeMyer, 1979; Donenberg & Baker, 1993; Fong & Wilgosh, 1992; Hanson & Hanline, 1990; Sherman & Cocozza, 1984). As well, much has been written pertaining to immigrant families; however, there is no literature available which combines 'immigrant families living with a child with autism'. Current and relevant information on each of these topics is reviewed in this section. Experiences of Parents of a Child with Disabilities The literature is consistent in identifying numerous stresses presented in families of persons with developmental disabilities (Beavers et al., 1986; Beckman, et al., 1983; Bosch, 1996; Donenberg & Baker, 1993; Fong & Wilgosh, 1992; Hanson & Hanline, 1990; Sherman & Cocozza, 1984). Stress in families of children with autism has been documented as well (Breslau & Davis, 1986; Bristol & Schopler, 1984; Cutler & Kozoff, 1987; DeMyer, 1979; Fong & Wilgosh, 1992; Schopler & Mesibov, 1984). Parenting a child with autism likely produces stresses for the family because of the magnitude, intensity, duration, and unpredictability of the situation (Fong & Wilgosh, 1992). For example, parental stress is often attributed to the child's poor communication skills and the child's inability to understand developmental tasks. As well, infants with inconsistent temperaments or less social responsiveness may contribute to higher levels of stress in the parents (Bosch, 1996). Studies have drawn attention to a multitude of issues experienced by individuals with disabilities and their families pertaining to family resources, social 10 support, and family functioning. The demands of caring for a child with special needs may be discrepant with the family's financial, social, or physical resources, thus contributing to stress. Most literature suggests that living with autism on a daily basis can leave parents exhausted, pessimistic, and at risk for burnout (Factor, Perry, & Freeman, 1990; Schopler & Mesibov, 1984; Sullivan, 1979). Generally, families of children with autism report feelings of stress on each parent individually, the marriage, and other siblings (Fong & Wilgosh, 1992). Because the child with autism appears physically normal and often extraordinarily attractive, whether or not the child has autism is ambiguous. Mothers often feel responsible for their child's atypical behavior until proven otherwise. Often these feelings of guilt and inadequacy are reinforced by professionals who imply either that there is no problem or that the problem is one of parental mismanagement. Indeed, the ambiguity of the child's autism can significantly increase the risk of family crisis (Schopler & Mesibov, 1984). Experiences of Immigrants The adaptation experiences of immigrants vary according to their place of origin, occupation and education, traditional values, and socialization (Hee Nah, 1993; Kessler-Harris & Yans-McLaughlin, 1979). The literature has stressed some common aspects of experience among the immigrants, specifically in language (Portes & Rumbaut, 1990), employment (Portes & Rumbaut, 1990), adjustment stress (Hee Nah, 1993), and interpersonal conflict (Hee Nah, 1993). Indeed, immigrants are subject to stress that natives seldom experience (Cross, 1995). 11 Personal Resources Parents' Use of Personal Resources in Caring for a Child with a Disability For families living with autism, the lack of resources can often be a source of stress. The economic burden of caring for a developmentally disabled child is undoubtedly much more demanding for lower class families (Sherman & Cocozza, 1984). Understandably, financial needs can be a source of stress for parents of children with developmental delays. Expenses can include hospitalization fees, specialized equipment, therapeutic and behavioural services, medications, and dietary supplements (Bosch, 1996). It has been reported that families who keep a child with special needs at home are more likely to show downward social mobility than those who utilize external assistance (Sherman & Cocozza, 1984). Secondly, many parents never get a break from their child as it is often extremely difficult to obtain suitable child care arrangements (Fong & Wilgosh, 1992; Wikler, 1981). Young children with unusual care giving requirements may demand specific amounts of time and energy from their parents which can contribute to parental fatigue (Bosch, 1996). Finally, some parents feel that their greatest need is informational resources, and they do not have access to enough information for various reasons. Parents reported that they are in constant search for information about services currently available and those which might be needed in the future (Bosch, 1996). Immigrant Families' Use of Personal Resources An immigrant family may also lack some personal resources (Hirayama & Cetingok, 1988). As immigrants are transplanted into an unfamiliar culture, many experience a sense of powerlessness (Hirayama & Cetingok, 1988). One factor which contributes to this sense of powerlessness is the lack of money. Economic survival is the 12 foremost concern for most immigrants (Hee Nah, 1988). It has been noted that professional immigrants often begin at the lowest level in their occupational field, regardless of their premigration experience credentials, and they often face underemployment (Hee Nah, 1988). Certainly, the data pertaining to resources with families living with children with special needs and immigrant families is pertinent; however information on resources for immigrant families living with a child with autism has yet to be researched. Social Support Social Support and Parents Caring for a Child with a Disability Another important area which appears to influence the coping ability of parents with a child with special needs is social support (Bristol, 1984; Holroyd, 1974). Satisfaction with social support is often more important than the social support actually received. Satisfaction has been linked to feelings of maternal competence, the maternal ability to balance multiple roles, and instrumental support from informal networks (Bosch, 1996; Bristol, 1984; Fong & Wilgosh, 1992). Some researchers have also found that mothers of children with autism who experience the least stress receive the greatest support, particularly from their spouses and relatives (Fong & Wilgosh, 1992). Stress occurs when parents perceive that they lack the resources to act on certain situations (Bristol & Schopler, 1983). Support from spouses may be especially crucial (Belsky, 1984; Bristol & Schopler, 1983; Friedrich, Wilturner, & Cohen, 1985). Marital satisfaction may be difficult to attain. That is, fathers and mothers perceive and cope with their children with special needs in different ways (Rousey et al., 1992). To illustrate, some authors assert that mothers often blame themselves for their child's disorder and 13 suffer from more psychiatric problems such as reactive depression involving increased physical and psychological tension (Fong & Wilgosh, 1992; Mesibov & Schopler, 1984; Rousey et al., 1992). Parents may experience a grieving period in response to this unexpected life event; however the grieving is not resolved in a single phase, but may occur at various stages throughout the family life cycle (Bosch, 1996). In fact, community workers can "overestimate" the impact of the initial crisis and underestimate that of later grief episodes even though they are aware of the chronic nature of parental stress (Bosch, 1996). Few investigators have looked at fathers; however, it has been noted that fathers withdraw from family interactions altogether (Mesibov & Schopler, 1984), or that, sometimes, fathers report a reaction to the mother's depression and preoccupations with the child's autism (Fong & Wilgosh, 1992). The different responses can negatively influence the marital relationship (Weick & Saleebey, 1995). Nonetheless, mothers' reports of marital satisfaction are highly correlated with her coping behaviors (Wikler, 1981). Informal Social Support Informal support systems have been found to be negatively correlated with the amount of stress perceived by parents of infants with developmental delays. Informal support systems such as friendships, in spite of their importance, may be difficult to establish. Research suggests that parents of children with special needs often experience stigmatized social interactions. They face hostile stares, judgmental comments, murmurs of pity, and intrusive requests for personal information (Wikler, 1981). Although parents report that they do learn to cope with the stigmatized interactions successfully, the growing discrepancy between the child's size and mental functioning tends to increase 14 the number of stressful encounters (Wikler, 1981). Research suggests that the richest sources of information are other parents of children with autism, but these relationships pose problems due to the variability in autistic tendencies (Wikler, 1981). Research on the utilization of social services has indicated that ethnicity, income, geographic location, and disability status place an individual at risk for under utilization of services (Sontag & Schacht, 1993). Formal Support Systems in British Columbia Support from helping professionals can alleviate some stress (Bristol, 1984) and formal support services can foster the development of coping strategies; however, an effective formal support network can be hard to find (Farran, Metzger, & Sparling, 1986). Some parents go to specialists for advice and information, and they find that the advice offered is inadequate for handling the daily practical tasks of rearing a child with autism (Wikler, 1981). In fact, some parents start to resent professionals over time, and contend that they are more harmful than helpful (Mesibov & Schopler, 1984). One author stated that "too often, family therapists...have worked in ways that implicitly blamed the family" (Grunebaum, 1986). Working with professionals can intimidate some parents and can cause uneasy feelings (Bosch, 1996).Moreover, it has been documented that professionals harbor negative attitudes towards families of persons with special needs and have augmented the stress and guilt that families have already experienced (Appleton, 1974; Hatfield, 1978; Lamb & Oliphant, 1978). They often feel that the service delivery systems are 'unresponsive, fragmented, and dehumanizing' (McCallion & Toseland, 1993). Some parents report their help as having exclusionary and blaming attitudes (McDonald et al., 1996). It is known that early intervention for children with autism is 15 essential in order to reduce the long term impairments associated with autism in terms of both cost and the impact on the family and community. Without early diagnosis and intensive early intervention, the severe mental and social disabilities will continue. Consequently, treatment throughout their lives will be costly (British Columbia Council on Autism, 1998). More specifically, the current long waiting lists for services in B.C., and the decrease in services discourages opportunities for early intervention. Time is critical as a two or three year old will respond much more quickly to treatment than a five year old (B.C. Council on Autism, 1998). Respite Care. Respite care has been consistently noted as one of the support services families need to help them cope (Apolloni & Triest, 1983; Bristol & Schopler, 1983; Salisbury & Intagliata, 1986). Generally, parents evaluate respite care very positively and suggest that it has improved their quality of life (Apolloni & Triest, 1983; Cohen & Wils, 1985; Factor et al, 1990). Recent studies have indicated that respite care leads to a decrease in negative maternal attitudes towards the child with disabilities and increased positive family interaction in families living with children with special needs (Wikler, 1981). It is important to note that users of respite care tended to be parents of children who were lower functioning and had more behavior problems. Non-users tended to report higher levels of perceived social support (Fong & Wilgosh, 1992). In B.C., the Ministry for Children and Families has implemented strategies which focuses on providing support that allows a family to "retain its dignity" with the assistance of respite services (B.C. Council on Autism, 1998). Recently, funding has not been able to keep up with the numbers of children diagnosed, and consequently, services are often not 16 implemented until the family is in crisis and the child's difficult behaviors are safety concerns (B.C. Council on Autism, 1998). Behaviorial Support. Three programs provided for families living with a child with autism include the Laurel Group, Communication Behavior Instruction (C.B.I.), and the Provincial Resource Program, formerly called Gateway. These programs are subsidized by the Ministry for Children and Families in B.C. Many families in B.C. have found that these programs have been useful in the implementation of behaviour modification programs in their homes. One behaviour modification program that parents find helpful is the Applied Behavior Analysis approach (A.B.A.), also referred to as the 'Lovaas' type of behavior analysis. The aim of this method is to simplify what a child with autism has to learn into its smallest components and then help the child put those skills together into a more meaningful activity (Pugh, 1998). A.B.A. has shown to be effective in modifying severe behaviour disorders among children with autism (B.C. Council on Autism, 1998). In fact, numerous families in B.C. are having to pay for programs as many therapies that families find useful are not covered by a Medical Services Plan (B.C. Council on Autism, 1998). Self-Help support groups. Another source of support for family members living with someone with special needs is a self-help support group. Self-help groups for families of persons with autism have been found to provide a setting for the sharing of common problems and coping strategies for its members (Potasznik & Nelson, 1984). As well, when input from professionals is available and consistent, families report being better equipped to cope with the situation (Test & Stein, 1980; Weick & Saleebey, 1995). Some of the benefits of being a part of a self - help group include an increased level of 17 awareness; understanding that there are others like oneself, peer acceptance without stress; increased tolerance of others; and an opportunity to share concerns and interests with others. One group created by individuals with autism is the ANCA Development Club for people who have autism. Through structured interactions, autistic persons are able to learn about autism and how it affects them directly. C.A.N.A.D.A., or the Canadian Autistic National Association for Determined Adults, is another support group for people with Asperger's Syndrome and Autism. The Autism Society of B.C., through the Autism Support Network (A.S.N.) has established an Autism support network across the province. This network consists of individual parents, foster parents, and professionals. They have worked together to create Parent Support Groups throughout the province who are interested in autism. The network connects individuals and groups in B.C. with information and provides conferences. As well, these groups provide family support such as crisis counselling and referral information, life services planning, advocacy, parent training, liasons with professionals, resource agencies, and government agencies, community education, and a resource library. In addition, a volunteer buddy program and an integrated summer program are useful programs for families living with autism. Educational supports. The education system has the potential to help a family living with a child with autism. Currently, the Vancouver school system labels the child with autism, and the child gets categorized and treated accordingly (Jones, 1995). For example, a vast number of immigrant children with autism in the Vancouver School District learn in segregated settings for students with emotional disturbance or behaviour disorders, and the "identification-labeling-treatment process" occurs within this 18 framework (Fine & Carlson, 1992). Too often, students with autism who speak English as a second language in these programs fall increasingly behind while missing instruction in regular classes. "In some cases, what they miss is more important than what they get" (Willis, 1993). Research consistently finds that when families are involved in the educational process, children do better in school (Carlson, 1996). Active parental involvement is related to numerous positive educational outcomes for schools, parents, and students (Carlson, 1996). Despite evidence supporting the critical link between the family and school, as well as the considerable overlap of home and school socialization roles, genuine collaboration between these social systems is infrequent (Carlson, 1996). Moreover, research has consistently found that teachers tend to blame parents when children are experiencing difficulty in school. Thus, parent - school collaboration most often occurs within the context of crisis, tension, frustration, and defensiveness rather than within the context of a mutually supportive and respectful relationship. Teachers are not provided the training to establish strong working relationships with parents; thus, they remain reactive to crises (Carlson, 1996). The incompatibility between school culture and solution - oriented family/school meetings suggests that a considerable amount of inservice teacher training may be necessary to shift teachers' attitudes from attention and documentation of a child's problems to a focus on strengths and possibilities (Carlson, 1996). Literature suggests that many parents and teachers of children with autism support the mainstreaming philosophy in B.C. (B.C. Council on Autism, 1998). Parents strongly approve of the inclusion philosophy now endorsed by the B.C. Ministry of Education, 19 Skills and Training, but they worry about the dwindling of resources and trained personnel - both of which are in short supply in B.C.'s schools because of monetary limitations (B.C. Council on Autism, 1998). In some cases, children with severe forms of autism are denied an appropriate education because the system does not provide more specific programs designed to assist them to acquire skills which would encourage their participation in the regular classroom environment (B.C. Council on Autism, 1998). Sometimes they are given medical exclusions and suspended for an indefinite period of time. Consequently, the responsibility often lies with the family in helping them to prepare them for life in the community. At present, the Ministry for Children and Families does not provide services during school hours for families living with children with autism (B.C. Council on Autism, 1998). Special Education Technology (SET-B.C.) is a Provincial Resource Program established to assist school districts to educate students whose access to the curriculum is restricted primarily due to physical disabilities, visual impairments, and autism. This program is useful for families caring for a child with autism in that its main focus is the student, and the team meets with the school district teams to develop specific strategies. A look at the social support systems utilized by parents caring for a child with autism reveals the importance of both formal and informal support systems. Informal systems include friends and family. Formal systems include respite, self-help groups, and educational services. 20 Social Support and Immigrant Families Research on immigrant families reveals that language barriers; unfamiliarity with the local customs, rules, and norms; subtle discrimination and prejudice against them; and the loss of social support networks, status roots, and the "connectedness" that are found in their native environment enhance feelings of isolation (Hirayama & Cetingok, 1988). Until these families develop a new support system with various formal organizations such as schools, health care facilities, and the Ministry for Children and Families, they must adjust to the psychological and social stress alone. They are forced to learn a new set of behaviors and customs in order to establish new relationships. Although most immigrant families develop new support systems within or outside of their ethnic communities through personal relationships, voluntary associations, religious organizations, or other informal networks, some families fail to build relationships outside (Hirayama & Cetingok, 1988). It has been reported that cultural differences between families and the formal support system may affect service delivery. That is, cultural values may inhibit some families from discussing their personal lives and pressing issues with unfamiliar people. Hirayama & Cetingok claim that empowering immigrant families involves helping them cope effectively with their new environments by helping them develop and accept new roles and behaviors. As well, the helper must respect ethnic characteristics such as family loyalty, integration, cohesion, and mutual assistance (Hirayama & Cetingok, 1988). Some families may have family values that inhibit their reliance on outside help from the family (Bosch, 1996). Except for immigrants from English-speaking countries, the first problem an immigrant encounters is learning a new language (Hee Nah, 1993). Occupation 21 determines the level of language skills that will be required (Hee Nah, 1993). Many immigrants get stuck in low level, unskilled jobs and thus attain a minimum level of language skills (Hee Nah, 1993). Numerous immigrant families do not have extended family networks and neighbours on whom they can depend (Hirayama & Cetingok, 1988). When these are absent and when other supports are nonexistent, the family is forced to rely on its own inner resources. In such cases, the family is subjected to extreme stress (Hirayama & Cetingok, 1988). Moreover, many immigrants do not have the knowledge or information about where to seek help and many lack knowledge about civil, political, and legal systems. This can enhance feelings of alienation (Hirayama & Cetingok, 1988). The two factors which predict adjustment in many studies are relationships with others from one's home country and friendships with host country nationals (Cross, 1995; Furnham, 1988). In essence, satisfaction with one's social support network has been found to be inversely related to the experience of problems in living for a variety of populations (Turner, Frankel, & Levin, 1983). Family Functioning Family Functioning and Parents Caring for a Child with a Disability Family functioning is the third area which has received significant attention in the literature. A multitude of theories have struggled to explain why families confronted by similarly stressful situations, respond in different ways. Interpersonal, intrapersonal, and ecological variables have all been suggested as important factors in these differential responses (Gill & Harris, 1991). Family functioning includes a family's attitude, level of commitment, flexibility, and optimism. 