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A narrative study of the experiences of immigrant parents in caring for their child with autism Wallace, Glenda 1998-12-31

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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  degree at the  thesis  in  University of  freely available for reference copying  of  department  this or  partial  fulfilment  of  British Columbia, and study.  publication of this  his  or  her  I agree  representatives.  It  thesis for financial gain shall not  Coi^/SCLLlfJG  The University of British Columbia Vancouver, Canada  Date  DE-6 (2/88)  Och>t>er /3  t  f?1& .  that the  may be  permission.  Department of  requirements  I further agree  thesis for scholarly purposes by  the  PS^CrfVUDO^  is  that  an  advanced  Library shall make it  permission for extensive  granted  by the  understood be  for  that  allowed without  head  of  my  copying  or  my written  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 experiencesfromtheir 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 participantsfromtheir 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  _  Previous Investigations  1 _  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 Family Functioning  20 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 Families as Systems Emotional Normalization  24 ____  24 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  Chapter V.  H j L  Portrait of a Philippino Family  4  Portrait of an English Family  5 5  9  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 systemsecological model was used to review the themes in terms of intra-, inter-, and extrafamilial 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; KesslerHarris & 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 Supportfromhelping 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 supportfromthem (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 significantlyfromfamilies 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  v o l u n t a r y associations, religious organizations, a n d other i n f o r m a l networks ( H i r a y a m a & C e t i n g o k , 1988).  Systems - E c o l o g i c a l Perspective  F a m i l i e s as S y s t e m s A s y s t e m i c f r a m e w o r k such as the systems-ecological orientation considers the r e c i p r o c a l interplay o f the c h i l d w i t h autism w i t h i n each system. T h u s , i n order to understand the experience o f i m m i g r a n t parents c a r i n g for their c h i l d w i t h autism. T h e m i c r o s y s t e m , exosystem, a n d m a c r o s y s t e m w i t h i n w h i c h they l i v e w i l l be e x p l o r e d . B r o n f e n b r e n n e r ' s systems-ecological f r a m e w o r k is useful i n d e v e l o p i n g our understanding o f i m m i g r a n t parents c a r i n g for their c h i l d r e n w i t h autism. T h e t e r m ' m i c r o s y s t e m ' refers to the relationship a m o n g the parents and c h i l d w i t h a u t i s m a n d the e n v i r o n m e n t i n an i m m e d i a t e setting s u c h as their h o m e , s c h o o l , a n d p l a y g r o u n d . T h e ' m e s o s y s t e m ' refers to the interrelationship a m o n g the various m i c r o s y s t e m s o f w h i c h the c h i l d w i t h autism is a part. T h e 'exosystem' considers the specific s o c i a l structures a n d institutions o f society s u c h as transportation, social services, education, a n d m a s s m e d i a . T h e ' m a c r o s y s t e m ' refers to the o v e r a l l cultural a n d institutional patterns o f w h i c h the other systems are parts. T h i s includes the e c o n o m i c , p o l i t i c a l , legal, s o c i a l , a n d educational systems ( F i n e , 1994). (Refer to A p p e n d i x A ) It was thought that these perspectives m i g h t be h e l p f u l i n e x p l a i n i n g parents' interactions and relationships w i t h i n these systems. T h e themes c a n be f o u n d i n terms o f relationships that p r e v a i l i n the m i c r o s y s t e m , m e s o s y s t e m , m a c r o s y s t e m , and e x o s y s t e m i n w h i c h the parents reside. I m m i g r a n t families, like all families, are systems i n themselves. E a c h f a m i l y strives to be o p e n , o n g o i n g , goal-seeking, a n d 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 will 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  26  experiences of immigrant parents in caring for their child with autism was seen as being useful.  27  C h a p t e r III Methodology  T h i s chapter details the m e t h o d o l o g y and procedures e m p l o y e d i n c o n d u c t i n g the study. T h e first section includes an explanation o f the narrative p a r a d i g m a n d basic assumptions o f this m o d e o f i n q u i r y . M y personal perspectives a n d beliefs about h u m a n nature as w e l l as a rationale for w h y I adopted a narrative m o d e o f i n q u i r y is i n c l u d e d i n section 2. T h e third section o v e r v i e w s the d e s i g n o f the narrative study. T h e fourth section focuses o n the selection o f the participants, the interviews and analysis process. F i n a l l y , the chapter ends w i t h s o m e strengths and limitations o f a narrative m o d e o f inquiry. Basic Assumptions T h e focus o f narrative i n q u i r y is to understand a person's experience o f their w o r l d . H u m a n s are storytelling organisms w h o , i n d i v i d u a l l y and s o c i a l l y , lead storied lives. T h u s , the study o f narrative is the study o f the w a y s h u m a n s experience the w o r l d ( C o n n e l l y & C l a n d i n i n , 1990). S u c h a narrative i n q u i r y invites rather than discourages storytelling ( S t r i c k l a n d , 1994), and assumes that the researcher a n d the co-researcher create a co-constructed narrative, w h i c h is an interpretation o f the story t o l d b y the interviewee. T h e analysis is a continuous process w h e r e b y a series o f anecdotes a n d d e v e l o p i n g themes lead to a richer, m o r e condensed, and coherent story to be t o l d ( K v a l e , 1996).  M i s h l e r (1986) suggests that an i n q u i r y requires six steps: (a) interviews, (b) repeated listening to taped interviews and reading o f the transcripts, (c) d i s c o v e r y o f trajectories i n the interviewee's history, (d) development and refinement o f a m o d e l (e)  28  selection o f a narrative as a representative case, a n d (f) specification o f episodes a n d the structure o f the narrative for detailed analysis and a co-constructed interpretation.  A n o t h e r a p p r o a c h w h i c h was a p p l i e d i n m y narrative analysis is L e e S t r i c k l a n d ' s account o f narrative 'lenses' ( S t r i c k l a n d , 1994). She contends that stories c a n be a n a l y z e d u s i n g different narrative 'lenses' s u c h as (a) plot structure, (b) narrative structure o f episodes, a n d (c) characteristics o f the narrator a n d the protagonist. T o illustrate, the p l o t o f a story e v o l v e s as events a n d is related to an evaluative endpoint or g o a l w h i c h is important to the story teller ( S t r i c k l a n d , 1994). A s w e l l , narrative structure o f episodes is a u s e f u l m e t h o d o f a n a l y z i n g the data. T h e s e episodes m i g h t be isolated b y u s i n g a s c h e m e d e v e l o p e d b y S i l l i a m L a b o v and J o s h u a W a l e t s k y consisting o f an abstract, orientation, c o m p l i c a t i n g action, evaluations, resolution, and a c o d a ( S t r i c k l a n d , 1994). T h e m o s t reportable incident then is something w o r t h telling a n d is generally a p p r o a c h e d t h r o u g h a series o f c o m p l i c a t i n g actions connected either causally, t e m p o r a l l y , or b o t h ( S t r i c k l a n d , 1994). F i n a l l y , a l o o k at the protagonist a n d the narrator is pertinent. S t r i c k l a n d contends that the protagonist is an actor demonstrating the narrative truth o f the past. T h e g o a l i n understanding the story is to analyze w h y the storyteller reveals a particular v e r s i o n at a particular time (Strickland, 1994).  Rationale  T h e narrative p a r a d i g m describes our v e r y b e i n g i n the w o r l d ; w e interact w i t h p e o p l e a n d b u i l d relationships o n the basis o f h o w w e m a k e sense o f them. W e engage i n i n f o r m a l interviews every day, as w e listen to stories w i t h friends a n d try to assign m e a n i n g ( E l l i s , 1994). " C o n v e r s a t i o n is a basic m o d e o f h u m a n interaction. H u m a n b e i n g s talk w i t h each other - they interact, pose questions, a n d answer questions. T h r o u g h  29  conversations w e get to k n o w other people, get to learn about their experiences,  feelings,  h o p e s a n d the w o r l d they l i v e i n " ( K v a l e , 1996). V o i c e is m e a n i n g that resides i n the i n d i v i d u a l a n d enables that i n d i v i d u a l to participate i n a c o m m u n i t y ; "voice suggests relationships: the i n d i v i d u a l ' s relationship to the m e a n i n g o f her/his experience a n d hence, to language a n d the i n d i v i d u a l ' s relationship to the other, since u n d e r s t a n d i n g is a s o c i a l process" ( C o n n e l l y & C l a n d i n i n , 1990). A n unstructured interview is an i d e a l m o d e o f i n q u i r y for understanding h o w p e o p l e experience their w o r l d . I agree that "forgetting the rules i n creative i n t e r v i e w i n g allows research subjects to express themselves m o r e freely, a n d thus to have a greater v o i c e both i n the research process a n d i n the research report" ( C a s e y , 1996). T h e researcher w h o approaches the interviews w i t h pre-structured categories, w o u l d find o n l y that w h i c h he/she h a d considered. A c o l l a b o r a t i v e m e t h o d w h i c h places emphasis o n sharing historical narratives a n d first p e r s o n a l accounts o f all relationships p r o v i d e s a richer d e p i c t i o n o f the truth directly w i t h the p e o p l e w i t h w h o m I a m interested. M y a i m is to get their stories i n the face o f the constraints o f their e v e r y d a y social w o r l d . Persons are interviewed i n hopes that they w i l l share s o m e stories w i t h m e . T h e narrative interview p r o v i d e s this opportunity. Relationships  A p a r a d i g m w h i c h places emphasis o n relationships was e m p l o y e d to understand the l i v e d expereince o f i m m i g r a n t parents i n c a r i n g for their c h i l d w i t h autism. T h e f a m i l y system is a n e t w o r k o f relationships w h i c h are interactive a n d are c h a n g i n g o v e r time ( F i n e & C a r l s o n , 1992). E a c h f a m i l y p r o v i d e s the c h i l d w i t h basic p h y s i c a l needs, e m o t i o n a l b o n d s , a secure base, life experiences, a network o f c o m m u n i c a t i o n , a n d m o d e l s o f appropriate b e h a v i o r and attitudes. T h e parents' ability to meet these important  30  functions is dependent u p o n m a n y relationships, i n c l u d i n g the relationship w i t h :  his/her  spouse, finances, f o r m a l and i n f o r m a l support services, the education system, c o m m u n i t y organizations, a n d the M i n i s t r y for C h i l d r e n and F a m i l i e s . P a r e n t - c h i l d interaction depends o n the role demands, stresses, a n d supports emanating f r o m other settings. N o t s u r p r i s i n g l y , supportive links between the f a m i l y setting and the external e n v i r o n m e n t p l a y a significant role i n their relationships w i t h their c h i l d r e n w i t h autism. In essence, the c h i l d w i t h autism is nested i n the f a m i l y system; each f a m i l y s y s t e m is e m b e d d e d w i t h i n a larger e c o l o g y o f s o c i a l systems, a n d thus is affected b y changes i n the c o m m u n i t y a n d i n society ( B o s c h , 1996). F o r the purpose o f this thesis, a relationship is defined as an e m o t i o n a l association between two people. M o r e o v e r , two i n d i v i d u a l s relating together are not independent; they m u t u a l l y influence each other. ' A ' a n d ' B ' exist i n the context o f a relationship i n w h i c h each influences the other a n d b o t h are e q u a l l y cause a n d effect o f each others b e h a v i o r ( B e c v a r & B e c v a r , 1996). O v e r time, A and B establish patterns characteristic o f their particular relationship. A focus o n the context a n d the processes that g i v e m e a n i n g to the events p r o v i d e a richer picture than l o o k i n g at the i n d i v i d u a l s a n d events i n isolation. In order to get a sense o f the w h o l e , I l o o k at h o w the parts relate to each other. T h e experiences o f parents c a r i n g for their c h i l d w i t h autism b e c o m e s a w i n d o w that I c a n l o o k t h r o u g h to understand the parents p l a c e i n the larger system. T h e v a r i o u s roles, relationships, and b e h a v i o r patterns that characterize the parents, specific settings, and other people w i t h i n that system paint a picture o f the w h o l e . R h o d e s (1970) argues that emotional disturbance is a f u n c t i o n o f the r e c i p r o c i t y b e t w e e n the i n d i v i d u a l to his or her environments ( F i n e , 1994). H e continues, " D i s t u r b a n c e is constituted f r o m a reverberating circuit between the d i s t u r b i n g i n d i v i d u a l  31  a n d v a r i o u s significant i n d i v i d u a l s w i t h i n the e n v i r o n m e n t a l settings s u c h as g o v e r n m e n t agencies a n d h o m e . It is their d i s t u r b i n g exchange w h i c h creates the p r o b l e m " ( F i n e , 1994). H e n c e , relationships p l a y an integral role i n the w e l l b e i n g o f parents c a r i n g for their c h i l d r e n w i t h autism a n d is w o r t h y o f investigation.  A l o o k at the relationship between the c h i l d w i t h autism a n d the w o r l d is important. D e M y e r states that there are four b r o a d categories o f b e h a v i o r consistent w i t h the diagnosis o f autism ( D e M y e r , 1979). T h e s e are: difficulties w i t h s o c i a l relationships, severe deficits i n language, severe deficits i n c o m m u n i c a t i o n ; a n d other associated features s u c h as a strong resistance to change i n the environment, insistence o n routine, o d d m o v e m e n t s , b e h a v i o r p r o b l e m s , attachment to inanimate objects, v e r y u n u s u a l responses to c o m m o n s t i m u l i i n the environment, lack o f imaginative p l a y , a n d the presence o f splinter skills. It is important to note that autism itself has different features, and all have i n d i v i d u a l variations ( D e M y e r , 1979). Individuals w i t h autism range f r o m b e i n g severely d e l a y e d to a c a d e m i c a l l y gifted. P e o p l e w i t h autism v a r y t r e m e n d o u s l y i n personality, intellectual capacities, social skills, a n d ability to cope w i t h the e v e r y d a y d e m a n d s o f society ( D e M y e r , 1979). Jensen (1992) suggests that most c h i l d r e n w i t h a u t i s m h a v e d i f f i c u l t y w i t h s o c i a l relationships a n d the use o f language (Jensen 1992).  T h e narrative p a r a d i g m , b y means o f an unstructured interview, gave the participants an opportunity to express their hopes and concerns i n any manner. M y role as listener a n d researcher required m e to hear and understand the u n f o l d i n g story i n detail, a n d c o m b i n e m y understanding w i t h theirs. I then sought to interpret the cultural processes that underlie the content o f the stories themselves, a n d attempted to reveal the m e a n i n g o f events t h r o u g h the lens o f m y interpretation. C u r r e n t l y , the fundamental  32  processes w h i c h underlie the relationships o f i m m i g r a n t parents a n d their c h i l d w i t h autism a n d the relationships between the i m m i g r a n t f a m i l y a n d the m e m b e r s o f the c o m m u n i t y are u n k n o w n . T h u s , a p l u r i v o c a l m o d e o f i n q u i r y is r e c o m m e n d e d since it results i n a broader a n d deeper m e a n i n g o f the i m m i g r a n t parents' experiences. T o effectively help i m m i g r a n t parents l i v i n g w i t h autism, an understanding o f the w a y they see the w o r l d is essential. F r o m the patterns a n d themes that e m e r g e d f r o m the narrative interviews, I h o p e d to identify what these families v i e w as essential to their success or failure as a f a m i l y unit. A co-construction o f the narrative interviews m a y help to e n v i s i o n h o w to be m o r e practically h e l p f u l for i m m i g r a n t parents l i v i n g w i t h autism. Personal B a c k g r o u n d In a qualitative i n q u i r y , relationships depend o n two factors: the quality o f o u r interactions a n d the quality o f our self-awareness to help m o d i f y the i m p a c t o f the s e l f o n our research ( P e s h k i n , 1992). H e n c e , an understanding o f s o m e factors w h i c h contributed to m y interest i n i m m i g r a n t families l i v i n g w i t h c h i l d r e n w i t h autism is pertinent. T o b e g i n , I started m y career as a special education teacher i n an inner city z o n e o f the V a n c o u v e r S c h o o l District. I instructed a P r i m a r y E d u c a t i o n a l l y H a n d i c a p p e d C l a s s c o n s i s t i n g o f students w i t h severe autism. W i t h this role, s o m e o f m y responsibilities i n c l u d e d the i m p l e m e n t a t i o n o f academic a n d b e h a v i o r m o d i f i c a t i o n p r o g r a m s ; h o w e v e r , a m o r e d e m a n d i n g aspect o f the j o b required m e to p r o v i d e support a n d assistance to these families w h o endured significant stresses due to a lack o f resources, d y s f u n c t i o n a l f a m i l y operation, a n d a l a c k o f i n f o r m a l and f o r m a l support systems. M a n y parents h a d recently a r r i v e d to V a n c o u v e r o n l y to find themselves isolated a n d lost. In m a n y cases, I  33  was the o n l y c o n n e c t i o n to the c o m m u n i t y for m a n y o f these parents. T o illustrate, at the e n d o f the s c h o o l year, m a n y parents felt abandoned. In reality, I b e l i e v e d they were.  In a d d i t i o n , I b r i n g to this study m y most recent experience. In this past year, I h a v e b e c o m e a m o t h e r myself. C o n s e q u e n t l y , I a m m o r e aware o f the stresses o f p a r e n t h o o d , a n d I a m astounded b y the intensity o f the experience. I h a v e d e v e l o p e d an u n d e r s t a n d i n g a n d a n appreciation o f support systems, resources, a n d f a m i l y f u n c t i o n i n g styles. B e i n g a parent o f a typical c h i l d i n one's own country o f o r i g i n is d e m a n d i n g a n d all c o n s u m i n g i n itself. I cannot i m a g i n e the complexities i n v o l v e d i n b e i n g a n e w i m m i g r a n t a n d h a v i n g to care for a c h i l d w i t h autism i n an u n f a m i l i a r country. I seek a deeper understanding o f h o w these families cope w i t h their day to d a y issues whether it be h a n d l i n g the b e h a v i o r s o f their c h i l d r e n , education, socialization, m e d i c a l care, a n d family functioning.  M o r e recently, I have taken o n a n e w role w i t h the V a n c o u v e r S c h o o l B o a r d as a D i s t r i c t A r e a C o u n s e l l o r i n an area where 85% o f the student p o p u l a t i o n is o f a different cultural orientation a n d do not speak E n g l i s h at h o m e . B e c a u s e m y j o b requires that I do a great amount o f c o u n s e l l i n g , consulting, a n d coordinating, it is essential that I have a deeper understanding o f the cultural values and ideologies w h i c h p l a y a role i n parents' c h i l d rearing practices. H e n c e , I b r i n g to this study a desire to help families o f diverse cultural b a c k g r o u n d s .  Selection o f the Participants A variety o f cultural b a c k g r o u n d s were i n c l u d e d i n m y sample o f parents w h o b e l o n g e d to the A u t i s m S o c i e t y o f B . C .  A n advertisement i n search o f i m m i g r a n t parents  l i v i n g w i t h a c h i l d w i t h autism was p l a c e d i n the A u t i s m B . C . Newsletter. T h e c r i t e r i o n  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  p o s s i b l e to a l l o w the participants to direct their o w n exploration. I h o p e d that they w o u l d i n c l u d e s u c h things as a description o f their feelings w h e n they first d i s c o v e r e d that they h a d a c h i l d w i t h autism a n d a description o f events that o c c u r r e d p r i o r to their d e c i s i o n to i m m i g r a t e to C a n a d a . A s w e l l , I used this opportunity to c o n v e y m y respectful c o n c e r n to the participants to foster a relationship o f empathic understanding a n d trust. I took this o p p o r t u n i t y to i n f o r m t h e m that any i n f o r m a t i o n resulting f r o m this research study w o u l d be kept strictly confidential. A l l documents were identified o n l y b y c o d e n u m b e r a n d kept i n a l o c k e d f i l i n g cabinet. Participants were not be identified b y n a m e i n any reports o f the c o m p l e t e d study a n d a l l data records o n the computer a n d a l l discs were deleted at the e n d o f the project (approximately six months). T h e second-phase o f the interview was u s e d for data gathering i n the f o r m o f open-ended questions. In an attempt to u n c o v e r as m a n y stories about these i m m i g r a n t parents as possible, I kept it as unstructured as possible. I asked s o m e questions o c c a s i o n a l l y for the purpose o f c l a r i f i c a t i o n a n d to acquire an increased m e a n i n g o f a topic. Questions i n c l u d e d : "Share w i t h m e s o m e experiences i n y o u r h o m e country w h i c h y o u m i s s today, D e s c r i b e s o m e early m e m o r i e s i n y o u r h o m e l a n d , W h a t is p r o v i d e d here i n V a n c o u v e r w h i c h y o u d i d not experience i n y o u r c o u n t r y o f o r i g i n ? , W h a t does that m e a n for y o u ? , C o u l d y o u tell m e m o r e about that?, W h a t is it that y o u are m i s s i n g ? W h a t do y o u need that y o u don't h a v e ? " ( E l l i s , 1994). I h a d to take great care not to direct m y participants. T h e interview was deliberately kept unstructured i n order to p r o d u c e data that m i g h t otherwise be m i s s e d ; h o w e v e r , I as the c h i e f researcher d i d have a list o f aspects that I h o p e d w o u l d be c o v e r e d . A l t h o u g h there were n o n - v e r b a l messages throughout the interview, m o s t data w h i c h was a n a l y z e d was i n the f o r m o f language, and these v e r b a l descriptions were  36  interpreted b y m e . T h e extent a n d duration o f these in-depth interviews v a r i e d a n d d e p e n d e d o n the specific circumstances o f each o f the participants s u c h as the nature o f the experiences, the c o m f o r t l e v e l experienced b y the participants, a n d the ability o f the participant to express their experiences whether it be due to a language barrier or a sensitive topic. F i n a l l y , i n the third phase o f the interview, I s u m m a r i z e d a n d interpreted the general gist o f the interview. T h e participants h a d the opportunity to r e p l y b y stating, " T h a t is exactly what I was t r y i n g to say," or "That is not quite what I feel."  