Hannah Anokye dissertation by ICSW

Institute for Clinical Social Work

West African Mothers’ Experience of an ASD Child in the US

A Dissertation Submitted to the Faculty of the Institute for Clinical Social Work in Partial Fulfillment for the Degree of Doctor of Philosophy

By Hannah Anokye

Chicago, Illinois January, 2021

Abstract

This phenomenological study explores the lived experiences of five immigrant mothers from West Africa and the impact of caring for their child with autism. This study presents new insight into how selfobject needs of the mothers continue throughout their journey of caring for their child diagnosed with autism spectrum disorder. Offering a psychodynamic approach to understanding this cultural group deepens the understanding of oneself. There are four major findings: 1. Personal and emotional experiences. Mirroring selfobject needs of the mothers were met through their emotional and relational experience with their child and the West African community. 2. Twinship and culture as meeting selfobject needs. The role of culture as meeting selfobject experience led participants to feel profoundly understood. 3. Traditional and religious beliefs are interrelated. 4. Professional roles and parents’ advocacy. Respect for professionals and people in position of authority is an implicit belief system that served them well in their adaptation.

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For my mother and father, husband, and girls.

Acknowledgments

This project could not have been possible without the guidance of my committee chair Dr. Jacquelyn Vincson and Dr. Judith Aronson for their sincere guidance and help for completing this project. Thanks to the rest of my dissertation committee for their insightful comments. I am deeply indebted to my writing coach Millicent Rey for her passionate encouragement and support. HA

Table of Contents

Page Abstract…………….……………………………………………………………………iii Acknowledgement….…………………………………………………………………….v List of Tables………..…………………………………………………………………....x Chapter I. Introduction……………………………………………………….……………1 General Statement of Purpose Significance of the Study to Clinical Social Work Problem Statement and Objective Study Objectives Theoretical and Conceptual Framework Research Question Statement of Assumption II. Literature Review…………………………………………………………….9 Introduction The West African Immigrant Community Cultural Differences Parenthood as a Role Parents with Disabled Children vi

Table of Contents—Continued

The Role of Traditional West African Mothers West African Immigrant Mothers and Their Parenting Experience The Impact of ASD Diagnosis on West African Mothers Statement of Relevant Knowledge or Theory and Review of Significant Literature Theoretical and Conceptual Framework of the Study Self-Psychology Theory Overview The Mother and Child Experience of Each Other Twinship Concept in Parenting a Child Diagnosed with ASD Summary Theoretical and Operational Definitions of Major Concepts Chapter

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III. Methodology…………………………………………...……………………41 Introduction Sampling and Recruitment Rationale for Qualitative Research Design The Research Sample Recruitment Screening Demographic Information Data Collection Method and Material vii

Table of Contents—Continued

Procedures for Data Analysis Statement on Protecting the Rights of Human Subjects Conclusion Chapter

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IV. Results………………………………………………………………………64 Introduction Overarching Theme I: Personal and Emotional Responses Concerns About Child’s Development Participants’ Knowledge About ASD Impact of ASD on the Mothers Marital and Family Relationship Overarching Theme II: Participants’ Cultural Beliefs Overarching Theme III: Traditional and Religious Beliefs Overarching Theme IV: Understanding Professional Role and Partnership Summary of Results V. Discussion and Conclusions……………………………………………………99 Discussion Introduction to Findings Finding 1: Personal and Emotional Responses Delayed Life Plans Finding 2: Cultural Beliefs viii

Table of Contents—Continued

Finding 3: Traditional and Religious Beliefs Finding 4: Professional Roles and Parents Advocacy Conceptual Model Developed Theoretical Frame Twinship and Culture as Meeting Selfobject Needs Reflection West African Immigrant Fathers Validity and Limitation of the Study Implication for Social Work Practice Suggestion for Future Research Appendices

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A. Resume……………………………………………..……………………….134 B. Recruitment Flyer……………….…………………………………………138 C. Consent Form…………………..…………………………………………..140 D. Interview Questions…………………………………….…………………..144 References……………………....….…………………………………………..148

List of Tables

Table

Page 1. Demographic of Sample Mothers…...………………..………..……...64 2. Profile of Participants..……...………………………...………..……..71