22 Commitment. To begin, many theorists have argued that the relationship dimension of family functioning, which has also been referred to as integration (Potasnick & Nelson, 1984) or cohesion (Olson, Russell, & Sprenkle, 1983), is an important stress-meeting resource (Potasnick & Nelson, 1984). That is, the degree to which family members are mutually supportive of one another and open in expressing their feelings is critical. Flexibility. Another important dimension is the family's ability to be flexible and adaptable in times of stress (Potasnick & Nelson, 1984). Its ability to change its structure, share tasks and responsibilities, and have flexible roles to meet the changing demands within the environment are critical (Potasnick & Nelson, 1984). Often, internal conflict is evident within families of children with special needs which may cause problems for other siblings. The presence of a child with special needs may cause problems for the other siblings. That is, the child with disabilities may dominate the family's resources or another sibling may be expected to take on a mothering/support role against his/her will (McCallion & Toseland, 1993). Optimism. Similarly, families who have positive attitudes and are able to find satisfaction in other areas of life, cope more easily with the stresses of a child with special needs than do families who do not use these strategies (Sherman & Cocozza, 1984; Bristol & Schopler, 1983) Family Functioning and the Influence of Immigration Many researchers have probed the processes of immigrant family functioning and cross-cultural adjustment (de Anda, 1984; Cross, 1995; Hee Nah, 1993; Hirayama & Cetingok, 1988). Factors such as age, marital status, and experience in other cultures 23 often predict adjustment. (Cross, 1995; Furnham & Bochner, 1986; Searle & Ward, 1990; Ward & Kennedy, 1992). It has been noted that immigrant families with an interdependent self-construal are more apt to pursue a sense of belonging with others (Cross, 1995). Thus, the individual's thoughts, feelings, and behaviors are largely a function of his or her relationships with others and group memberships (Cross, 1995). In contrast, individuals with an independent self-construal separate themselves from relationships or group memberships (Cross, 1995). It is interesting to note that East Asians encourage self-reliance so that they will not be a burden on the group (Cross, 1995; Lo, 1998). Many immigrants report that intimate relationships are difficult and thus derive minimal support from them (Hee Nah, 1993). At present, there is a gap in the literature about immigrant families' functioning style and how they cope with the stresses of a child with autism. To conclude the literature review, it is important to note that other literature suggests that many families cope effectively and positively with the additional demands experienced in parenting a child with a disability (Krauss, 1993). Moreover, some research suggests that families of children with disabilities exhibit variability comparable to the general population in terms of parenting stress, family functioning, and marital satisfaction (Krauss, 1993). In fact, some authors claim that the stress of parenting a child with a disability brings some families closer together, and the rate of divorce in families of children with special needs does not differ significantly from families of typical children (Davis & MacKay, 1973; Wikler, 1981). Also, it has been documented that many immigrants thrive in a foreign community where they develop new support systems within or outside their ethnic communities through personal relationships, 24 voluntary associations, religious organizations, and other informal networks (Hirayama & Cetingok, 1988). Systems - Eco log ica l Perspective Famil ies as Systems A systemic framework such as the systems-ecological orientation considers the reciprocal interplay o f the ch i ld with autism within each system. Thus , in order to understand the experience o f immigrant parents caring for their ch i ld with autism. T h e microsystem, exosystem, and macrosystem within which they l ive w i l l be explored. Bronfenbrenner's systems-ecological framework is useful in developing our understanding o f immigrant parents caring for their children with autism. T h e term 'microsystem' refers to the relationship among the parents and chi ld with autism and the environment in an immediate setting such as their home, school, and playground. T h e 'mesosystem' refers to the interrelationship among the various microsystems o f wh ich the ch i ld with autism is a part. T h e 'exosystem' considers the specific social structures and institutions o f society such as transportation, social services, education, and mass media. T h e 'macrosystem' refers to the overall cultural and institutional patterns o f w h i c h the other systems are parts. Thi s includes the economic, polit ical , legal, social, and educational systems (Fine, 1994). (Refer to Append ix A ) It was thought that these perspectives might be helpful in explaining parents' interactions and relationships within these systems. T h e themes can be found in terms o f relationships that prevail in the microsystem, mesosystem, macrosystem, and exosystem in wh ich the parents reside. Immigrant families, like all families, are systems in themselves. E a c h family strives to be open, ongoing, goal-seeking, and self-regulated. ' O p e n ' refers to the parents 25 styles of operating within the families and with agencies in their external environments; they have open and honest exchanges with all family members and with people outside the families. 'Ongoing' refers to the state of flux that the families are in; family processes are dynamic. 'Goal seeking' described the parents' ambitions to help their children. Finally, self - regulated' refers to the families' rules which act as gatekeepers for the flow of information that flows into and out of the family systems (Becvar & Becvar, 1996). Emotional Normalization Indeed, Hoffmann-Riem's conception of 'emotional normalization' seems to be applicable to an understanding of immigrant parents experiences in caring for their child with autism both inside and outside of the family unit. To illustrate, the decision to move to another country is cause for a multitude of emotions including relief and happiness and fear and loneliness. Emotional normalization is the process whereby immigrant parents work hard to build 'normal' relationships and live a normal life by attempting to minimize the difference they feel that exists between themselves and more typical families. In order to achieve emotional normalization certain conditions need to be fulfilled in areas such as social support, family functioning, and family resources. Further exploration into prevalent themes and the concept of emotional normalization in terms of relationships wil l be presented in Chapter five. Summary of the Literature Review A literature review suggests that minimal research has been done pertaining to immigrant parents in caring for a child with autism. Information pertaining to immigrant parents and autism in relation to personal resources, social support, and family functioning styles was scarce. Hence, an exploratory study which describes the 2 6 experiences of immigrant parents in caring for their child with autism was seen as being useful. 27 Chapter III Methodo logy T h i s chapter details the methodology and procedures employed in conducting the study. T h e first section includes an explanation o f the narrative paradigm and basic assumptions o f this mode o f inquiry. M y personal perspectives and beliefs about h u m a n nature as we l l as a rationale for why I adopted a narrative mode o f inquiry is included in section 2. T h e third section overviews the design o f the narrative study. T h e fourth section focuses on the selection o f the participants, the interviews and analysis process. F ina l ly , the chapter ends with some strengths and limitations o f a narrative mode o f inquiry. Bas ic Assumptions T h e focus o f narrative inquiry is to understand a person's experience o f their world . H u m a n s are storytelling organisms who, individual ly and socially, lead storied lives. Thus , the study o f narrative is the study o f the ways humans experience the wor ld (Connel ly & Clandin in , 1990). Such a narrative inquiry invites rather than discourages storytelling (Strickland, 1994), and assumes that the researcher and the co-researcher create a co-constructed narrative, which is an interpretation o f the story told b y the interviewee. T h e analysis is a continuous process whereby a series o f anecdotes and developing themes lead to a richer, more condensed, and coherent story to be told (Kvale , 1996). M i s h l e r (1986) suggests that an inquiry requires six steps: (a) interviews, (b) repeated listening to taped interviews and reading o f the transcripts, (c) discovery o f trajectories in the interviewee's history, (d) development and refinement o f a mode l (e) 28 selection o f a narrative as a representative case, and (f) specification o f episodes and the structure o f the narrative for detailed analysis and a co-constructed interpretation. Another approach which was applied in m y narrative analysis is L e e Strickland's account o f narrative 'lenses' (Strickland, 1994). She contends that stories can be analyzed using different narrative 'lenses' such as (a) plot structure, (b) narrative structure o f episodes, and (c) characteristics o f the narrator and the protagonist. T o illustrate, the plot o f a story evolves as events and is related to an evaluative endpoint or goal w h i c h is important to the story teller (Strickland, 1994). A s wel l , narrative structure o f episodes is a useful method o f analyzing the data. These episodes might be isolated b y using a scheme developed b y S i l l iam L a b o v and Joshua Waletsky consisting o f an abstract, orientation, complicat ing action, evaluations, resolution, and a coda (Strickland, 1994). T h e most reportable incident then is something worth telling and is generally approached through a series o f complicating actions connected either causally, temporally, or both (Strickland, 1994). F ina l ly , a look at the protagonist and the narrator is pertinent. Strickland contends that the protagonist is an actor demonstrating the narrative truth o f the past. T h e goal in understanding the story is to analyze why the storyteller reveals a particular version at a particular time (Strickland, 1994). Rationale T h e narrative paradigm describes our very being in the world; we interact with people and bui ld relationships on the basis o f how we make sense o f them. W e engage in informal interviews every day, as we listen to stories with friends and try to assign meaning (El l i s , 1994). "Conversation is a basic mode o f human interaction. H u m a n beings talk with each other - they interact, pose questions, and answer questions. T h r o u g h 29 conversations we get to know other people, get to learn about their experiences, feelings, hopes and the wor ld they live i n " (Kvale , 1996). V o i c e is meaning that resides in the indiv idual and enables that individual to participate in a community; "voice suggests relationships: the individual 's relationship to the meaning o f her/his experience and hence, to language and the individual's relationship to the other, since understanding is a social process" (Connel ly & Clandin in , 1990). A n unstructured interview is an ideal mode o f inquiry for understanding how people experience their world . I agree that "forgetting the rules in creative interviewing allows research subjects to express themselves more freely, and thus to have a greater voice both in the research process and in the research report" (Casey, 1996). T h e researcher who approaches the interviews with pre-structured categories, w o u l d find only that which he/she had considered. A collaborative method which places emphasis on sharing historical narratives and first personal accounts o f all relationships provides a richer depiction o f the truth directly with the people with w h o m I am interested. M y aim is to get their stories in the face o f the constraints o f their everyday social world. Persons are interviewed in hopes that they w i l l share some stories with me. T h e narrative interview provides this opportunity. Relationships A paradigm w h i c h places emphasis on relationships was employed to understand the l ived expereince o f immigrant parents in caring for their chi ld with autism. T h e family system is a network o f relationships which are interactive and are changing over time (Fine & Carlson , 1992). E a c h family provides the chi ld with basic physical needs, emotional bonds, a secure base, life experiences, a network o f communicat ion, and models o f appropriate behavior and attitudes. T h e parents' ability to meet these important 30 functions is dependent upon many relationships, including the relationship with: his/her spouse, finances, formal and informal support services, the education system, communi ty organizations, and the Min i s t ry for Chi ldren and Famil ies . Parent-child interaction depends on the role demands, stresses, and supports emanating from other settings. N o t surprisingly, supportive links between the family setting and the external environment play a significant role in their relationships with their children with autism. In essence, the ch i ld with autism is nested in the family system; each family system is embedded within a larger ecology o f social systems, and thus is affected b y changes in the community and in society (Bosch, 1996). F o r the purpose o f this thesis, a relationship is defined as an emotional association between two people. Moreover , two individuals relating together are not independent; they mutually influence each other. ' A ' and ' B ' exist in the context o f a relationship in which each influences the other and both are equally cause and effect o f each others behavior (Becvar & Becvar , 1996). O v e r time, A and B establish patterns characteristic o f their particular relationship. A focus on the context and the processes that give meaning to the events provide a richer picture than looking at the individuals and events in isolation. In order to get a sense o f the whole, I look at how the parts relate to each other. T h e experiences o f parents caring for their ch i ld with autism becomes a window that I can look through to understand the parents place in the larger system. T h e various roles, relationships, and behavior patterns that characterize the parents, specific settings, and other people within that system paint a picture o f the whole. Rhodes (1970) argues that emotional disturbance is a function o f the reciprocity between the individual to his or her environments (Fine, 1994). H e continues, "Disturbance is constituted from a reverberating circuit between the disturbing indiv idual 31 and various significant individuals within the environmental settings such as government agencies and home. It is their disturbing exchange which creates the problem" (Fine, 1994). Hence , relationships play an integral role in the wel l being o f parents caring for their children with autism and is worthy o f investigation. A look at the relationship between the chi ld with autism and the wor ld is important. D e M y e r states that there are four broad categories o f behavior consistent with the diagnosis o f autism ( D e M y e r , 1979). These are: difficulties with social relationships, severe deficits in language, severe deficits in communication; and other associated features such as a strong resistance to change in the environment, insistence on routine, odd movements, behavior problems, attachment to inanimate objects, very unusual responses to c o m m o n stimuli in the environment, lack o f imaginative play, and the presence o f splinter skills. It is important to note that autism itself has different features, and all have individual variations ( D e M y e r , 1979). Individuals with autism range from being severely delayed to academically gifted. People with autism vary tremendously in personality, intellectual capacities, social skills, and ability to cope with the everyday demands o f society ( D e M y e r , 1979). Jensen (1992) suggests that most children with autism have diff iculty with social relationships and the use o f language (Jensen 1992). T h e narrative paradigm, by means o f an unstructured interview, gave the participants an opportunity to express their hopes and concerns in any manner. M y role as listener and researcher required me to hear and understand the unfolding story in detail, and combine m y understanding with theirs. I then sought to interpret the cultural processes that underlie the content o f the stories themselves, and attempted to reveal the meaning o f events through the lens o f m y interpretation. Currently, the fundamental 32 processes w h i c h underlie the relationships o f immigrant parents and their ch i ld with autism and the relationships between the immigrant family and the members o f the communi ty are unknown. Thus , a plurivocal mode o f inquiry is recommended since it results in a broader and deeper meaning o f the immigrant parents' experiences. T o effectively help immigrant parents l iv ing with autism, an understanding o f the w a y they see the wor ld is essential. F r o m the patterns and themes that emerged from the narrative interviews, I hoped to identify what these families v iew as essential to their success or failure as a family unit. A co-construction o f the narrative interviews m a y help to envision how to be more practically helpful for immigrant parents l iv ing with autism. Personal Background In a qualitative inquiry, relationships depend on two factors: the quality o f our interactions and the quality o f our self-awareness to help modi fy the impact o f the self o n our research (Peshkin, 1992). Hence , an understanding o f some factors wh ich contributed to m y interest in immigrant families l iv ing with children with autism is pertinent. T o begin, I started m y career as a special education teacher in an inner city zone o f the V a n c o u v e r School District. I instructed a Primary Educat ional ly Handicapped Class consisting o f students with severe autism. W i t h this role, some o f m y responsibilities included the implementation o f academic and behavior modification programs; however, a more demanding aspect o f the job required me to provide support and assistance to these families who endured significant stresses due to a lack o f resources, dysfunctional family operation, and a lack o f informal and formal support systems. M a n y parents had recently arrived to Vancouver only to find themselves isolated and lost. In m a n y cases, I 33 was the only connection to the community for many o f these parents. T o illustrate, at the end o f the school year, many parents felt abandoned. In reality, I bel ieved they were. In addition, I bring to this study m y most recent experience. In this past year, I have become a mother myself. Consequently, I am more aware o f the stresses o f parenthood, and I am astounded b y the intensity o f the experience. I have developed an understanding and an appreciation o f support systems, resources, and family functioning styles. B e i n g a parent o f a typical chi ld in one's own country o f origin is demanding and all consuming in itself. I cannot imagine the complexities involved in being a new immigrant and having to care for a chi ld with autism in an unfamiliar country. I seek a deeper understanding o f how these families cope with their day to day issues whether it be handl ing the behaviors o f their children, education, socialization, medical care, and family functioning. M o r e recently, I have taken on a new role with the Vancouver School B o a r d as a District A r e a Counsel lor in an area where 85% o f the student population is o f a different cultural orientation and do not speak Eng l i sh at home. Because m y job requires that I do a great amount o f counsell ing, consulting, and coordinating, it is essential that I have a deeper understanding o f the cultural values and ideologies wh ich play a role in parents' ch i ld rearing practices. Hence , I bring to this study a desire to help families o f diverse cultural backgrounds. Selection o f the Participants A variety o f cultural backgrounds were included in m y sample o f parents who belonged to the A u t i s m Society o f B . C . A n advertisement in search o f immigrant parents l iv ing with a ch i ld with autism was placed in the A u t i s m B . C . Newsletter. T h e criterion 34 for selecting participants required that the parents had lived in Canada for three years or less, and had a child between the ages of four and eight years old with autism. As well, it was preferred that each family be a family with two parents. The total sample consisted of three case portraits. The names of the interested participants, in this case there were three, were submitted to me by the Autism Society of B.C. The families reside in different areas of the lower mainland - Burnaby, Pitt Meadows, and Steveston, and the home countries include the Philippines, Korea, and England. In-Depth Interview Each participant was interviewed in person for at least two hours and all interviews were audio taped. Participants were provided with an opportunity to