Each  interview was audio-taped and then transcribed to be studied b y m e . A f t e r careful analysis o f the first interview, I approached the s e c o n d interview w i t h specific  questions  i n m i n d to h e l p m e fill i n the gaps. A f t e r I identified different categories o f m e a n i n g f r o m the first interview - s u c h as f a m i l y functioning styles, social support systems, a n d f a m i l y resources - 1 d e v e l o p e d questions to increase the a c c u r a c y a n d m e a n i n g o f m y narrative interpretation. Analysis T h e data analysis took place i n three parts. T o b e g i n , I adopted an unstructured interview format that i n v i t e d respondents to speak i n their o w n voices. S e c o n d l y , each interview was audio-taped a n d transcribed verbatim. T h e next step r e q u i r e d a c l a r i f i c a t i o n o f the material, b y n o t i n g superfluous material s u c h as digressions a n d repetitions a n d b r i n g i n g the co-researchers o w n understanding into light as w e l l as m y perspectives. I b e g a n b y r e a d i n g o v e r the descriptions searching for themes a n d significant connections. T h e m e s c a n be thought o f as "knots i n the w e b s o f our experience, a r o u n d w h i c h certain experiences are spun a n d thus experienced as m e a n i n g f u l w h o l e s " ( V a n M a n e n , 1984). R e c u r r i n g topics were categorized under three m a i n headings entitled support systems,  37  f a m i l y f u n c t i o n i n g styles a n d f a m i l y resources. U n d e r those three m a i n headings, I c a t e g o r i z e d the i n f o r m a t i o n into different sub-headings w h i c h i n c l u d e c o m m i t m e n t , appreciation, a l l o c a t i o n o f time, sense o f purpose, congruence a m o n g f a m i l y m e m b e r s , c o m m u n i c a t i o n , rules and values, c o p i n g strategies, o p t i m i s m , f l e x i b i l i t y a n d adaptability, balance, a n d extra-familial relationships s u c h as the e d u c a t i o n system, M i n i s t r y for C h i l d r e n a n d F a m i l i e s , a n d finances. A s w e l l , intra-, inter-, a n d extraf a m i l i a l emotions s u c h as sadness, frustration, guilt a n d self-blame, anxiety, fear, embarrassment, a n d courage were discussed. A f t e r the i n f o r m a t i o n was stranded into categories, I tried to m a k e sense o f all these parts b y l o o k i n g at the w h o l e . N a r r a t i v e i n q u i r y is strongly i n f l u e n c e d b y a sense o f the w h o l e that p l a y s an integral role i n the construction a n d the r e a d i n g o f a narrative account ( C o n n e l l y & C l a n d i n i n , 1990). In attempting to search for the deeper values that reappear i n various stories,  I asked  questions s u c h as: W h a t is absent i n these stories i n terms o f m y categorized topics s u c h as s o c i a l support networks, resources, and c o p i n g styles? D i d they talk p r i m a r i l y o f the past, present, or future? Is o p t i m i s m present? W h a t significant others appear i n the stories? W h o are the other characters and h o w does the co-researcher p o s i t i o n h i m / h e r s e l f i n relation to them? D o the parents appear to be passive or active? ( E l l i s , 1994) B y a s k i n g m y s e l f these questions, I gained a better understanding o f their w o r l d s . I tried to search for the c o m m o n a l i t i e s present i n all three cases b y constructing a time line w h i c h i n c l u d e d events that all three couples went through as discussed i n the interview. T h e y i n c l u d e (a) the events leading up to the d e c i s i o n to i m m i g r a t e to C a n a d a ; (b) the t r i u m p h s and tribulations that they endured d u r i n g the i m m i g r a t i o n process to C a n a d a ; a n d (c) the o n g o i n g d e v e l o p m e n t a n d continuation o f a variety o f relationships b o t h w i t h i n a n d  38  outside o f the f a m i l y . T h e result is not a c h r o n o l o g i c a l life history, but a general p o r t r a y a l o f what engages, p r e o c c u p i e s , motivates, pleases, interests, frightens or displeases t h e m ( E l l i s , 1994). C a s e portraits are presented. T o respect the confidentiality o f the participants, all n a m e s are fictional. M y explanation attempts to w e a v e the past experiences, emotions, attitudes, a n d interests o f the i m m i g r a n t parents c a r i n g for their c h i l d w i t h 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. T h e i r v o i c e s w e r e w o v e n throughout. I c h e c k e d b a c k w i t h the participants to ensure that m y account was consistent w i t h their experiences.  T h e most o v e r w h e l m i n g task i n the data analysis was f i n d i n g the l i n k b e t w e e n m y 'narrative construction' a n d m y 'narrative c r i t i c i s m ' ( C o c h r a n , 1990). T h a t is, h a v i n g to adjudicate b e t w e e n the w h o l e a n d each part was a difficult challenge. M y i n i t i a l analysis o f the narrative ' w h o l e ' revealed that the experiences o f i m m i g r a n t parents i n c a r i n g for their c h i l d w i t h autism revolves a r o u n d the e m o t i o n a l w o r k invested i n a w i d e variety o f relationships. T h e most e m o t i o n a l w o r k is invested i n their c h i l d w i t h autism, a n d the m a j o r i t y o f the relationships established thereafter are based o n that f o c a l p o i n t b e i n g the p r i m a r y relationship. W h e t h e r it be i n their country o f o r i g i n or C a n a d a , relationships p l a y a significant role i n the lives o f i m m i g r a n t parents l i v i n g w i t h a c h i l d w i t h autism.  Trustworthiness o f the S t u d y N u m e r o u s strengths a n d weaknesses p l a y a role i n the trustworthiness o f m y study. O n a positive note, the narrative m o d e o f i n q u i r y p r o v i d e s i m m i g r a n t parents c a r i n g for a c h i l d w i t h autism an opportunity to b u i l d a research relationship w i t h m e . B e i n g that m y central concept i n this study revolves a r o u n d 'relationships', the narrative  39  p a r a d i g m is an ideal m o d e o f i n q u i r y . M o r e o v e r , s i m p l y telling their stories m a y be a n e m p o w e r i n g experience ( C o n n e l l y & C l a n d i n i n , 1990). In other w o r d s , the c o l l a b o r a t i v e nature o f the research process has the potential to g i v e i m m i g r a n t parents a n o p p o r t u n i t y to see t h e m s e l v e s as participants i n their n e w c o m m u n i t i e s .  A n o t h e r strength i n a narrative study is that it offers scope for questions that are o f direct significance to practice. " T h e p r i n c i p a l value o f narrative is that its i n f o r m a t i o n c o m e s c o m p l e t e w i t h evaluations, explanations, and theories a n d w i t h selectivities, silences, a n d slippage that are intrinsic to its representations o f reality." ( C a s e y ,  1996)  N a r r a t i v e i n q u i r y is flexible, adaptable, a n d includes n o n - v e r b a l behavior. A n o p e n ended interview is a spontaneous a n d flexible m e t h o d w h i c h a l l o w s the interviewees to search for m e m o r i e s a n d thoughts that they w i s h to talk about i n regards to c a r i n g for their c h i l d w i t h autism, rather than b e i n g forced to r e s p o n d to r i g i d questions.  A s w e l l , this m e t h o d p r o v i d e d m e an opportunity to utilize m a n y o f m y c o u n s e l l i n g skills as I attempted to establish a b o n d w i t h the story teller. I enjoy interacting w i t h people, a n d I experienced great pleasure i n h e a r i n g their stories a n d a c q u i r i n g a deeper understanding o f their l i v e d experiences. I adopted a p e r s o n centered a p p r o a c h , a n d I tried to be as o p e n , neutral, a n d unbiased i n the interview i n spite o f m y o w n inherent subjectivities. L e a d i n g questions were avoided; h o w e v e r , o p e n questions s u c h as, " H o w do y o u feel it was h e l p f u l ? " and " W h y do y o u b e l i e v e life was easier i n S e o u l ? " were asked.  T h e narrative p a r a d i g m steered m y research and p r o v i d e d the f o u n d a t i o n for m y interpretations; h o w e v e r , I tried to use m u l t i p l e sources o f evidence. D u r i n g the c o l l e c t i o n  40  and interpretation o f the data, I c h e c k e d m y interpretations o f the specific  experiences  w i t h the participants ideas to validate m y findings. A s w e l l , a c o m p a r i s o n b e t w e e n the c o researchers, the literature, a third party, and m y prior experience w i t h families l i v i n g w i t h autism further e n r i c h e d m y findings. G i v e n that different p e o p l e m i g h t systemize the anecdotes i n different w a y s , I strengthened m y research b y h a v i n g another p e r s o n r e v i e w the transcripts a n d put the i n f o r m a t i o n into categories.  V e r b a t i m accounts o f conversations such as audio tapes, a n d direct quotes o n transcripts were studied, a n d these materials are h i g h l y v a l u e d as data ( M c M i l l a n & S c h u m a c h e r , 1997). H o w e v e r , the presence o f the audio tape also c a u s e d s o m e anxiety as expressed b y s o m e o f the co-researchers. A f t e r the first few m o m e n t s h o w e v e r , m o s t p e o p l e v i s i b l y r e l a x e d a n d seemed to forget its presence. I agree w i t h H o w a r d S c h u m a n ' s statement w h i c h suggests that, "too m u c h c a n be inferred f r o m answers taken at face v a l u e to questions o f d u b i o u s merit... a l l answers d e p e n d u p o n the w a y a question is formulated. L a n g u a g e is not a c l e a n l o g i c a l t o o l l i k e mathematics that w e c a n use w i t h p r e c i s i o n . . . A s i f this c o m p l e x i t y were not e n o u g h , o u r answers are also i n f l u e n c e d b y w h o asks the question" ( M i s h l e r , 1986). B y e n g a g i n g i n c o n t i n u o u s self-questioning a n d re-evaluation o f all phases o f the research process, I m a d e an effort to a c k n o w l e d g e m y subjectivity so that I was aware o f m y potential biases d u r i n g m y data c o l l e c t i o n a n d analysis. H e n c e , another strength w h i c h is apparent i n narrative research is the personal d i m e n s i o n such as the n o t i o n o f reflexivity. W i t h this m e t h o d , I w a s encouraged to place m y s e l f i n m y research. In other w o r d s , I was not separate f r o m the realities o f w h i c h I was investigating. In order to authenticate m y  41  interpretation, m y o w n presuppositions were a c k n o w l e d g e d . T h a t is, m y s e l f a n d m y e m o t i o n s w e r e i m p l i c a t e d i n this research ( C o n n e l l y & C l a n d i n i n , 1990).  B e i n g that a basic tenet for qualitative research is that the researcher is the m a j o r research instrument ( C o n n e l l y & C l a n d i n i n , 1990), it was important to note m y particular orientation i n this study i n order to understand h o w I arrived at the interpretation o f the stories. D u e to cultural barriers a n d a general u n f a m i l i a r i t y w i t h an u n k n o w n researcher, s o m e o f the parent volunteers m i g h t not have felt at ease to disclose p e r s o n a l anecdotes. In fact, one parent e x c l a i m e d , " M a y b e I a m intimidated because I a m t a l k i n g to a native C a n a d i a n l i k e y o u . " C o n s e q u e n t l y , I question the depth o f each account. In a d d i t i o n , i n a l i m i t e d time span, perhaps families were m o r e w i l l i n g to discuss areas i n w h i c h they were c o p i n g w e l l rather than their areas o f grave c o n c e r n . M o r e o v e r , a narrative study that entailed thirty interviews o v e r a longer duration m i g h t have a different tone. In brief, another research study m a y not reveal the same results. H o w e v e r ,  it is important to note that a l i m i t e d n u m b e r o f interviews w i t h three i m m i g r a n t families m a r k s a b e g i n n i n g i n the exploration o f i m m i g r a n t parents c a r i n g for their c h i l d w i t h  autism. P e s h k i n states: W h e n I disclose what I have seen, m y results invite other researchers to l o o k w h e r e I d i d a n d see what I saw. M y ideas are candidates for others to entertain, not necessarily as truth, let alone T r u t h , but as positions about the nature a n d m e a n i n g o f a p h e n o m e n o n that m y fit their sensibility a n d shape their sensibility and shape their t h i n k i n g about their o w n inquiries ( P e s h k i n , 1985; p . 280).  M y research has l a i d the g r o u n d w o r k for future i n q u i r y .  42 Chapter I V C a s e Portraits Portrait o f a K o r e a n f a m i l y  M r . a n d M r s . K care for one seven year o l d b o y , T o m a s , w i t h autism. T h e y arrived to C a n a d a five months ago f r o m S e o u l , K o r e a . A two h o u r interview w i t h this f r i e n d l y a n d cooperative f a m i l y h e l p e d m e acquire a richer understanding o f their experiences i n c a r i n g for their c h i l d w i t h autism i n K o r e a and i n C a n a d a . A n initial i n t e r v i e w w i t h M r . a n d M r s . K revealed a f a m i l y w h o is adjusting extraordinarily w e l l to their n e w h o m e here i n C a n a d a i n spite o f the recent significant changes i n their lives. T o m a s is an attractive, healthy, a n d l o v i n g b o y w h o has autism. T h e y d e s c r i b e d T o m a s as b e i n g " h i g h f u n c t i o n i n g - a c a d e m i c a l l y able - w h o experiences s o c i a l difficulties." C o n s e q u e n t l y , he c a n be hyperactive, i m p u l s i v e , distractible, a n d has a short attention span. H e enjoys the c o m p a n y o f his parents and has trouble adjusting to n e w situations. In the a c a d e m i c d o m a i n , they describe their son as d o i n g quite w e l l , a n d this is the reason w h y education is so important to them. It appeared that life i n K o r e a was c h a l l e n g i n g for various reasons. P r i m a r i l y , due to the nature o f the society, M r . K felt like it was not the c o n d u c i v e e n v i r o n m e n t to raise their s o n for several reasons. T o b e g i n , he described the city as b e i n g a " c r o w d e d c i t y a n d the c o m p e t i t i o n is v e r y h a r d a n d I l i v e d that k i n d o f life. I think that for the smart c h i l d . . . f o r smart people, it is o k a y . " H e continued to describe his son as h a v i n g a little p r o b l e m , a n d the K o r e a n s c h o o l system w o u l d not sufficiently meet his a c a d e m i c needs. H e p e r c e i v e d the education system as b e i n g one that served the t y p i c a l c h i l d , but was v e r y u n a c c o m m o d a t i n g for the c h i l d w i t h 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 a m v e r y h a p p y n o w as I have the time to support m y f a m i l y right now."  F u r t h e r m o r e , M r . K described his life i n S e o u l has h a v i n g n o time to be w i t h his w i f e a n d c h i l d . H e d e s c r i b e d his w o r k i n g situation, "I used to w o r k for a b i g c o m p a n y . I w o u l d w o r k a l l d a y a n d c o m e b a c k at 11:00 at night. T h i s is v e r y c o m m o n i n K o r e a . I w a n t e d to help m y s o n a n d m y wife, but I c o u l d not because I was so busy... w o r k i n g so hard. F o r m y s o n he needs his mother but he needs his father as w e l l . I c o u l d not d o that i n m y m o t h e r country. O u r son is our m a j o r p r i o r i t y . " T h e y expressed the importance o f h a v i n g a strong s o c i a l support s y s t e m i n K o r e a s u c h as f a m i l y . T h e i r parents, grandparents, and aunts w o u l d help t h e m raise their son, and this s e e m e d to lift s o m e o f the burdens i n v o l v e d i n r a i s i n g a c h i l d w i t h autism. F a m i l y b a s e d c h i l d c a r e p r o v i d e d them w i t h the l u x u r y o f s p e n d i n g s o m e time together. A s w e l l , it seems that this i n f o r m a l support system m a d e up the f o u n d a t i o n o f their s o c i a l life. T h e K ' s are recent i m m i g r a n t s to V a n c o u v e r , C a n a d a , a n d arrived i n C a n a d a i n the past year. S i n c e they arrived i n C a n a d a , they have enjoyed their time here. T h e y l i k e the nature here a n d they reiterated the fact that " C a n a d a keeps its c h i l d r e n safe." Presently, the f a m i l y lives i n a s m a l l t o w n house that they recently purchased. M r . K recently l a n d e d a j o b here to help m a k e ends meet; however, it w i l l not suffice for the l o n g term. H e d e s c r i b e d h i m s e l f as b e i n g o v e r q u a l i f i e d for the j o b i n spite o f h a v i n g h a d to write s o m e recent tests. A t present, like i n K o r e a , M r s . K stays h o m e w i t h their s o n a n d is the p r i m a r y care g i v e r i n the h o m e . M r . K w o r k s part time out o f his h o m e i n a business related organization. T h e y both seemed pleased about the increase i n t i m e w h i c h  45  M r . K c a n s p e n d w i t h the f a m i l y w i t h his present e m p l o y m e n t . T h e y are presently l i v i n g o n p r i o r savings from their h o m e country. D u e to the d a i l y demands s u c h as feeding, b a t h i n g , d i s c i p l i n i n g , toileting, and disrupted sleeping patterns, b o t h M r . a n d M r s . K feel o v e r w h e l m e d sometimes. In fact, they opted not to have m o r e c h i l d r e n due to the p r e s s i n g d e m a n d s o f T o m a s o n them. T h e y s i m p l y do not have the energy or the resources.  T h e i r d e c i s i o n to m o v e to C a n a d a was for educational reasons o n l y . T h e i r s o n s i m p l y was not getting the education that they d e e m e d acceptable for h i m . " W e are v e r y m o t i v a t e d to educate h i m because he is h i g h functioning. H e is the highest i n his m a t h class. H e does not speak w e l l , but he does understand w e l l . W e are m o t i v a t e d . E v e n t h o u g h he has a p r o b l e m i n social interaction." G e n e r a l l y , they have b e e n v e r y i m p r e s s e d w i t h the s c h o o l system here i n that T o m a s was granted a special education assistant i n his h o m e s c h o o l a n d was integrated into a regular c l a s s r o o m i m m e d i a t e l y . "I c a n say, m y s o n is autistic, a n d the s c h o o l system is w i l l i n g to help...most teachers support the c h i l d w i t h special care." M r . K e x p l a i n e d , " W h e n I d e c i d e d to i m m i g r a t e here, I was v e r y w o r r i e d , and I was w o r r i e d about h o w m y son w o u l d be i n this society. A f t e r I arrived here, I w a s pleased." H e e x p l a i n e d that his meetings w i t h the A u t i s m S o c i e t y o f B . C .  gave h i m v e r y  g o o d i n f o r m a t i o n . A s w e l l , he h a d the opportunity to meet his son's p r i n c i p a l , s c h o o l teacher, a n d b e h a v i o r a l consultant. "I a m v e r y h a p p y a n d comfortable because m y s o n is adjusting quite w e l l . " H o w e v e r , they expressed s o m e c o n c e r n a r o u n d the nature o f the p r o g r a m , " T h e y are not aggressive and proactive i n treating t h e m " ( c h i l d r e n w i t h s p e c i a l needs). H e is i n search for a system w h i c h offers a specific p r o g r a m for his s o n a n d suggested that he cannot find one here i n V a n c o u v e r . H e e x p l a i n e d that the o f f i c i a l s y s t e m i n V a n c o u v e r have k i n d and supportive workers, but they do not k n o w exactly  46  h o w to h e l p . H e c o n t i n u e d , " W h a t I m e a n is m y son is h i g h functioning...so i f I offer h i m a g o o d suitable education, he m i g h t be able to study at a u n i v e r s i t y a n d he w i l l h a v e a suitable j o b w h i c h is m y objective for m y son, but i n B . C . they think m o r e about t a k i n g care o f the c h i l d a n d that is n o g o o d . In K o r e a , they d o not take care o f the c h i l d , but they f i n d s o m e t h i n g that heals t h e m . "  A t present, M r . K ' s biggest w o r r y is a r o u n d finances. B e i n g that he is the ' b r e a d w i n n e r ' he feels a lot o f stress, and he is v e r y concerned about the m o n e y he is f o r c e d to s p e n d o n the L o v a a s P r o g r a m due to the fact that there is no assistance p r o v i d e d . " W e s p e n d about $20,000 per year w h i c h is v e r y v e r y b i g m o n e y for us. W e have to p a y for the flight fare a n d a c c o m m o d a t i o n for the A m e r i c a n assistance. I c o u l d earn e n o u g h m o n e y i n K o r e a but here it is different. I cannot have the j o b here. T h e language a n d I d o n ' t h a v e any relationships here. I don't have any b a c k g r o u n d here. S o m e t i m e s I d o n ' t l i v e w e l l . I can't sleep because I can't m a k e m o n e y for the extra $20,000 i n this society because o u r b a c k g r o u n d is different. I have to invest 1 - 2 - 3 - 1 0 years to m a k e contacts. I h a v e sleepless nights. I k n o w that C a n a d i a n s already spend a lot o f m o n e y to g i v e c h i l d r e n l i k e T o m a s a f u l l time teaching aid; w e have m a n y things but these are things that take care o f the c h i l d . It s h o u l d be m o r e aggressive and proactive to heal the c h i l d w i t h autism. I d o n ' t see that k i n d o f p u b l i c p o l i c y here i n this p r o v i n c e . " H e expressed s o m e u r g e n c y . "If they cannot p r o v i d e o n time education, I m e a n w h o w i l l take care o f h i m ? I m e a n , M o t h e r a n d Father w i l l die s o m e day, right, so u u u h h h w e h a v e l i m i t e d time m a y b e ten years. W i t h o u t education, he w i l l waste his life. S o the time is n o w . W e n e e d m o n e y n o w . In ten years, w e w o n ' t need any m o n e y . I w o n ' t n e e d a n y f i n a n c i a l  support at all. T h e time is n o w . " M r . K m a d e it v e r y clear that he worries a lot about his f i n a n c i a l resources. T h e y talked about the importance o f establishing s o m e friends here i n V a n c o u v e r . F o r e x a m p l e , they d e s c r i b e d their place o f residence as b e i n g a c o n d u c i v e p l a c e for m e e t i n g C a n a d i a n s . A s w e l l , M r . K stated, "I a m t r y i n g to have C a n a d i a n friends, as this is better for m e because I w i l l l i v e i n C a n a d a . I p l a y g o l f w i t h C a n a d i a n s . S o m e t i m e s I g o b y m y s e l f a n d meet C a n a d i a n friends. I f I don't do that, I w i l l h a n g a r o u n d w i t h o n l y Koreans."  It appeared that g o i n g out into the p u b l i c was v e r y difficult for v a r i o u s reasons. T o b e g i n , they shared their feelings o f embarrassment and frustration. M r s . K shared a story that seems to o c c u r often i n her life. " E s p e c i a l l y i n a p u b l i c place... H e does not want to line up i n a s h o p p i n g m a l l . H e shouts sometimes a n d has s c r e a m i n g fits a n d tantrums. E v e r y b o d y l o o k s at us and wonders w h y m y c h i l d does that. S o m e t i m e s I e x p l a i n , but most o f the time, I don't. I say, I d o n ' t k n o w . A c h i l d w i t h a u t i s m l o o k s l i k e a n o r m a l c h i l d so it is not easy." She felt l i k e p e o p l e were questioning her c h i l d rearing practices b y subtle acts o f staring or avoidance, and c l a i m e d that she h a d little c o n t r o l o v e r the situation.  T h e y expressed a n e e d for m o r e time for themselves. In response to m y question, " H o w w o u l d y o u r life be i f y o u d i d not have a c h i l d w i t h autism?" T h e y r e s p o n d e d , "It w o u l d be l i k e parents w i t h n o r m a l k i d s . I c o u l d do something for m y s e l f . N o w , I h a v e a c h i l d w i t h autism, I can't do anything I want to do. T h e o n l y time I have is i n the fitness c l u b . A little t i m e I c a n forget about m y son, but then I go b a c k h o m e a n d the h a r d time begins. Y o u k n o w what I m e a n ? " M r . K further explained, " E v e n w h e n w e have the time,  48 and T o m a s is at s c h o o l , w e w o r r y . I can't relax. I g i v e them m y c e l l p h o n e n u m b e r i n case there is a n emergency. Isn't it hell. It is h e l l ! " T h e y w o r r i e d that the s c h o o l w o u l d c a l l t h e m . S p e c i f i c a l l y , they w o r r i e d that they w o u l d be contacted b y the s c h o o l for b e h a v i o r p r o b l e m s . A s w e l l , they reported that they spent v e r y little time a w a y from their c h i l d w i t h autism. C o n s e q u e n t l y , they d i d not have time to pursue a lot o f their o w n interests a n d they h a d v e r y little time w i t h o n l y each other. T h e y expressed an interest i n getting out a n d d o i n g m o r e activities together as a couple, but were l i m i t e d due to the d i f f i c u l t y i n f i n d i n g suitable c h i l d care. T h e y experienced anxiety i n m e r e l y t r y i n g to f i n d s o m e o n e w h o is w i l l i n g a n d has the skills to l o o k after their c h i l d w i t h autism. " S o m e t i m e s w e want to go to a dinner party, but w e can't." It was clear that they h a d m a d e n u m e r o u s sacrifices, a n d this is clarified b y M r . K ' s statement, "Parents w i t h autism s h o u l d sacrifice their lives for their c h i l d . "  T h r o u g h o u t the interview, m a n y strengths were apparent. T o illustrate, they d e s c r i b e d their relationship as b e i n g richer w i t h their c h i l d w i t h autism. "In the case o f us, our relationship is enhanced. In K o r e a , s o m e families are i n trouble w i t h their c h i l d w i t h a u t i s m a n d s o m e are h a p p y . I think that w e are a m a j o r i t y though. M a n y . c o u p l e s are h a p p y w i t h their c h i l d w i t h autism. I think that w e are a g o o d couple. O u r relationship has b e c o m e better a n d better because the o n l y person w e c a n r e l y o n is each other."  