Chapter I

Introduction General Statement of Purpose

ASD researchers argue that it is important to study ASD in families of minority cultural groups because of the disparities that are likely to occur between the mainstream American culture and the minority groups and how they deal with the diagnosis (Dychess, Wilder, Sudweeks, & Algozzine, 2004). To understand the experiences of West African mothers and the impact of the ASD diagnosis the study used a qualitative analysis and phenomenological methodology to explore the everyday experiences of the mothers, thereby giving a thorough understanding of the everyday life of the mothers raising these children. To understand the experiences of these mothers and the impact of the ASD diagnosis this study used a phenomenological approach. Phenomenology, largely developed by Husserl, focuses on understanding the human experience and how it is perceived and explored by the individual in a phenomenological event (Sheehan, 2014, Lester, 1999, & Moustakas, 1994). Thus, the primary reason for this study was to reflect on the lived experiences of participants as they shared these experiences. The National Association of Parents (NAP, 2016) defines parenting as the act of providing emotional, psychological, social and other forms of caring to a child for

promoting the healthy growth of a child. Parents are the primary caregivers of children in the home and they are among the most important people in the lives of young children (NAP, 2016). According to the International Encyclopedia of the Social and Behavioral Sciences (2001), parenting requires time and special skills, maintaining a delicate balance between allowing the child to be a child without interfering with the child’s normal course of development while also providing high levels of supervision and medical management.

Significance of the Study to Clinical Social Work

When a parent learns that their child has a developmental disorder, such as ASD, their response to this diagnosis and parenting requirement can be financially, physically, emotionally, and psychologically challenging. This study was conducted to uncover the supports, resources, challenges, and strengths of the parents and to provide helpful information for clinicians who currently work with patients from West Africa. Currently, there are no known studies about the West African population and their parenting experiences of children diagnosed with ASD in the United States. Due to the limited information about this group, the study provides a contribution to the body of knowledge and the literature on this particular phenomenon and group of caregivers as well as elucidating the meaning of caring for a child with ASD from the parent’s perspective. The study gives a multifaceted approach to the personal, emotional, and therapeutic understanding of working with immigrant parents from West Africa who are providing care for their children diagnosed with ASD.

Furthermore, the current study determines what could be applied to social work education, training, and research in gaining insight into this underrepresented group. The study will help the field of clinical social work by (a) bringing awareness to the larger West African community about what kind of supports are needed to care for their children with ASD, (b) promote learning opportunities for the larger community as members interact with each other, and (c) for clinicians to be aware of the ways these communities live and help educators, interest groups, community workers etc. in understanding the challenges, resiliency, and strengths of West African immigrant parents caring for their children with ASD in the United States. All such data are relevant in this study.

Problem Statement and Objective

Children with ASD experience many problems resulting from their inability to successfully communicate and interact with others. These problems vary depending on the severity of the disorder. For example, if a child lacks verbal communication, cognitive processing, and/or social skills, it may be hard for them to have conversations, learn to read or write, and follow directions. Other challenges include children’s inability to understand feelings, make and keep friendships, and share a common focus with others. These difficulties require a certain level of care from medical practitioners, educators, and particularly the parents of these children. In addition, children with ASD need advocates to help them negotiate their special needs from the wider world and parents are the point of contact to maximize the child’s development (Murray 2016, Terry 2016).

Caring for a child diagnosed with ASD can be challenging for any mother. This difficulty is compounded when mothers have immigrated to the United States from West Africa and have to care for their children diagnosed with ASD. Such challenges include but are not limited to cultural shock, lack of education, and relevant information to navigate the system. An immigrant may also risk communication barriers, lack of resources, lack of familiarity of the geography to accommodate a new culture and to sustain their new life. Additionally, the parents and their families face complications for negotiating newly adopted western cultural values and balancing traditional West African caregiving values. This acculturation such as learning the American accent, acquiring a taste for the food, dressing, and balancing the cultural expectation of parenthood is magnified by the West African immigrants who come to the United States and are raising children with ASD (Akhtar, 2014, & Lehti, et al., 2013). This study is needed because the number of West African immigrants has been increasing, specifically in places like New York, Boston, California, Minnesota, and Chicago since 1990 (Olivo, 2014) and there is limited research and knowledge about the parenting experiences of this group. Similarly, while the number of West Africans is increasing, there is a greater likelihood that clinical social workers may have to work with them in a number of capacities. Given that there is sparse research on this population regarding parenting children with ASD, it is clear that very little is known about them. The primary literature to date on ASD among African immigrant families is a study conducted by the state of Minnesota among Somali families (Minnesota Department of Health, 2009). In addition, the Minneapolis Somali Autism Spectrum Prevalence Project, under the auspices of the National Institute of Health (NIH), the Center for Disease