present their experiences in a non-structured and spontaneous way. I asked the participants to share with me their experiences in caring for their child with autism in their country of origin and in Canada. Immigrant parents searched for memories or thoughts that they chose to talk about. In two of three cases, the couples together gave me a combined account rather than two separate accounts. The first interview involved three phases. The first established and informed the co-researchers of the nature of my research. To illustrate, I conveyed to the participants that the purpose of my study was to understand the experiences of immigrant parents in caring for a child with autism. I justified my research project by stating that by attempting to understand some of the complexities, professionals and other social services will be better equipped to design and implement services that will effectively meet the needs of immigrant families in caring for their child with autism. All the participants were comfortable with my motivation and were very willing to share their stories. I tried to keep my introductory statement as unstructured as 35 possible to al low the participants to direct their own exploration. I hoped that they w o u l d include such things as a description o f their feelings when they first discovered that they had a ch i ld with autism and a description o f events that occurred prior to their decis ion to immigrate to Canada. A s wel l , I used this opportunity to convey m y respectful concern to the participants to foster a relationship o f empathic understanding and trust. I took this opportunity to inform them that any information resulting from this research study w o u l d be kept strictly confidential. A l l documents were identified only b y code number and kept in a locked f i l ing cabinet. Participants were not be identified b y name in any reports o f the completed study and all data records on the computer and all discs were deleted at the end o f the project (approximately six months). T h e second-phase o f the interview was used for data gathering in the form o f open-ended questions. In an attempt to uncover as m a n y stories about these immigrant parents as possible, I kept it as unstructured as possible. I asked some questions occasionally for the purpose o f clarification and to acquire an increased meaning o f a topic. Questions included: "Share with me some experiences in your home country which you miss today, Describe some early memories in your home land, What is provided here in Vancouver wh ich y o u did not experience i n your country o f origin?, What does that mean for you?, C o u l d y o u tell me more about that?, What is it that y o u are missing? What do you need that y o u don't have?" (El l is , 1994). I had to take great care not to direct m y participants. T h e interview was deliberately kept unstructured in order to produce data that might otherwise be missed; however, I as the chief researcher d id have a list o f aspects that I hoped w o u l d be covered. A l t h o u g h there were non-verbal messages throughout the interview, most data w h i c h was analyzed was in the form o f language, and these verbal descriptions were 36 interpreted b y me. T h e extent and duration o f these in-depth interviews varied and depended o n the specific circumstances o f each o f the participants such as the nature o f the experiences, the comfort level experienced b y the participants, and the ability o f the participant to express their experiences whether it be due to a language barrier or a sensitive topic. F ina l ly , in the third phase o f the interview, I summarized and interpreted the general gist o f the interview. T h e participants had the opportunity to reply b y stating, "That is exactly what I was trying to say," or "That is not quite what I feel." E a c h interview was audio-taped and then transcribed to be studied b y me. After careful analysis o f the first interview, I approached the second interview with specific questions in m i n d to help me fil l in the gaps. After I identified different categories o f meaning from the first interview - such as family functioning styles, social support systems, and family resources -1 developed questions to increase the accuracy and meaning o f m y narrative interpretation. Analys i s T h e data analysis took place in three parts. T o begin, I adopted an unstructured interview format that invited respondents to speak in their own voices. Secondly, each interview was audio-taped and transcribed verbatim. T h e next step required a clarification o f the material, b y noting superfluous material such as digressions and repetitions and bringing the co-researchers o w n understanding into light as wel l as m y perspectives. I began b y reading over the descriptions searching for themes and significant connections. Themes can be thought o f as "knots in the webs o f our experience, around which certain experiences are spun and thus experienced as meaningful wholes" ( V a n M a n e n , 1984). Recurr ing topics were categorized under three main headings entitled support systems, 37 family functioning styles and family resources. U n d e r those three ma in headings, I categorized the information into different sub-headings which include commitment, appreciation, allocation o f time, sense o f purpose, congruence among family members, communicat ion, rules and values, coping strategies, optimism, flexibility and adaptability, balance, and extra-familial relationships such as the education system, M i n i s t r y for C h i l d r e n and Famil ies , and finances. A s wel l , intra-, inter-, and extra-famil ial emotions such as sadness, frustration, guilt and self-blame, anxiety, fear, embarrassment, and courage were discussed. After the information was stranded into categories, I tried to make sense o f all these parts b y looking at the whole. Narrative inquiry is strongly influenced b y a sense o f the whole that plays an integral role in the construction and the reading o f a narrative account (Connel ly & Clandin in , 1990). In attempting to search for the deeper values that reappear in various stories, I asked questions such as: What is absent in these stories in terms o f m y categorized topics such as social support networks, resources, and coping styles? D i d they talk primari ly o f the past, present, or future? Is opt imism present? What significant others appear in the stories? W h o are the other characters and how does the co-researcher position him/hersel f in relation to them? D o the parents appear to be passive or active? (El l is , 1994) B y asking m y s e l f these questions, I gained a better understanding o f their worlds. I tried to search for the commonalit ies present in all three cases b y constructing a time line wh ich included events that all three couples went through as discussed in the interview. T h e y include (a) the events leading up to the decision to immigrate to Canada; (b) the triumphs and tribulations that they endured during the immigration process to Canada; and (c) the ongoing development and continuation o f a variety o f relationships both within and 38 outside o f the family. T h e result is not a chronological life history, but a general portrayal o f what engages, preoccupies, motivates, pleases, interests, frightens or displeases them (El l i s , 1994). Case portraits are presented. T o respect the confidentiality o f the participants, all names are fictional. M y explanation attempts to weave the past experiences, emotions, attitudes, and interests o f the immigrant parents caring for their ch i ld with autism. It is important to note that m y data interpretation is a reconstruction o f what the co-researchers themselves presented as their experiences. The ir voices were w o v e n throughout. I checked back with the participants to ensure that m y account was consistent with their experiences. T h e most overwhelming task in the data analysis was f inding the l ink between m y 'narrative construction' and m y 'narrative crit icism' (Cochran, 1990). That is, having to adjudicate between the whole and each part was a difficult challenge. M y initial analysis o f the narrative 'whole' revealed that the experiences o f immigrant parents in caring for their ch i ld with autism revolves around the emotional work invested in a wide variety o f relationships. T h e most emotional work is invested in their ch i ld with autism, and the majority o f the relationships established thereafter are based on that focal point being the pr imary relationship. Whether it be in their country o f origin or Canada, relationships play a significant role in the lives o f immigrant parents l iv ing with a ch i ld with autism. Trustworthiness o f the Study Numerous strengths and weaknesses play a role in the trustworthiness o f m y study. O n a positive note, the narrative mode o f inquiry provides immigrant parents caring for a ch i ld with autism an opportunity to bu i ld a research relationship with me. B e i n g that m y central concept in this study revolves around 'relationships', the narrative 39 paradigm is an ideal mode o f inquiry. Moreover , s imply telling their stories m a y be an empowering experience (Connel ly & Clandin in , 1990). In other words, the collaborative nature o f the research process has the potential to give immigrant parents an opportunity to see themselves as participants in their new communities. Another strength in a narrative study is that it offers scope for questions that are o f direct significance to practice. "The principal value o f narrative is that its information comes complete with evaluations, explanations, and theories and with selectivities, silences, and slippage that are intrinsic to its representations o f reality." (Casey, 1996) Narrative inquiry is flexible, adaptable, and includes non-verbal behavior. A n open ended interview is a spontaneous and flexible method which allows the interviewees to search for memories and thoughts that they wish to talk about in regards to caring for their ch i ld with autism, rather than being forced to respond to r ig id questions. A s wel l , this method provided me an opportunity to utilize many o f m y counsell ing skills as I attempted to establish a bond with the story teller. I enjoy interacting with people, and I experienced great pleasure in hearing their stories and acquiring a deeper understanding o f their l ived experiences. I adopted a person centered approach, and I tried to be as open, neutral, and unbiased in the interview in spite o f m y o w n inherent subjectivities. Lead ing questions were avoided; however, open questions such as, " H o w do y o u feel it was helpful?" and " W h y do y o u believe life was easier in Seoul?" were asked. T h e narrative paradigm steered m y research and provided the foundation for m y interpretations; however, I tried to use multiple sources o f evidence. D u r i n g the col lection 40 and interpretation o f the data, I checked m y interpretations o f the specific experiences with the participants ideas to validate m y findings. A s well , a comparison between the co-researchers, the literature, a third party, and m y prior experience with families l iv ing with autism further enriched m y findings. G i v e n that different people might systemize the anecdotes in different ways, I strengthened m y research b y having another person review the transcripts and put the information into categories. V e r b a t i m accounts o f conversations such as audio tapes, and direct quotes on transcripts were studied, and these materials are highly valued as data ( M c M i l l a n & Schumacher, 1997). However , the presence o f the audio tape also caused some anxiety as expressed b y some o f the co-researchers. After the first few moments however, most people v is ibly relaxed and seemed to forget its presence. I agree with H o w a r d Schuman's statement which suggests that, "too m u c h can be inferred from answers taken at face value to questions o f dubious merit... al l answers depend upon the w a y a question is formulated. Language is not a clean logical tool l ike mathematics that we can use with precision.. . A s i f this complexity were not enough, our answers are also influenced b y who asks the question" (Mishler, 1986). B y engaging i n continuous self-questioning and re-evaluation o f all phases o f the research process, I made an effort to acknowledge m y subjectivity so that I was aware o f m y potential biases during m y data collection and analysis. Hence , another strength which is apparent in narrative research is the personal dimension such as the notion o f reflexivity. W i t h this method, I was encouraged to place myse l f in m y research. In other words, I was not separate from the realities o f which I was investigating. In order to authenticate m y 41 interpretation, m y o w n presuppositions were acknowledged. That is, m y s e l f and m y emotions were implicated in this research (Connel ly & Clandin in , 1990). B e i n g that a basic tenet for qualitative research is that the researcher is the major research instrument (Connel ly & Clandin in , 1990), it was important to note m y particular orientation in this study in order to understand how I arrived at the interpretation o f the stories. D u e to cultural barriers and a general unfamiliarity with an unknown researcher, some o f the parent volunteers might not have felt at ease to disclose personal anecdotes. In fact, one parent exclaimed, " M a y b e I am intimidated because I am talking to a native Canadian like you ." Consequently, I question the depth o f each account. In addition, in a l imited time span, perhaps families were more wi l l ing to discuss areas in w h i c h they were coping wel l rather than their areas o f grave concern. Moreover , a narrative study that entailed thirty interviews over a longer duration might have a different tone. In brief, another research study may not reveal the same results. However , it is important to note that a l imited number o f interviews with three immigrant families marks a beginning in the exploration o f immigrant parents caring for their ch i ld with autism. Peshkin states: W h e n I disclose what I have seen, m y results invite other researchers to look where I d id and see what I saw. M y ideas are candidates for others to entertain, not necessarily as truth, let alone Truth, but as positions about the nature and meaning o f a phenomenon that m y fit their sensibility and shape their sensibility and shape their thinking about their o w n inquiries (Peshkin, 1985; p. 280). M y research has laid the groundwork for future inquiry. 42 Chapter I V Case Portraits Portrait o f a K o r e a n family M r . and M r s . K care for one seven year o ld boy, Tomas , with autism. T h e y arrived to Canada five months ago from Seoul, Korea . A two hour interview with this friendly and cooperative family helped me acquire a richer understanding o f their experiences in caring for their chi ld with autism in K o r e a and in Canada. A n initial interview with M r . and M r s . K revealed a family who is adjusting extraordinarily we l l to their new home here in Canada in spite o f the recent significant changes in their lives. T o m a s is an attractive, healthy, and loving boy who has autism. T h e y described T o m a s as being " h igh functioning - academically able - who experiences social difficulties." Consequently, he can be hyperactive, impulsive, distractible, and has a short attention span. H e enjoys the company o f his parents and has trouble adjusting to new situations. In the academic domain, they describe their son as doing quite wel l , and this is the reason w h y education is so important to them. It appeared that life in K o r e a was challenging for various reasons. Pr imari ly , due to the nature o f the society, M r . K felt like it was not the conducive environment to raise their son for several reasons. T o begin, he described the city as being a "crowded city and the competit ion is very hard and I l ived that k ind o f life. I think that for the smart child. . . for smart people, it is okay." H e continued to describe his son as having a little problem, and the K o r e a n school system would not sufficiently meet his academic needs. H e perceived the education system as being one that served the typical chi ld , but was very unaccommodating for the chi ld with special needs. In terms o f special education, he 43 described the special education program in Korea as one that focuses on the affluent and gifted students, and hence was not suitable for his son. Mrs. K explained, " When we were in Seoul, there are so many kindergartens preschools there but no kindergarten wanted to enter Tomas. I had to go to another area. I had to drive thirty minutes every morning there and back." Mrs. K described the circumstances of her best friend in Seoul who has a child with autism, and has to stay in school all day with her autistic son. She explained, "There is a lot of sacrifice." Mrs. K explained, "A few years ago, the Ministry of Health in Korea did not even know the meaning of autism." Mr. K continued, "As parents of a child with autism, even the government does not have any knowledge, so how can we as parents educate them? Their understanding of autism and insecurities are not even known!" On a positive note, they expressed appreciation for the Lovaas program that was offered in Seoul for children and families living with autism. "My son owes a lot to the treatment in Seoul. In three months, he learned to speak and he could be better, but I could not find that here in Vancouver, and that is my disappointment." They explained that they moved to Canada primarily in search for a better education and a better life. The Korean culture also played a role in their decision to move to Canada. He proclaimed, "So in terms of culture and infrastructure, it is very hard for us to live there." He continued, "Well, you know Confucianism, well they are conservative, and they are a little bit closed minded for special needs. That was very hard for us." They described the sacrifices he made in terms of his career in order to be a better father. To illustrate, Mr. K expressed some regret in his statement, "I was very happy in Seoul because I was promised management there, but I wanted to take care of my family, 44 so I m o v e d here. I am very happy now as I have the time to support m y family right now." Furthermore, M r . K described his life in Seoul has having no time to be wi th his wife and chi ld . H e described his working situation, "I used to work for a b ig company. I w o u l d work all day and come back at 11:00 at night. T h i s is very c o m m o n in K o r e a . I wanted to help m y son and m y wife, but I could not because I was so busy.. . work ing so hard. F o r m y son he needs his mother but he needs his father as wel l . I could not do that in m y mother country. O u r son is our major priority." T h e y expressed the importance o f having a strong social support system in K o r e a such as family. T h e i r parents, grandparents, and aunts would help them raise their son, and this seemed to lift some o f the burdens involved in raising a ch i ld with autism. F a m i l y based childcare provided them with the luxury o f spending some time together. A s wel l , it seems that this informal support system made up the foundation o f their social life. T h e K ' s are recent immigrants to Vancouver , Canada, and arrived in Canada in the past year. Since they arrived in Canada, they have enjoyed their time here. T h e y l ike the nature here and they reiterated the fact that "Canada keeps its children safe." Presently, the family lives in a small town house that they recently purchased. M r . K recently landed a job here to help make ends meet; however, it w i l l not suffice for the long term. H e described h imse l f as being overqualified for the job in spite o f having had to write some recent tests. A t present, like in K o r e a , M r s . K stays home with their son and is the pr imary care giver in the home. M r . K works part time out o f his home in a business related organization. T h e y both seemed pleased about the increase in time w h i c h 4 5 M r . K can spend with the family with his present employment. T h e y are presently l iv ing on prior savings from their home country. D u e to the daily demands such as feeding, bathing, disc ipl ining, toileting, and disrupted sleeping patterns, both M r . and M r s . K feel overwhelmed sometimes. In fact, they opted not to have more children due to the pressing demands o f T o m a s o n them. T h e y s imply do not have the energy or the resources. T h e i r decision to move to Canada was for educational reasons only. The ir son s imply was not getting the education that they deemed acceptable for h im. " W e are very motivated to educate h i m because he is h igh functioning. H e is the highest in his math class. H e does not speak wel l , but he does understand well . W e are motivated. E v e n though he has a problem in social interaction." Generally, they have been very impressed with the school system here in that Tomas was granted a special education assistant i n his home school and was integrated into a regular classroom immediately. "I can say, m y son is autistic, and the school system is wi l l ing to help...most teachers support the ch i ld with special care." M r . K explained, " W h e n I decided to immigrate here, I was very worried, and I was worried about how m y son w o u l d be in this society. After I arrived here, I was pleased." H e explained that his meetings with the A u t i s m Society o f B . C . gave h i m very good information. A s wel l , he had the opportunity to meet his son's principal , school teacher, and behavioral consultant. "I am very happy and comfortable because m y son is adjusting quite wel l ." However , they expressed some concern around the nature o f the program, "They are not aggressive and proactive in treating them" (children with special needs). H e is i n search for a system which offers a specific program for his son and suggested that he cannot find one here in Vancouver . H e explained that the official system in V a n c o u v e r have k ind and supportive workers, but they do