49  Portrait o f a P h i l i p p i n o F a m i l y  M r . a n d M r s . P i m m i g r a t e d to C a n a d a four months ago f r o m the P h i l i p p i n e s . T h e y have three c h i l d r e n ages six, four and ten months. T h e two oldest c h i l d r e n h a v e b e e n d i a g n o s e d w i t h v a r i o u s degrees o f autism.  M r s . P w o r k e d as an executive secretary i n a n international institution, A s i a n D e v e l o p m e n t B a n k . S h e described herself as b e i n g computer literate, a n d has a g o o d u n d e r s t a n d i n g o f v a r i o u s software programs. H e r h u s b a n d h a d a w e l l p a y i n g j o b i n M a n i l a as he w o r k e d as a government  employee.  M r s . P described her j o b i n the P h i l i p p i n e s , " I h a d a r e a l l y g o o d j o b c o m p a r e d to other e m p l o y e e s . " S h e e x p l a i n e d that her salary was v e r y g o o d ; h o w e v e r she still c o u l d not afford c h i l d care. It was v e r y clear to m e that she has g i v e n up a lot, a n d M r s . P feels that it is unfortunate that her government c o u l d not p r o v i d e services for her c h i l d r e n . S h e further e x p l a i n e d that i n the P h i l i p p i n e s she c a n e n r o l l her c h i l d i n special p r o g r a m s , but then she h a d to stop because she c o u l d not afford it. S h e e x p l a i n e d that c h i l d r e n w i t h autism are v e r y h a r d to train a n d require special care, " T h e y can't talk, they aren't toilet trained, no matter h o w h a r d I try to teach them, they are s l o w , hyperactive...all these things just eat up y o u r time t r y i n g to take care o f t h e m . "  W h e n M r s . P f o u n d out that her first c h i l d was autistic, she described it " W e l l , it is l i k e the w o r l d fell d o w n o n m e . " She h a d a lot o f hopes and dreams for her first c h i l d , " B e f o r e I h a d her, I was preparing already to g i v e her a g o o d education. I b o u g h t all these educational toys a n d b o o k s so y o u c a n just i m a g i n e m y frustration w h e n I f o u n d out s o m e t h i n g was w r o n g w i t h her. I m e a n I w o u l d rather accept her as b e i n g a hare lip or p o l i o , but n o w w i t h a m e n t a l incapacity y o u k n o w or mental disability because it is r e a l l y  50  t o u g h , because y o u cannot c o m m u n i c a t e and it is really frustrating. I r e a l l y want to talk to her...really talk, but y o u can't do that, but n o w she has i m p r o v e d a lot, a n d she is r e a l l y smart i n s o m e w a y s . S h e c a n do things. S h e c a n draw, she has a g o o d v o c a b u l a r y , a n d she c a n speak E n g l i s h n o w . "  B e f o r e her s e c o n d c h i l d was diagnosed, she h a d questions. T h e y said, " D o n ' t w o r r y . " S h e c o n t i n u e d , " I was afraid that he m i g h t be autistic. I feel so stupid n o w w h e n I l o o k b a c k . I b l a m e m y s e l f . It pains m e to realize that I waited too late for h i m . " S h e admits that she h a d s o m e questions w h e n her son was three years o l d . D u r i n g the first t w o years, she d e s c r i b e d her s o n as b e i n g fine. "I thought that he was a g o o d b o y because he d i d not c r y often. H e was different. H e w o u l d just sleep t h r o u g h the night. H e was so easy. H e h a d eye contact, l o v i n g u n l i k e m y first. I thought that he started to speak at a r o u n d e l e v e n months. O n e time he p o i n t e d at an airplane, a n d said "airplane", a n d another t i m e 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 . c o m m e r c i a l s , he c o u l d f o l l o w s i m p l e instructions like t h r o w i n g his diapers i n the waste basket, a n d put o n y o u r slippers. I f I was upstairs, and I y e l l e d his n a m e , he w o u l d c o m e u p . . . " S h e e x p l a i n e d that her little b o y is m o r e severe than her daughter because he cannot talk at all. H e c a n sing, and he c a n m i m i c what is o n T V a n d r a d i o , but he is not toilet trained. S h e talked about the discrepancies apparent i n c a r i n g for a c h i l d w i t h autism, " H e c a n use a s p o o n , a n d apple, I put bits a n d pieces there and he c a n p i c k t h e m up but w h e n y o u m a k e h i m p u l l his pants up, he can't do it! I just don't understand it. I w o u l d l i k e to teach h i m , but I just cannot get it...it is v e r y frustrating, and I c r y a lot o f buckets f u l l . "  W h e n M r s . P d e s c r i b e d her experience w i t h b e i n g pregnant w i t h her third c h i l d , she was b o t h fearful a n d h o p e f u l . "I d i d not want to get pregnant a g a i n . . . O h , I p r a y e d h a r d  51  and hard. I said I c a n accept it, but please g i v e m e a n o r m a l c h i l d w i t h n o r m a l development."  S h e d e s c r i b e d her feelings w h e n she sees m o r e t y p i c a l families a r o u n d her. " Y o u are v e r y l u c k y . W h e n I see families around w i t h three or four c h i l d r e n a n d they are a l l n o r m a l . . . b e c a u s e w h e n y o u r c h i l d is n o r m a l , y o u c a n just talk to t h e m straightly, but w i t h t h e m , I just can't express it. Y o u k n o w , I want them to do things, but they just can't d o things n o matter what I demonstrate it. I talk to them. M y daughter...she just l o o k s at m e b l a n k l y t h r o u g h a n d through... just n o contact. It m a k e s m e c r y . " S h e later stated, "It is frustrating. I want to understand m y c h i l d r e n . I want to give t h e m all the supports they n e e d . " M r s . P o p e n l y expressed her frustration i n c a r i n g for her c h i l d r e n w i t h autism. S h e confessed that the endless a n d persistent amount o f care that her c h i l d r e n require is d r a i n i n g a n d exhausting for her. S h e e x p l a i n e d that they have m a d e b i g c o m p r o m i s e s i n m o v i n g to C a n a d a . T o b e g i n , they presently l i v e i n a one b e d r o o m apartment under c r o w d e d c o n d i t i o n s . T h e y h o p e that w i l l eventually be able to afford better h o u s i n g here i n C a n a d a . " W e w o u l d l i k e to get a h o u s e o f our o w n one day." She explained, " T h e first two w e e k s a n d e v e n i n fact n o w , w e are b o t h v e r y sad a n d w e just c r y b o t h o f us." S i n c e a r r i v i n g i n C a n a d a , M r . P has taken o n a new j o b at M c D o n a l d s as a m a i n t e n a n c e crew. H e w o r k s night shifts, a n d his hours are from 11:00 p . m . - 7:00 a.m. H e e x p l a i n e d , "I feel r e a l l y b a d . I want to be w i t h them. W h e n I w o r k e s p e c i a l l y l e a v i n g t h e m altogether at night. In the P h i l i p p i n e s w e sleep i n one r o o m . " M r s . P interrupted, " I tell h i m , don't w o r r y about m e because he is guilty because he can't help m e take care o f the k i d s . "  52 T h e i r reasons for m o v i n g to C a n a d a were solely based o n the needs o f their c h i l d r e n . " W e c a m e here because o f m y children. T h e y have p r o b l e m s . I d i d s o m e researching, a n d I f o u n d that C a n a d a is a great place to raise k i d s a n d I c a n g i v e t h e m a g o o d education. T h e y h a v e special p r o g r a m s for c h i l d r e n like them. A l t h o u g h w e k n o w it w i l l be difficult, because w e l o v e t h e m o f course, w e have to do it. S h e expressed to m e w i t h true c o n v i c t i o n , " M y c h i l d r e n are m y priority." S i n c e a r r i v i n g to C a n a d a , she has met w i t h the social w o r k e r several times. S h e agrees that the s o c i a l w o r k e r is k n o w l e d g e a b l e , but she has not b e e n instrumental i n getting direct service. S h e attributed it to the e c o n o m i c situation i n B . C . "I think the o n l y p r o b l e m that I see is a l o n g w a i t i n g list because the budgets are b e i n g cut n o w a n d B . C . e c o n o m y is i n a s l u m p . I a m h o p i n g that things w i l l p i c k u p . " S h e talked about the importance o f social support. In the P h i l i p p i n e s , they h a d relatives there w h i c h meant that she h a d b o t h m o r a l support a n d p h y s i c a l help. S h e e x p l a i n e d that she h a d f a m i l y a n d m a i d s to help her l o o k after the c h i l d r e n . S h e p r o c l a i m e d , " W e c o u l d afford m a i d s there but here w e cannot, so it is a real shock! A l t h o u g h w e k n e w it w o u l d be h a r d before c o m i n g here, but n o w it is a reality. It is r e a l l y very tough." S u r p r i s i n g l y , M r s . P d i d not get a lot o f support f r o m friends i n regards to her c h i l d r e n w i t h autism i n the P h i l i p p i n e s . She explained, "In the P h i l i p p i n e s , it is v e r y different there. T h e y w o u l d not m o c k m e . T h e y w o u l d just talk about it a n d talk about it. It's l i k e gossip y o u k n o w . O h , p o o r little M r s . P . T h e y have two a b n o r m a l c h i l d r e n , a n d I just d o n ' t want to hear that."  53 In spite o f the difficulties that they have encountered here i n C a n a d a , she stated, " B u t e v e n t h o u g h w e are feeling that w a y , I feel that these hardships w i l l c o m e to s o m e t h i n g r e a l l y w o r t h w h i l e . O f course w e are starting our life f r o m scratch."  S h e is v e r y optimistic about getting a j o b , but somewhat apprehensive too. S h e stated, " B e c a u s e w h e n I see the newspapers, I see there are j o b s that fit for m e , but I n e e d to b r u s h u p o n m y E n g l i s h . S o I think that I c a n m a k e g o o d m o n e y here as l o n g as I c a n f i n d h e l p a n d the time." S h e further stated, "I don't want to be sitting at h o m e a n d t a k i n g care o f t h e m . T h e y also have to g r o w u p a n d I w i l l be w o r k i n g also a n d put m y skills to use."  M r s . P has a lot o f h o p e i n regards to her c h i l d r e n ' s future. S h e p r o c l a i m e d , "I also p r a y for m y c h i l d r e n that they g r o w u p , that they w i l l be able to m a r r y . I h o p e that they w i l l be able to w o r k a n d carry a relationship, a n d I k n o w that i f I die, they w i l l be o k a y . I want t h e m to be able to d e v e l o p like the w a y w e are...carry o n a f a m i l y , have c h i l d r e n l i k e us. I still want t h e m to go t h r o u g h life. " She c o n t i n u e d , "If they g r o w u p to be n o r m a l p e o p l e , w e w o u l d be the happiest c o u p l e o n earth, and w e think that is p o s s i b l e . H e r e i n C a n a d a , w e c a n w o r k , w e are still y o u n g , all the services are here, a n d C a n a d i a n s are v e r y h e l p f u l , a n d they care about c h i l d r e n . " O n the w h o l e , i n spite o f the sacrifices that she has m a d e , she is v e r y optimistic about her d e c i s i o n to m o v e to C a n a d a . S h e is headstrong a n d determined to m a k e it w o r k here i n C a n a d a . S h e talked about her supportive relationship w i t h her husband, " W e have not g i v e n up w i t h each other a n d w i t h the c h i l d r e n also. W e have to be strong for them, w e have to do o u r best for t h e m . " S h e d e s c r i b e d her relationship as b e i n g closer since they arrived i n C a n a d a . "I t h i n k that  54  w e b e c a m e closer. W e understood each other. I have n o time to e n j o y m y s e l f a n d he too... I m e a n , it's just us h e r e . . . n o b o d y else."  S h e is p l e a s e d w i t h the friends that she has m a d e here. S h e meets p e o p l e at the m a l l o r at the p l a y g r o u n d . S h e talked about the difference i n sharing i n f o r m a t i o n about her c h i l d r e n w i t h autism, " B u t here it is m o r e okay. I a m m o r e open. W h e n I meet friends I tell p e o p l e up front that m y c h i l d r e n are autistic because I a m h o p i n g that they c a n h e l p m e get t h r o u g h this m o r e q u i c k l y because they k n o w h o w it goes." W h e n asked i f she has any time for herself, she r e p l i e d , " N o , I can't e v e n do m y nails. T h e p e a c e f u l time is w h e n I take a bath. I close the d o o r a n d take a shower a n d relax."  In order to c o p e w i t h the day-to-day demands, she derives a lot o f strength a n d insight from r e a d i n g a variety o f b o o k s . " R e a d i n g helps m e understand m y situations. S p i r i t u a l b o o k s - they g i v e y o u hope."  55  Portrait o f a n E n g l i s h F a m i l y  M r . a n d M r s . T care for three c h i l d r e n , C i n d y , Samantha, a n d S u s a n . T h e y are ten, seven, a n d five years o l d consecutively. T h e two youngest c h i l d r e n h a v e autism, one w i t h severe a u t i s m a n d one w i t h h i g h functioning autism. C i n d y , their m i d d l e daughter w i t h autism, is d e s c r i b e d as b e i n g above average. She has a h i g h l e v e l o f understanding, a n d her I.Q. is c o m p a r a b l e to any c h i l d her age. M r . T stated, "She has n o m e n t a l retardation as far as w e c a n see. S h e has a c o m m u n i c a t i o n p r o b l e m . " T h e i r youngest c h i l d w i t h autism is d e s c r i b e d as b e i n g a real " h a m . " S h e is v e r y affectionate, energetic, a n d v e r b a l , but exhibits a variety o f other autistic tendencies s u c h as a resistance to change, perseveration, a n d c o m m u n i c a t i o n difficulties. T h e f a m i l y m e m b e r s are recent i m m i g r a n t s to C a n a d a , a n d arrived here six months ago f r o m E n g l a n d . A c c o r d i n g to M r . T , I p i c k e d a n interesting time to c o m e a n d interview them. T h e y were e n d u r i n g a v e r y g r u e l i n g heat w a v e , a n d M r s . T was taking care o f her three c h i l d r e n w i t h m i n i m a l assistance.  It appeared that life i n their h o m e country h a d b o t h positive a n d negative features. H e spoke h i g h l y o f the autism p a n e l i n E n g l a n d w h i c h is m a d e up o f a p e d i a t r i c i a n , a p s y c h o l o g i s t , a psychiatrist, a speech therapist, a n d several other d i s c i p l i n e s w h o are all i n v o l v e d i n d e c i d i n g whether a c h i l d is autistic and that r e v i e w starts at about eighteen m o n t h s . " M o s t c h i l d r e n i n our county are d i a g n o s e d w i t h autism b y two years o l d . S o , b y the t i m e the c h i l d is thirty six months o l d , they are i n f u l l time education." H e d e s c r i b e d the story o f his two girls w i t h autism. A t t w e l v e months o l d , a h e a r i n g test r e v e a l e d that there was s o m e t h i n g w r o n g w i t h Samantha. A t eighteen months it was c o n f i r m e d that  56 S a m a n t h a h a d autism. S u s a n , o n the other h a n d , d i d not manifest the same s y m p t o m s . S h e h a d the intonation a n d c o m m u n i c a t i o n skills u n l i k e Samantha, a n d c o n s e q u e n t l y there was a time w h e n they thought that S u s a n w o u l d be okay. A s time went o n , they r e a l i z e d that s o m e t h i n g was w r o n g ; but she d i d not demonstrate e n o u g h o f the k e y indicators to warrant an o f f i c i a l autism diagnosis. H e is v e r y i m p r e s s e d w i t h the o r g a n i z a t i o n a n d early intervention p r o g r a m s i n E n g l a n d . E v e n without a n o f f i c i a l diagnosis, they p r o m p t l y got S u s a n into a speech therapy p r o g r a m two days a w e e k a n d r e c e i v e d intensive one o n one help. M r . T said that, "I a m sure that she w o u l d not h a v e d o n e so w e l l , i f she d i d not have that early support." G e n e r a l l y , the education system h a d its serious drawbacks. T h e y d e c i d e d to m o v e to C a n a d a for p r i m a r i l y educational reasons. T h e i r d e c i s i o n to m o v e to C a n a d a w a s "more i n k e e p i n g w i t h what w e w a n t e d our k i d s to get i n education. W e h a d to m a k e a d e c i s i o n . " H e further stated, " W e have always thought that C a n a d a was f u l l o f o p p o r t u n i t y for us c o m p a r e d to b e i n g i n E n g l a n d . " W h e n they w e r e faced w i t h the c l o s u r e o f the l o c a l s c h o o l where their eldest daughter w i t h autism was attending due to a l a c k o f p e r s o n n e l w h o c o u l d deal w i t h her needs, they were faced w i t h the d e c i s i o n o f either m o v i n g to a n e w country (Canada) where they h a d M r . T ' s brother a n d other relations or m o v e to a n e w county i n E n g l a n d . W h e n they v i s i t e d C a n a d a four years ago, they were l o o k i n g for a s c h o o l for their oldest c h i l d , they saw three things h a p p e n i n g . W h e n they asked about a special s c h o o l for S a m a n t h a , the p r i n c i p a l responded, " W h y ? " and preceded to talk about the m a i n s t r e a m i n g p r o g r a m i n B . C . M r . T further e x p l a i n e d that, "It was a refreshing c h a n g e i n that the p r i n c i p a l o f the s c h o o l understood the situation about autism a n d what w a s  57  r e q u i r e d a n d h o w to arrange for support, a n d it seemed l i k e that was exactly what w e wanted. W e k n e w that our daughter d i d better w h e n she was w i t h regular m a i n s t r e a m k i d s . " M o r e o v e r , he said, "Research is s a y i n g that c h i l d r e n w h o are i n a n o r m a l e n v i r o n m e n t w h o are autistic do better." In L o n d o n , she was i n a c l a s s r o o m w i t h a general g r o u p o f c h i l d r e n w i t h special needs s u c h as D o w n s s y n d r o m e , autism, a n d v a r i o u s other needs...she was getting one o n one support but she was not b e i n g taught h o w to be n o r m a l . R a t h e r she was b e i n g taught h o w to be n o r m a l w i t h i n the s p e c i a l class..."  S e c o n d l y , C a n a d a seemed like a great c h o i c e i n terms o f what the M i n i s t r y h a d to offer. A story he shared w h i c h p r o m p t e d their m o v e to C a n a d a was w i t h the M i n i s t r y . H e c o n t i n u e d , " W e p h o n e d the m i n i s t r y i n M a p l e R i d g e , a n d they said that they w o u l d p h o n e b a c k at 2:00 p . m . , a n d they p h o n e d b a c k at ten after two, a n d said, " S o r r y for p h o n i n g b a c k late. N o w , i n E n g l a n d , i f y o u got a p h o n e c a l l b a c k i n the same w e e k , it was a m i r a c l e , so that was i m p r e s s i v e ! "  F i n a l l y , they were v e r y i m p r e s s e d w i t h the l e v e l o f general services that they c o u l d expect s u c h as "respite care, speech therapy, a n d all the rest o f it." H e c o n c l u d e d b y s a y i n g that " W e were g i v e n quite an education, a n d w e thought at the time it was g o i n g to be different than what it turned out to be."  T h e education s y s t e m has turned out to be v e r y h e l p f u l i n certain respects a n d v e r y d i s a p p o i n t i n g i n others. T o b e g i n , he explained, " T h e r e is n o a l l o w a n c e for parents to h a v e a n y i n v o l v e m e n t i n any o f the decisions about c h i l d r e n especially i n the s c h o o l system. It s p e c i f i c a l l y stated w i t h the s c h o o l b o a r d that parents have n o say. O n p a g e 51 o f the C U P E agreement, it said that the special needs o f c h i l d r e n o f c h i l d r e n w i t h s p e c i a l  58  needs to be taken into account prior to any decisions about changes i n their e n v i r o n m e n t . " H e e x p l a i n e d o n a p o s i t i v e note that his daughter has a full time special education assistant ( S . E . A . ) i n the present system. H e described her as b e i n g "trained, educated, a h a r d w o r k e r , a n d b e i n g the right p e r s o n i n the right place." U n f o r t u n a t e l y , that S . E . A . was b u m p e d b y another u n i o n m e m b e r without consultation w i t h anyone. H e is v e r y d i s g r u n t l e d about the sequence o f events that f o l l o w e d . T h a t S . E . A . r e c e i v e d a f o r m letter sent b y the u n i o n to the s c h o o l b o a r d stating that these p e o p l e were b u m p e d a n d these p e o p l e w e r e f i l l i n g i n . T h e o n l y reason they f o u n d out was an accident due to an e m p l o y e e w o r k i n g late. H e stated, "If she h a d not r e c e i v e d it w e , the s c h o o l , the teachers, w o u l d not have f o u n d out until the first d a y o f s c h o o l and n o b o d y w o u l d h a v e k n o w n w h o this p e r s o n was, a n d I a m supposed to introduce a c h i l d w i t h autism w h o cannot c o p e w i t h w a l k i n g d o w n the opposite side o f the street. It is not reasonable!"  In response to this unfair action, he a n d his w i f e c o m p l a i n e d about the actions taken b y the s c h o o l district's m a n a g e r o f special needs. H e explained, "That title to m e sounds l i k e s o m e o n e w h o has s o m e educational experience. W e l l , it's not. T h i s p e r s o n is an administrator, a n d this p e r s o n is supposed to decide w h o is g o i n g to w o r k w i t h m y c h i l d . " H e wrote letters c o m p l a i n i n g about the d e c i s i o n to r e m o v e his daughter's S . E . A . H e c o m p l a i n e d that it t o o k one w e e k for a response a n d the w o m a n was i m p o s s i b l e to contact. W h e n they f i n a l l y got i n t o u c h w i t h her secretary, she i n f o r m e d t h e m that this w o m a n has n o t h i n g to do w i t h the h i r i n g a n d firing o f an S . E . A . T h e y were then t o l d that they w o u l d h a v e to write to the s c h o o l b o a r d , the administration offices a n d request that the i n f o r m a t i o n be passed o n . H e c o m p l a i n s , " W e w o u l d have to do this, not t h e m , w h o h a d b e e n t o l d that there is a p r o b l e m c o m i n g up w i t h two o f their S . E . A . s but they w e r e  59  not g o i n g to d o a n y t h i n g about it." M r . T suggested, " W h a t I want is s o m e b o d y to sit d o w n a n d coordinate this a n d organize this for y o u . " T h e T f a m i l y lives i n a somewhat spacious h o m e (relative to their h o m e i n L o n d o n ) i n Pitt M e a d o w s , B C . T h e m a j o r source o f i n c o m e for the f a m i l y consists o f M r . T ' s m o n t h l y salary. M r s . T also w o r k s a night shift o n a paper route. S h e w o r k s from 2:20 a.m. until 6:00 a.m. M o n d a y t h r o u g h F r i d a y . B y F r i d a y , he e x p l a i n e d that his w i f e is "on her knees a n d she pretty w e l l sleeps all w e e k e n d . " A l t h o u g h M r s . T is a trained registered nurse, the o n l y e m p l o y m e n t that c a n a c c o m m o d a t e the h e a v y demands from d a y to d a y is a paper route. M r . T stated, " B u t n o w she is d e l i v e r i n g papers because that is all she has time or the w h e r e w i t h a l to d o . " H e is v e r y p r o u d o f his w i f e ' s a c c o m p l i s h m e n t s a n d e x p l a i n e d , "She has a list o f qualifications c o m i n g out o f her ears as far as p s y c h o l o g y goes. S h e has p u b l i s h e d h a l f a d o z e n articles. S h e has b e e n a co-editor o f several b o o k s and she has written several chapters o f b o o k s . T h i s is was what w e c a l l P . K . - P r e - K i d s . "  T h e i r three c h i l d r e n require a significant amount o f time a n d energy. " T h e y are 24 h o u r a d a y c h i l d r e n but I have to find time in-between to w o r k , so does m y w i f e , this house needs c l e a n i n g , there is w o r k to be done i n the house. A l l this is secondary to the kids."  A t present, they h a v e h a d to m a k e n u m e r o u s c o m p r o m i s e s a n d a c c o m m o d a t i o n s for their two c h i l d r e n w i t h autism. B e c a u s e their c h i l d r e n w i t h autism were not aware o f danger, e v e r y t h i n g i n their house was l o c k e d up. H e described, " W e d o u b l e l o c k the front d o o r , d o u b l e l o c k the b a c k door, double l o c k the side gate, the fence a r o u n d the h o u s e is six feet h i g h , the p e o p l e next d o o r have built a six foot gate over their d r i v e w a y just so  60  there is an a d d i t i o n a l stop for that c h i l d not to go out o n the m a i n r o a d . " It appears that a l l doors are l o c k e d i n c l u d i n g the fridge.  M r . T e x c l a i m e d , "In the future w h e n she is 25 years o l d , a n d I a m dead, she is not a f u l l cost to society a n d l i v i n g i n an institution. I want her to be one o f the 4 0 % o f c h i l d r e n w i t h a u t i s m w h o actually get out into shared a c c o m m o d a t i o n or h o p e f u l l y l i v e o n their o w n . " S i n c e a r r i v i n g to C a n a d a , they have d i s c o v e r e d that " T h e r e are s i m i l a r p r o b l e m s here, l i k e E n g l a n d , but there are b i g g e r benefits, at least d o w n the road. W e h a v e lost a lot that w e d i d not think that w e w o u l d have to lose. T h e r e are battles that w e have h a d to fight that w e s h o u l d not have to fight. It is the responsibility o f the g o v e r n m e n t that they are not t a k i n g u p . " M r . T expressed various concerns i n regards to wait lists, insufficient transportation means, inadequate services i n terms o f content a n d quantity, u n c o o r d i n a t e d and inconsistent services. H e e x c l a i m s , "So it has been a lot o f w o r k w e s h o u l d not h a v e to d o . W e h a v e h a d to fight a n d fight to get what w e need. I think that w e expected it to b e difficult, but w e d i d not expect that w e w o u l d have to put forth so m u c h energy to get what w e needed."  M r . T has b e e n i m p r e s s e d w i t h the s c h o o l system here i n s o m e w a y s , but v e r y d i s a p p o i n t e d i n other aspects. T o illustrate, he disagreed w i t h the present s y s t e m w h e r e b y a c h i l d at the age o f six years arrives i n the c l a s s r o o m a n d has a teacher say, "there is s o m e t h i n g w r o n g w i t h this c h i l d . " H e contended that "It takes far too l o n g to get a d i a g n o s i s at that p o i n t to help that c h i l d i n that first year, so that c h i l d w i l l suffer a n d so w i l l the other thirty c h i l d r e n . "  61  M r . T was also v e r y disappointed w i t h the f o r m a l support s y s t e m here. H e p r o c l a i m e d , " Y o u cannot help a c h i l d w i t h autism b y sticking t h e m i n a corner. Y o u h a v e to w o r k w i t h t h e m o n a regular basis, a n d it is not just the c h i l d that needs the h e l p . " W i t h o u t doubt, he is disgruntled w i t h the present system, a n d sees r o o m for i m p r o v e m e n t . T h e present support system is not meeting his needs n o r his c h i l d ' s needs. H e e x p l a i n e d , " W e h a v e significant b e h a v i o r a l p r o b l e m s that w e h a v e to deal w i t h as a f a m i l y , a n d those n e e d to be addressed as soon as possible. T h e M i n i s t r y said, ' W e l l , w e don't have a n y resources', a n d that is not satisfactory, but that is the answer w e are getting." H e further e x p l a i n e d , " T h e situation is m a d e worse because there seems to be a l l these groups that s e e m to be p r o v i d i n g service, but i n reality they are d o i n g a little bit rather than one group d e a l i n g w i t h the w h o l e thing. W e w o u l d c o p e better i f our c h i l d r e n ' s needs were seen to." H e questioned the t i m i n g o f his d e c i s i o n to m o v e to C a n a d a . H e stated, "It's unfortunate that w e c a m e w h e n w e d i d . B a s i c a l l y what w e c a m e to is...the w h o l e t h i n g is c h a n g i n g . . . W e don't k n o w what w e c a n g i v e y o u , we don't k n o w what w e s h o u l d be giving you." M r . T shared a story where he felt bitter a n d angry towards a l o c a l p o l i t i c i a n . H e d e s c r i b e d her as b e i n g " A w o n d e r f u l w o m a n I a m sure, but cannot o r g a n i z e a d r i n k i n g session i n a b r e w e r y ! " B e i n g a c o n c e r n e d parent w h o is i n need o f m o r e service, he attended a M i n i s t r y presentation i n F e b r u a r y w h i c h was intended to i n f o r m p e o p l e o f the c h a n g e i n the M i n i s t r y ' s p o l i c i e s . H e felt that the p o l i t i c i a n d e c e i v e d the audience at the m e e t i n g , a n d he questioned her personal integrity, "Instead o f b e i n g up front a n d s a y i n g , this is what w e want to a c c o m p l i s h - H e l p us m a k e it h a p p e n - S h e just stood up there a n d  62  said, I h a v e n o t h i n g to defend. It's not m y fault, but I a m defending an e m p t y shell. It was c o m p l e t e l y the w r o n g idea, a n d instead o f getting up there a n d s a y i n g o n A p r i l 1st, e v e r y b o d y w i l l see a continuity o f their positions w h i l e c h a n g i n g the boards, w e w i l l m a n a g e the d e l i v e r y o f the contracts i n this w a y . T h e r e was no c o o r d i n a t e d p l a n presented..." H e c o n t i n u e d , " Y o u can't get up i n front o f people a n d say the same t h i n g that y o u said before, a n d expect the audience to accept it. Y o u have to present s o m e t h i n g that said that w e have m o v e d o n , that said, we are under c o n t r o l . "  M r . T was v e r y disappointed b y the l e v e l a n d quality o f service that he was r e c e i v i n g here i n C a n a d a . H e described the present system as not b e i n g one that adequately deals w i t h c h i l d r e n w i t h special needs, rather it is a self-serving one. " C h i l d r e n w i t h special needs are just... the o n l y special needs are for A b o r i g i n a l s , or the poor...It just does not s e e m to be a general focus o n c h i l d r e n w i t h disabilities. T h e r e is a focus o n what gets the government i n trouble not o n what does m y c h i l d need." H e e x p l a i n e d that " T h e y are not interested i n c h i l d r e n and adults w h o have special needs w h o are not a bother to a n y o n e else." M r . and M r s . T f o u n d the current s y s t e m to be l u d i c r o u s . H e has b e e n seeking h e l p since he arrived from the ' A t H o m e ' P r o g r a m , a n d his requests for supports i n the h o m e are consistently d e n i e d due to insufficient f u n d i n g w i t h i n the C o m m u n i t y L i v i n g a r m o f the M i n i s t r y for C h i l d r e n and F a m i l i e s . H e suggested that a c h a n g e i n the s y s t e m w o u l d be b o t h cost effective a n d m o r e h u m a n e i f adequate h o m e supports w e r e p r o v i d e d for l o v i n g a n d c a r i n g families like themselves.  H e d e s c r i b e d the responsibilities o f c a r i n g for a c h i l d w i t h autism as b e i n g i m m e n s e , a n d the burdens are too m u c h for a f a m i l y to bear. H e w i s h e d that the s y s t e m was m o r e integrated, accountable and organized. H e e x c l a i m e d , " W e have to anticipate  63  for her a l l the time, but no one outside o f this f a m i l y bothers to do it. I n e e d s o m e o n e f r o m the M i n i s t r y to sit i n this chair a n d tell us h o w this is g o i n g to be organized...I n e e d a project organizer i n the m i n i s t r y to sit i n m y house and organize it for m e . " H e expressed his frustration a r o u n d a pressing c o n c e r n at the m o m e n t . M r . T is b o m b a r d e d w i t h significant b e h a v i o r p r o b l e m s each day. H e is v e r y c o n c e r n e d that his oldest c h i l d w i t h autism, w h o is a large g i r l , is g o i n g to seriously hurt the y o u n g e r , a n d m u c h s m a l l e r one. " W e are v e r y c o n c e r n e d that Samantha is g o i n g to seriously h a r m Susan. I have t o l d every single p e r s o n that this p r o b l e m exists, a n d I have not h a d one single p e r s o n c a l l m e b a c k s a y i n g that w e have put this i n place to try a n d help. N o b o d y has heard us!" M r . T was v e r y c o n c e r n e d about the m o n e y that he is forced to spend. " I spend $ 1 7 0 . 0 0 / m o n t h o n nappies for m y seven year o l d , and the M i n i s t r y said this is n o r m a l ! It is r i d i c u l o u s that I cannot get that b a c k i n some f o r m o f credit whatever w a y . " S e c o n d l y , i n spite o f the serious safety concerns o f h a v i n g to w a l k across two v e r y b u s y h i g h w a y s to get his c h i l d r e n to s c h o o l , he c o m p l a i n e d that he cannot afford a second car. T h i r d l y , he c o m p l a i n e d about h o w his m o n e y is spent. "I c a n spend $10,000.00 a n d b r i n g s o m e b o d y i n here to w o r k w i t h m y c h i l d for one week. A t the end o f the week, the p e r s o n w i l l k n o w s o m e t h i n g about m y w o r k i n g w i t h m y daughter. T h e p r o b l e m is, I w i l l then have to s p e n d another $10,000.00 for another support w o r k e r next time. W h a t I n e e d is s o m e w a y o f getting regular intermittent support to deal w i t h the specific p r o b l e m s that I a m h a v i n g with m y child." M r . T talked about h o w expensive it is and compares the system to his system at h o m e . "In this c o u n t r y right n o w , y o u c a n be sick for free, a n d y o u have to p a y to get  64  w e l l . In E n g l a n d , before w e c a m e o v e r here, it was free to be t o l d y o u w e r e s i c k a n d it cost the same amount n o matter what the costs o f the drugs, to get w e l l . It costs 5 p o u n d s thirty to get w e l l . In this country, it costs whatever the drugs cost. It doesn't matter i f the g o v e r n m e n t g i v e s it b a c k to y o u later. It costs  $10,000.00 to  get w e l l . It is the same  a p p r o a c h w i t h m y daughter...It is after the fact that y o u get y o u r m o n e y back. S p e n d it u p front. W e l l , I can't spend it up front. I don't have the f l e x i b i l i t y to spend it up front. It is o n m e to sort it out." A s w e l l , he e x p l a i n e d , "there is no consideration i n this p r o v i n c e for L o v a a s or A B A techniques. It w a s recently i n the S u n about a w o m a n w h o h a d to g i v e up t w o R e g i s t e r e d R e t i r e m e n t S a v i n g s Plans to p a y for A . B . A . help for her c h i l d . T h a t is ludicrous!"  T i m e is a v a l u a b l e c o m m o d i t y i n their h o m e . O n one l e v e l , he accepted the fact  that there is little time for themselves. O n another level, one c a n easily sense his  frustration, disappointment, a n d feelings o f guilt w h e n he stated " A s far as t i m e f o r  ourselves, w e m a k e what w e can. W e spend time together every m o r n i n g a n d e v e n i n g . "  " A s a f a m i l y , w e don't do anything together. W e can't take the k i d s anywhere together."  " T h e p e r s o n it really hurts is m y oldest daughter w h o gets about one tenth o f our  attention. S h e is left out i n the c o l d i n terms o f time f r o m either o f us." It is clear that  there are not e n o u g h hours i n the d a y to a c c o m m o d a t e all the tasks and needs o f  everyone.  G e n e r a l l y speaking, he is v e r y pleased w i t h the quality o f care p r o v i d e d b y respite  care; h o w e v e r , he c o m p l a i n e d that the quantity remains to be scanty. H e expressed great  a p p r e c i a t i o n for the respite care workers that they have c o m i n g i n .  65  In terms o f l i v i n g a ' n o r m a l ' life, they appear to feel trapped, frustrated, a n d helpless. H e stated, "It has b e e n m o r e w o r k to get things o r g a n i z e d . " M r . T w i s h e d that they c o u l d go a w a y o n vacations a n d trips, but cannot due to the extent o f o r g a n i z a t i o n that needs to be d o n e a n d the n u m e r o u s safety concerns. S o m e t i m e s he w i s h e d that he c o u l d do things w i t h his f a m i l y that other n o r m a l families do. H i s w i f e said every once i n a w h i l e that " M a y b e w e s h o u l d take t h e m (the children) c a m p i n g , because it seems l i k e s u c h a w o n d e r f u l t h i n g to do i n the s u m m e r w i t h k i d s , " but it frightened b o t h o f t h e m to t h i n k about S a m a n t h a w a k i n g up i n the m i d d l e o f the night i n a tent." It s e e m e d that e v e r y t h i n g is a b i g ordeal, u n l i k e the experiences e n j o y e d b y other t y p i c a l families.  66  Chapter V Discussion T h i s chapter deals w i t h the findings o f the interviews. In this analysis, w h e n I refer to parents, I refer to the participants i n m y study. It is clear f r o m the case portraits that the i m m i g r a n t parents caring for their c h i l d r e n w i t h autism d i s c u s s e d a diverse set o f experiences. A l l three families h a d contextual similarities i n that they h a d recently i m m i g r a t e d to C a n a d a , and i n two cases, the parents were c a r i n g for two c h i l d r e n w i t h autism. A l l fathers w e r e e m p l o y e d b y an outside agency to p r o v i d e f i n a n c i a l support for their f a m i l i e s , a n d a l l mothers were the p r i m a r y care givers and all r e c e i v e d h e l p at h o m e f r o m their partners. I n spite o f these contextual similarities, the differences i n terms o f b a c k g r o u n d s , parents a b i l i t y to speak E n g l i s h , severity o f autism, manifestations o f the c h i l d w i t h autism's b e h a v i o r , birth order, gender, e c o n o m i c circumstances, and spiritual orientations b e t w e e n these families s h o u l d be studied i n their o w n light. I was surprised to d i s c o v e r the c o m m o n themes shared b y all three families. B e f o r e an investigation into the c o m m o n patterns shared b y all three families are discussed, m y i m p r e s s i o n s o f the interviews w i l l be informative. T h e Interviews S u r p r i s i n g l y , g i v e n that p e o p l e tend to talk about things they m i s s , these parents w h o recently m o v e d to C a n a d a were w i l l i n g to talk about their present a n d future situations m o r e r e a d i l y than their pasts. In these cases, perhaps b e i n g the p r o b l e m solvers that they are, they are solution focused, and see little value i n l o o k i n g b a c k . It is interesting to note that M r . and M r s . T speak E n g l i s h as their first language. C o n s e q u e n t l y , a language barrier does not hinder their abilities to m a n i p u l a t e the systems  67  a r o u n d t h e m . C o m p a r e d to the other t w o families, they appear to be i n a stronger p o s i t i o n to a c t i v e l y support their c h i l d r e n , as their anecdotes reflect a d v o c a c y .  T h e p r i m a r y subject matter o f the interviews related to c h i l d rearing; adjustment to a n e w e n v i r o n m e n t w a s secondary. T h e tendency to discuss autism m o r e than i m m i g r a t i o n m a y h a v e b e e n i n f l u e n c e d b y the format o f the interview. B o t h issues p l a y e d a role i n their experiences. H o w e v e r , the different b a c k g r o u n d s a n d i m m i g r a t i o n experiences w e r e not p r e d o m i n a n t i n their stories. T h e parents' t i m e w a s o c c u p i e d b y a range o f d a i l y tasks a n d responsibilities necessary i n raising a c h i l d w i t h autism. C o n s e q u e n t l y , they do not have the time to d w e l l o n i m m i g r a t i o n issues. In fact, I suspect that their story patterns w o u l d be v e r y s i m i l a r to those expressed b y C a n a d i a n families.  T h e unstructured interviews i n themselves were enlightening i n that the parents d i s c l o s e d a significant amount o f i n f o r m a t i o n i n a relatively short time span, and there were few probes f r o m m e . O f t e n a single question resulted i n a lengthy oration. T h e stories f l o w e d freely. F e e l i n g s o f frustration, sadness, anger, resentment, a n d fear w e r e r e a d i l y r e v e a l e d i n the interviews. It seemed that these parents do not get the o p p o r t u n i t y to share their experiences i n c a r i n g for their c h i l d w i t h autism w i t h another adult v e r y often. H e n c e , they e m b r a c e d this opportunity.  Interviews i n their h o m e s h a d distinct advantages: Parents were i n their h o m e e n v i r o n m e n t , a n d m a n y situations o c c u r r e d w i t h i n the interviews w h i c h p r o m p t e d d i s c u s s i o n about s o m e pressing i m m e d i a t e issues. A s w e l l , m y time spent w i t h t h e m g a v e m e a first h a n d v i e w o f their d e m a n d i n g c h i l d rearing schedules.  A l l parents tolerated a h i g h level o f activity d u r i n g our interview sessions. In the short time that I w a s i n their h o m e s w e were constantly interrupted b y each c h i l d for  68  v a r i o u s reasons. In the span o f two hours, M r . T c h a n g e d his seven year o l d c h i l d ' s diaper, engaged i n an argument o v e r s a y i n g "no" to feeding his insistent five year o l d i c e c r e a m for l u n c h , fed cheerios to his five year o l d in-between meals, intervened i n a dispute b e t w e e n his eldest c h i l d a n d m i d d l e c h i l d w i t h autism, and u n t a n g l e d f r o m a b u s h a s p o o l o f dental floss w h i c h h a d b e e n t h r o w n out a w i n d o w i n his h o m e . M r s . P c h a n g e d two diapers; fed her youngest c h i l d a bottle; c o m f o r t e d two c h i l d r e n w i t h temper tantrums; attempted to p a c i f y her ten m o n t h o l d c h i l d w i t h hugs; and consistently got u p to her autistic b o y o f f counters, shelves, a n d tables. M r s . K a n d I were interrupted every few m o m e n t s b y her c h i l d w h o increased the v o l u m e o n the television. A s w e l l , i n order to a v o i d confrontation, she permitted her autistic s o n to eat eight p o p s i c l e s o n his o w n a c c o r d d u r i n g the span o f a single interview.  T h e Relationships It s e e m e d that i m m i g r a n t parents c a r i n g for a c h i l d w i t h autism were not o n l y faced w i t h the demands o f r a i s i n g a c h i l d w i t h autism; as w e l l , they were b e i n g i n f l u e n c e d and shaped b y a n e w environment and are b o m b a r d e d b y interrelated forces and n e w relationships all a r o u n d them. In these o p e n ended narrative interviews, the parents talked about their experiences. R e l a t i o n s h i p s a n d interrelationships are difficult processes to define, describe, and understand. H o w e v e r , patterns, trends a n d tendencies p r o v i d e h e l p f u l clues for understanding, supporting, and r e c o g n i z i n g the v a r i e d experiences o f i m m i g r a n t parents (Jensen, 1992). H e n c e , i n this d i s c u s s i o n , a focus o n their relationships w i t h i n the f a m i l y and interactions w i t h others seems pertinent.  T h e s e accounts depicted the variations o f w a y s o f w h i c h c h i l d r e n w i t h autism related to the w o r l d . T o illustrate, M r . K described his c h i l d as b e i n g , " h i g h f u n c t i o n i n g -  69  a c a d e m i c a l l y able - w h o experiences social difficulties". M r s . P described one o f her c h i l d r e n , "I really want to talk to her...really talk, but y o u can't do that, but n o w she has i m p r o v e d a lot, a n d she is really smart i n s o m e ways. She c a n do things. S h e c a n draw, she has g o o d v o c a b u l a r y , and she c a n speak E n g l i s h n o w . " M r . T described one o f his c h i l d r e n , " S h e has a n I.Q. that is c o m p a r a b l e to any c h i l d her age. S h e has no m e n t a l retardation as far as w e c a n see. She has a c o m m u n i c a t i o n p r o b l e m . " T h e s e parents' descriptions o f their c h i l d w i t h autism illustrate the variations o f their c h i l d r e n ' s w a y s o f relating to the w o r l d .  N o t s u r p r i s i n g l y , the case portraits suggested that the f o c a l p o i n t o f the participants was their c h i l d w i t h autism. T h e p r i m a r y relationship w i t h the c h i l d w i t h autism was different from other relationships i n that autism is a life l o n g disability. T h e c h i l d has i m p a i r e d c o m m u n i c a t i o n skills; i m p a i r e d social relationships; a n d abnormalities i n speech, language, a n d c o m m u n i c a t i o n . D u e to these factors, establishing a relationship w i t h a c h i l d w i t h autism often requires m o r e energy, a n d it is the m o s t p o w e r f u l a n d e n d u r i n g relationship o f a l l .  M o s t o f the relationships outside the f a m i l y unit h a d s o m e relationship to the p r i m a r y relationship o f the i m m i g r a n t parents a n d their c h i l d r e n w i t h autism. A s parents w o r k e d hard to teach their c h i l d r e n a n d m a k e t h e m feel integrated a n d part o f the w o r l d , the c h i l d r e n w i t h autism, g i v e n their c o n d i t i o n , felt apart; they felt isolated from their families a n d the c o m m u n i t i e s o f w h i c h the families were w o r k i n g h a r d to be a part. T h e disengaged c h i l d w i t h autism r e m a i n e d autonomous and segregated. In s o m e w a y s , the segregation c a n be l o o k e d at as a rigid b o u n d a r y that exists between the c h i l d w i t h a u t i s m and the rest o f the w o r l d . T h e term 'enmeshment' o n the other h a n d , c a n characterize the  extreme a m o u n t o f e m o t i o n a l closeness and demands for l o y a l t y a n d closeness i n these i m m i g r a n t families l i v i n g w i t h autism ( B e c v a r & B e c v a r , 1996). D u e to the d e m a n d s o n t h e m , there was a l a c k o f personal separateness, time, a n d space. In m a n y w a y s , the i n d i v i d u a l b o u n d a r i e s o f the parents were blurred as m a n y parents d i d not h a v e the l u x u r y o f d e v e l o p i n g a coherent sense o f self-distinctive f r o m the all e n c o m p a s s i n g f a m i l y role expectations. In order to integrate their c h i l d r e n w i t h autism, parents d e p e n d e d o n their i n t r a - f a m i l i a l strengths and systems outside the f a m i l y for the support a n d nurturance they n e e d e d a n d desired.  