not know exactly 46 how to help. H e continued, "What I mean is m y son is high functioning...so i f I offer h i m a good suitable education, he might be able to study at a university and he w i l l have a suitable job which is m y objective for m y son, but in B . C . they think more about taking care o f the ch i ld and that is no good. In K o r e a , they do not take care o f the ch i ld , but they find something that heals them." A t present, M r . K ' s biggest worry is around finances. B e i n g that he is the 'bread winner' he feels a lot o f stress, and he is very concerned about the money he is forced to spend on the Lovaas Program due to the fact that there is no assistance provided. " W e spend about $20,000 per year wh ich is very very b ig money for us. W e have to pay for the flight fare and accommodation for the A m e r i c a n assistance. I could earn enough money in K o r e a but here it is different. I cannot have the job here. T h e language and I don't have any relationships here. I don't have any background here. Sometimes I don't l ive wel l . I can't sleep because I can't make money for the extra $20,000 in this society because our background is different. I have to invest 1 -2 -3-10 years to make contacts. I have sleepless nights. I know that Canadians already spend a lot o f money to give chi ldren like T o m a s a full time teaching aid; we have many things but these are things that take care o f the chi ld. It should be more aggressive and proactive to heal the ch i ld with autism. I don't see that k ind o f public pol icy here in this province." H e expressed some urgency. "If they cannot provide on time education, I mean who w i l l take care o f h i m ? I mean, M o t h e r and Father w i l l die some day, right, so uuuhhh we have l imited time maybe ten years. Without education, he wi l l waste his life. So the time is now. W e need money now. In ten years, we won't need any money. I won't need any financial support at all. T h e time is now." M r . K made it very clear that he worries a lot about his financial resources. T h e y talked about the importance o f establishing some friends here in Vancouver . F o r example, they described their place o f residence as being a conducive place for meeting Canadians. A s wel l , M r . K stated, "I am trying to have Canadian friends, as this is better for me because I w i l l l ive in Canada. I play go l f with Canadians. Sometimes I go b y m y s e l f and meet Canadian friends. If I don't do that, I w i l l hang around with only Koreans ." It appeared that going out into the public was very difficult for various reasons. T o begin, they shared their feelings o f embarrassment and frustration. M r s . K shared a story that seems to occur often in her life. "Especial ly in a public place... H e does not want to line up in a shopping mal l . H e shouts sometimes and has screaming fits and tantrums. E v e r y b o d y looks at us and wonders why m y chi ld does that. Sometimes I explain, but most o f the time, I don't. I say, I don't know. A chi ld with autism looks like a normal ch i ld so it is not easy." She felt l ike people were questioning her ch i ld rearing practices b y subtle acts o f staring or avoidance, and c la imed that she had little control over the situation. T h e y expressed a need for more time for themselves. In response to m y question, " H o w w o u l d your life be i f y o u did not have a chi ld with autism?" T h e y responded, "It w o u l d be like parents with normal kids. I could do something for myself. N o w , I have a ch i ld with autism, I can't do anything I want to do. T h e only time I have is in the fitness club. A little time I can forget about m y son, but then I go back home and the hard time begins. Y o u know what I mean?" M r . K further explained, " E v e n when we have the time, 48 and T o m a s is at school, we worry. I can't relax. I give them m y cel l phone number i n case there is an emergency. Isn't it hell. It is hel l !" T h e y worried that the school w o u l d cal l them. Specif ical ly, they worried that they would be contacted b y the school for behavior problems. A s wel l , they reported that they spent very little time away from their ch i ld with autism. Consequently, they d id not have time to pursue a lot o f their o w n interests and they had very little time with only each other. T h e y expressed an interest in getting out and doing more activities together as a couple, but were l imited due to the difficulty in f inding suitable chi ld care. T h e y experienced anxiety in merely trying to f ind someone who is w i l l ing and has the skills to look after their chi ld with autism. "Sometimes we want to go to a dinner party, but we can't." It was clear that they had made numerous sacrifices, and this is clarified b y M r . K ' s statement, "Parents with autism should sacrifice their lives for their chi ld ." Throughout the interview, many strengths were apparent. T o illustrate, they described their relationship as being richer with their chi ld with autism. "In the case o f us, our relationship is enhanced. In K o r e a , some families are in trouble with their ch i ld with autism and some are happy. I think that we are a majority though. Many.couples are happy with their ch i ld with autism. I think that we are a good couple. O u r relationship has become better and better because the only person we can rely on is each other." 49 Portrait o f a Phi l ippino F a m i l y M r . and M r s . P immigrated to Canada four months ago from the Phil ippines. T h e y have three children ages six, four and ten months. T h e two oldest children have been diagnosed with various degrees o f autism. M r s . P worked as an executive secretary in an international institution, A s i a n Development Bank . She described herself as being computer literate, and has a good understanding o f various software programs. H e r husband had a we l l paying job in M a n i l a as he worked as a government employee. M r s . P described her job in the Philippines, " I had a really good job compared to other employees." She explained that her salary was very good; however she still could not afford ch i ld care. It was very clear to me that she has given up a lot, and M r s . P feels that it is unfortunate that her government could not provide services for her children. She further explained that in the Phil ippines she can enroll her chi ld in special programs, but then she had to stop because she could not afford it. She explained that children with autism are very hard to train and require special care, "They can't talk, they aren't toilet trained, no matter how hard I try to teach them, they are slow, hyperactive.. .all these things just eat up your time trying to take care o f them." W h e n M r s . P found out that her first chi ld was autistic, she described it " W e l l , it is l ike the wor ld fell down on me." She had a lot o f hopes and dreams for her first chi ld , "Before I had her, I was preparing already to give her a good education. I bought all these educational toys and books so y o u can just imagine m y frustration when I found out something was wrong with her. I mean I would rather accept her as being a hare lip or pol io , but now with a mental incapacity y o u know or mental disability because it is really 50 tough, because y o u cannot communicate and it is really frustrating. I really want to talk to her...really talk, but y o u can't do that, but now she has improved a lot, and she is really smart i n some ways. She can do things. She can draw, she has a good vocabulary, and she can speak E n g l i s h now." Before her second chi ld was diagnosed, she had questions. T h e y said, "Don't worry." She continued, " I was afraid that he might be autistic. I feel so stupid now when I look back. I blame myself. It pains me to realize that I waited too late for h i m . " She admits that she had some questions when her son was three years old. D u r i n g the first two years, she described her son as being fine. "I thought that he was a good boy because he d id not cry often. H e was different. H e would just sleep through the night. H e was so easy. H e had eye contact, loving unlike m y first. I thought that he started to speak at around eleven months. One time he pointed at an airplane, and said "airplane", and another time I thought that he said, " M o m m a . " H e was also m i m i c k i n g T . V . commercials , he could fol low simple instructions like throwing his diapers in the waste basket, and put on your slippers. I f I was upstairs, and I yelled his name, he w o u l d come up. . ." She explained that her little boy is more severe than her daughter because he cannot talk at all. H e can sing, and he can m i m i c what is on T V and radio, but he is not toilet trained. She talked about the discrepancies apparent in caring for a ch i ld with autism, "He can use a spoon, and apple, I put bits and pieces there and he can p ick them up but when y o u make h i m pu l l his pants up, he can't do it! I just don't understand it. I w o u l d like to teach h i m , but I just cannot get it...it is very frustrating, and I cry a lot o f buckets ful l ." W h e n M r s . P described her experience with being pregnant with her third chi ld , she was both fearful and hopeful. "I d id not want to get pregnant again. . .Oh, I prayed hard 51 and hard. I said I can accept it, but please give me a normal ch i ld with normal development." She described her feelings when she sees more typical families around her. " Y o u are very lucky. W h e n I see families around with three or four children and they are all normal.. .because when your chi ld is normal , y o u can just talk to them straightly, but with them, I just can't express it. Y o u know, I want them to do things, but they just can't do things no matter what I demonstrate it. I talk to them. M y daughter...she just looks at me b lankly through and through... just no contact. It makes me cry." She later stated, "It is frustrating. I want to understand m y children. I want to give them all the supports they need." M r s . P openly expressed her frustration in caring for her children with autism. She confessed that the endless and persistent amount o f care that her children require is draining and exhausting for her. She explained that they have made b ig compromises in m o v i n g to Canada. T o begin, they presently live in a one bedroom apartment under crowded conditions. T h e y hope that w i l l eventually be able to afford better housing here in Canada. " W e w o u l d l ike to get a house o f our o w n one day." She explained, "The first two weeks and even in fact now, we are both very sad and we just cry both o f us." Since arriving in Canada, M r . P has taken on a new job at M c D o n a l d s as a maintenance crew. H e works night shifts, and his hours are from 11:00 p .m. - 7:00 a.m. H e explained, "I feel really bad. I want to be with them. W h e n I work especially leaving them altogether at night. In the Phil ippines we sleep in one room." M r s . P interrupted, " I tell h i m , don't worry about me because he is guilty because he can't help me take care o f the kids ." 52 T h e i r reasons for m o v i n g to Canada were solely based on the needs o f their children. " W e came here because o f m y children. T h e y have problems. I d id some researching, and I found that Canada is a great place to raise kids and I can give them a good education. T h e y have special programs for children like them. A l t h o u g h we k n o w it w i l l be difficult, because we love them o f course, we have to do it. She expressed to me with true convict ion, " M y children are m y priority." Since arriving to Canada, she has met with the social worker several times. She agrees that the social worker is knowledgeable, but she has not been instrumental i n getting direct service. She attributed it to the economic situation in B . C . "I think the only problem that I see is a long waiting list because the budgets are being cut now and B . C . economy is in a slump. I am hoping that things w i l l p ick up." She talked about the importance o f social support. In the Phil ippines, they had relatives there w h i c h meant that she had both moral support and physical help. She explained that she had family and maids to help her look after the children. She procla imed, " W e could afford maids there but here we cannot, so it is a real shock! A l t h o u g h we knew it w o u l d be hard before coming here, but now it is a reality. It is really very tough." Surprisingly, M r s . P d id not get a lot o f support from friends in regards to her chi ldren with autism in the Philippines. She explained, "In the Phil ippines, it is very different there. T h e y w o u l d not m o c k me. T h e y would just talk about it and talk about it. It's l ike gossip y o u know. O h , poor little M r s . P. T h e y have two abnormal children, and I just don't want to hear that." 53 In spite o f the difficulties that they have encountered here in Canada, she stated, "But even though we are feeling that way, I feel that these hardships w i l l come to something really worth while. O f course we are starting our life from scratch." She is very optimistic about getting a job, but somewhat apprehensive too. She stated, "Because when I see the newspapers, I see there are jobs that fit for me, but I need to brush up on m y Engl i sh . So I think that I can make good money here as long as I can find help and the time." She further stated, "I don't want to be sitting at home and taking care o f them. T h e y also have to grow up and I w i l l be working also and put m y skills to use." M r s . P has a lot o f hope in regards to her children's future. She proclaimed, "I also pray for m y children that they grow up, that they wi l l be able to marry. I hope that they w i l l be able to work and carry a relationship, and I know that i f I die, they w i l l be okay. I want them to be able to develop like the way we are...carry on a family, have children like us. I still want them to go through life. " She continued, "If they grow up to be normal people, we w o u l d be the happiest couple on earth, and we think that is possible. Here in Canada, we can work, we are still young, all the services are here, and Canadians are very helpful, and they care about children." O n the whole, in spite o f the sacrifices that she has made, she is very optimistic about her decision to m o v e to Canada. She is headstrong and determined to make it work here in Canada. She talked about her supportive relationship with her husband, "We have not given up with each other and with the chi ldren also. W e have to be strong for them, we have to do our best for them." She described her relationship as being closer since they arrived in Canada. "I think that 54 we became closer. W e understood each other. I have no time to enjoy m y s e l f and he too... I mean, it's just us here.. .nobody else." She is pleased with the friends that she has made here. She meets people at the mal l or at the playground. She talked about the difference in sharing information about her chi ldren with autism, "But here it is more okay. I am more open. W h e n I meet friends I tell people up front that m y children are autistic because I am hoping that they can help me get through this more quickly because they know how it goes." W h e n asked i f she has any time for herself, she replied, "No , I can't even do m y nails. T h e peaceful time is when I take a bath. I close the door and take a shower and relax." In order to cope with the day-to-day demands, she derives a lot o f strength and insight from reading a variety o f books. "Reading helps me understand m y situations. Spiritual books - they give y o u hope." 55 Portrait o f an Eng l i sh F a m i l y M r . and M r s . T care for three children, C i n d y , Samantha, and Susan. T h e y are ten, seven, and five years o ld consecutively. T h e two youngest children have autism, one with severe autism and one with h igh functioning autism. C i n d y , their middle daughter wi th autism, is described as being above average. She has a h igh level o f understanding, and her I.Q. is comparable to any chi ld her age. M r . T stated, "She has no mental retardation as far as we can see. She has a communicat ion problem." Their youngest ch i ld with autism is described as being a real "ham." She is very affectionate, energetic, and verbal , but exhibits a variety o f other autistic tendencies such as a resistance to change, perseveration, and communicat ion difficulties. T h e family members are recent immigrants to Canada, and arrived here six months ago from England . A c c o r d i n g to M r . T , I p i cked an interesting time to come and interview them. T h e y were enduring a very grueling heat wave, and M r s . T was taking care o f her three children with m i n i m a l assistance. It appeared that life in their home country had both positive and negative features. H e spoke h ighly o f the autism panel in Eng land which is made up o f a pediatrician, a psychologist , a psychiatrist, a speech therapist, and several other disciplines who are all invo lved in deciding whether a chi ld is autistic and that review starts at about eighteen months. "Most children in our county are diagnosed with autism b y two years old. So, b y the time the ch i ld is thirty six months old, they are in full time education." H e described the story o f his two girls with autism. A t twelve months old, a hearing test revealed that there was something wrong with Samantha. A t eighteen months it was confirmed that 56 Samantha had autism. Susan, on the other hand, did not manifest the same symptoms. She had the intonation and communicat ion skills unlike Samantha, and consequently there was a time when they thought that Susan would be okay. A s time went on, they realized that something was wrong; but she d id not demonstrate enough o f the key indicators to warrant an official autism diagnosis. H e is very impressed with the organization and early intervention programs in England. E v e n without an official diagnosis, they promptly got Susan into a speech therapy program two days a week and received intensive one on one help. M r . T said that, "I am sure that she w o u l d not have done so wel l , i f she d id not have that early support." General ly , the education system had its serious drawbacks. T h e y decided to m o v e to Canada for primari ly educational reasons. The ir decision to m o v e to Canada was "more in keeping with what we wanted our kids to get in education. W e had to make a decision." H e further stated, " W e have always thought that Canada was full o f opportunity for us compared to being in Eng land ." W h e n they were faced with the closure o f the local school where their eldest daughter with autism was attending due to a lack o f personnel who could deal with her needs, they were faced with the decision o f either m o v i n g to a new country (Canada) where they had M r . T ' s brother and other relations or m o v e to a new county in England. W h e n they visited Canada four years ago, they were looking for a school for their oldest chi ld , they saw three things happening. W h e n they asked about a special school for Samantha, the principal responded, " W h y ? " and preceded to talk about the mainstreaming program in B . C . M r . T further explained that, "It was a refreshing change in that the principal o f the school understood the situation about autism and what was 57 required and how to arrange for support, and it seemed like that was exactly what we wanted. W e knew that our daughter d id better when she was with regular mainstream kids." Moreover , he said, "Research is saying that children who are in a normal environment who are autistic do better." In L o n d o n , she was in a classroom with a general group o f children with special needs such as D o w n s syndrome, autism, and various other needs...she was getting one on one support but she was not being taught how to be normal . Rather she was being taught how to be normal within the special class..." Secondly, Canada seemed like a great choice in terms o f what the M i n i s t r y had to offer. A story he shared w h i c h prompted their move to Canada was with the Min i s try . H e continued, " W e phoned the ministry in M a p l e Ridge , and they said that they w o u l d phone back at 2:00 p .m. , and they phoned back at ten after two, and said, "Sorry for phoning back late. N o w , in Eng land , i f y o u got a phone cal l back in the same week, it was a miracle, so that was impressive!" F ina l ly , they were very impressed with the level o f general services that they could expect such as "respite care, speech therapy, and all the rest o f it." H e concluded b y saying that " W e were given quite an education, and we thought at the time it was going to be different than what it turned out to be." T h e education system has turned out to be very helpful in certain respects and very disappointing in others. T o begin, he explained, "There is no allowance for parents to have any involvement in any o f the decisions about children especially in the school system. It specifically stated with the school board that parents have no say. O n page 51 o f the C U P E agreement, it said that the special needs o f children o f children with special 58 needs to be taken into account prior to any decisions about changes in their environment." H e explained on a positive note that his daughter has a full time special education assistant ( S . E . A . ) in the present system. H e described her as being "trained, educated, a hard worker, and being the right person in the right place." Unfortunately, that S . E . A . was b u m p e d b y another union member without consultation with anyone. H e is very disgruntled about the sequence o f events that followed. That S . E . A . received a form letter sent b y the union to the school board stating that these people were bumped and these people were f i l l ing in. T h e only reason they found out was an accident due to an employee work ing late. H e stated, "If she had not received it we, the school, the teachers, w o u l d not have found out until the first day o f school and nobody w o u l d have k n o w n who this