T h e relationships that parents h a d w i t h their c h i l d r e n w i t h autism w e r e all e n c o m p a s s i n g . It was clear i n the interviews that these parents w o u l d suffer for their c h i l d r e n , a n d they w a n t e d n o t h i n g m o r e than for their c h i l d r e n to l e a d n o r m a l a n d h a p p y lives. E v e r y f a m i l y m a d e significant c o m p r o m i s e s i n the n a m e o f their c h i l d r e n . A t least one parent i n each f a m i l y gave up desirable e m p l o y m e n t or a p r o m o t i o n i n their h o m e countries; all left their friends a n d families i n hopes o f f i n d i n g a m o r e c o n d u c i v e e n v i r o n m e n t for the d e v e l o p m e n t o f their c h i l d r e n . Indeed, parents have sacrificed significantly i n all d o m a i n s i n order to fulfill their children's needs. M r . K ' s statement sums it u p , "Parents w i t h autism s h o u l d sacrifice their lives for their c h i l d . "  I n t r a - F a m i l i a l Strengths  U n i q u e qualities a n d different c o m b i n a t i o n s o f intra-familial strengths w e r e apparent i n 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, I n f o r m a t i o n S h a r i n g , a n d C o p i n g / R e s o u r c e M o b i l i z a t i o n ( D e a l , T r i v e t t e & D u n s t , 1988) a n d E x t r a - F a m i l i a l Relationships. It is important to note that these f a m i l y themes w e r e p r i m a r i l y interpersonal and intra-familial i n that they o c c u r r e d w i t h i n the  71  f a m i l y unit. T h e s e strengths influence each relationship i n s o m e w a y w i t h i n the f a m i l y unit, a n d are s i m u l t a n e o u s l y i n f l u e n c e d b y forces outside the f a m i l y unit ( D e a l , T r i v e t t e & D u n s t , 1988). F a m i l y Identity  F i v e relevant themes were apparent i n all three families i n terms o f F a m i l y Identity. T h e y i n c l u d e c o m m i t m e n t , appreciation, allocation o f time, sense o f p u r p o s e , and congruence. C o m m i t m e n t . T o b e g i n , all families demonstrated c o m m i t m e n t towards p r o m o t i n g the w e l l - b e i n g a n d d e v e l o p m e n t o f their c h i l d w i t h autism. T h i s is e v i d e n c e d b y their m u t u a l d e c i s i o n to m o v e to C a n a d a i n hopes o f a m o r e suitable lifestyle. In order to help their c h i l d , the parents reported that they have m a d e n u m e r o u s sacrifices a n d w e r e absolutely d e v o t e d to their cause. M r . K stated, "Parents w i t h c h i l d r e n w i t h autism s h o u l d sacrifice their lives for their c h i l d . " M r s . P p r o c l a i m e d , " M y c h i l d r e n are m y p r i o r i t y . " M r . T asserted, " A l l this is secondary to the k i d s . "  T h e s e parents are dedicated,  obligated, a n d unselfish o n their quest to help their c h i l d r e n . A p p r e c i a t i o n . I n o t i c e d that all parents expressed a deep appreciation for one another a n d e n c o u r a g e d each other to do better i n all areas o f their lives. T o illustrate, M r . T was v e r y p r o u d o f his w i f e ' s a c c o m p l i s h m e n t s "before k i d s . " A s w e l l , o n the w a y out, he a c k n o w l e d g e d the beautiful h a n g i n g baskets that his w i f e m a d e . M r . K s e e m e d p r o u d that his w i f e was i n g o o d p h y s i c a l shape a n d took the time to w o r k out. M r . P w a s p r o u d o f his w i f e ' s skills i n c o m p u t e r software, and encouraged her to enhance these skills here i n C a n a d a . A s w e l l , they gave credit w h e n credit was due b o t h i n s i d e a n d outside the f a m i l y unit. T h e s e families expressed a true appreciation for those p e o p l e i n  72  the f i e l d w h o p r o v i d e d practical, l o n g term understanding and support o v e r the years without j u d g m e n t a n d w h o h a d h e l p e d s o l v e m a n y o f the challenges that they were f a c e d w i t h . Stories about h e l p f u l people i n their countries o f o r i g i n and i n C a n a d a were pertinent. F i n a l l y , they took time to appreciate the s i m p l e j o y s i n life. T o illustrate, M r s . T l o v e d to garden. In spite o f the time constraints, she f o u n d time to cultivate her h a n g i n g baskets. M r . a n d M r s . K talked about the beauty o f the mountains a n d the natural beauty o f B r i t i s h C o l u m b i a . M r s . P described the beauty o f d o w n t o w n V a n c o u v e r , " W e saw the beautiful m o u n t a i n s a n d C a n a d a P l a c e . "  It was interesting to note that the fathers took great care o f the mothers. T h e y h e l d their w i v e s i n h i g h regard a n d exhibited great adoration. In various w a y s , they a l l s h o w e d their l o v e a n d respect. F o r example, i n all the interviews, the Fathers m e n t i o n e d h o w h a r d their w i v e s w o r k e d , a n d all took appropriate actions to alleviate s o m e d e m a n d s o f their o v e r w h e l m i n g w o r k responsibilities. T h a t is, all the Fathers participated i n d a i l y h o u s e h o l d chores a n d w o r k e d irregular hours i n order to a c c o m m o d a t e their w i v e s a n d families.  A s w e l l , their c h i l d r e n w i t h autism r e c e i v e d utmost respect. T h e y c o n t i n u o u s l y strove to g i v e their c h i l d r e n the sense that they respected their i n d i v i d u a l i t y , a n d they h a d rights a n d abilities. T h e i r stories i m p l i e d that their c h i l d r e n were always heard, appreciated, a n d respected. A s w e l l , their d e v o t i o n was evident throughout the interviews.  A l l o c a t i o n o f time. T h e allocation o f time was a relevant theme i n all three f a m i l i e s . It was v e r y clear that every c h i l d w i t h autism requires twenty- four hours a d a y care. T h e responsibilities i n v o l v e d i n raising a c h i l d w i t h autism are c u m b e r s o m e , and rest p r i m a r i l y o n the f a m i l y . A lot o f their time appeared to be o c c u p i e d b y the d a y to d a y care o f their c h i l d w i t h autism w h i c h i n c l u d e d feeding, bathing, c h a n g i n g diapers,  73  d i s c i p l i n i n g , a n d generally protecting them. M r s . P explained, " T h e y can't talk, they aren't toilet trained, n o matter h o w h a r d I try to teach t h e m , they are slow, h y p e r a c t i v e . . . a l l these things just eat up y o u r time t r y i n g to take care o f t h e m . " In a l l three cases, doors h a d to b e l o c k e d i n order to protect their c h i l d r e n w i t h autism f r o m i n j u r i n g themselves; constant surveillance was required at a l l times. T h e r e s e e m e d to b e n o t i m e to relax. E v e n w h e n the c h i l d r e n were at s c h o o l , parents w o r r i e d about their c h i l d . S o m e stated that they kept their c e l l p h o n e o n at a l l times. T h e s e parents e n j o y e d the t i m e they spent together i n spite o f the difficulties whether it be at the p l a y g r o u n d , i n the m a l l , or trips d o w n t o w n . A l l parents seemed frustrated about the scarcity o f time spent together as a c o u p l e . M o r e o v e r , they w i s h e d that they c o u l d d o m o r e activities as a w h o l e f a m i l y l i k e a n o r m a l f a m i l y w o u l d . T h e l a c k o f f a m i l y activities seemed to be a cause for disappointment a n d frustration for a l l parents. G e n e r a l l y speaking, a l l three families s e e m e d to h a v e m o r e t i m e for e a c h other i n C a n a d a c o m p a r e d to their countries o f o r i g i n . S o m e expressed that they have m o r e time w i t h one another here i n V a n c o u v e r ; h o w e v e r , this t i m e is spent i n the h o m e . D u e to inadequate childcare, they d i d not have the o p p o r t u n i t y to g o out together. N o n e o f the couples reported that they h a d time for each other.  Sense o f purpose. T h e sense o f purpose for a l l three f a m i l i e s w a s a d r i v e to m a k e their c h i l d r e n as n o r m a l as possible. T h e y all exhibited an o v e r w h e l m i n g sense o f responsibility. T h a t is, each parent demonstrated a deep caring for their c h i l d a n d h a d a n expectation that their c h i l d w i t h autism b e accepted a n d l o v e d as a p e r s o n . E a c h parent sought integration into society for their c h i l d r e n w i t h special needs. Indeed, this sense was  strong i n a l l three families w h i c h seem to give t h e m h o p e a n d m o m e n t u m r e q u i r e d  74  to get t h e m t h r o u g h the trials i n their j o u r n e y . O n another level, all parents seemed upset that there was not a clear s o l u t i o n to their c h i l d r e n ' s c o n d i t i o n . M o r e than a n y t h i n g else, they w a n t e d their c h i l d r e n to reach their o p t i m u m potentials, a n d they h o p e d that their c h i l d w o u l d h a v e r i c h opportunities i n the future. T h e y all expressed c o n c e r n about their c h i l d ' s a b i l i t y to relate s o c i a l l y to people, however, they expressed p r i d e i n their i n d i v i d u a l strengths.  C o n g r u e n c e . A l l parents demonstrated congruence r e g a r d i n g the i m p o r t a n c e o f a s s i g n i n g t i m e a n d energy to meet their needs. E a c h parent h a d to m a k e c o m p r o m i s e s i n order to f u n c t i o n as a f a m i l y . B o t h parents were i n h a r m o n y a n d demonstrated affirmative action i n t r y i n g to meet their needs. T h e y were l i k e - m i n d e d and they w o r k e d together. F o r the m o s t part, parenting styles were similar. T h e y m u t u a l l y supported and a c c o m m o d a t e d one another i n order to p r o v i d e an appropriate balance o f firmness a n d nurturance for their c h i l d r e n w i t h autism. A l s o , i n every f a m i l y , the m o t h e r h a d the m a j o r care-taking role o f s u p e r v i s i n g , initiating, and o r g a n i z i n g activities a r o u n d the h o m e . In all three h o m e s , the fathers have adopted m a n y c h i l d care responsibilities o n top o f b e i n g the sole f i n a n c i a l p r o v i d e r s i n the f a m i l y . I noticed that the parental relationship was v e r y strong. T h e m o v e to a n e w country seemed to have strengthened the parental s u b s y s t e m a n d s e e m e d to h a v e enhanced the intensity o f the relationship w i t h one another. M r . K ' s statement sums it u p , " O u r relationship has b e c o m e better a n d better (here i n C a n a d a ) because the o n l y p e r s o n that w e c a n r e l y o n is each other." It s e e m e d that the c o m m o n stress factor for b o t h mothers and fathers o f c h i l d r e n w i t h autism was their care g i v i n g responsibilities. A l t h o u g h the constant and persistent amount o f care that was r e q u i r e d w h e n k e e p i n g a f a m i l y m e m b e r w i t h autism i n the h o m e is d r a i n i n g a n d exhausting, it  75  s e e m e d to keep the parental unit i n s y n c h r o n y . T h e y d i d not have time to d w e l l or drift  apart f r o m each other. Indeed, the parents were i n true alliance w i t h 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 t h i n k that w e b e c a m e closer (in C a n a d a ) . W e understood each other. I h a v e n o t i m e to e n j o y m y s e l f a n d he too... I m e a n , it's just us here., . n o b o d y else." A l t h o u g h c o m p r o m i s e s h a d to be m a d e , they w o r k e d together as a team. D u r i n g every interview, the c h i l d r e n w i t h autism p l a c e d m a n y demands o n the parents. E v e n i n these stressful m o m e n t s , the parents d i d not order, direct, argue or c o m m a n d . N o r d i d they j u d g e , criticize, disagree, or b l a m e . Rather, parents c o n t i n u e d to praise, agree w i t h , a n d p o s i t i v e l y evaluate their c h i l d r e n . A s w e l l , they reassured, s y m p a t h i z e d w i t h , c o n s o l e d and supported their c h i l d r e n . E a c h f a m i l y was a cohesive and headstrong t e a m p u l l i n g together i n the face o f n u m e r o u s obstacles. Information Sharing  T h e I n f o r m a t i o n S h a r i n g category refers to two aspects o f f a m i l y strengths. C o m m u n i c a t i o n a m o n g f a m i l y m e m b e r s i n a w a y that emphasizes p o s i t i v e interactions is one important aspect. T h e other refers to rules and values that establish expectations about acceptable a n d desired behavior.  C o m m u n i c a t i o n . T h e parents seemed to have excellent c o m m u n i c a t i o n w i t h one another a n d w i t h m e . T o b e g i n , b o t h parents were able to l o o k at the w o r l d t h r o u g h their spouse's frame o f reference a n d understand what his/her w o r l d was like. In the interview, they c o m m u n i c a t e d his/her understanding to one another i n a w a y that demonstrated a n u n d e r s t a n d i n g o f their spouse's feelings. A s w e l l , b o t h spouses expressed deep respect for  76  one another. T h i s was demonstrated i n b o t h active and passive w a y s i n their stories a n d i n the present d u r i n g the interview. T h i r d l y , the couples demonstrated w a r m t h towards one another p r i m a r i l y t h r o u g h n o n - v e r b a l means such as smiles, touches, and hugs, w h i c h reflects a c o n c e r n a n d deep respect for one another. F i n a l l y , I was v e r y i m p r e s s e d w i t h the l e v e l o f genuineness i n our interviews as they seemed to feel comfortable. A s w e l l , their b o d y orientation, posture, gestures, facial expressions, v o i c e , a n d their w i l l i n g n e s s to share their v a l u a b l e time w i t h m e h a d a spontaneous and defenseless air. A l t h o u g h I d i d not p r o b e or question, they d i d not w i t h d r a w , distract, or divert a w a y f r o m sensitive issues i n their lives. T h e i r efforts to c o m m u n i c a t e w i t h agencies i n the c o m m u n i t y were evident i n all three families also. B e c a u s e they relied o n the outside agencies to assist t h e m i n v a r i o u s w a y s , they a l l m a d e an effort to p l u g themselves i n . In s o m e cases, parents have h a d to fight i n order to get their needs met b y means o f letters, t a l k i n g to p e o p l e i n charge, a n d i n f o r m i n g different h e l p i n g organizations o f their present situations. B e i n g that the exchange o f i n f o r m a t i o n and effective c o m m u n i c a t i o n skills are c o n s i d e r e d to b e essential characteristics o f w e l l - f u n c t i o n i n g systems, their ability to articulate their thoughts a n d listen to other people's ideas was a strength evident i n all o f the three families. R u l e s a n d v a l u e systems. T h e s e families appeared to have s i m i l a r rules a n d v a l u e systems. T o b e g i n , c o m m o n f a m i l y values dictated that parents m o n i t o r e d the i n f o r m a t i o n they shared w i t h m e . F o r example, acceptance into the c o m m u n i t y w a s important for a l l three families. C o n s e q u e n t l y , the i n f o r m a t i o n that they chose to share w i t h m e h a d a p o l i t e a n d accepting tone i n light o f their drive to be accepted. M r . K expressed w o r r y  about the confidentiality o f the study. M r . T c o n t i n u o u s l y interrupted h i m s e l f a n d said, " T h e r e are m a n y things that are g o i n g right too," and then c o n t i n u e d to express his frustrations. In a l l three cases, the maintenance o f f a m i l y identities i n v o l v e d a process i n w h i c h the s y s t e m boundaries screened i n f o r m a t i o n c o m i n g i n a n d out o f the f a m i l y systems d e p e n d i n g o n f a m i l y values ( B e c v a r & B e c v a r , 1996). C o p i n g / Resource Mobilization  T h e C o p i n g / R e s o u r c e M o b i l i z a t i o n category refers to five aspects o f f a m i l y strengths. T h e y i n c l u d e , c o p i n g strategies, p r o b l e m s o l v i n g abilities, o p t i m i s m , f l e x i b i l i t y , adaptability, and balance (Dunst, Trivette, & D e a l , 1988). C o p i n g strategies. A l l families exhibited various c o p i n g strategies that p r o m o t e d p o s i t i v e f u n c t i o n i n g i n d e a l i n g w i t h both the n o r m a t i v e and n o n - n o r m a t i v e life events. In s o m e cases, they read n o v e l s , s o m e exercised, a n d others vented b y v o i c i n g their concerns to p e o p l e i n p o w e r . A l l parents c o p e d i n different w a y s w i t h the d e m a n d s o f every d a y l i v i n g .  P r o b l e m s o l v i n g abilities. T h e y all exhibited tremendous p r o b l e m s o l v i n g abilities p o r t r a y e d b y their ability to m o v e to a n e w country, learn a n e w language, f i n d suitable h o u s i n g , seek appropriate e m p l o y m e n t , m a k e n e w friends, find l o c a l schools, a n d p l u g into the social service network. E a c h task required organization a n d a m b i t i o n , a l l qualities that each f a m i l y possesses i n vast quantities. A s w e l l , it was clear that these parents w e r e the experts w h e n it came to c a r i n g for their c h i l d . E v e r y task was a p r o b l e m , a n d each parent a p p r o a c h e d it w i t h p r a g m a t i s m and inspiration. T h e y were all case managers a n d advocates for their c h i l d r e n w h i l e t r y i n g to m a k e sense o f their options i n their n e w country.  78  O p t i m i s m . O n e o f the most striking features i n these families l i v i n g w i t h a u t i s m was their u n d e n i a b l e ability to be optimistic and h o p e f u l i n the face o f s o m e adverse circumstances. T h e y were persistent and headstrong. In spite o f their c h i l d r e n s ' l e a r n i n g disabilities a n d difficulties relating to others, all parents h a d great o p t i m i s m for the future, a n d they b e l i e v e d that a n y t h i n g is i n the r e a l m o f possibility. T h e y b e l i e v e d i n their c h i l d r e n a n d all t o o k the time to read to t h e m , teach them n e w skills, and assist i n their language d e v e l o p m e n t . T h e y h o p e d that their c h i l d r e n w o u l d lead n o r m a l lives one day. A s w e l l , s o m e b e l i e v e d that they w o u l d eventually l a n d a desirable j o b i n the w o r k p l a c e here i n C a n a d a ; In t w o cases, the fathers b o l d l y accepted the c o m p r o m i s e s they w e r e f o r c e d to m a k e i n the e m p l o y m e n t sphere. B o t h accepted j o b s w h i c h they b e l i e v e to be o v e r q u a l i f i e d for. M r . P was an experienced government executive i n the P h i l i p p i n e s , a n d he t o o k a j o b as a night maintenance w o r k e r at M c D o n a l d s . H e was d i s a p p o i n t e d that his skills are not presently v a l u e d here i n C a n a d a , but believes that they w o u l d be one day. M r . K accepted a sales j o b w h i c h he too b e l i e v e d he is o v e r q u a l i f i e d for. B o t h p e o p l e w e r e w i l l i n g to endure the present unfortunate circumstances w i t h the expectation that they w o u l d l a n d better p a y i n g j o b s i n the future. Nonetheless, they all e x p e r i e n c e d h o p e for the future and the life that they were g o i n g to b u i l d for themselves i n C a n a d a . W i t h o u t doubt, o p t i m i s m alone c a n be v e r y e m p o w e r i n g . I was struck b y their sense o f o p t i m i s m a n d h o p e w h i c h w a s demonstrated i n their stories about their m o t h e r countries a n d \ i n V a n c o u v e r . T h e i r o p t i m i s m was present i n their quest to listen to all options, try n e w ideas, a n d m a i n t a i n a sense o f h u m o u r throughout the interviews .  F l e x i b i l i t y a n d adaptability. A l l parents demonstrated extensive degrees o f f l e x i b i l i t y a n d adaptability i n the roles necessary to procure resources to meet their needs. A l l three families appeared to be d e a l i n g w i t h the challenges o f c a r i n g for c h i l d r e n w i t h autism i n realistic a n d p r o d u c t i v e w a y s . Indeed, they were faced w i t h different obstacles d a i l y w h i c h r e q u i r e d them to alter the roles and rules w i t h i n the f a m i l y . T o illustrate, spouses arranged flexible w o r k schedules i n order to p r o v i d e direct c a r i n g to their c h i l d r e n . A h i g h amount o f personal sacrifice o n the part o f the parents was evident i n a l l the stories. M r . K e x p l a i n e d , "I was v e r y h a p p y i n S e o u l because I was p r o m i s e d m a n a g e m e n t there, but I wanted to take care o f m y f a m i l y , so I m o v e d here. I a m v e r y h a p p y n o w as I have the time to support m y f a m i l y right n o w . " M r . P talked about his m i x e d feelings i n g i v i n g up s o m e f a m i l y time, "I feel really b a d . I want to be w i t h t h e m . W h e n I w o r k e s p e c i a l l y l e a v i n g t h e m altogether at night." M r . T d e s c r i b e d his w i f e ' s expertise, " A l t h o u g h she is trained as a registered nurse, the o n l y e m p l o y m e n t that c a n a c c o m m o d a t e the h e a v y demands f r o m day to d a y is a paper route. S h e is n o w d e l i v e r i n g papers because that is all she has time or the wherewithal to d o . " T h e s e c o m p r o m i s e s were m a d e i n each f a m i l y i n the areas o f career limitations and f i n a n c i a l security.  A l l parents h a v e b e e n f o r c e d to m a k e c o m p r o m i s e s i n their s o c i a l life due to the d i f f i c u l t y i n f i n d i n g suitable c h i l d care arrangements. A l l parents m e n t i o n e d sleep d e p r i v a t i o n i n one f o r m or another, and s o m e h o w seem to carry o n w i t h their d a i l y tasks. In order to p r o v i d e inordinate amounts o f l o n g term c a r e - g i v i n g to their dependent c h i l d , all parents have h a d to m a k e c o m p r o m i s e s i n one f o r m or another.  T h e openness a n d 'closedness' o f each f a m i l y differed to s o m e extent to p e r s o n a l c i r c u m s t a n c e s a n d the n e e d for assistance. F o r example, the degree to w h i c h each s y s t e m  80  screened out or permitted new i n f o r m a t i o n varied. It seemed that the families a l l o w i n f o r m a t i o n a n d p e r m i t change as appropriate, w h i l e screening out i n f o r m a t i o n a n d a v o i d i n g changes that w o u l d threaten the s u r v i v a l o f the f a m i l y unit. F o r e x a m p l e , M r . and M r s . K appeared to be v e r y inquisitive and asked m e n u m e r o u s questions about the V a n c o u v e r S c h o o l S y s t e m , a n d h o w it dealt w i t h c h i l d r e n w i t h special needs. M r . T , o n the other h a n d , was m o r e j a d e d , and was not interested i n what I h a d to say i n the least. H i s c o m m e n t p o r t r a y e d his p o s i t i o n , " W i t h a l l due respect to yourself, I understand w h y y o u are here, but y o u s h o u l d not be. I m e a n to m e , y o u r b r i e f s h o u l d not be what is w i t h the service here, but what is right w i t h the other services i n other countries that w e s h o u l d be a p p l y i n g here..." H i s statement i m p l i e d that he is frustrated w i t h the p r o b l e m - f o c u s e d and ineffective systems a r o u n d h i m , a n d has no desire to hear yet another redundant o p i n i o n . M r . a n d M r s . P , b e i n g the most recent i m m i g r a n t s to C a n a d a , were still i n a reactive state, a n d were i n the process o f understanding the systems a r o u n d them. T h e y d i d not ask m e m a n y questions; however, they seemed enthusiastic and v e r y o p e n to m o r e i n f o r m a t i o n . D u e to the h e a v y c h i l d rearing demands p l a c e d o n the parental unit a n d n e e d for s u r v i v a l , every f a m i l y system required s o m e degree o f openness i n order to receive assistance f r o m the outside. A l l parents, b e i n g i m m i g r a n t s to C a n a d a , s e e m e d to be v e r y o p e n to the w a y s o f their n e w society and m a d e efforts to be assimilated b y their n e w society a n d to a c c o m m o d a t e certain customs a n d rules. T o illustrate, M r . a n d M r s . P questioned m e about C a n a d i a n law. T h e y p r o c l a i m e d , "In the P h i l i p p i n e s , w e sleep i n one r o o m . H e r e , it is against the law... Y o u have to separate the c h i l d r e n . " T h e y were sensitive to C a n a d i a n customs, a n d wanted to c o n f o r m i n as m a n y w a y s as they c o u l d . M r . P stated, "I a m t r y i n g to have C a n a d i a n friends. S o m e t i m e s I go b y m y s e l f a n d meet  81  C a n a d i a n friends. I f I don't do that, I w i l l o n l y h a n g around w i t h K o r e a n s . " M r . T ' s efforts to go out a n d m a k e new C a n a d i a n friends demonstrated his degree o f openness to the n e w culture i n w h i c h he lives.  B a l a n c e . It was apparent that each f a m i l y tried to m a i n t a i n a sense o f b a l a n c e i n their private w o r l d s . T h i s was a c h i e v e d b y the use o f b o t h intra- a n d e x t r a - f a m i l i a l resources for m e e t i n g their needs. In order to m a i n t a i n balance, a c o m b i n a t i o n o f their i n t r a - f a m i l i a l strengths c o m b i n e d w i t h extra-familial resources was critical. T h e recent arrival to C a n a d a a n d the inevitable adjustments c o m b i n e d w i t h the demands o f r a i s i n g a c h i l d w i t h autism left these families i n a state o f flux. It was a d y n a m i c process w h e r e b y e v e r y c o u p l e tapped their strength a n d courage to m a i n t a i n a functional f a m i l y system. In h o p e s to reduce the amount o f stress o n the f a m i l y unit, parents u t i l i z e d intra-, inter-, a n d extra-familial resources. Extra-Familial Relationships I m m i g r a n t parents u t i l i z e d n u m e r o u s extra-familial resources a n d s o c i a l support systems. T h e s e relationships were important to them. T o enhance their e m o t i o n a l , p h y s i c a l , i n f o r m a t i o n a l , instrumental, and material situations, the assistance p r o v i d e d b y others was essential to m a i n t a i n their health and w e l l b e i n g , p r o m o t e adaptations o f life events, a n d foster d e v e l o p m e n t i n an adaptive manner. E x t r a - f a m i l i a l resources i n c l u d e d the educational system, M i n i s t r y for C h i l d r e n and F a m i l i e s , A u t i s m S o c i e t y o f B . C . , finances, a n d an i n f o r m a l support network o f friends. T h e Education System  O n e p u b l i c enterprise w i t h w h i c h each f a m i l y h a d an integral, but not necessarily g o o d relationship, was the s c h o o l system. E a c h f a m i l y d e v e l o p e d a relationship w i t h the  82  p r i n c i p a l , the teacher, a n d i f necessary, the s c h o o l trustees and b o a r d administrators. T h e  relationships that parents h a d w i t h teachers, special education assistants, a n d p r i n c i p a l s  w e r e v e r y important to t h e m , a n d were a p r i m a r y element i n the past, present a n d the  future. T h e i r expectations o f the educational system were m o r e futuristic. In other w o r d s , h o w they talked about the education system i n C a n a d a was not so m u c h i n the present as m u c h as what they h o p e d the system w o u l d eventually do for their c h i l d i n the future. T h e y h o p e d that the educational system w o u l d fix their c h i l d ' s c o n d i t i o n , and teach h i m / h e r the skills necessary to lead a n o r m a l life. E a c h f a m i l y i m m i g r a t e d to C a n a d a for p r i m a r i l y educational purposes, it is safe to say that this relationship p l a y e d a prevalent role throughout their lives for these parents. T h e relationship w i t h the e d u c a t i o n s y s t e m was the m o s t e n c o m p a s s i n g relationship they h a d i n their new c o m m u n i t i e s . T h i s was apparent b y the amount o f time they spent o n t a l k i n g about their c h i l d ' s education. T h e relationship that each parent h a d w i t h the s c h o o l system is often c o n f u s i n g and c o n f l i c t i n g due to v a r i o u s reasons. A l l the parents have b e e n a n d continue to be apprehensive about their interactions w i t h the s c h o o l . In all three cases, at s o m e p o i n t i n the past or present, w h e n the i m m i g r a n t parents a n d the s c h o o l are required to engage w i t h one another a r o u n d their c h i l d ' s autism, the relationship was frequently characterized b y crisis, tension, defensiveness, b l a m e , and m i s c o m m u n i c a t i o n ( C a r l s o n , 1992). T h e trepidation w i t h w h i c h parents approached the s c h o o l does h a v e merit, as the relationship was a temperamental one. M r . T e x c l a i m e d , " T h e r e is n o a l l o w a n c e for parents to have any i n v o l v e m e n t i n any o f the decisions about c h i l d r e n e s p e c i a l l y i n the  83  s c h o o l system." A l l education systems s h o u l d p r o v i d e services that are to be available i n close p r o x i m i t y a n d accessible without reference to p h y s i c a l , p s y c h o l o g i c a l , s o c i a l , linguistic, or other barriers; a n d that are c o m p r e h e n s i v e and appropriate i n that they address the priorities identified b y the f a m i l y at a l e v e l o f service sufficient to meet their needs ( C a r l s o n , 1996). In M r . T ' s case, he contended that his c h i l d ' s needs are not b e i n g met. In d e s c r i b i n g the u n i o n scandal, he stated, "If she h a d not r e c e i v e d it, we, the s c h o o l , the teachers, w o u l d not have f o u n d out until the first day o f s c h o o l a n d n o b o d y w o u l d h a v e k n o w n w h o this p e r s o n was, and I a m supposed to introduce a c h i l d w i t h a u t i s m w h o cannot cope w i t h w a l k i n g d o w n the opposite side o f the street. It is not reasonable!" In c o n s i d e r a t i o n o f the fact that a c h i l d w i t h autism does not fit the ' a c a d e m i c n o r m ' i n that they often differ i n the p h y s i c a l , p s y c h o l o g i c a l , social, and linguistic d o m a i n s , these criteria p r e v i o u s l y m e n t i o n e d were laden w i t h guilt, b l a m e , frustration, anger, resentment, and sadness o n b e h a l f o f the parents. T h u s , persons i n the education s y s t e m were d e a l i n g w i t h m o r e than i n d i v i d u a l i z e d educational programs. Rather, they were w o r k i n g w i t h parents' hearts a n d souls - their c h i l d r e n w i t h autism w h o , without doubt, w e r e the m o s t sensitive a n d central issue i n their lives. In essence, this stormy relationship was a result o f s c h o o l issues a r o u n d their c h i l d r e n . O f t e n these issues were v i e w e d as signs o f future d i f f i c u l t y for their c h i l d w i t h autism over w h i c h they felt they h a d little or n o c o n t r o l .  A s w e l l , all six parents carried w i t h t h e m s o m e experiences from their p r e v i o u s s c h o o l systems i n their h o m e countries. In d e s c r i b i n g the education s y s t e m i n their h o m e c o u n t r y , M r s . K e x p l a i n e d , "a few years ago, the M i n i s t r y o f H e a l t h i n K o r e a d i d not e v e n k n o w the m e a n i n g o f a u t i s m ! " M r . K continued, " A s parents o f a c h i l d w i t h autism, e v e n the g o v e r n m e n t does not have any k n o w l e d g e , so h o w c a n w e as parents educate t h e m ?  T h e i r understanding o f autism and insecurities are not even k n o w n ! " M r . K contrasted the e d u c a t i o n s y s t e m i n C a n a d a w i t h the s y s t e m i n K o r e a , " H e r e , I c a n say m y s o n is autistic, a n d the s c h o o l system is w i l l i n g to help...most teachers support the c h i l d w i t h special needs..." W i t h h i g h expectations and an effort to prevent s i m i l a r past mistakes, they b r o u g h t w i t h t h e m their o w n biases and aspirations. M r . T p r o c l a i m e d , " W e h a v e always thought that C a n a d a was full o f opportunity for us c o m p a r e d to b e i n g i n E n g l a n d . " T h u s , their expectations m a y be higher and their demands a n d frustrations greater. T h i s m i g h t p o s i t i v e l y or negatively influence the relationship they have w i t h the present system. S e c o n d l y , i n order to understand the relationship that parents a n d schools shared, it was h e l p f u l to v i e w them i n terms o f two systems s u c h as the f a m i l y a n d s c h o o l w h i c h represent p u r p o s e f u l entities c o m p r i s e d o f o r g a n i z e d and interrelated parts ( C o n n e l l y & C l a n d i n i n , 1990). L i k e i m m i g r a n t parents, the s c h o o l system is an enterprise that is clearly o p e n to the vicissitudes o f p u b l i c o p i n i o n and social change. M o r e o v e r , l i k e a f a m i l y , a s c h o o l has a w e l l articulated b e l i e f systems that strongly influence its staff f u n c t i o n i n g ( C a r l s o n , 1996). L i k e each f a m i l y , a s c h o o l system has a past, present, a n d a future. T h e s e parents were often c o n f u s e d about their relationship w i t h the s c h o o l s y s t e m i n B.C., a n d due to their o w n pressing d e m a n d s , often failed to see specific contextual d i m e n s i o n s s u c h as l i m i t e d financial resources, l i m i t e d time schedules, c u r r i c u l u m objectives, a n d general p u b l i c demands for teacher performance a n d accountability. D u e to the fact that the s c h o o l s y s t e m is a n o p e n a n d o n g o i n g system subject to d i v e r s e o p i n i o n a n d a c h a n g i n g social context, it is not a surprise that friction occurs  85  o c c a s i o n a l l y . In s o m e cases, i m m i g r a n t parents o f c h i l d r e n w i t h autism p e r c e i v e d the current educational service d e l i v e r y to c h i l d r e n to be inadequate. T h e M i n i s t r y for C h i l d r e n and F a m i l i e s  In theory, the M i n i s t r y for C h i l d r e n and F a m i l i e s p r o v i d e s these parents w i t h f i n a n c i a l assistance, respite care, or b e h a v i o r m o d i f i c a t i o n programs. S u c h supports are essential to the s u r v i v a l o f these families. W h e n parents discussed the experiences i n their h o m e countries, they a l l talked about the important role that various agencies p l a y e d i n their lives. H e r e , i n C a n a d a , assistance f r o m the M i n i s t r y i n areas s u c h as a d v o c a c y , c o o r d i n a t i o n o f resources, s u p p l y o f information, and crisis intervention were v e r y h e l p f u l . In all the interviews, it was apparent that their relationship w i t h the M i n i s t r y h a d p r o v i d e d t h e m w i t h s o m e essential services such as the sharing o f resources, c o m m u n i t y services, a n d respite care w h i c h provides parents w i t h a little time for themselves. A l l families reported that they h a d met w i t h a social worker, and they were a l l i n f o r m e d o f the v a r i o u s services that were available to them. O n a positive note, families appreciated that there is a r e c o g n i z e d need for a b r o a d based c o n t i n u u m o f services for families w i t h c h i l d r e n w i t h autism. H o w e v e r , the families w h o m I i n t e r v i e w e d were somewhat c o n f u s e d about the service d e l i v e r y o f the M i n i s t r y , and feelings o f a m b i v a l e n c e were apparent. T o illustrate, o n the one h a n d , all parents expressed sincere appreciation for the presence o f s o m e o f the services w h i c h the M i n i s t r y has p r o v i d e d s u c h as respite care, a n d I sensed feelings o f sincere gratitude. T h e y appreciated the efforts m a d e b y the M i n i s t r y . O n one l e v e l the M i n i s t r y attempts to respect the needs, wants, and desires o f these i m m i g r a n t families a n d they are d o i n g their best to m a i n t a i n the c h i l d w i t h a u t i s m i n their h o m e environment. H o w e v e r , the huge n u m b e r o f cases a n d the l e v e l o f intensity  86  o f services w h i c h are p r o v i d e d are insufficient. H a v i n g to p r o v i d e 24 h o u r per d a y care  for a c h i l d w h o is out o f control m u c h o f the time takes its toll. M a n y parents expressed  frustration c o n c e r n i n g their inability to find consistent a n d c o o r d i n a t e d services for their  families, f i n a n c i a l assistance, b e h a v i o r m o d i f i c a t i o n p r o g r a m s , a n d c o o r d i n a t e d case  management. O n e f a m i l y talked about the d i s c r i m i n a t i o n inherent i n the relationship b e t w e e n themselves a n d the M i n i s t r y . M r . T asserted that politicians are not attentive to the needs o f autism. H e suggested that the M i n i s t r y for C h i l d r e n a n d F a m i l i e s is currently p r e o c c u p i e d w i t h c h i l d abuse, h i n d e r i n g the ability o f social workers to effectively w o r k w i t h the needs o f parents, like themselves, l i v i n g w i t h autism. A s w e l l , M r . a n d M r s . K spoke for all three couples, i n their frustration w i t h the generic p r o g r a m s i m p l e m e n t e d b y the M i n i s t r y w i t h no specialized k n o w l e d g e o f autism. T h e y c o m p l a i n e d that the current system does not address the i n d i v i d u a l needs o f i m m i g r a n t parents l i v i n g w i t h autism. H e stated, "I k n o w that C a n a d i a n s already spend a lot o f m o n e y to g i v e c h i l d r e n like our son a full time teaching aid; w e have m a n y things but these are things that take care o f the c h i l d . It s h o u l d be m o r e aggressive a n d p r o a c t i v e to h e a l the c h i l d w i t h autism."  N o t one o f these families has r e c e i v e d a n y b e h a v i o r a l support for their c h i l d r e n  w i t h autism f r o m the M i n i s t r y . T h e y were all disappointed b y the l a c k o f service i n this  area, as all understand the importance o f early intervention strategies i n order to p r o v i d e  their c h i l d r e n w i t h basic skills.  87  In contrast to the d i s c u s s i o n a r o u n d the educational system, d i s c u s s i o n about the M i n i s t r y w a s focused o n the present. In s o m e w a y s , it c a n be l o o k e d at as f u l f i l l i n g their basic n e e d for s u r v i v a l . T h e M i n i s t r y p r o v i d e d t h e m w i t h the fuel to s i m p l y subsist. T h e s e parents were recent i m m i g r a n t s to C a n a d a . C o n s e q u e n t l y , they were i n s u r v i v a l m o d e . H o w e v e r , a closer l o o k revealed families w h o were r e c e i v i n g few services i n spite o f the m a g n i t u d e s o f their w o r k . In two o f the cases, sleep d e p r i v a t i o n w a s a serious c o n c e r n for at least one spouse. O v e r time, a w e a k b o n d w i t h outside agencies c o u l d leave these parents e m o t i o n a l l y and p h y s i c a l l y exhausted, and at risk for a serious crisis. Parents were pleased w i t h the quality o f respite care for example; h o w e v e r , they all expressed a n e e d for m o r e o f it. A l l families were disappointed b y the l e v e l o f care that they w e r e r e c e i v i n g a n d attribute it to various things s u c h as the restructuring o f the M i n i s t r y or B . C . ' s recession. A l l families h o p e d that the i m p l e m e n t a t i o n o f these services w o u l d i m p r o v e i n the future. T h e A u t i s m Society o f B . C . T h e s e families reported that the A u t i s m S o c i e t y o f B . C .  was v e r y instrumental  a n d facilitative. T h e S o c i e t y served as a g o o d n e t w o r k i n g tool a n d p o i n t e d families i n the right d i r e c t i o n . T h e A u t i s m S o c i e t y o f B . C . seemed to support parents as advocates for their c h i l d r e n ; i n f o r m e d parents o f relevant i n f o r m a t i o n a n d services; p r o m o t e d c o m m u n i t y p a r t i c i p a t i o n i n attaining their objectives; and p r o v i d e d a n e t w o r k b e t w e e n these families a n d other agencies.  88  Finances A l l the parents were c o n c e r n e d about their relationship w i t h finances as a u t i s m often results i n severe costs to these families. T h e cost o f diapers, b e h a v i o r a l m o d i f i c a t i o n p r o g r a m s s u c h as the L o v a a s m e t h o d , drug, speech, a n d massage therapy, a n d c h i l d care were s o m e o f the worries expressed b y all families i n their countries o f o r i g i n a n d i n C a n a d a . In particular, the Fathers reported m o r e stress as the sole i n c o m e p r o v i d e r s . Informal Support System  A l l parents expressed a n e e d to m a k e friends w i t h w h o m they c o u l d d e p e n d o n a n d s o c i a l i z e w i t h . T h e y needed to feel a sense o f b e l o n g i n g to a group i n order to feel m o r e integrated and part o f the c o m m u n i t y . In V a n c o u v e r , s o m e o f their friends attended meetings a n d s o c i a l events w i t h these groups. U n f o r t u n a t e l y , they expressed c o n c e r n about not b e i n g able to attend because they d i d not have the time or c h i l d care. T h e need for a care g i v e r was a critical n e e d for all parents. Intra-, Inter-, a n d E x t r a - F a m i l i a l E m o t i o n s In the interviews, i m m i g r a n t parents described their experiences i n c a r i n g for their c h i l d w i t h autism. T h e y shared m a n y details, a n d i n spite o f s o m e language difficulties i n t w o o f the cases, they painted clear a n d c o l o u r f u l pictures o f their experiences. It s e e m e d that the mothers expressed stories m o r e o n an emotive plane, whereas the fathers w e r e m o r e cognitive. Nonetheless, their personal experiences directed the unstructured interviews. It was i m p l i e d i n the interviews that m a n y c o m m o n feelings s u c h as guilt, p a i n , frustration, anxiety, fear, anger, sadness and embarrassment i n f l u e n c e d every relationship. P o s i t i v e emotions s u c h as love, devotion, a n d h o p e were also evident. T h i s m o s a i c o f emotions were w o v e n throughout the interview a n d 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 a r o u n d h i m , " T h e r e were battles that w e have h a d to fight that w e s h o u l d not h a v e to fight. It is the responsibility o f the government that they are not t a k i n g u p . " It appeared that M r . a n d M r s . T ' s frustrations were m o r e than annoyances. R a t h e r , h i s frustrations h a v e c u l m i n a t e d into outright rage. H e was angry at the systems all a r o u n d him.  Guilt and S e l f - B l a m e A n abundance o f literature suggests that mothers o f c h i l d r e n w i t h autism are incapacitated b y feelings o f guilt a n d s e l f - b l a m e ( F o n g & W i l g o s h , 1992; M e s i b o v & S c h o p l e r , 1984; R o u s e y , Best, & B l a c h e r , 1992). G e n e r a l l y , the interviews r e v e a l e d p e o p l e w h o d i d not feel guilty or b l a m e themselves. Rather, parents c a r e d for their c h i l d r e n deeply; h a d taken o w n e r s h i p o f their c o n d i t i o n , a n d were o n a serious quest to m a k e their lives as h a r m o n i o u s as possible. T h e y were pragmatic, accepting, a n d h e a d strong. Anxiety  A l l parents reported feeling anxious about one t h i n g o r another i n regards to their c h i l d r e n or other circumstances i n their lives. M r . K reported, " W h e n I d e c i d e d to i m m i g r a t e here, I w a s v e r y w o r r i e d , and I was w o r r i e d about h o w m y s o n w o u l d be i n this society."  In regards to d e s c r i b i n g his present financial situation he stated,  " S o m e t i m e s I don't l i v e w e l l . I can't sleep because I can't m a k e m o n e y for the extra $ 2 0 , 0 0 0 . 0 0 i n this society." M r . T shared his worries about his two c h i l d r e n , " W e are v e r y c o n c e r n e d that S a m a n t h a is g o i n g to h a r m Susan. I have t o l d every p e r s o n that this p r o b l e m exists, a n d I h a v e not h a d one single p e r s o n c a l l m e b a c k s a y i n g that w e h a v e p u t this into p l a c e to try a n d help. N o b o d y has heard us!" It was clear that anxiety w a s a  91  c o m m o n d e n o m i n a t o r i n their lives, and they w o r k e d h a r d to alleviate their concerns about their c h i l d r e n , financial situations, l i v i n g conditions, a n d support systems. Fear  It was i m p l i e d that these families were d r i v e n b y the fear that they w o u l d not be there for their c h i l d r e n one day. M r s . P explained, "If they cannot p r o v i d e o n time education, I m e a n w h o w i l l take care o f h i m ? I m e a n , M o t h e r a n d F a t h e r w i l l die s o m e d a y right, so w e u u u h h h have l i m i t e d time...maybe ten years." M r . T stated, "In the future w h e n she is 25 years o l d , and I a m dead, she is not a full cost to society a n d l i v i n g i n a n institution." M r . K stated, " I also p r a y for m y c h i l d r e n that w h e n they g r o w u p , that they w i l l be able to m a r r y . I h o p e that they w i l l be able to w o r k a n d carry a relationship, a n d I k n o w that i f I die, they w i l l be o k a y . " A l l parents were future oriented; h o w e v e r , a l l w o r k e d h a r d to eliminate their fears about the future w h e n they m a y not be here to take care o f their c h i l d r e n . Embarrassment T w o o f the three families related stories reflecting embarrassment i n their countries o f o r i g i n a n d i n C a n a d a . T o illustrate, M r s . P d e s c r i b e d her circumstances i n the P h i l i p p i n e s , " In the P h i l i p p i n e s , it is very different there. T h e y w o u l d not m o c k m e . T h e y w o u l d just talk about it and talk about it. It's l i k e gossip y o u k n o w . O h , p o o r little M r s . P . S h e has two a b n o r m a l c h i l d r e n , and I just don't want to hear that." In addition, M r s . K d e s c r i b e d her experiences i n the m a l l , " E s p e c i a l l y i n a p u b l i c p l a c e . . . H e does not want to line up i n a s h o p p i n g m a l l . H e shouts sometimes a n d has s c r e a m i n g fits a n d tantrums. E v e r y b o d y l o o k s at us a n d wonders w h y m y c h i l d does that. S o m e t i m e s I e x p l a i n , but  92  m o s t o f the time, I don't. I say, I don't k n o w . A c h i l d w i t h autism l o o k s l i k e a n o r m a l  c h i l d so it is not easy." Courage T h e s e parents demonstrated tremendous strength, tenacity, a n d courage. In the interviews, s o m e parents shared their experiences i n what it was l i k e w h e n they d i s c o v e r e d that they h a d a c h i l d w i t h autism. T h e y felt shattered. M r s . P d e s c r i b e d , "It w a s l i k e the w o r l d fell d o w n o n m e . " T h e i r expectations o f h a v i n g a n o r m a l c h i l d were dashed. T h e plans they h a d around b u i l d i n g a life w i t h a healthy c h i l d were r u i n e d . M r s . P reported, " B e f o r e I h a d her, I was p r e p a r i n g already to g i v e her a g o o d education. I b o u g h t all these educational toys and b o o k s , so y o u c a n just i m a g i n e m y frustration w h e n I f o u n d out that s o m e t h i n g w a s w r o n g w i t h her." T h e s e parents h a v e endured m a n y obstacles i n getting their c h i l d r e n s ' needs fulfilled. T h e i r experiences e x e m p l i f i e d m o m e n t s o f turbulents, trials, a n d tribulations. T o illustrate, they have all h a d to arrange for v a r i o u s c h i l d services outside the f a m i l y unit, a n d all have reported the difficulties i n m a i n t a i n i n g a n effective a n d efficient l e v e l o f service i n their countries o f o r i g i n , a n d i n two o f the cases, here i n C a n a d a . M r . T e x c l a i m e d , " W e have h a d to fight a n d fight to get what w e need. I think that w e expected it to be difficult, but w e d i d not expect that w e w o u l d h a v e to put forth so m u c h energy to get what w e needed." F o r each testimonial o f care a n d assistance, these parents wrote letters, m a d e phone calls, a n d engaged i n n u m e r o u s battles.  