person was, and I am supposed to introduce a chi ld with autism who cannot cope with walk ing down the opposite side o f the street. It is not reasonable!" In response to this unfair action, he and his wife complained about the actions taken b y the school district's manager o f special needs. H e explained, "That title to me sounds like someone who has some educational experience. W e l l , it's not. T h i s person is an administrator, and this person is supposed to decide who is going to work with m y chi ld ." H e wrote letters complaining about the decision to remove his daughter's S . E . A . H e complained that it took one week for a response and the w o m a n was impossible to contact. W h e n they finally got in touch with her secretary, she informed them that this w o m a n has nothing to do with the hiring and firing o f an S . E . A . T h e y were then told that they w o u l d have to write to the school board, the administration offices and request that the information be passed on. H e complains, "We w o u l d have to do this, not them, who had been told that there is a problem coming up with two o f their S . E . A . s but they were 59 not going to do anything about it." M r . T suggested, "What I want is somebody to sit d o w n and coordinate this and organize this for you ." T h e T family lives in a somewhat spacious home (relative to their home in L o n d o n ) in Pitt Meadows , B C . T h e major source o f income for the family consists o f M r . T ' s monthly salary. M r s . T also works a night shift on a paper route. She works from 2:20 a.m. until 6:00 a.m. M o n d a y through Friday. B y Friday , he explained that his wife is "on her knees and she pretty wel l sleeps all weekend." A l though M r s . T is a trained registered nurse, the only employment that can accommodate the heavy demands from day to day is a paper route. M r . T stated, "But now she is delivering papers because that is all she has time or the wherewithal to do." H e is very proud o f his wife's accomplishments and explained, "She has a list o f qualifications coming out o f her ears as far as psychology goes. She has published hal f a dozen articles. She has been a co-editor o f several books and she has written several chapters o f books. Thi s is was what we cal l P . K . - P r e - K i d s . " T h e i r three children require a significant amount o f time and energy. "They are 24 hour a day children but I have to find time in-between to work, so does m y wife, this house needs cleaning, there is work to be done in the house. A l l this is secondary to the kids." A t present, they have had to make numerous compromises and accommodations for their two children with autism. Because their children with autism were not aware o f danger, everything in their house was locked up. H e described, " W e double lock the front door, double lock the back door, double lock the side gate, the fence around the house is six feet high, the people next door have built a six foot gate over their driveway just so 60 there is an additional stop for that chi ld not to go out on the main road." It appears that all doors are locked including the fridge. M r . T exclaimed, "In the future when she is 25 years o ld, and I am dead, she is not a full cost to society and l iv ing in an institution. I want her to be one o f the 40% o f chi ldren with autism who actually get out into shared accommodation or hopeful ly l ive on their own." Since arriving to Canada, they have discovered that "There are similar problems here, l ike Eng land , but there are bigger benefits, at least down the road. W e have lost a lot that we d id not think that we w o u l d have to lose. There are battles that we have had to fight that we should not have to fight. It is the responsibility o f the government that they are not taking up." M r . T expressed various concerns in regards to wait lists, insufficient transportation means, inadequate services in terms o f content and quantity, uncoordinated and inconsistent services. H e exclaims, "So it has been a lot o f work we should not have to do. W e have had to fight and fight to get what we need. I think that we expected it to be difficult, but we d id not expect that we would have to put forth so m u c h energy to get what we needed." M r . T has been impressed with the school system here in some ways, but very disappointed in other aspects. T o illustrate, he disagreed with the present system whereby a ch i ld at the age o f six years arrives in the classroom and has a teacher say, "there is something wrong with this chi ld ." H e contended that "It takes far too long to get a diagnosis at that point to help that chi ld in that first year, so that chi ld w i l l suffer and so w i l l the other thirty children." 61 M r . T was also very disappointed with the formal support system here. H e proclaimed, " Y o u cannot help a chi ld with autism b y sticking them in a corner. Y o u have to work with them o n a regular basis, and it is not just the ch i ld that needs the help." Without doubt, he is disgruntled with the present system, and sees r o o m for improvement. T h e present support system is not meeting his needs nor his child's needs. H e explained, " W e have significant behavioral problems that we have to deal with as a family, and those need to be addressed as soon as possible. T h e M i n i s t r y said, ' W e l l , we don't have any resources', and that is not satisfactory, but that is the answer we are getting." H e further explained, "The situation is made worse because there seems to be all these groups that seem to be providing service, but in reality they are doing a little bit rather than one group dealing with the whole thing. W e would cope better i f our children's needs were seen to." H e questioned the t iming o f his decision to move to Canada. H e stated, "It's unfortunate that we came when we did. Basical ly what we came to is...the whole thing is changing. . .We don't know what we can give you , we don't know what we should be g iv ing you ." M r . T shared a story where he felt bitter and angry towards a local polit ician. H e described her as being " A wonderful w o m a n I am sure, but cannot organize a drinking session in a brewery!" B e i n g a concerned parent who is in need o f more service, he attended a M i n i s t r y presentation in February which was intended to inform people o f the change in the Mini s try ' s policies. H e felt that the polit ician deceived the audience at the meeting, and he questioned her personal integrity, "Instead o f being up front and saying, this is what we want to accomplish - H e l p us make it happen - She just stood up there and 62 said, I have nothing to defend. It's not m y fault, but I am defending an empty shell. It was completely the wrong idea, and instead o f getting up there and saying on A p r i l 1st, everybody w i l l see a continuity o f their positions while changing the boards, we w i l l manage the delivery o f the contracts in this way. There was no coordinated plan presented..." H e continued, " Y o u can't get up in front o f people and say the same thing that y o u said before, and expect the audience to accept it. Y o u have to present something that said that we have m o v e d on, that said, we are under control." M r . T was very disappointed b y the level and quality o f service that he was receiving here in Canada. H e described the present system as not being one that adequately deals with children with special needs, rather it is a self-serving one. "Chi ldren with special needs are just... the only special needs are for Abor ig ina ls , or the poor...It just does not seem to be a general focus on children with disabilities. There is a focus on what gets the government in trouble not on what does m y chi ld need." H e explained that "They are not interested in children and adults who have special needs who are not a bother to anyone else." M r . and M r s . T found the current system to be ludicrous. H e has been seeking help since he arrived from the ' A t H o m e ' Program, and his requests for supports in the home are consistently denied due to insufficient funding within the C o m m u n i t y L i v i n g arm o f the Min i s t ry for Chi ldren and Famil ies . H e suggested that a change in the system w o u l d be both cost effective and more humane i f adequate home supports were provided for loving and caring families like themselves. H e described the responsibilities o f caring for a ch i ld with autism as being immense, and the burdens are too m u c h for a family to bear. H e wished that the system was more integrated, accountable and organized. H e exclaimed, " W e have to anticipate 63 for her all the time, but no one outside o f this family bothers to do it. I need someone from the M i n i s t r y to sit in this chair and tell us how this is going to be organized...I need a project organizer in the ministry to sit in m y house and organize it for me." H e expressed his frustration around a pressing concern at the moment. M r . T is bombarded with significant behavior problems each day. H e is very concerned that his oldest ch i ld with autism, who is a large girl , is going to seriously hurt the younger, and m u c h smaller one. " W e are very concerned that Samantha is going to seriously harm Susan. I have told every single person that this problem exists, and I have not had one single person cal l me back saying that we have put this in place to try and help. N o b o d y has heard us!" M r . T was very concerned about the money that he is forced to spend. " I spend $170.00/ month on nappies for m y seven year old, and the Min i s t ry said this is normal! It is ridiculous that I cannot get that back in some form o f credit whatever way." Secondly, in spite o f the serious safety concerns o f having to walk across two very busy highways to get his children to school , he complained that he cannot afford a second car. T h i r d l y , he complained about how his money is spent. "I can spend $10,000.00 and bring somebody in here to work with m y chi ld for one week. A t the end o f the week, the person w i l l k n o w something about m y working with m y daughter. T h e problem is, I w i l l then have to spend another $10,000.00 for another support worker next time. What I need is some way o f getting regular intermittent support to deal with the specific problems that I a m hav ing wi th m y chi ld ." M r . T talked about how expensive it is and compares the system to his system at home. "In this country right now, you can be sick for free, and y o u have to pay to get 64 wel l . In E n g l a n d , before we came over here, it was free to be told y o u were sick and it cost the same amount no matter what the costs o f the drugs, to get wel l . It costs 5 pounds thirty to get wel l . In this country, it costs whatever the drugs cost. It doesn't matter i f the government gives it back to y o u later. It costs $10,000.00 to get wel l . It is the same approach with m y daughter...It is after the fact that you get your money back. Spend it up front. W e l l , I can't spend it up front. I don't have the flexibility to spend it up front. It is on me to sort it out." A s wel l , he explained, "there is no consideration in this province for Lovaas or A B A techniques. It was recently in the S u n about a w o m a n who had to give up two Registered Retirement Savings Plans to pay for A . B . A . help for her chi ld . That is ludicrous!" T i m e is a valuable commodity in their home. O n one level, he accepted the fact that there is little time for themselves. O n another level, one can easily sense his frustration, disappointment, and feelings o f guilt when he stated " A s far as time for ourselves, we make what we can. W e spend time together every morning and evening." " A s a family, we don't do anything together. W e can't take the kids anywhere together." "The person it really hurts is m y oldest daughter who gets about one tenth o f our attention. She is left out in the co ld in terms o f time from either o f us." It is clear that there are not enough hours in the day to accommodate all the tasks and needs o f everyone. General ly speaking, he is very pleased with the quality o f care provided b y respite care; however, he complained that the quantity remains to be scanty. H e expressed great appreciation for the respite care workers that they have coming in. 65 In terms o f l iv ing a 'normal ' life, they appear to feel trapped, frustrated, and helpless. H e stated, "It has been more work to get things organized." M r . T wished that they could go away on vacations and trips, but cannot due to the extent o f organization that needs to be done and the numerous safety concerns. Sometimes he wished that he could do things with his family that other normal families do. H i s wife said every once in a whi le that " M a y b e we should take them (the children) camping, because it seems like such a wonderful thing to do in the summer with kids," but it frightened both o f them to think about Samantha waking up i n the middle o f the night in a tent." It seemed that everything is a b ig ordeal, unlike the experiences enjoyed b y other typical families. 66 Chapter V Discuss ion T h i s chapter deals with the findings o f the interviews. In this analysis, when I refer to parents, I refer to the participants in m y study. It is clear from the case portraits that the immigrant parents caring for their children with autism discussed a diverse set o f experiences. A l l three families had contextual similarities in that they had recently immigrated to Canada, and in two cases, the parents were caring for two children with autism. A l l fathers were employed b y an outside agency to provide financial support for their families, and all mothers were the primary care givers and all received help at home from their partners. In spite o f these contextual similarities, the differences in terms o f backgrounds, parents ability to speak Engl i sh , severity o f autism, manifestations o f the ch i ld with autism's behavior, birth order, gender, economic circumstances, and spiritual orientations between these families should be studied i n their o w n light. I was surprised to discover the c o m m o n themes shared b y all three families. Before an investigation into the c o m m o n patterns shared b y all three families are discussed, m y impressions o f the interviews wi l l be informative. T h e Interviews Surprisingly, given that people tend to talk about things they miss, these parents who recently m o v e d to Canada were wi l l ing to talk about their present and future situations more readily than their pasts. In these cases, perhaps being the problem solvers that they are, they are solution focused, and see little value in looking back. It is interesting to note that M r . and M r s . T speak Eng l i sh as their first language. Consequently, a language barrier does not hinder their abilities to manipulate the systems 67 around them. C o m p a r e d to the other two families, they appear to be in a stronger posit ion to actively support their children, as their anecdotes reflect advocacy. T h e primary subject matter o f the interviews related to chi ld rearing; adjustment to a new environment was secondary. T h e tendency to discuss autism more than immigrat ion m a y have been influenced b y the format o f the interview. B o t h issues p layed a role in their experiences. However , the different backgrounds and immigrat ion experiences were not predominant in their stories. T h e parents' time was occupied b y a range o f dai ly tasks and responsibilities necessary in raising a chi ld with autism. Consequently, they do not have the time to dwel l on immigration issues. In fact, I suspect that their story patterns w o u l d be very similar to those expressed b y Canadian families. T h e unstructured interviews in themselves were enlightening in that the parents disclosed a significant amount o f information in a relatively short time span, and there were few probes from me. Often a single question resulted in a lengthy oration. T h e stories f lowed freely. Feelings o f frustration, sadness, anger, resentment, and fear were readily revealed i n the interviews. It seemed that these parents do not get the opportunity to share their experiences in caring for their chi ld with autism with another adult very often. Hence , they embraced this opportunity. Interviews in their homes had distinct advantages: Parents were in their home environment, and many situations occurred within the interviews wh ich prompted discussion about some pressing immediate issues. A s well , m y time spent with them gave me a first hand view o f their demanding chi ld rearing schedules. A l l parents tolerated a high level o f activity during our interview sessions. In the short time that I was in their homes we were constantly interrupted b y each chi ld for 68 various reasons. In the span o f two hours, M r . T changed his seven year o ld chi ld's diaper, engaged in an argument over saying "no" to feeding his insistent five year o ld ice-cream for lunch, fed cheerios to his five year o ld in-between meals, intervened in a dispute between his eldest chi ld and middle chi ld with autism, and untangled from a bush a spool o f dental floss wh ich had been thrown out a window in his home. M r s . P changed two diapers; fed her youngest chi ld a bottle; comforted two children with temper tantrums; attempted to pacify her ten month old chi ld with hugs; and consistently got up to her autistic b o y o f f counters, shelves, and tables. M r s . K and I were interrupted every few moments b y her chi ld who increased the volume on the television. A s wel l , in order to avo id confrontation, she permitted her autistic son to eat eight popsicles o n his o w n accord during the span o f a single interview. T h e Relationships It seemed that immigrant parents caring for a chi ld with autism were not only faced with the demands o f raising a chi ld with autism; as wel l , they were being influenced and shaped by a new environment and are bombarded b y interrelated forces and new relationships all around them. In these open ended narrative interviews, the parents talked about their experiences. Relationships and interrelationships are difficult processes to define, describe, and understand. However , patterns, trends and tendencies provide helpful clues for understanding, supporting, and recognizing the varied experiences o f immigrant parents (Jensen, 1992). Hence , in this discussion, a focus on their relationships within the family and interactions with others seems pertinent. These accounts depicted the variations o f ways o f which children with autism related to the wor ld . T o illustrate, M r . K described his chi ld as being, "high functioning -69 academically able - who experiences social difficulties". M r s . P described one o f her children, "I really want to talk to her...really talk, but y o u can't do that, but now she has improved a lot, and she is really smart in some ways. She can do things. She can draw, she has good vocabulary, and she can speak Eng l i sh now." M r . T described one o f his children, " She has an I.Q. that is comparable to any chi ld her age. She has no mental retardation as far as we can see. She has a communicat ion problem." These parents' descriptions o f their ch i ld with autism illustrate the variations o f their children's ways o f relating to the world . N o t surprisingly, the case portraits suggested that the focal point o f the participants was their ch i ld with autism. T h e primary relationship with the ch i ld with autism was different from other relationships in that autism is a life long disability. T h e chi ld has impaired communicat ion skills; impaired social relationships; and abnormalities in speech, language, and communication. D u e to these factors, establishing a relationship with a ch i ld with autism often requires more energy, and it is the most powerful and enduring relationship o f all . M o s t o f the relationships outside the family unit had some relationship to the pr imary relationship o f the immigrant parents and their children with autism. A s parents worked hard to teach their children and make them feel integrated and part o f the wor ld , the chi ldren with autism, given their condition, felt apart; they felt isolated from their families and the communities o f wh ich the families were working hard to be a part. T h e disengaged chi ld with autism remained autonomous and segregated. In some ways, the segregation can be looked at as a rigid boundary that exists between the ch i ld with autism and the rest o f the world . T h e term 'enmeshment' on the other hand, can characterize the extreme amount o f emotional closeness and demands for loyalty and closeness in these immigrant families l iv ing with autism (Becvar & Becvar , 1996). D u e to the demands on them, there was a lack o f personal separateness, time, and space. In many ways, the indiv idual boundaries o f the parents were blurred as many parents d id not have the luxury o f developing a coherent sense o f self-distinctive from the all encompassing family role expectations. In order to integrate their children with autism, parents depended on their intra-familial strengths and systems outside the family for the support and nurturance they needed and desired. T h e relationships that parents had with their children with autism were all encompassing. It was clear in the interviews that these parents would suffer for their children, and they wanted nothing more than for their children to lead normal and happy lives. E v e r y family made significant compromises in the name o f their children. A t least one parent in each family gave up desirable employment or a promotion in their home countries; all left their friends and families in hopes o f finding a more conducive environment for the development o f their children. Indeed, parents have sacrificed significantly in all domains in order to fulfill their children's needs. M r . K ' s statement sums it up, "Parents with autism should sacrifice their lives for their ch i ld ." Intra-Familial Strengths U n i q u e qualities and different combinations o f intra-familial strengths were apparent in all three families. T h e c o m m o n themes fell under four m a i n headings -F a m i l y Identity, Information Sharing, and Coping/Resource Mobi l i za t ion (Deal , Trivette & Dunst , 1988) and Extra-Fami l ia l Relationships. It is important to note that these family themes were primari ly interpersonal and intra-familial in that they occurred within the 71 fami ly unit. These strengths influence each relationship i n some way within the fami ly unit, and are simultaneously influenced b y forces outside the family unit (Deal , Trivette & D u n s t , 1988). F a m i l y Identity F i v e relevant themes were apparent in all three families in terms o f F a m i l y Identity. T h e y include commitment, appreciation, allocation o f time, sense o f purpose, and congruence. Commitment . T o begin, all families demonstrated commitment towards promoting the wel l -being and development o f their chi ld with autism. T h i s is evidenced b y their mutual decis ion to move to Canada in hopes o f a more suitable lifestyle. In order to help their chi ld , the parents reported that they have made numerous sacrifices and were absolutely devoted to their cause. M r . K stated, "Parents with children with autism should sacrifice their lives for their chi ld ." M r s . P proclaimed, " M y children are m y priority." M r . T asserted, " A l l this is secondary to the kids." These parents are dedicated, obligated, and unselfish on their quest to help their children. Apprec iat ion . I noticed that all parents expressed a deep appreciation for one another and encouraged each other to do better in all areas o f their lives. T o illustrate, M r . T was very proud o f his wife's accomplishments "before kids." A s wel l , on the w a y out, he acknowledged the beautiful hanging baskets that his wife made. M r . K seemed proud that his wife was in good physical shape and took the time to work out. M r . P was proud o f his wife's skills in computer software, and encouraged her to enhance these skills here i n Canada. A s wel l , they gave credit when credit was due both inside and outside the family unit. These families expressed a true appreciation for those people in 72 the field who provided practical, long term understanding and support over the years without judgment and who had helped solve many o f the challenges that they were faced with. Stories about helpful people in their countries o f origin and in Canada were pertinent. F ina l ly , they took time to appreciate the simple joys in life. T o illustrate, M r s . T loved to garden. In spite o f the time constraints, she found time to cultivate her hanging baskets. M r . and M r s . K talked about the beauty o f the mountains and the natural beauty o f Br i t i sh C o l u m b i a . M r s . P described the beauty o f downtown Vancouver , " W e saw the beautiful mountains and Canada Place." It was interesting to note that the fathers took great care o f the mothers. T h e y he ld their wives in h igh regard and exhibited great adoration. In various ways, they all showed their love and respect. F o r example, in all the interviews, the Fathers mentioned how hard their wives worked, and all took appropriate actions to alleviate some demands o f their overwhelming work responsibilities. That is, all the Fathers participated in daily house ho ld chores and worked irregular hours in order to accommodate their wives and families. A s wel l , their children with autism received utmost respect. T h e y continuously strove to give their children the sense that they respected their individuality, and they had rights and abilities. The ir stories impl ied that their children were always heard, appreciated, and respected. A s well , their devotion was evident throughout the interviews. A l loca t ion o f time. T h e allocation o f time was a relevant theme in all three families. It was very clear that every chi ld with autism requires twenty- four hours a day care. T h e responsibilities involved in raising a chi ld with autism are cumbersome, and rest pr imar i ly on the family. A lot o f their time appeared to be occupied b y the day to day care o f their ch i ld with autism which included feeding, bathing, changing diapers, 73 discipl ining, and generally protecting them. M r s . P explained, "They can't talk, they aren't toilet trained, no matter how hard I try to teach them, they are slow, hyperactive. . .all these things just eat up your time trying to take care o f them." In all three cases, doors had to be locked in order to protect their children with autism from injuring themselves; constant surveillance was required at all times. There seemed to be no time to relax. E v e n when the children were at school, parents worried about their chi ld. Some stated that they kept their cel l phone on at all times. These parents enjoyed the time they spent together in spite o f the difficulties whether it be at the playground, in the mal l , or trips downtown. A l l parents seemed frustrated about the scarcity o f time spent together as a couple. Moreover , they wished that they could do more activities as a whole family l ike a normal family would . T h e lack o f family activities seemed to be a cause for disappointment and frustration for all parents. General ly speaking, all three families seemed to have more time for each other in Canada compared to their countries o f origin. Some expressed that they have more time with one another here in Vancouver; however, this time is spent in the home. D u e to inadequate childcare, they d id not have the opportunity to go out together. N o n e o f the couples reported that they had time for each other. Sense o f purpose. T h e sense o f purpose for all three families was a drive to make their chi ldren as normal as possible. T h e y all exhibited an overwhelming sense o f responsibility. That is, each parent demonstrated a deep caring for their ch i ld and had an expectation that their chi ld with autism be accepted and loved as a person. E a c h parent sought integration into society for their children with special needs. Indeed, this sense was strong in all three families wh ich seem to give them hope and momentum required 74 to get them through the trials in their journey. O n another level, all parents seemed upset that there was not a clear solution to their children's condition. M o r e than anything else, they wanted their chi ldren to reach their opt imum potentials, and they hoped that their chi ld w o u l d have r ich opportunities in the future. T h e y all expressed concern about their chi ld's abil ity to relate social ly to people, however, they expressed pride i n their individual strengths. Congruence. A l l parents demonstrated congruence regarding the importance o f assigning time and energy to meet their needs. E a c h parent had to make compromises in order to function as a family. B o t h parents were in harmony and demonstrated affirmative action in trying to meet their needs. T h e y were l ike-minded and they worked together. F o r the most part, parenting styles were similar. T h e y mutually supported and accommodated one another in order to provide an appropriate balance o f firmness and nurturance for their children with autism. A l s o , in every family, the mother had the major care-taking role o f supervising, initiating, and organizing activities around the home. In all three homes, the fathers have adopted many chi ld care responsibilities on top o f being the sole financial providers in the family. I noticed that the parental relationship was very strong. T h e m o v e to a new country seemed to have strengthened the parental subsystem and seemed to have enhanced the intensity o f the relationship with one another. M r . K ' s statement sums it up, " O u r relationship has become better and better (here in Canada) because the only person that we can rely on is each other." It seemed that the c o m m o n stress factor for both mothers and fathers o f children with autism was their care g iv ing responsibilities. A l t h o u g h the constant and persistent amount o f care that was required when keeping a family member with autism in the home is draining and exhausting, it 75 seemed to keep the parental unit in synchrony. T h e y d id not have time to dwel l or drift apart from each other. Indeed, the parents were in true alliance with one another, and they needed one another. M r s . P stated, " W e have to be strong for them. W e have to do our best for them...I think that we became closer (in Canada). W e understood each other. I have no t ime to enjoy m y s e l f and he too... I mean, it's just us here., .nobody else." A l t h o u g h compromises had to be made, they worked together as a team. D u r i n g every interview, the chi ldren with autism placed many demands on the parents. E v e n in these stressful moments, the parents d id not order, direct, argue or command. N o r d id they judge, criticize, disagree, or blame. Rather, parents continued to praise, agree with, and posit ively evaluate their children. A s wel l , they reassured, sympathized with, consoled and supported their children. E a c h family was a cohesive and headstrong team pul l ing together in the face o f numerous obstacles. Information Sharing T h e Information Sharing category refers to two aspects o f family strengths. C o m m u n i c a t i o n among family members in a way that emphasizes positive interactions is one important aspect. T h e other refers to rules and values that establish expectations about acceptable and desired behavior. Communicat ion . T h e parents seemed to have excellent communicat ion with one another and with me. T o begin, both parents were able to look at the wor ld through their spouse's frame o f reference and understand what his/her wor ld was like. In the interview, they communicated his/her understanding to one another in a w a y that demonstrated an understanding o f their spouse's feelings. A s wel l , both spouses expressed deep respect for 76 one another. T h i s was demonstrated in both active and passive ways in their stories and in the present during the interview. Third ly , the couples demonstrated warmth towards one another primari ly through non-verbal means such as smiles, touches, and hugs, w h i c h reflects a concern and deep respect for one another. F inal ly , I was very impressed with the level o f genuineness in our interviews as they seemed to feel comfortable. A s wel l , their body orientation, posture, gestures, facial expressions, voice, and their wil l ingness to share their valuable time with me had a spontaneous and defenseless air. A l t h o u g h I d id not probe or question, they did not withdraw, distract, or divert away from sensitive issues in their lives. The ir efforts to communicate with agencies in the community were evident i n all three families also. Because they relied on the outside agencies to assist them in various ways, they all made an effort to p lug themselves in. In some cases, parents have had to fight in order to get their needs met b y means o f letters, talking to people in charge, and informing different helping organizations o f their present situations. B e i n g that the exchange o f information and effective communicat ion skills are considered to be essential characteristics o f well-functioning systems, their ability to articulate their thoughts and listen to other people's ideas was a strength evident in all o f the three families. Rules and value systems. These families appeared to have similar rules and value systems. T o begin, c o m m o n family values dictated that parents monitored the information they shared with me. F o r example, acceptance into the community was important for all three families. Consequently, the information that they chose to share with me had a polite and accepting tone in light o f their drive to be accepted. M r . K expressed worry about the confidentiality o f the study. M r . T continuously interrupted h imse l f and said, "There are many things that are going right too," and then continued to express his frustrations. In all three cases, the maintenance o f family identities involved a process i n w h i c h the system boundaries screened information coming in and out o f the family systems depending on family values (Becvar & Becvar, 1996). C o p i n g / Resource Mobi l i za t ion T h e C o p i n g / Resource Mobi l i za t ion category refers to five aspects o f family strengths. T h e y include, coping strategies, problem solving abilities, opt imism, flexibility, adaptability, and balance (Dunst, Trivette, & Dea l , 1988). C o p i n g strategies. A l l families exhibited various coping strategies that promoted positive functioning in dealing with both the normative and non-normative life events. In some cases, they read novels, some exercised, and others vented b y vo ic ing their concerns to people in power. A l l parents coped in different ways with the demands o f every day l iv ing. Problem solving abilities. T h e y all exhibited tremendous problem solving abilities portrayed b y their ability to move to a new country, learn a new language, f ind suitable housing, seek appropriate employment, make new friends, find local schools, and p lug into the social service network. E a c h task required organization and ambition, al l qualities that each family possesses in vast quantities. A s well , it was clear that these parents were the experts when it came to caring for their chi ld. E v e r y task was a problem, and each parent approached it with pragmatism and inspiration. T h e y were all case managers and advocates for their children while trying to make sense o f their options in their new country. 78 O p t i m i s m . O n e o f the most striking features in these families l iv ing with autism was their undeniable ability to be optimistic and hopeful in the face o f some adverse circumstances. T h e y were persistent and headstrong. In spite o f their childrens' learning disabilities and difficulties relating to others, all parents had great opt imism for the future, and they bel ieved that anything is in the realm o f possibility. T h e y bel ieved in their children and all took the time to read to them, teach them new skills, and assist in their language development. T h e y hoped that their children would lead normal lives one day. A s wel l , some bel ieved that they w o u l d eventually land a desirable job in the work place here in Canada; In two cases, the fathers bo ld ly accepted the compromises they were forced to make in the employment sphere. B o t h accepted jobs w h i c h they believe to be overqualified for. M r . P was an experienced government executive in the Phil ippines, and he took a job as a night maintenance worker at M c D o n a l d s . H e was disappointed that his skills are not presently valued here in Canada, but believes that they w o u l d be one day. M r . K accepted a sales job which he too believed he is overqualified for. B o t h people were wi l l ing to endure the present unfortunate circumstances with the expectation that they w o u l d land better paying jobs in the future. Nonetheless, they all experienced hope for the future and the life that they were go ing to bui ld for themselves in Canada. Without doubt, opt imism alone can be very empowering. I was struck b y their sense o f opt imism and hope w h i c h was demonstrated in their stories about their mother countries and\ in Vancouver . T h e i r opt imism was present in their quest to listen to all options, try new ideas, and maintain a sense o f humour throughout the interviews . Flexibi l i ty and adaptability. A l l parents demonstrated extensive degrees o f flexibility and adaptability in the roles necessary to procure resources to meet their needs. A l l three families appeared to be dealing with the challenges o f caring for chi ldren with autism in realistic and productive ways. Indeed, they were faced with different obstacles daily w h i c h required them to alter the roles and rules within the family. T o illustrate, spouses arranged flexible work schedules in order to provide direct caring to their children. A h igh amount o f personal sacrifice on the part o f the parents was evident i n all the stories. M r . K explained, "I was very happy in Seoul because I was promised management there, but I wanted to take care o f m y family, so I m o v e d here. I a m very happy now as I have the time to support m y family right now." M r . P talked about his m i x e d feelings in g iv ing up some family time, "I feel really bad. I want to be with them. W h e n I work especially leaving them altogether at night." M r . T described his wife's expertise, "Al though she is trained as a registered nurse, the only employment that can accommodate the heavy demands from day to day is a paper route. She is now del ivering papers because that is all she has time or the wherewithal to do." These compromises were made in each family in the areas o f career limitations and financial security. A l l parents have been forced to make compromises in their social life due to the difficulty in f inding suitable chi ld care arrangements. A l l parents mentioned sleep deprivation in one form or another, and somehow seem to carry on with their dai ly tasks. In order to provide inordinate amounts o f long term care-giving to their dependent chi ld , all parents have had to make compromises in one form or another. T h e openness and 'closedness' o f each family differed to some extent to personal circumstances and the need for assistance. F o r example, the degree to wh ich each system 80 screened out or permitted new information varied. It seemed that the families al low information and permit change as appropriate, while screening out information and avoiding changes that would threaten the survival o f the family unit. F o r example, M r . and M r s . K appeared to be very inquisitive and asked me numerous questions about the V a n c o u v e r Schoo l System, and how it dealt with children with special needs. M r . T , on the other hand, was more jaded, and was not interested in what I had to say in the least. H i s comment portrayed his position, " W i t h all due respect to yourself, I understand w h y y o u are here, but y o u should not be. I mean to me, your brief should not be what is wi th the service here, but what is right with the other services in other countries that we should be apply ing here..." H i s statement impl ied that he is frustrated with the problem-focused and ineffective systems around h i m , and has no desire to hear yet another redundant opinion. M r . and M r s . P , being the most recent immigrants to Canada, were still in a reactive state, and were in the process o f understanding the systems around them. T h e y d id not ask me many questions; however, they seemed enthusiastic and very open to more information. D u e to the heavy chi ld rearing demands placed on the parental unit and need for survival , every family system required some degree o f openness in order to receive assistance from the outside. A l l parents, being immigrants to Canada, seemed to be very open to the ways o f their new society and made efforts to be assimilated b y their new society and to accommodate certain customs and rules. T o illustrate, M r . and M r s . P questioned me about Canadian law. T h e y proclaimed, "In the Phil ippines, we sleep i n one room. Here , it is against the law... Y o u have to separate the children." T h e y were sensitive to Canadian customs, and wanted to conform in as many ways as they could . M r . P stated, "I am trying to have Canadian friends. Sometimes I go b y m y s e l f and meet 81 Canadian friends. If I don't do that, I w i l l only hang around with Koreans ." M r . T ' s efforts to go out and make new Canadian friends demonstrated his degree o f openness to the new culture in wh ich he lives. Balance. It was apparent that each family tried to maintain a sense o f balance i n their private worlds. T h i s was achieved by the use o f both intra- and extra-familial resources for meeting their needs. In order to maintain balance, a combination o f their intra-familial strengths combined with extra-familial resources was critical. T h e recent arrival to Canada and the inevitable adjustments combined with the demands o f raising a ch i ld with autism left these families in a state o f flux. It was a dynamic process whereby every couple tapped their strength and courage to maintain a functional fami ly system. In hopes to reduce the amount o f stress on the family unit, parents uti l ized intra-, inter-, and extra-familial resources. Extra-Fami l ia l Relationships Immigrant parents util ized numerous extra-familial resources and social support systems. These relationships were important to them. T o enhance their emotional, physical , informational, instrumental, and material situations, the assistance provided b y others was essential to maintain their health and wel l being, promote adaptations o f life events, and foster development in an adaptive manner. Extra-famil ial resources inc luded the educational system, Min i s t ry for Chi ldren and Famil ies , A u t i s m Society o f B . C . , finances, and an informal support network o f friends. T h e Educat ion System O n e publ ic enterprise with wh ich each family had an integral, but not necessarily good relationship, was the school system. E a c h family developed a relationship with the 82 principal , the teacher, and i f necessary, the school trustees and board administrators. T h e relationships that parents had with teachers, special education assistants, and principals were very important to them, and were a primary element in the past, present and the future. The ir expectations o f the educational system were more futuristic. In other words, how they talked about the education system in Canada was not so m u c h in the present as m u c h as what they hoped the system would eventually do for their ch i ld i n the future. T h e y hoped that the educational system would fix their child's condition, and teach him/her the skills necessary to lead a normal life. E a c h family immigrated to Canada for primari ly educational purposes, it is safe to say that this relationship played a prevalent role throughout their lives for these parents. T h e relationship with the education system