93  Parents as A g e n t s I m m i g r a n t parents h a d a distinct characteristic i n that they possessed the ability to take charge i n situations a n d m a k e things happen. T h e y were active agents i n their l i v e s i n contrast to patients to w h o m things h a p p e n ( d e C h a r m s , 1976). d e C h a r m s (1976) characterized a g e n c y w i t h six m a j o r features. First, an agent experiences h i m s e l f or h e r s e l f as the cause o f his or her decisions a n d actions. A g e n t s have a p e r s o n a l basis for t a k i n g action. L i k e agents, i m m i g r a n t parents h a d m e a n i n g f u l m o t i v e s . T h e y left their countries o f o r i g i n , arrived to C a n a d a , a n d learned n e w rules a n d customs to h e l p their c h i l d w i t h autism. S e c o n d l y , agents set c h a l l e n g i n g but realistic goals that are a n c h o r e d i n m e a n i n g f u l m o t i v a t i o n . I m m i g r a n t parents d i d what was w i t h i n their control to learn. In an attempt to m a k e m o r e m e a n i n g o f all these e m o t i o n laden relationships, it was clear that the e m o t i o n a l quality o f the parent - c h i l d relationship was all e n c o m p a s s i n g a n d forceful, a n d took a role o f o v e r w h e l m i n g significance i n their lives. T h i s was reflected i n every narrative interview i n that the majority o f the relationships i n these parents lives was significantly i n f l u e n c e d and d r i v e n b y their p r i m a r y , all e n c o m p a s s i n g relationship they h a d w i t h their c h i l d w i t h autism. E n g l i s h , search for new schools, a n d m a k e n e w friends as an initial step towards m a k i n g their c h i l d feel integrated. T h i r d , agents are active w h i l e patients are passive. Immigrant parents h a d direction and each action h a d a specific a i m . F o u r t h , agents develop a functional perception o f reality that h i g h l i g h t w h a t m i g h t facilitate or h i n d e r m o v e m e n t toward a goal. T h e s e parents were attentive to p o s s i b l e means, resources, obstacles, a n d their o w n strengths a n d weaknesses. T h e y established extrafamilial relationships w i t h the educational and s o c i a l systems w i t h the a i m o f h e l p i n g their c h i l d . F i f t h , agents feel confident, w h i l e patients l a c k c o n f i d e n c e .  94  T h e s e parents h a d an optimistic o u t l o o k and b e l i e v e d that they c a n m a k e changes i n their situations. F i n a l l y , agents assume responsibility for actions, g o a l attainment, a n d consequences w h i l e patients m i n i m i z e or d e n y responsibility. T h e s e parents accepted b l a m e or credit w h e n it w a s due. T h i s related to their sense o f o w n e r s h i p .  S e a r c h i n g for N o r m a l i t y T h e s e parents were recent i m m i g r a n t s to C a n a d a , a n d they were amidst a process o f adjustment i n that they were learning n e w rules and regulations, customs, establishing n e w friends, a n d e x p l o r i n g the territory. O n another level, i m m i g r a n t parents were all d r i v e n towards the attainment o f an ultimate goal; that is, c o n f o r m i t y w i t h a central n o r m o f f a m i l y life. T h e i r need to c o n f o r m w i t h the central n o r m o f f a m i l y life w a s apparent throughout the interviews a n d depicted i n the case portraits. T o illustrate, they were constantly c o m p a r i n g their o w n circumstances to those o f ' n o r m a l ' families. T h e t e r m ' n o r m a l ' is used to refer to different concepts, d e p e n d i n g o n o n e ' s frame o f reference, w h i c h are strongly influenced b y the subjective p o s i t i o n o f the observer a n d b y the cultural s u r r o u n d ( B e c v a r & B e c v a r , 1996).  D i f f e r e n t theoretical concepts o f n o r m a l i t y are interesting to note. T o b e g i n , f r o m a m e d i c o - p s y c h i a t r i c m o d e l , it is based o n the criterion o f absence o f p a t h o l o g y . P e r s o n s w h o are a s y m p t o m a t i c , manifesting n o disturbances are c o n s i d e r e d n o r m a l a n d healthy. A n a p p r o a c h c o m m o n i n s o c i o l o g i c a l and b e h a v i o r a l studies use the statistical n o r m , or average to identify t y p i c a l patterns or traits. I n h u m a n i s t i c theories, n o r m a l i t y refers to ' s e l f actualization' or potential. F i n a l l y , G e n e r a l S y s t e m T h e o r y suggests that n o r m a l i t y attends to i n d i v i d u a l d e v e l o p m e n t a l processes over the life course i n the context o f transactional systems dependent o n an interaction o f b i o p s y c h o s o c i a l variables ( B e c v a r &  95  B e c v a r , 1996). A l l o f the above definitions c a n be u s e d to describe these i m m i g r a n t parents perceptions o f n o r m a l i t y . T o illustrate, M r s . P stated, " W h e n I see f a m i l i e s a r o u n d w i t h three or four c h i l d r e n a n d they are all normal...it makes m e c r y . " In response to m y question, " H o w w o u l d y o u r life be i f y o u d i d not have a c h i l d w i t h autism?", M r s . K r e s p o n d e d , "It w o u l d be l i k e other parents o f n o r m a l k i d s . I c o u l d do s o m e t h i n g for m y s e l f ! " W h e n M r . T compares his circumstances to his neighbours, he said, " It has b e e n m o r e w o r k to get things o r g a n i z e d . " T h e s e statements reveal h o w i m m i g r a n t parents o r g a n i z e d their experiences i n relation to ' n o r m a l ' families. T h e i r ultimate g o a l w a s not unto itself; rather, it was i n association w i t h or a c o n n e c t i o n to a t y p i c a l f a m i l y ' s w a y o f life. Emotional Normalization E v e r y narrative reflected the ultimate a i m o f e m o t i o n a l n o r m a l i z a t i o n . T h a t is, they were striving for f u l l integration, e m o t i o n a l l y and p h y s i c a l l y , i n an attempt to construct a n o r m a l life for themselves and their c h i l d r e n . T o understand h o w these parents e v o l v e d towards attaining e m o t i o n a l n o r m a l i z a t i o n , an e x a m i n a t i o n o f their lives w i t h i n the context o f b o t h the f a m i l y a n d the culture, w i t h its inherent set o f past a n d present intra- a n d i n t e r - f a m i l i a l strengths, and h o w they c h a n g e d o v e r time was essential. E m o t i o n a l n o r m a l i z a t i o n has o c c u r r e d w h e n both the parents and the c h i l d r e n feel c o m p l e t e l y integrated i n their e m b e d d e d systems. T h e attainment o f e m o t i o n a l n o r m a l i z a t i o n has m a n y layers a n d c a n be v i e w e d i n the context o f e m b e d d e d relationships i n different places a n d c h a n g i n g o v e r time. C a r i n g for a c h i l d w i t h autism is v e r y d e m a n d i n g and i n itself is not c o n d u c i v e to a n o r m a l existence. M o r e o v e r , the g o a l o f e m o t i o n a l n o r m a l i z a t i o n c o u l d have felt distant as these  96  i m m i g r a n t families felt like strangers i n a new c o m m u n i t y . In an effort to m a k e their surroundings m o r e familiar, parents, together w i t h their c h i l d r e n , were f o r c e d to establish relationships o n the outside o f their m i c r o s y s t e m , the i m m e d i a t e f a m i l y unit. M a n y interplays were at w o r k w i t h i n the f a m i l y unit as i n t r a - f a m i l i a l strengths s u c h as c o m m i t m e n t , congruence, purpose, c o m m u n i c a t i o n , c o p i n g strategies, appreciation, a n d rules, values, and beliefs interacted w i t h each other i n s u c h a w a y as to m o b i l i z e the f a m i l y to meet its i m m e d i a t e needs and s i m p l y survive. M o r e o v e r , these strengths w h i c h i n f l u e n c e d the relationships inside the f a m i l y , i n d i r e c t l y affected the relationships established outside w i t h the m e d i c a l profession, s o c i a l services, s p e e c h pathologists, b e h a v i o r m o d i f i c a t i o n workers, respite care givers, teachers, p o l i t i c a l figures, a n d other support networks. A l l o f these processes p l a y e d a role i n attaining integration. T h u s , the various strengths w i t h i n the f a m i l y system i n f l u e n c e d the relationships inside the f a m i l y unit, a n d these relationships affect a n d were affected b y the relationships outside. B y w o r k i n g h a r d to m a i n t a i n healthy relationships b o t h inside a n d outside the f a m i l y unit, they strive towards their g o a l o f e m o t i o n a l n o r m a l i z a t i o n . T h e constitution o f the i m m i g r a n t f a m i l y has b e e n discussed i n terms o f the e m o t i o n a l w o r k invested i n the parent c h i l d relationship a n d all those relationships s u r r o u n d i n g it. T h e turning point o f h a v i n g a c h i l d w i t h autism m o v e f r o m a n o n c o m m u n i c a t i v e disintegrated state into a c o m m u n i c a t i v e , f u n c t i o n i n g a n d integrated h u m a n b e i n g was what every f a m i l y h o p e d to experience i n C a n a d a . E v e r y c o u p l e e x p e r i e n c e d s o m e p a i n a n d g r i e f i n their countries o f o r i g i n w h e n they f o u n d out that their c h i l d h a d autism. T h e y tried to m a k e things w o r k i n their h o m e countries, but felt l i k e they were m i s s i n g something. T h e y were o n a quest to m a k e their lives better, a n d  97  they m a d e a c o l l a b o r a t i v e d e c i s i o n to i m m i g r a t e to C a n a d a i n hopes to p r o v i d e their c h i l d r e n w i t h a n o r m a l life. H e r e , i n C a n a d a , they were b o m b a r d e d w i t h n e w systems, customs, a n d values, but these stresses were secondary to the stresses related to their c h i l d rearing experiences. A c o m m o n thread throughout each life a n d i n each c o u n t r y were the relationships that were established to alleviate stress, p r o v i d e t h e m strength, a n d enhance feelings o f s i m i l a r i t y . E m o t i o n a l n o r m a l i z a t i o n c a n be described as a process w o r k e d at b y i m m i g r a n t parents i n c a r i n g for their c h i l d r e n w i t h autism to m i n i m i z e the difference b e t w e e n their o w n families a n d ' n o r m a l ' families. F o r the c h i l d to d e v e l o p to his/her o p t i m a l potential, the c h i l d depends o n the f a m i l y to initiate and sustain different relationships o n the outside o f their f a m i l y unit i n order to m a k e things feel n o r m a l o n the inside. F a m i l i e s have m o v e d to C a n a d a , a n d they continue to strive for integration as the attainment o f e m o t i o n a l n o r m a l i z a t i o n is a life time process. P r a c t i c a l Implications T o understand the experiences o f i m m i g r a n t parents c a r i n g for c h i l d r e n w i t h autism, a narrative a p p r o a c h was e m p l o y e d . It was apparent f r o m the interviews that their experiences related to concerns a r o u n d their c h i l d r e n w i t h autism. T h e issues related to b e i n g recent i m m i g r a n t s to C a n a d a appeared to be secondary i n this study. S o m e i m m i g r a n t parents felt that the service d e l i v e r y was disintegrated a n d inadequate i n C a n a d a . O t h e r s h a v e b e e n i n C a n a d a for a shorter time, a n d h a v e not encountered as m a n y shortcomings. N o n e t h e l e s s , a n analysis o f the data i n terms o f relationships suggests that helpers m u s t c o n s i d e r a n eclectic e c o l o g i c a l s o l u t i o n i n order to effectively h e l p these i m m i g r a n t families c a r i n g for c h i l d r e n w i t h autism. T o m a x i m i z e our intervention skills, parents  98  c a r i n g for their c h i l d r e n w i t h autism c a n be v i e w e d contextually a n d i n interaction terms.  In other w o r d s , an understanding o f the m a t c h between the f a m i l y a n d the e n v i r o n m e n t is  critical. P r o f e s s i o n a l s must be h e l d accountable to families and tax payers for p r o v i d i n g support that w i l l foster independence i n i m m i g r a n t families l i v i n g w i t h autism. L i k e their b a c k g r o u n d s , families l i v i n g w i t h autism v a r y significantly i n their abilities a n d thus i n d i v i d u a l i z e d supportive p r o g r a m s a n d trained assistants w h o have k n o w l e d g e o f autism and a genuine understanding o f cultural diversity is essential. In essence, for c h i l d r e n a n d parents l i v i n g w i t h autism to reach and m a i n t a i n their o p t i m u m potential, services must be accessible, equitable, and appropriate to all families. In a n effort to i m p r o v e services to these families, c o m m u n i t y b a s e d c h i l d case m a n a g e m e n t p r o g r a m s are necessary to i m p r o v e c o o r d i n a t i o n a m o n g service p r o v i d e r s a n d to increase families access to r e q u i r e d services. T h a t is, the entire c o m m u n i t y is a resource for m e e t i n g the needs o f families w i t h c h i l d r e n w i t h autism. O f course, families m u s t m a k e a n effort a n d be o p e n to successful integration into c o m m u n i t y b a s e d l i v i n g . R o n n a u (1991) suggests that the f a m i l y is the p r i m a r y l i n k between the c o n t i n u u m o f services w h i c h the c h i l d or adolescent w i l l need. It is v i r t u a l l y i m p o s s i b l e , and often counterproductive, to w o r k w i t h the c h i l d i n isolation f r o m the f a m i l y ; to help the c h i l d , y o u m u s t h e l p the f a m i l y ( W e r r b a c h , 1996). It seems that each f a m i l y is confused about the roles a n d responsibilities o f the different organizations a n d services i n V a n c o u v e r . W h e t h e r it be i n the M i n i s t r y o f H e a l t h , E d u c a t i o n , o r for C h i l d r e n a n d F a m i l i e s , there appears to be n o c o o r d i n a t i o n o f the v a r i o u s p r o g r a m s for c h i l d r e n and families l i v i n g w i t h autism. T h e present s y s t e m is  99  too fragmented a n d there is m i n i m a l accountability. In order to help an i m m i g r a n t f a m i l y care for their c h i l d r e n w i t h autism, one m a i n center c o u l d be created for e x c e l l e n c e i n autism. E x p e r t s i n autism, extensive resources, and specific b e h a v i o r a l p r o g r a m s s h o u l d be systematically p r o v i d e d for all families l i v i n g w i t h autism.  T h e interviews revealed that s o m e o f these parents w o u l d benefit from h a v i n g case managers. T h e y c o u l d p l a y i n k e y activities s u c h as assessing f a m i l y a n d c h i l d strengths, c o o r d i n a t i n g service p l a n activities, m e d i a t i n g a m o n g service p r o v i d e r s , a n d p r o v i d i n g u n c o n d i t i o n a l support for i m m i g r a n t families and c h i l d r e n w i t h autism. S e c o n d l y , parents s h o u l d have access to an early intensive intervention p r o g r a m . A f t e r a l l , without early diagnosis a n d intensive intervention, most w i l l r e m a i n severely m e n t a l l y a n d s o c i a l l y d i s a b l e d ( B . C . C o u n c i l o n A u t i s m , 1998). C o n s e q u e n t l y , they c o u l d be tax burdens for the rest o f their lives. M r . T talked about the system i n the U . K . w h e r e b y the diagnosis requires a team (pediatrician, p s y c h o l o g i s t , speech pathologist, a n d other d i s c i p l i n e s as needed) all w i t h skills a n d experience i n the diagnosis o f autism. B y this action, parents get a t h o r o u g h account o f their c h i l d ' s disability, and r e c o m m e n d a t i o n s are m a d e for appropriate interventions. It is apparent that there is a team i n B . C . w h e r e b y parents are referred to S u n n y H i l l H o s p i t a l i n V a n c o u v e r ; however, the w a i t i n g times for assessment range f r o m six to t w e l v e m o n t h s ( B . C . C o u n c i l o n A u t i s m , 1998). A l l three families discussed important therapies w h i c h were not c o v e r e d b y the M e d i c a l Services P l a n . M r . K , a l o n g w i t h dozens o f families i n B r i t i s h C o l u m b i a , are f u n d i n g from their o w n resources, the flights o f A m e r i c a n consultants to set u p a n i n h o m e A B A p r o g r a m ( B . C . C o u n c i l o n A u t i s m , 1998). T h e s e i n c l u d e the L o v a a s type  100  a p p l i e d b e h a v i o u r analysis and other programs. It is apparent that autism has significant f i n a n c i a l i m p l i c a t i o n s for these families. Perhaps l o c a l politicians a n d administrators s h o u l d m o d i f y the present p o l i c i e s to ensure that families l i v i n g w i t h autism are not i g n o r e d a n d d i s c r i m i n a t e d against. C u r r e n t l y , c h i l d r e n w i t h disabilities receive services o n l y w h e n f u n d i n g is available, and they do not have any legislated right to services ( B . C . C o u n c i l o n A u t i s m , 1998).  M r . T c o m p l a i n e d l o u d l y about the ' A t H o m e ' P r o g r a m . H e , a l o n g w i t h m a n y other parents c a r i n g for c h i l d r e n w i t h autism do not receive the services. In recent years, the m a j o r i t y o f c h i l d r e n w i t h autism are not p r o v i d e d w i t h the m e d i c a l p o r t i o n o f the p r o g r a m apparently because they have no o b v i o u s p h y s i c a l disability. Perhaps administrators o f the A t - H o m e P r o g r a m s h o u l d re-consider their guidelines so that they do not discriminate against c h i l d r e n o n the autism spectrum.  D u e to transportation restrictions a n d c h i l d care issues, families w o u l d benefit f r o m h a v i n g a c h o i c e between a autism-specific learning facility or an at h o m e intervention p r o g r a m .  It has b e e n noted that schools - m o r e than parents- are i n a p o s i t i o n to create the c o n d i t i o n s n e e d e d to o v e r c o m e difficult relationship barriers ( C a r l s o n , 1996). H o m e s c h o o l c o l l a b o r a t i o n m e c h a n i s m s s h o u l d be i m p l e m e n t e d to assure the e m p o w e r m e n t o f families l i v i n g w i t h autism.  A s the v a r i o u s social support systems restructure their p r o g r a m s i n the future, I h o p e that the needs o f f a m i l i e s l i v i n g w i t h autism m u s t be considered. N e w p r o g r a m s w h i c h p l a c e emphasis o n an integrated, pro-active a p p r o a c h w i l l be v e r y b e n e f i c i a l .  101  It was evident i n m y analysis o f the case portraits that these families p o s s e s s e d n u m e r o u s strengths that c o u l d be used b y the helpers. M r . T p r o b a b l y speaks o n b e h a l f o f n u m e r o u s f a m i l i e s w h o are i n n e e d o f m o r e h e l p at h o m e . H e wants to k e e p his c h i l d r e n i n his l o v i n g a n d c a r i n g h o m e , but he requires assistance. A n increasing n u m b e r o f parents are b e i n g f o r c e d to put their c h i l d r e n into care at great cost to society because the M i n i s t r y for C h i l d r e n a n d F a m i l i e s cannot p r o v i d e sufficient service to keep the c h i l d at h o m e w i t h the current l e v e l o f subsidization. C u r r e n t l y , professionals i n the M i n i s t r y for C h i l d r e n a n d F a m i l i e s are o v e r w h e l m e d w i t h other serious p r o b l e m s s u c h as c h i l d abuse. T h e B . C . C o u n c i l o n A u t i s m stated, "It is i r o n i c that the M i n i s t r y for C h i l d r e n a n d F a m i l i e s m u s t p r o v i d e foster h o m e s to c h i l d r e n w h o s e families are unable to c o p e , but they are not o b l i g a t e d to p r o v i d e v i t a l services for disabled c h i l d r e n to r e m a i n i n their f a m i l y h o m e " ( B . C . C o u n c i l o n A u t i s m , 1998). O n a p o s i t i v e note, an ' A u t i s m A c t i o n P l a n ' has recently b e e n d e v e l o p e d i n B . C . b y the M i n i s t r y for C h i l d r e n a n d F a m i l i e s i n c o n j u n c t i o n w i t h the M i n i s t r y o f E d u c a t i o n . T h i s project is intended to i n c l u d e a variety o f other M i n i s t r i e s s u c h as H e a l t h , H u m a n R e s o u r c e s , a n d A d v a n c e d E d u c a t i o n as w e l l as the A u t i s m S o c i e t y o f B . C .  (Garside,  1998). T h e a i m is to d e v e l o p an e n c o m p a s s i n g p l a n to solve the issues related to a u t i s m w i t h i n a f r a m e w o r k o f services to c h i l d r e n and y o u t h w i t h special needs. Important areas that are g o i n g to i n c o r p o r a t e d into the p l a n include: D i a g n o s i s a n d A s s e s s m e n t ; E a r l y Intervention P r o g r a m s ; S c h o o l a n d E d u c a t i o n ; and T r a n s i t i o n to A d u l t h o o d a n d A d u l t Services. In essence, families such as this require a proactive, solution - oriented a p p r o a c h w h i c h focuses o n f a m i l y strengths a n d capabilities i n a w a y that supports a n d strengthens  102  their f a m i l y f u n c t i o n i n g styles. In contrast to treatment strategies that d w e l l o n the p r o b l e m s , m o r e attention s h o u l d be directed to future possibilities (Dunst, T r i v e t t e , & D e a l , 1988). T o help families reduce tension, m a n a g e conflicts, a n d meet their d e m a n d s and needs, a p r o m o t i o n a p p r o a c h is h e l p f u l . " H e l p i n g is the act o f p r o m o t i n g a n d s u p p o r t i n g f a m i l y f u n c t i o n i n g i n a w a y that enhances the a c q u i s i t i o n o f c o m p e t e n c i e s that p e r m i t a greater degree o f intrafamily control over subsequent activities (Dunst, T r i v e t t e , & D e a l , 1988). Implications for F u t u r e R e s e a r c h Patterns o f interaction over the l o n g t e r m c o u l d lead to v a l u a b l e insights as to h o w these i n d i v i d u a l s have endured the obstacles o v e r time. It w o u l d be interesting to p e r f o r m this study i n ten years to see i f i n fact these families have attained feelings o f integration and e m o t i o n a l n o r m a l i z a t i o n . In the future, m o r e relational a n d explanatory research methods m i g h t be e m p l o y e d . H o w e v e r , at present, because there is m i n i m a l or n o research i n this area, exploratory, descriptive, a n d formulative approaches are appropriate. M y thesis m a r k s a b e g i n n i n g . A n investigation into the lives o f i m m i g r a n t families s h o w e d that their challenges related to b e i n g parents rather than b e i n g i m m i g r a n t s . T h i s m i g h t h a v e b e e n a result o f the questions asked i n the interviews. H e n c e , their experiences m a y not be d i s s i m i l a r to those f o u n d i n other C a n a d i a n families l i v i n g w i t h autism. F u t u r e research m i g h t be carried out i n an effort to c o m p a r e the experiences o f a C a n a d i a n f a m i l y to that o f a n i m m i g r a n t f a m i l y l i v i n g w i t h autism. Perhaps because the interviews took p l a c e w i t h i n six m o n t h s o f the parents' arrival to C a n a d a , they have b e e n o c c u p i e d w i t h m o r e p r e s s i n g c h i l d care issues, a n d i m m i g r a t i o n issues w i l l f o l l o w . It w o u l d be interesting to  103  p e r f o r m another narrative study i n the future under different contextual circumstances. F o r e x a m p l e , i f the parents w o u l d have b e e n i n C a n a d a for a longer p e r i o d , a n d their perceptions m i g h t differ. A s w e l l , the systems a r o u n d them s u c h as the M i n i s t r y for C h i l d r e n a n d F a m i l i e s , education, and other c o m m u n i t y organizations m i g h t be subject to different influences. A s a result, the content o f the narratives m i g h t differ as w e l l . It is important to note that the families w h o participated i n this study were able to speak E n g l i s h . C o n s e q u e n t l y , they m i g h t have b e e n i n a stronger p o s i t i o n to access the services a r o u n d t h e m . O n the other h a n d , families w i t h l i m i t e d E n g l i s h p r o f i c i e n c y c o u l d be seriously disadvantaged, as cross language c o m m u n i c a t i o n c a n be frustrating. A language barrier c o u l d cause a f a m i l y to feel m o r e segregated. A future research study w h i c h establishes a collaborative alliance w i t h a f a m i l y w i t h l i m i t e d E n g l i s h language m a y h e l p caregivers understand their subjective experience and eventually encourage p e r s o n a l authority a n d a u t o n o m y a m o n g n o n - E n g l i s h speaking i m m i g r a n t s . O n c e a r i c h understanding o f the lives o f i m m i g r a n t families has b e e n p o r t r a y e d , future research m i g h t be u s e d to elucidate the relationships b e t w e e n hardiness, s o c i a l support, a n d stress s y m p t o m s apparent i n i m m i g r a n t families. F u r t h e r m o r e , l o n g i t u d i n a l research m i g h t h e l p to c l a r i f y the d e v e l o p m e n t o f certain skills a n d s o c i a l support o v e r time. C o m p a r i s o n s to parents o f c h i l d r e n w i t h other disabilities a n d to parents o f t y p i c a l c h i l d r e n m i g h t be h e l p f u l too. V a r i a b l e s that relate to the severity o f the c h i l d ' s d i s o r d e r c o u l d be d i s c u s s e d i n the future s u c h as the amount a n d intensity o f the m a l a d a p t i v e b e h a v i o r s a n d other f a m i l y variables s u c h as marital satisfaction a n d internal conflict. Indeed, b y attempting to understand s o m e o f the c o m p l e x i t i e s i n i m m i g r a n t parental c o p i n g styles, professionals and other social services w i l l be better e q u i p p e d to  104  d e s i g n and i m p l e m e n t services that m o r e effectively meet the needs o f i m m i g r a n t f a m i l i e s w i t h c h i l d w i t h autism. A s w e m o v e towards the twenty first century, h e l p i n g practices, theories, a n d p o l i c i e s w i t h families o f diverse b a c k g r o u n d s must c o n s i d e r diverse f a m i l y c o p i n g styles; relationships between the f a m i l y and the c o m m u n i t y , a n d the capacities o f families to "sustain, s u r v i v e , a n d thrive i n a w o r l d that often does not support their w e l l b e i n g " ( W e i c k & Saleebey, 1995). M y study, b y m a k i n g their v o i c e s h e a r d , w i l l h e l p national a n d l o c a l p o l i c i e s develop "enabling niches" for i m m i g r a n t families l i v i n g w i t h a c h i l d w i t h a u t i s m a n d create environments i n w h i c h these families feel m o r e competent a n d c o m f o r t a b l e ( B r o w e r , 1988; W e i c k & Saleeby,1995).  