was the most encompassing relationship they had in their new communities. T h i s was apparent b y the amount o f time they spent on talking about their child's education. T h e relationship that each parent had with the school system is often confusing and conflicting due to various reasons. A l l the parents have been and continue to be apprehensive about their interactions with the school. In all three cases, at some point i n the past or present, when the immigrant parents and the school are required to engage with one another around their child's autism, the relationship was frequently characterized b y crisis, tension, defensiveness, blame, and miscommunicat ion (Carlson, 1992). T h e trepidation with wh ich parents approached the school does have merit, as the relationship was a temperamental one. M r . T exclaimed, "There is no allowance for parents to have any involvement in any o f the decisions about children especially in the 83 school system." A l l education systems should provide services that are to be available i n close proximity and accessible without reference to physical , psychological , social, l inguistic, or other barriers; and that are comprehensive and appropriate in that they address the priorities identified b y the family at a level o f service sufficient to meet their needs (Carlson, 1996). In M r . T ' s case, he contended that his child's needs are not being met. In describing the union scandal, he stated, "If she had not received it, we, the school , the teachers, w o u l d not have found out until the first day o f school and nobody w o u l d have k n o w n who this person was, and I am supposed to introduce a chi ld with autism who cannot cope with walking down the opposite side o f the street. It is not reasonable!" In consideration o f the fact that a chi ld with autism does not fit the 'academic n o r m ' in that they often differ in the physical , psychological , social, and linguistic domains, these criteria previously mentioned were laden with guilt, blame, frustration, anger, resentment, and sadness on behalf o f the parents. Thus , persons in the education system were dealing with more than individual ized educational programs. Rather, they were work ing with parents' hearts and souls - their children with autism who, without doubt, were the most sensitive and central issue in their lives. In essence, this stormy relationship was a result o f school issues around their children. Often these issues were v iewed as signs o f future difficulty for their ch i ld with autism over wh ich they felt they had little or no control. A s wel l , all six parents carried with them some experiences from their previous school systems in their home countries. In describing the education system in their home country, M r s . K explained, "a few years ago, the Min i s t ry o f Health in K o r e a d id not even know the meaning o f autism!" M r . K continued, " A s parents o f a chi ld with autism, even the government does not have any knowledge, so how can we as parents educate them? The ir understanding o f autism and insecurities are not even known!" M r . K contrasted the education system i n Canada with the system in K o r e a , " Here , I can say m y son is autistic, and the school system is wi l l ing to help...most teachers support the ch i ld with special needs..." W i t h h igh expectations and an effort to prevent similar past mistakes, they brought with them their own biases and aspirations. M r . T proclaimed, " W e have always thought that Canada was full o f opportunity for us compared to being in E n g l a n d . " Thus , their expectations may be higher and their demands and frustrations greater. T h i s might posit ively or negatively influence the relationship they have with the present system. Secondly, in order to understand the relationship that parents and schools shared, it was helpful to v iew them in terms o f two systems such as the family and school w h i c h represent purposeful entities comprised o f organized and interrelated parts (Connel ly & Cland in in , 1990). L i k e immigrant parents, the school system is an enterprise that is clearly open to the vicissitudes o f publ ic opinion and social change. Moreover , l ike a family, a school has a wel l articulated bel ief systems that strongly influence its staff functioning (Carlson, 1996). L i k e each family, a school system has a past, present, and a future. These parents were often confused about their relationship with the school system in B.C., and due to their o w n pressing demands, often failed to see specific contextual dimensions such as l imited financial resources, l imited time schedules, curriculum objectives, and general publ ic demands for teacher performance and accountability. D u e to the fact that the school system is an open and ongoing system subject to diverse opinion and a changing social context, it is not a surprise that friction occurs 85 occasionally. In some cases, immigrant parents o f children with autism perceived the current educational service delivery to children to be inadequate. T h e M i n i s t r y for Chi ldren and Famil ies In theory, the Min i s t ry for Chi ldren and Famil ies provides these parents with financial assistance, respite care, or behavior modification programs. Such supports are essential to the survival o f these families. W h e n parents discussed the experiences in their home countries, they all talked about the important role that various agencies played in their lives. Here , in Canada, assistance from the Min i s t ry in areas such as advocacy, coordination o f resources, supply o f information, and crisis intervention were very helpful. In all the interviews, it was apparent that their relationship with the M i n i s t r y had provided them with some essential services such as the sharing o f resources, communi ty services, and respite care wh ich provides parents with a little time for themselves. A l l families reported that they had met with a social worker, and they were all informed o f the various services that were available to them. O n a positive note, families appreciated that there is a recognized need for a broad based continuum o f services for families with chi ldren with autism. However , the families w h o m I interviewed were somewhat confused about the service delivery o f the Minis try , and feelings o f ambivalence were apparent. T o illustrate, on the one hand, all parents expressed sincere appreciation for the presence o f some o f the services which the Min i s t ry has provided such as respite care, and I sensed feelings o f sincere gratitude. T h e y appreciated the efforts made b y the Min i s try . O n one level the Min i s t ry attempts to respect the needs, wants, and desires o f these immigrant families and they are doing their best to maintain the ch i ld with autism in their home environment. However , the huge number o f cases and the level o f intensity 86 o f services wh ich are provided are insufficient. H a v i n g to provide 24 hour per day care for a ch i ld who is out o f control m u c h o f the time takes its toll. M a n y parents expressed frustration concerning their inability to find consistent and coordinated services for their families, f inancial assistance, behavior modification programs, and coordinated case management. O n e family talked about the discrimination inherent in the relationship between themselves and the Minis try . M r . T asserted that politicians are not attentive to the needs o f autism. H e suggested that the Min i s try for Chi ldren and Famil ies is currently preoccupied with ch i ld abuse, hindering the ability o f social workers to effectively work with the needs o f parents, like themselves, l iv ing with autism. A s wel l , M r . and M r s . K spoke for all three couples, in their frustration with the generic programs implemented b y the Min i s try with no specialized knowledge o f autism. T h e y complained that the current system does not address the individual needs o f immigrant parents l iv ing with autism. H e stated, "I know that Canadians already spend a lot o f money to give children like our son a full time teaching aid; we have many things but these are things that take care o f the chi ld . It should be more aggressive and proactive to heal the chi ld with autism." N o t one o f these families has received any behavioral support for their chi ldren with autism from the Minis try . T h e y were all disappointed b y the lack o f service in this area, as all understand the importance o f early intervention strategies in order to provide their chi ldren with basic skills. 87 In contrast to the discussion around the educational system, discussion about the M i n i s t r y was focused on the present. In some ways, it can be looked at as fulf i l l ing their basic need for survival . T h e Min i s try provided them with the fuel to s imply subsist. These parents were recent immigrants to Canada. Consequently, they were in survival mode. However , a closer look revealed families who were receiving few services in spite o f the magnitudes o f their work. In two o f the cases, sleep deprivation was a serious concern for at least one spouse. Over time, a weak bond with outside agencies cou ld leave these parents emotionally and physical ly exhausted, and at risk for a serious crisis. Parents were pleased with the quality o f respite care for example; however, they all expressed a need for more o f it. A l l families were disappointed b y the level o f care that they were receiving and attribute it to various things such as the restructuring o f the M i n i s t r y or B . C . ' s recession. A l l families hoped that the implementation o f these services w o u l d improve in the future. T h e A u t i s m Society o f B . C . These families reported that the A u t i s m Society o f B . C . was very instrumental and facilitative. T h e Society served as a good networking tool and pointed families in the right direction. T h e A u t i s m Society o f B . C . seemed to support parents as advocates for their children; informed parents o f relevant information and services; promoted communi ty participation in attaining their objectives; and provided a network between these families and other agencies. 88 Finances A l l the parents were concerned about their relationship with finances as autism often results in severe costs to these families. T h e cost o f diapers, behavioral modif icat ion programs such as the Lovaas method, drug, speech, and massage therapy, and chi ld care were some o f the worries expressed b y all families in their countries o f origin and in Canada. In particular, the Fathers reported more stress as the sole income providers. Informal Support System A l l parents expressed a need to make friends with w h o m they cou ld depend o n and socialize with. T h e y needed to feel a sense o f belonging to a group in order to feel more integrated and part o f the community. In Vancouver , some o f their friends attended meetings and social events with these groups. Unfortunately, they expressed concern about not being able to attend because they d id not have the time or chi ld care. T h e need for a care giver was a critical need for all parents. Intra-, Inter-, and Extra-Fami l ia l Emotions In the interviews, immigrant parents described their experiences in caring for their ch i ld with autism. T h e y shared many details, and in spite o f some language difficulties i n two o f the cases, they painted clear and colourful pictures o f their experiences. It seemed that the mothers expressed stories more on an emotive plane, whereas the fathers were more cognitive. Nonetheless, their personal experiences directed the unstructured interviews. It was impl ied in the interviews that many c o m m o n feelings such as guilt, pain, frustration, anxiety, fear, anger, sadness and embarrassment influenced every relationship. Positive emotions such as love, devotion, and hope were also evident. T h i s mosaic o f emotions were woven throughout the interview and were not tied to specific 89 incidents. Rather, the emotions were woven deeply into the fabric of their existence. A look at the multitude of intra-, inter-, and extra-familial emotions which played a significant role in the dynamics of the family unit is relevant. Sadness All the parents reported feeling sadness at various times, some more than others. Mrs. P exclaimed, "The first two weeks, and even in fact now, we are both very sad and we just cry - both of us." Mrs. K. described her life as being "Hell", and proceeded to spell it out: "H-E-L-L !" Feelings of sadness were apparent when parents discovered that their children are autistic, their child did not meet the developmental milestone of his/her age level, attempted to teach their child a new skill, missed their friends and families, or when they engaged in a frustrating beurocratic battle. Frustration The one emotion that was evident in all the interviews in various degrees was frustration. Whether it be trying to teach their child with autism basic skills within the home, dealing with behavior problems, or facilitating services in the community, the frustrations were predominant. To illustrate, Mr. K expressed his frustrations in the education system here in Canada, "They are not aggressive and proactive in treating children with special needs." Moreover, he goes on to say, "They think more about taking care of the child, and that is no good." Mrs. P described her frustrations in raising a child with autism, "He can use a spoon, and apple, I put bits and pieces there and he can pick them up but when you make him pull his pants up, he can't do it! I just don't understand it. I would like to teach him, but I just cannot get it... it is very frustrating, and I cry a lot of buckets full!" Mr. T's statement summed up his numerous frustrations in regards to the 90 services around h i m , "There were battles that we have had to fight that we should not have to fight. It is the responsibility o f the government that they are not taking up." It appeared that M r . and M r s . T ' s frustrations were more than annoyances. Rather, his frustrations have culminated into outright rage. H e was angry at the systems all around h im. Gui l t and S e l f - B l a m e A n abundance o f literature suggests that mothers o f children with autism are incapacitated by feelings o f guilt and self - blame (Fong & W i l g o s h , 1992; M e s i b o v & Schopler, 1984; Rousey , Best, & Blacher, 1992). Generally, the interviews revealed people who d id not feel guilty or blame themselves. Rather, parents cared for their chi ldren deeply; had taken ownership o f their condition, and were on a serious quest to make their lives as harmonious as possible. T h e y were pragmatic, accepting, and head strong. A n x i e t y A l l parents reported feeling anxious about one thing or another in regards to their children or other circumstances in their lives. M r . K reported, " W h e n I decided to immigrate here, I was very worried, and I was worried about how m y son would be in this society." In regards to describing his present financial situation he stated, "Sometimes I don't l ive wel l . I can't sleep because I can't make money for the extra $20,000.00 in this society." M r . T shared his worries about his two children, " W e are very concerned that Samantha is going to harm Susan. I have told every person that this problem exists, and I have not had one single person cal l me back saying that we have put this into place to try and help. N o b o d y has heard us!" It was clear that anxiety was a 91 c o m m o n denominator i n their lives, and they worked hard to alleviate their concerns about their children, financial situations, l iv ing conditions, and support systems. Fear It was impl ied that these families were driven by the fear that they w o u l d not be there for their children one day. M r s . P explained, "If they cannot provide on time education, I mean who w i l l take care o f h im? I mean, Mother and Father w i l l die some day right, so we uuuhhh have l imited time.. .maybe ten years." M r . T stated, "In the future when she is 25 years o ld, and I am dead, she is not a full cost to society and l iv ing in an institution." M r . K stated, " I also pray for m y children that when they grow up, that they w i l l be able to marry. I hope that they w i l l be able to work and carry a relationship, and I know that i f I die, they w i l l be okay." A l l parents were future oriented; however, al l worked hard to eliminate their fears about the future when they may not be here to take care o f their children. Embarrassment T w o o f the three families related stories reflecting embarrassment in their countries o f or ig in and i n Canada. T o illustrate, M r s . P described her circumstances i n the Phil ippines , " In the Phil ippines, it is very different there. T h e y w o u l d not m o c k me. T h e y would just talk about it and talk about it. It's l ike gossip y o u know. O h , poor little M r s . P. She has two abnormal children, and I just don't want to hear that." In addition, M r s . K described her experiences in the mal l , " Especial ly in a publ ic place. . .He does not want to line up i n a shopping mal l . H e shouts sometimes and has screaming fits and tantrums. E v e r y body looks at us and wonders why m y chi ld does that. Sometimes I explain, but 92 most o f the time, I don't. I say, I don't know. A chi ld with autism looks like a normal ch i ld so it is not easy." Courage These parents demonstrated tremendous strength, tenacity, and courage. In the interviews, some parents shared their experiences in what it was like when they discovered that they had a ch i ld with autism. T h e y felt shattered. M r s . P described, "It was like the wor ld fell down on me." Their expectations o f having a normal ch i ld were dashed. T h e plans they had around bui lding a life with a healthy chi ld were ruined. M r s . P reported, "Before I had her, I was preparing already to give her a good education. I bought all these educational toys and books, so y o u can just imagine m y frustration when I found out that something was wrong with her." These parents have endured m a n y obstacles in getting their childrens' needs fulfilled. The ir experiences exemplif ied moments o f turbulents, trials, and tribulations. T o illustrate, they have all had to arrange for various ch i ld services outside the family unit, and all have reported the difficulties in maintaining an effective and efficient level o f service in their countries o f origin, and in two o f the cases, here in Canada. M r . T exclaimed, " W e have had to fight and fight to get what we need. I think that we expected it to be difficult, but we d id not expect that we w o u l d have to put forth so m u c h energy to get what we needed." F o r each testimonial o f care and assistance, these parents wrote letters, made phone calls, and engaged in numerous battles. 93 Parents as Agents Immigrant parents had a distinct characteristic in that they possessed the ability to take charge in situations and make things happen. T h e y were active agents in their lives in contrast to patients to w h o m things happen (deCharms, 1976). deCharms (1976) characterized agency with six major features. First, an agent experiences h imse l f or herself as the cause o f his or her decisions and actions. Agents have a personal basis for taking action. L i k e agents, immigrant parents had meaningful motives. T h e y left their countries o f origin, arrived to Canada, and learned new rules and customs to help their ch i ld with autism. Secondly, agents set challenging but realistic goals that are anchored in meaningful motivation. Immigrant parents d id what was within their control to learn. In an attempt to make more meaning o f all these emotion laden relationships, it was clear that the emotional quality o f the parent - chi ld relationship was all encompassing and forceful, and took a role o f overwhelming significance in their lives. T h i s was reflected in every narrative interview in that the majority o f the relationships in these parents lives was significantly influenced and driven by their primary, all encompassing relationship they had with their chi ld with autism. Engl i sh , search for new schools, and make new friends as an initial step towards making their chi ld feel integrated. T h i r d , agents are active whi le patients are passive. Immigrant parents had direction and each action had a specific aim. Fourth, agents develop a functional perception o f reality that highlight what might facilitate or hinder movement toward a goal. These parents were attentive to possible means, resources, obstacles, and their own strengths and weaknesses. T h e y established extrafamilial relationships with the educational and social systems with the a im o f helping their chi ld. Fif th, agents feel confident, while patients lack confidence. 94 These parents had an optimistic outlook and believed that they can make changes in their situations. F ina l ly , agents assume responsibility for actions, goal attainment, and consequences whi le patients minimize or deny responsibility. These parents accepted blame or credit when it was due. T h i s related to their sense o f ownership. Searching for Normal i ty These parents were recent immigrants to Canada, and they were amidst a process o f adjustment in that they were learning new rules and regulations, customs, establishing new friends, and exploring the territory. O n another level, immigrant parents were all driven towards the attainment o f an ultimate goal; that is, conformity with a central n o r m o f family life. The ir need to conform with the central norm o f family life was apparent throughout the interviews and depicted in the case portraits. T o illustrate, they were constantly comparing their o w n circumstances to those o f 'normal ' families. T h e term 'normal ' is used to refer to different concepts, depending on one's frame o f reference, wh ich are strongly influenced b y the subjective position o f the observer and b y the cultural surround (Becvar & Becvar , 1996). Different theoretical concepts o f normality are interesting to note. T o begin, from a medico - psychiatric model , it is based on the criterion o f absence o f pathology. Persons who are asymptomatic, manifesting no disturbances are considered normal and healthy. A n approach c o m m o n in sociological and behavioral studies use the statistical norm, or average to identify typical patterns or traits. In humanistic theories, normality refers to 'self actualization' or potential. F ina l ly , General System Theory suggests that normali ty attends to individual developmental processes over the life course in the context o f transactional systems dependent on an interaction o f biopsychosocial variables (Becvar & 95 Becvar , 1996). A l l o f the above definitions can be used to describe these immigrant parents perceptions o f normality. T o illustrate, M r s . P stated, " W h e n I see families around with three or four children and they are all normal...it makes me cry." In response to m y question, " H o w w o u l d your life be i f y o u did not have a chi ld with autism?", M r s . K responded, "It w o u l d be like other parents o f normal kids. I could do something for myself!" W h e n M r . T compares his circumstances to his neighbours, he said, " It has been more work to get things organized." These statements reveal how immigrant parents organized their experiences in relation to 'normal' families. The ir ultimate goal was not unto itself; rather, it was in association with or a connection to a typical family's w a y o f life. Emot iona l Normal izat ion E v e r y narrative reflected the ultimate a im o f emotional normalization. That is, they were striving for full integration, emotionally and physical ly, in an attempt to construct a normal life for themselves and their children. T o understand how these parents evolved towards attaining emotional normalization, an examination o f their lives within the context o f both the family and the culture, with its inherent set o f past and present intra- and inter-familial strengths, and how they changed over time was essential. Emot iona l normalization has occurred when both the parents and the children feel completely integrated in their embedded systems. T h e attainment o f emotional normalization has many layers and can be v iewed i n the context o f embedded relationships in different places and changing over time. C a r i n g for a ch i ld with autism is very demanding and in itself is not conducive to a normal existence. Moreover , the goal o f emotional normalization could have felt distant as these 96 immigrant families felt like strangers in a new community. In an effort to make their surroundings more familiar, parents, together with their children, were forced to establish relationships on the outside o f their microsystem, the immediate family unit. M a n y interplays were at work within the family unit as intra-familial strengths such as commitment, congruence, purpose, communication, coping strategies, appreciation, and rules, values, and beliefs interacted with each other in such a way as to mobi l ize the family to meet its immediate needs and s imply survive. Moreover , these strengths w h i c h influenced the relationships inside the family, indirectly affected the relationships established outside with the medical profession, social services, speech pathologists, behavior modification workers, respite care givers, teachers, polit ical figures, and other support networks. A l l o f these processes played a role in attaining integration. Thus , the various strengths within the family system influenced the relationships inside the family unit, and these relationships affect and were affected b y the relationships outside. B y working hard to maintain healthy relationships both inside and outside the fami ly unit, they strive towards their goal o f emotional normalization. T h e constitution o f the immigrant family has been discussed in terms o f the emotional work invested in the parent chi ld relationship and all those relationships surrounding it. T h e turning point o f having a chi ld with autism move from a noncommunicat ive disintegrated state into a communicative, functioning and integrated human being was what every family hoped to experience in Canada. E v e r y couple experienced some pain and grief in their countries o f origin when they found out that their ch i ld had autism. T h e y tried to make things work in their home countries, but felt l ike they were miss ing something. T h e y were on a quest to make their lives better, and 97 they made a collaborative decision to immigrate to Canada in hopes to provide their chi ldren with a normal life. Here , in Canada, they were bombarded with new systems, customs, and values, but these stresses were secondary to the stresses related to their ch i ld rearing experiences. A c o m m o n thread throughout each life and in each country were the relationships that were established to alleviate stress, provide them strength, and enhance feelings o f similarity. Emot iona l normalization can be described as a process worked at b y immigrant parents in caring for their children with autism to min imize the difference between their o w n families and 'normal' families. F o r the chi ld to develop to his/her optimal potential, the chi ld depends on the family to initiate and sustain different relationships on the outside o f their family unit in order to make things feel normal on the inside. Fami l ies have m o v e d to Canada, and they continue to strive for integration as the attainment o f emotional normalization is a life time process. Practical Implications T o understand the experiences o f immigrant parents caring for children with autism, a narrative approach was employed. It was apparent from the interviews that their experiences related to concerns around their children with autism. T h e issues related to being recent immigrants to Canada appeared to be secondary in this study. Some immigrant parents felt that the service delivery was disintegrated and inadequate in Canada . Others have been in Canada for a shorter time, and have not encountered as m a n y shortcomings. Nonetheless, an analysis o f the data in terms o f relationships suggests that helpers must consider an eclectic ecological solution in order to effectively help these immigrant families caring for children with autism. T o maximize our intervention skills, parents 98 caring for their children with autism can be v iewed contextually and in interaction terms. In other words, an understanding o f the match between the family and the environment is critical. Professionals must be held accountable to families and tax payers for prov id ing support that w i l l foster independence in immigrant families l iv ing with autism. L i k e their backgrounds, families l iv ing with autism vary significantly in their abilities and thus individual ized supportive programs and trained assistants who have knowledge o f autism and a genuine understanding o f cultural diversity is essential. In essence, for children and parents l iv ing with autism to reach and maintain their opt imum potential, services must be accessible, equitable, and appropriate to all families. In an effort to improve services to these families, community based chi ld case management programs are necessary to improve coordination among service providers and to increase families access to required services. That is, the entire community is a resource for meeting the needs o f families with children with autism. O f course, families must make an effort and be open to successful integration into community based l iv ing . R o n n a u (1991) suggests that the family is the primary l ink between the cont inuum o f services w h i c h the chi ld or adolescent w i l l need. It is virtually impossible, and often counterproductive, to work with the chi ld in isolation from the family; to help the chi ld , y o u must help the family (Werrbach, 1996). It seems that each family is confused about the roles and responsibilities o f the different organizations and services in Vancouver . Whether it be in the M i n i s t r y o f Health , Educat ion , or for Chi ldren and Famil ies , there appears to be no coordination o f the various programs for children and families l iv ing with autism. T h e present system is 99 too fragmented and there is m i n i m a l accountability. In order to help an immigrant family care for their children with autism, one ma in center could be created for excellence in autism. Experts in autism, extensive resources, and specific behavioral programs should be systematically provided for all families l iv ing with autism. T h e interviews revealed that some o f these parents would benefit from having case managers. T h e y cou ld p lay in key activities such as assessing family and ch i ld strengths, coordinating service plan activities, mediating among service providers, and provid ing uncondit ional support for immigrant families and children with autism. Secondly, parents should have access to an early intensive intervention program. After all , without early diagnosis and intensive intervention, most w i l l remain severely mentally and socially disabled ( B . C . C o u n c i l on A u t i s m , 1998). Consequently, they cou ld be tax burdens for the rest o f their lives. M r . T talked about the system in the U . K . whereby the diagnosis requires a team (pediatrician, psychologist , speech pathologist, and other disciplines as needed) all with skills and experience in the diagnosis o f autism. B y this action, parents get a thorough account o f their child's disability, and recommendations are made for appropriate interventions. It is apparent that there is a team in B . C . whereby parents are referred to Sunny H i l l Hospi ta l in Vancouver; however, the waiting times for assessment range from six to twelve months ( B . C . C o u n c i l on A u t i s m , 1998). A l l three families discussed important therapies which were not covered b y the M e d i c a l Services Plan. M r . K , along with dozens o f families in Bri t i sh C o l u m b i a , are funding from their o w n resources, the flights o f A m e r i c a n consultants to set up an in -home A B A program ( B . C . C o u n c i l on A u t i s m , 1998). These include the Lovaas type 100 applied behaviour analysis and other programs. It is apparent that autism has significant financial implications for these families. Perhaps local politicians and administrators should modi fy the present policies to ensure that families l iv ing with autism are not ignored and discriminated against. Currently, children with disabilities receive services only when funding is available, and they do not have any legislated right to services ( B . C . C o u n c i l on A u t i s m , 1998). M r . T complained loudly about the ' A t H o m e ' Program. H e , along with m a n y other parents caring for children with autism do not receive the services. In recent years, the majority o f children with autism are not provided with the medical portion o f the program apparently because they have no obvious physical disability. Perhaps administrators o f the A t - H o m e Program should re-consider their guidelines so that they do not discriminate against children on the autism spectrum. D u e to transportation restrictions and chi ld care issues, families w o u l d benefit f rom having a choice between a autism-specific learning facility or an at home intervention program. It has been noted that schools - more than parents- are in a posit ion to create the conditions needed to overcome difficult relationship barriers (Carlson, 1996). H o m e -school collaboration mechanisms should be implemented to assure the empowerment o f families l iv ing with autism. A s the various social support systems restructure their programs in the future, I hope that the needs o f families l iv ing with autism must be considered. N e w programs w h i c h place emphasis on an integrated, pro-active approach wi l l be very beneficial. 101 It was evident in m y analysis o f the case portraits that these families possessed numerous strengths that could be used b y the helpers. M r . T probably speaks on behal f o f numerous families who are in need o f more help at home. H e wants to keep his chi ldren in his lov ing and caring home, but he requires assistance. A n increasing number o f parents are being forced to put their children into care at great cost to society because the M i n i s t r y for Chi ldren and Famil ies cannot provide sufficient service to keep the chi ld at home with the current level o f subsidization. Currently, professionals in the M i n i s t r y for C h i l d r e n and Famil ies are overwhelmed with other serious problems such as ch i ld abuse. T h e B . C . C o u n c i l on A u t i s m stated, "It is ironic that the Min i s t ry for Chi ldren and Famil ies must provide foster homes to children whose families are unable to cope, but they are not obligated to provide vital services for disabled children to remain in their family home" ( B . C . C o u n c i l on A u t i s m , 1998). O n a positive note, an ' A u t i s m A c t i o n P lan ' has recently been developed in B . C . b y the M i n i s t r y for Chi ldren and Famil ies in conjunction with the M i n i s t r y o f Educat ion. T h i s project is intended to include a variety o f other Ministries such as Health, H u m a n Resources, and A d v a n c e d Educat ion as wel l as the A u t i s m Society o f B . C . (Garside, 1998). T h e a im is to develop an encompassing plan to solve the issues related to autism within a framework o f services to children and youth with special needs. Important areas that are going to incorporated into the plan include: Diagnosis and Assessment; E a r l y Intervention Programs; School and Education; and Transit ion to A d u l t h o o d and A d u l t Services. In essence, families such as this require a proactive, solution - oriented approach w h i c h focuses on family strengths and capabilities in a way that supports and strengthens 102 their family functioning styles. In contrast to treatment strategies that dwel l o n the problems, more attention should be directed to future possibilities (Dunst, Trivette, & D e a l , 1988). T o help families reduce tension, manage conflicts, and meet their demands and needs, a promotion approach is helpful. "Helping is the act o f promoting and supporting family functioning in a way that enhances the acquisition o f competencies that permit a greater degree o f intrafamily control over subsequent activities (Dunst, Trivette, & D e a l , 1988). Implications for Future Research Patterns o f interaction over the long term could lead to valuable insights as to how these individuals have endured the obstacles over time. It wou ld be interesting to perform this study in ten years to see i f in fact these families have attained feelings o f integration and emotional normalization. In the future, more relational and explanatory research methods might be employed. However , at present, because there is min imal or no research in this area, exploratory, descriptive, and formulative approaches are appropriate. M y thesis marks a beginning. A n investigation into the lives o f immigrant families showed that their challenges related to being parents rather than being immigrants. T h i s might have been a result o f the questions asked in the interviews. Hence , their experiences may not be dissimilar to those found in other Canadian families l iv ing with autism. Future research might be carried out in an effort to compare the experiences o f a Canadian family to that o f an immigrant family l iv ing with autism. Perhaps because the interviews took place within six months o f the parents' arrival to Canada, they have been occupied with more pressing ch i ld care issues, and immigration issues w i l l follow. It w o u l d be interesting to 103 perform another narrative study in the future under different contextual circumstances. F o r example, i f the parents would have been in Canada for a longer period, and their perceptions might differ. A s wel l , the systems around them such as the M i n i s t r y for C h i l d r e n and Famil ies , education, and other community organizations might be subject to different influences. A s a result, the content o f the narratives might differ as wel l . It is important to note that the families who participated in this study were able to speak Engl i sh . Consequently, they might have been in a stronger position to access the services around them. O n the other hand, families with l imited E n g l i s h prof ic iency cou ld be seriously disadvantaged, as cross language communicat ion can be frustrating. A language barrier could cause a family to feel more segregated. A future research study w h i c h establishes a collaborative alliance with a family with l imited E n g l i s h language m a y help caregivers understand their subjective experience and eventually encourage personal authority and autonomy among non-Engl i sh speaking immigrants. O n c e a r ich understanding o f the lives o f immigrant families has been portrayed, future research might be used to elucidate the relationships between hardiness, social support, and stress symptoms apparent in immigrant families. Furthermore, longitudinal research might help to clarify the development o f certain skills and social support over time. Comparisons to parents o f children with other disabilities and to parents o f typical children might be helpful too. Variables that relate to the severity o f the child's disorder cou ld be discussed i n the future such as the amount and intensity o f the maladaptive behaviors and other family variables such as marital satisfaction and internal conflict. Indeed, b y attempting to understand some o f the complexities in immigrant parental coping styles, professionals and other social services w i l l be better equipped to 104 design and implement services that more effectively meet the needs o f immigrant families with ch i ld with autism. A s we move towards the twenty first century, helping practices, theories, and policies with families o f diverse backgrounds must consider diverse family coping styles; relationships between the family and the community , and the capacities o f families to "sustain, survive, and thrive in a world that often does not support their we l l being" (Weick & Saleebey, 1995). M y study, b y making their voices heard, w i l l help national and local policies develop "enabling niches" for immigrant families l iv ing with a ch i ld with autism and create environments in which these families feel more competent and comfortable (Brower, 1988; W e i c k & Saleeby,1995). 105 Summary T h e ultimate a im o f m y study was to understand the lives o f immigrant families l iv ing with a ch i ld with autism. Famil ies were primari ly concerned about their ch i ld with autism as compared to the issues pertaining to immigration. In this narrative study, three families shared c o m m o n contextual factors such as: the quality o f relationships within and outside o f the family, the nature o f social supports, community acceptance, f inancial obstacles, and the availability and utilization o f supportive services were revealed in the interviews. Moreover , similar psychological , social, and interpersonal characteristics o f the immigrant parents, family units, and communities were highlighted. T h e stories o f the immigrant families l iv ing with autism in this study consisted o f a set o f very diverse and varied experiences and circumstances. Variables such as the degree o f autism, the number o f siblings, access to family resources, social support, and famil ial functioning styles all played a role in the telling o f their stories; however, many ^ similarities existed between the families in terms o f general topics and areas o f discussion. M a n y issues were consistent from family to family; however, their means o f dealing and coping with different stressors differed. Immigrant parents caring for a ch i ld with autism discussed serious issues that were prevalent in their countries o f or ig in and i n Canada. T h e y were woven throughout their pasts, existed in the present, and w i l l perhaps continue in the future. Numerous themes emerged from the narratives, and they were analyzed in terms o f relationships. Bronfenbrenner's systems-ecological model looks at the family embedded as a system o f nested structures. F a m i l y functioning styles such as the level o f commitment, sense o f purpose, communication, values, flexibility, allocation o f time, 106 congruence, coping strategies, optimism, balance, and problem solving abilities were studied. A s wel l , relationships with social support systems and family resources such as finances were also included in the analysis. 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C u r r i c u l u m Update , 1-8. 1 17 Appendix A Bronfenbrenner's Ecological Model (Kopp & Krakow, 1982) 119 Consent: I understand that m y participation in this study is entirely voluntary and that I m a y refuse to participate or withdraw from the study at any time without jeopardy to m y present lifestyle. I have received a copy o f this consent form for m y o w n records. Subject Signature Date Signature o f a Witness Date 120 Append ix C Letter o f Information February 9, 1998. Dear Parents; T h e purpose o f m y study is to understand the experiences o f immigrant parents caring for a ch i ld with autism. B y attempting to understand some o f the complexities, professionals and other social services w i l l be better equipped to design and implement services that w o u l d effectively meet the needs o f immigrant families with children with autism. I intend to interview parents o f children with autism who are presently permanent residents o f Canada and have come from another country. Participants w o u l d be required to share their experiences in an interview (approximately one hour) wh ich wi l l be audio taped and subsequently transcribed. Participants w i l l remain anonymous. T h a n k y o u for your consideration. Sincerely, G l e n d a Wal lace
Thesis/Dissertation
eng
Counselling Psychology
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A narrative study of the experiences of immigrant parents in caring for their child with autism
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