105  Summary T h e ultimate a i m o f m y study was to understand the lives o f i m m i g r a n t families l i v i n g w i t h a c h i l d w i t h autism. F a m i l i e s were p r i m a r i l y c o n c e r n e d about their c h i l d w i t h autism as c o m p a r e d to the issues pertaining to i m m i g r a t i o n . In this narrative study, three families shared c o m m o n contextual factors s u c h as: the quality o f relationships w i t h i n and outside o f the f a m i l y , the nature o f social supports, c o m m u n i t y acceptance, f i n a n c i a l obstacles, a n d the availability and utilization o f supportive services were revealed i n the interviews. M o r e o v e r , s i m i l a r p s y c h o l o g i c a l , social, and interpersonal characteristics o f the i m m i g r a n t parents, f a m i l y units, and c o m m u n i t i e s were h i g h l i g h t e d .  T h e stories o f the i m m i g r a n t families l i v i n g w i t h autism i n this study consisted o f a set o f v e r y diverse a n d v a r i e d experiences and circumstances. V a r i a b l e s s u c h as the degree o f autism, the n u m b e r o f siblings, access to f a m i l y resources, s o c i a l support, a n d f a m i l i a l f u n c t i o n i n g styles a l l p l a y e d a role i n the telling o f their stories; h o w e v e r , m a n y ^ similarities existed b e t w e e n the families i n terms o f general topics a n d areas o f d i s c u s s i o n . M a n y issues were consistent f r o m f a m i l y to f a m i l y ; h o w e v e r , their m e a n s o f d e a l i n g a n d c o p i n g w i t h different stressors differed. Immigrant parents c a r i n g for a c h i l d w i t h autism d i s c u s s e d serious issues that were prevalent i n their countries o f o r i g i n a n d i n C a n a d a . T h e y were w o v e n throughout their pasts, existed i n the present, a n d w i l l perhaps continue i n the future.  N u m e r o u s themes emerged f r o m the narratives, a n d they were a n a l y z e d i n terms o f relationships. B r o n f e n b r e n n e r ' s systems-ecological m o d e l l o o k s at the f a m i l y e m b e d d e d as a s y s t e m o f nested structures. F a m i l y functioning styles s u c h as the l e v e l o f c o m m i t m e n t , sense o f purpose, c o m m u n i c a t i o n , values, flexibility, a l l o c a t i o n o f time,  106  c o n g r u e n c e , c o p i n g strategies, o p t i m i s m , balance, and p r o b l e m s o l v i n g abilities w e r e  studied. A s w e l l , relationships w i t h social support systems a n d f a m i l y resources s u c h as  finances were also i n c l u d e d i n the analysis. F i n a l l y , the themes were d i s c u s s e d i n the  context o f e m o t i o n a l n o r m a l i z a t i o n , a term g i v e n to a f a m i l y ' s ultimate g o a l to integrate  into their c o m m u n i t i e s .  107  References  A p p l e t o n , W . S . (1994). Mistreatment o f patients' families b y psychiatrists. A m e r i c a n J o u r n a l o f P s y c h i a t r y , 131, 655-657.  A p o l l o n i , A . , & Triest, G . (1983). Respite services i n C a l i f o r n i a : Status a n d r e c o m m e n d a t i o n s for i m p r o v e m e n t . M e n t a l Retardation, 21, 240-243. B e c v a r , D . S . & B e c v a r , R J . (1996). F a m i l y process. F a m i l y T h e r a p y : A s y s t e m i c integration, (pp. 122-140). T o r o n t o : S i m o n & Schuster. B . C . C o u n c i l o n A u t i s m (1998). T h e crisis i n services f o r p e o p l e w i t h a u t i s m i n British Columbia. Vancouver, B . C . B e a v e r s , J . , H a m p s o n , R . , H u l g u s , Y . , & B e a v e r s , W . (1986). C o p i n g i n f a m i l i e s w i t h a retarded c h i l d . F a m i l y Process, 25, 365-378. B e l s k y , J . (1984). T h e determinants o f parenting: A process m o d e l . C h i l d D e v e l o p m e n t , 55, 83-96. Best, S., B l a c h e r , J . , & R o u s e y , A . (1992). M o t h e r s ' and fathers' perceptions o f stress a n d c o p i n g w i t h c h i l d r e n w h o have severe disabilities. A m e r i c a n J o u r n a l o n M e n t a l Retardation, 97 (1), 99-109.  B o r g e n , A . W . , & Y o u n g , R . A . (1990). M e t h o d o l o g i c a l approaches to the study o f career. (pp71-86). N Y : Praeger Publishers.  B o s c h , L . A . (1996). N e e d s o f parents o f y o u n g c h i l d r e n w i t h d e v e l o p m e n t a l delay: Implications for s o c i a l w o r k practice. F a m i l i e s i n Society: T h e Journal o f C o n t e m p o r a r y H u m a n Services, 65, 477-486.  B r e s l a u , N . , & D a v i s , G . C . (1986). C h r o n i c stress and m a j o r depression. A r c h i v e s o f G e n e r a l P s y c h i a t r y , 43, 309-314.  108  B r i s t o l , M . M . , & S c h o p l e r , E . (1984). A d e v e l o p m e n t a l perspective o n stress a n d c o p i n g i n families o f c h i l d w i t h autism. Severely h a n d i c a p p e d y o u n g c h i l d r e n a n d their families: R e s e a r c h i n R e v i e w , (pp. 91-141), O r l a n d o F L : A c a d e m i c Press.  B r o w e r , A . (1988). C a n the e c o l o g i c a l m o d e l guide social w o r k practice? S o c i a l S e r v i c e R e v i e w , 62, 411-429. B u t l e r , E . , & L e i , T J . , & M c A l l i s t e r , R . (1973). Patterns o f social interaction a m o n g families o f b e h a v i o r a l l y retarded children. Journal o f M a r r i a g e a n d the F a m i l y , 35, 93-100. C a r l s o n , C . (1996). C h a n g i n g the s c h o o l culture toward integrated services. S y s t e m s change t o w a r d integrated services (pp. 225-249). T X : H a w t h o r n e Press. C a s e y , K . (1995-96). T h e new narrative research i n education. R e v i e w o f R e s e a r c h i n E d u c a t i o n , 211-253. W a s h i n g t o n , D . C . : A m e r i c a n E d u c a t i o n a l R e s e a r c h Association. C i r i l l o , S. & Sorrentino, A . M . (1986). H a n d i c a p a n d rehabilitation: T w o types o f i n f o r m a t i o n upsetting f a m i l y organization. F a m i l y Process, 25,  283-292.  C o c h r a n , M . (1992). Parent empowerment: D e v e l o p i n g a c o n c e p t u a l f r a m e w o r k .  F a m i l y S c i e n c e s R e v i e w , 5, 3-21.  C o h e n , S., & W i l s , T . A . (1985). Stress, s o c i a l support & the b u f f e r i n g hypothesis. P s y c h o l o g i c a l B u l l e t i n , 98,  310-357.  C o h e n , D . S . , F r i e d r i c h , W . N . , & W i l t u r n e r , L . T . (1985). C o p i n g resources a n d p a r e n t i n g retarded c h i l d r e n . A m e r i c a n Journal o f M e n t a l D e f i c i e n c y ,  90, 130-139.  109  C o l l i n s , B . , & C o l l i n s , T . (1990). Parent - professional relationships i n the treatment o f seriously e m o t i o n a l l y disturbed c h i l d r e n a n d adolescents. S o c i a l W o r k , 35, 522-527.  C o n n e l l y , F . M . & C l a n d i n i n , D . J . (1990, June-July). Stories o f experience a n d narrative i n q u i r y . E d u c a t i o n a l Researcher, 2-14. C o o k , J . J . (1963). D i m e n s i o n a l analysis o f c h i l d - r e a r i n g attitudes o f parents o f h a n d i c a p p e d c h i l d r e n . A m e r i c a n Journal o f M e n t a l D e f i c i e n c y , 8, 354-361. C r o s s , S. (1995). Self-construals, c o p i n g , a n d stress i n cross-cultural adaptation. J o u r n a l o f C r o s s - C u l t u r a l P s y c h o l o g y , 26 (6), 673-697.  C u m m i n g s , S . T . , B a y l e y , H . C . , & R i e , H . E . (1966). Effects o f the c h i l d ' s d e f i c i e n c y o n the mother: A study o f mothers o f m e n t a l l y retarded, c h r o n i c a l l y i l l , a n d neurotic c h i l d r e n . A m e r i c a n Journal o f O r t h o p s y c h i a t r y , 36, 595-608. C u t l e r , B . C . , & K o z l o f f , M . A . (1987). L i v i n g w i t h autism: Effects o n families a n d f a m i l y needs., H a n d b o o k o f autism and pervasive d e v e l o p m e n t a l disorders, (pp. 513527). N Y : W i l e y .  de A n d a , D . (1984). B i c u l t u r a l socialization: Factors affecting the m i n o r i t y experience. S o c i a l W o r k , 29  (2), 101-107.  d e C h a r m s , R . (1976). E n h a n c i n g m o t i v a t i o n : C h a n g e i n the c l a s s r o o m . N Y , Irvington.  D e C h i l l o , N . (1993). C o l l a b o r a t i o n between social workers a n d families o f patients w i t h m e n t a l illness. F a m i l i e s i n Society: T h e Journal o f C o n t e m p o r a r y H u m a n Services, 2, 104-115.  D e M y e r , M . (1979). Parents and c h i l d r e n i n autism. N e w Y o r k : W i l e y .  110  D o n e n b e r g , G . , & B a k e r , B . (1993). T h e impact o f y o u n g c h i l d r e n w i t h  externalizing behaviors o n their families. J o u r n a l o f A b n o r m a l C h i l d P s y c h o l o g y , 21 (2),  179-197. D u n s t , C , Trivette, C , & D e a l , A . (1988). P r i n c i p l e s and e n a b l i n g a n d e m p o w e r i n g families: G u i d e l i n e s for practice. C a m b r i d g e , M A : B r o o k l i n e . D y c h e , A . , & Z a y a s , L . (1995). T h e value o f curiosity a n d naivete for the cross cultural psychotherapist. F a m i l y Process, 34, 389-398. E l l i s , J . (1994). N a r r a t i v e inquiries w i t h c h i l d r e n a n d y o u t h : A n i n t r o d u c t i o n to narrative i n q u i r y . T e a c h i n g from U n d e r s t a n d i n g (pp. 35-49). A B : In press E r i c k s o n , M . T . (1968). M M P I C o m p a r i s o n s between parents o f y o u n g e m o t i o n a l l y disturbed c h i l d r e n a n d mentally retarded c h i l d r e n . J o u r n a l o f C o n s u l t i n g C l i n i c a l P s y c h o l o g y , 32, 701-706. F a c t o r , D . C . , F r e e m a n , N . , & P e r r y , A . (1990). B r i e f report: Stress, s o c i a l support, and respite care use i n families w i t h c h i l d w i t h autism. Journal o f A u t i s m a n d D e v e l o p m e n t a l D i s o r d e r s , 20  (1), 139-146.  F a l i c o v , C J . (1995). T r a i n i n g to think culturally: A m u l t i d i m e n s i o n a l c o m p a r i t i v e f r a m e w o r k . F a m i l y P r o c e s s , 34,  373  -398.  F a r b e r , B . (1975). F a m i l y adaptations to severely m e n t a l l y retarded c h i l d r e n . T h e m e n t a l l y retarded a n d society: A social science perspective. B a l t i m o r e : U n i v e r i s i t y P a r k Press.  F a r r a n , D . C . , M e t z g e r , J . , & S p a r l i n g , J . (1986). Immediate and c o n t i n u i n g adaptations i n parents o f h a n d i c a p p e d children: A m o d e l a n d an illustration. F a m i l i e s o f h a n d i c a p p e d persons, (pp. 143-156). B a l t i m o r e , M D : B r o o k e s .  Ill F i n e , M . & C a r l s o n , C . (1992). T h e h a n d b o o k o f f a m i l y - s c h o o l intervention. A u s t e n , T e x a s : P r e n t i c e - H a l l Inc. F o n g , L . , & W i l g o s h , L . (1992). C h i l d r e n w i t h autism a n d their families: A literature review. C a n a d i a n Journal o f S p e c i a l E d u c a t i o n , 8 (1), 43-53 F u r n h a m , A . (1988). T h e adjustment o f sojourners. C r o s s - c u l t u r a l adaptation: current approaches (pp. 42-61). N e w b u r y P a r k , C A : Sage. F u r n h a m , A . , & B o c h n e r , S. (1986). C u l t u r e shock: P s y c h o l o g i c a l reactions to u n f a m i l i a r environments. N Y : M e t h u e n . G a l l a g h e r , J . (1983). F a m i l i e s o f h a n d i c a p p e d children: Sources o f stress a n d its a m e l i o r a t i o n . E x c e p t i o n a l C h i l d r e n , 8, 10-19.  G a r s i d e , R . (1998, O c t o b e r ) . T h e A u t i s m A c t i o n P l a n . A u t i s m B . C . Newsletter, 6,  2. G i l l , M . , & H a r r i s , S. (1991). H a r d i n e s s and social support as predictors o f p s y c h o l o g i c a l d i s c o m f o r t i n mothers o f c h i l d r e n w i t h autism. Journal o f A u t i s m a n d D e v e l o p m e n t a l D i s o r d e r s , 21 (4), 407-416. G a n e l l e n , R . J . , & B l a n e y , P . H . (1984). H a r d i n e s s a n d social support as moderators o f life stress. J o u r n a l o f Personality a n d S o c i a l P s y c h o l o g y ,  4 7 , 156-163.  G o l d , N . , & B o g o , M . (1992). S o c i a l w o r k research i n a m u l t i c u l t u r a l society: challenges a n d approaches. Journal o f M u l t i c u l t u r a l S o c i a l W o r k , 2 (4),  7-22.  G r u n e b a u m , H . (1986). F a m i l i e s , patients, and mental health professionals: t o w a r d a n e w c o l l a b o r a t i o n . A m e r i c a n Journal o f P s y c h i a t r y , 143, 1420-1421.  H a n s o n , M . J . (1990). H o n o r i n g the cultural diversity o f families w h e n gathering data. T o p i c s i n E a r l y C h i l d h o o d S p e c i a l E d u c a t i o n , 10 (1), 113-131.  112  H a n s o n , M . J . , & H a n l i n e , M . F . (1990). Parenting a c h i l d w i t h a disability: A  l o n g i t u d i n a l study o f parental stress and adaptation. Journal o f E a r l y Intervention, 14 (3),  234-248. H a r t , C A . (1993). A parents guide to autism: A n s w e r s to the m o s t c o m m o n questions. N Y : S i m o n & Schuster. H a t f i e l d , A . B . , & L e f l e y , H . P . (1987). F a m i l i e s o f the m e n t a l l y i l l : c o p i n g a n d adaptation. N Y : G u i l f o r d Press. H e e N a h , K . (1993). P e r c e i v e d p r o b l e m s a n d service d e l i v e r y for K o r e a n i m m i g r a n t s . S o c i a l W o r k , 38  (3), 291-296.  H i r a y a m a , H . , & C e t i n g o k , M . (1988). E m p o w e r m e n t : A social w o r k a p p r o a c h for asian i m m i g r a n t s . S o c i a l C a s e w o r k : T h e J o u r n a l o f C o n t e m p o r a r y S o c i a l W o r k , 69  (1),  41-47.  H o f f m a n - R i e m , C . (1980) A d o p t i v e parenting & the n o r m o f f a m i l y e m o t i o n a l i t y  analysis o f two illustrative research studies. In T h e Nature o f research (pp. 17-23). N Y :  G u i l f o r d Press.  H o l r o y d , J . , & M c A r t h u r , D . (1976). M e n t a l retardation a n d stress o n the parents: A contrast b e t w e e n D o w n ' s s y n d r o m e and c h i l d h o o d autism. A m e r i c a n Journal o f M e n t a l D e f i c i e n c y , 80,  431-436.  Jensen, S . M . (1992). A descriptive study o f the experiences o f g r o w i n g up w i t h a s i b l i n g w h o has autism. U n p u b l i s h e d master's thesis, U n i v e r s i t y o f B r i t i s h C o l u m b i a , Vancouver, B C . Jones, D . (1995, O c t o b e r ) . S w i m m i n g i n the mainstream. C h a t e l a i n e , 59, 122-126.  113  K e s s l e r - H a r r i s , A . & Y a n s - M c L a u g h l i n . (1978). E u r o p e a n i m m i g r a n t groups.  A m e r i c a n ethnic groups, (pp. 107-138), W a s h i n g t o n , D . C : U r b a n Institute.  K o p p , C . B . & K r a k o w , J . B . (1982). T h e c h i l d : D e v e l o p m e n t i n a social context.  N Y : Addison-Wesley. K r a u s s , M . W . (1993). C h i l d - r e l a t e d and parenting stress: Similarities a n d differences b e t w e e n mothers and fathers o f c h i l d r e n w i t h disabilities. A m e r i c a n J o u r n a l o n M e n t a l Retardation, 97 (4), 393-404. K v a l e , S. (1996). Interviews. U n i t e d K i n g d o m : Sage P u b l i c a t i o n s . L a m b , H . R . , & O l i p h a n t , E . (1978). S c h i z o p h r e n i a t h r o u g h the eyes o f families. H o s p i t a l a n d C o m m u n i t y P s y c h i a t r y , 9,  803-806.  L a n g e v i n , L . (1998, January). Treatment profile. A u t i s m B C Newsletter, 6, 2. L a z a r , M . (1988). W o r k i n g w i t h families o f c h r o n i c a l l y m e n t a l l y i l l i n d i v i d u a l s : A p s y c h o e d u c a t i o n a l a p p r o a c h to families featuring f a m i l y a n d professional partnerships. N Y : Haworth.  L e e , J . A . B . (1994). T h e e m p o w e r m e n t a p p r o a c h to social w o r k practice. N Y : C o l u m b i a U n i v e r i s i t y Press.  L o , M . (1998, January). A u t i s m and the C h i n e s e culture. A u t i s m B C N e w s l e t t e r ,  6,7. M c C a l l i o n , P . , & T o s e l a n d , R . (1993). E m p o w e r i n g families o f adolescents a n d  adults w i t h d e v e l o p m e n t a l disabilities. F a m i l i e s i n Society: T h e J o u r n a l o f C o n t e m p o r a r y  H u m a n Services, 37, 579-587.  114  M c D o n a l d , T . , C o u c h o n n a l , G . & E a r l y , T . (1996). T h e i m p a c t o f m a j o r events o n the l i v e o f f a m i l y caregivers o f c h i l d r e n w i t h disabilities. F a m i l i e s i n Society: T h e J o u r n a l o f C o n t e m p o r a r y H u m a n Services, 10, 502-514. M c M i l l a n , J . & S c h u m a c h e r , S. (1997). R e s e a r c h i n education (4th E d . ) , N Y : Longman.  M e s i b o v , G . B . , & S c h o p l e r , E . (1984). T h e effects o f autism o n the f a m i l y . N Y :  Plenum. M i s h l e r , E . G . (1990). V a l i d a t i o n i n i n q u i r y - g u i d e d research: T h e role o f exemplars i n narrative studies. H a r v a r d E d u c a t i o n a l R e v i e w , 60 (4), 4 1 5 - 4 4 1 . M i s h l e r , E . G . (1986). R e s e a r c h interviewing: C o n t e x t a n d narrative. L o n d o n : H a r v a r d U n i v e r s i t y Press. O l s o n , E . H . , R u s s e l l , C . S . , & Sprenkle, D . H . (1983). C i r c u m p l e x m o d e l o f m a r i t a l and f a m i l y systems. F a m i l y Process, 22, 32-33.  P a l y s , T . (1997). R e s e a r c h decisions: Quantitative & qualitative perspectives. T O :  Harcourt Brace.  P e s h k i n , A . (1992). T h e personal d i m e n s i o n : R a p p o r t a n d subjectivity. B e c o m i n g  qualitative researchers. A n introduction (pp.93-106). W h i t e P l a i n s , N Y : L o n g m a n .  P e s h k i n , A . (1985). V i r t u o u s subjectivity: i n the participant-observers eyes. In D .  B e r g & K . S m i t h , E x p l o r i n g c l i n i c a l m e t h o d s for s o c i a l research, (pp. 267-278). B e v e r l y  H i l l s : Sage  P i n d e r h u g h e s , E . B . (1989). U n d e r s t a n d i n g race, ethnicity, a n d p o w e r : T h e k e y to  efficacy i n c l i n i c a l practice. N Y : T h e F r e e Press.  115  Portes, A . , & R u m b a u t , R . G . (1990). I m m i g r a n t A m e r i c a . B e r k l e y : U n i v e r s i t y o f  C a l i f o r n i a Press.  P o t a s z n i k , H . , & N e l s o n , G . (1984). Stress a n d social support: T h e b u r d e n  e x p e r i e n c e d b y the f a m i l y o f a m e n t a l l y i l l person. A m e r i c a n J o u r n a l o f C o m m u n i t y  P s y c h o l o g y , 12 (5), 589-606. P u g h , D . (1998, A u g u s t ) . A B A a n d the s c h o o l system. A u t i s m B . C . Newsletter, 6,  1-7. S a l i s b u r y , C . L . , & Intagliata, J . (1986). R e s p i t e care: S u p p o r t for persons w i t h d e v e l o p m e n t a l disabilities a n d their families. B a l t i m o r e : P a u l H . B r o o k e s . S h e r m a n , B . R . , & C o c o z z a , J . J . (1984). Stress i n families o f the d e v e l o p m e n t a l l y disabled: A literature r e v i e w o f factors affecting the d e c i s i o n to seek o u t - o f - h o m e placements. F a m i l y R e l a t i o n s , 33, 95-103. S o n t a g , J . , & Schacht, R . (1993). F a m i l y diversity a n d patterns o f service u t i l i z a t i o n i n early intervention. Journal o f E a r l y Intervention, 17 (4), 431-444. S t r i c k l a n d , L . (1994). A u t o b i o g r a p h i c a l i n t e r v i e w i n g a n d narrative analysis: A n a p p r o a c h to p s y c h o s o c i a l assessment. C l i n i c a l S o c i a l W o r k J o u r n a l , 22  (1), 2 7 - 4 1 .  Strier, D . (1996). C o p i n g strategies o f i m m i g r a n t parents: D i r e c t i o n s for f a m i l y therapy. F a m i l y Process, 35, 363-375.  S u e , D . W . (1981). C o u n s e l i n g the culturally different: T h e o r y a n d practice. Toronto: John Wiley.  S u l l i v a n , R . (1979). T h e burn-out s y n d r o m e . Journal o f A u t i s m a n d D e v e l o p m e n t a l D i s o r d e r s , 9, 111-117.  116  Test, M . A . , & Stein, L . I . (1980). Alternatives to mental hospital treatment: III. S o c i a l C o s t . A r c h i v e s o f G e n e r a l P s y c h i a t r y , 37, 409-412. V a n M a a n e n , J . (1988). T a l e s o f the field: O n w r i t i n g ethnography. C h i c a g o : U n i v e r s i t y o f C h i c a g o Press.  W e i c k , A . & Saleebey, D . (1995). S u p p o r t i n g f a m i l y strengths: O r i e n t i n g p o l i c y and practice t o w a r d the 21st century. F a m i l i e s i n Society: T h e J o u r n a l o f C o n t e m p o r a r y H u m a n Services, 3, 141-149.  W e r r b a c h , G . B . (1996). F a m i l y strengths-based intensive c h i l d case m a n a g e m e n t . F a m i l i e s i n S o c i e t y : T h e J o u r n a l o f C o n t e m p o r a r y H u m a n Services, 4, 216-226. W i k l e r , L . (1981). C h r o n i c stresses o f families o f m e n t a l l y retarded c h i l d r e n . F a m i l y R e l a t i o n s , 30, 281-288. W i l l i s , S. (1994, O c t o b e r ) . M a k i n g schools m o r e inclusive. C u r r i c u l u m U p d a t e ,  1-8.  1 17  Appendix A  Bronfenbrenner's Ecological Model (Kopp & Krakow, 1982)  119  Consent: I  understand that m y participation i n this study is entirely v o l u n t a r y a n d that I  m a y refuse to participate or w i t h d r a w f r o m the study at any time without j e o p a r d y to m y present lifestyle. I h a v e r e c e i v e d a c o p y o f this consent f o r m for m y o w n records.  Subject Signature  Date  Signature o f a W i t n e s s  Date  120  Appendix C  Letter o f Information  F e b r u a r y 9,  1998.  D e a r Parents; T h e p u r p o s e o f m y study is to understand the experiences o f i m m i g r a n t parents c a r i n g for a c h i l d w i t h autism. B y attempting to understand s o m e o f the c o m p l e x i t i e s ,  professionals  a n d other s o c i a l services w i l l b e better e q u i p p e d to d e s i g n a n d i m p l e m e n t services that w o u l d effectively meet the needs o f i m m i g r a n t families w i t h c h i l d r e n w i t h autism. I intend to interview parents o f c h i l d r e n w i t h autism w h o are presently permanent residents o f C a n a d a a n d h a v e c o m e f r o m another country. Participants w o u l d be r e q u i r e d to share their experiences i n an interview (approximately one hour) w h i c h w i l l be a u d i o taped and subsequently transcribed. Participants w i l l r e m a i n a n o n y m o u s . T h a n k y o u for y o u r consideration.  Sincerely,  Glenda Wallace  

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