Control (CDC), and Autismspeaks.org completed a project and, in their findings, it was estimated that 1 in 32 Somali children ages 7-9 years were identified as having ASD in Minneapolis in 2010. So far, this has been the largest ASD project among immigrants of African descent. The researchers concluded that although there is a prevalence of ASD among Somali children in Minneapolis schools, the number of children affected is high compared to other ethnic groups (Hewitt et al., 2013). West African parents who have immigrated to the US and are caring for their children with ASD require investigation. This is because few studies have documented the ways in which ASD is understood across different immigrant groups. This lack of knowledge creates barriers for the parents whose children have been diagnosed with ASD. More so, there is the possibility of limited understanding and collaboration among practitioners in their encounter with these immigrant families and how differences in perspective may create barriers in treatment planning. This study is needed to help in increasing understanding and collaboration among this group and practitioners (Welterlin and LaRue, 2007).

Study Objectives

In order to better understand these immigrant mothers, the study focused on the lived experiences of the mothers who are caring for their child diagnosed with ASD. Study objectives included: 1.

Exploring the overall experiences, specifically the impact of ASD diagnoses and the point at which the mothers shed more light on their subjective and lived

experiences particularly their personal, familial, emotional, and psychological processes involved in caring for a child diagnosed with ASD. 2. The importance of gaining a cultural perspective about the West African immigrant mothers.

Theoretical and Conceptual Framework

The rationale for applying phenomenology to this study was to explore the lived experiences of West African immigrant mothers who are caring for their children diagnosed with ASD. The researcher was of the view that a better understanding of this phenomenon would provide a description of the phenomenon, maintain a strong relationship to the topic of inquiry, and interpret the meaning of the lived experience (Bloomberg and Volpe, 2012). In addition, Merriam (1998) indicates that phenomenological analysis includes an epochal approach, which involves laying out one's assumption about the phenomenon under study, bracketing, imaginative variation (looking at the phenomenon in various ways), and first and second order knowledge. The epistemological interchange between the participant’s lived experiences and data analysis allowed for a detailed and flexible in-depth exploration. Moustakas’ (1994) phenomenological data analysis was used in this study because it gave the researcher the opportunity to understand the inner dialogue of participants’ “lived experiences.” Additionally, phenomenological approach allowed the participants to express themselves and their lived experiences the way they wanted without any disruption or judgment by the researcher.

In accordance with Moustakas' (1994) phenomenological approach to data analysis, the researcher takes a fresh look at the phenomenon under consideration and then analyzes the data by reducing information to significant statements or quotes and combines these into thematic categories. Thus, using Moustakas’ approach to data analysis allowed the researcher to deeply immerse and focus on both the textural and structural description of participants’ experiences to produce a combination of descriptions in order to convey an overall essence of the phenomenon (Moustakas, 1994; Bloomberg & Volpe, 2012, p. 33).

Research Question

This qualitative study was guided by the following research question: what are the experiences of West African immigrant mothers caring for their child diagnosed with ASD? This study explores the lived experiences of the parents and phenomenological analysis was the method that was used to explore the inner subjective experiences of the participants.

Statement of Assumption

In phenomenological study, statement of assumption is a pivotal part in the research process, and this is known as bracketing or Epoche. This aims at mitigating prejudices, personal biases that may taint the research process, and subsequent findings (Tufford & Newman, 2010). In addition, this technique allows the researcher to purposefully set aside outside beliefs in order to have a clear view of the phenomenon (Husserl, 1938).

The following statement of assumptions are derived from the researcher’s clinical background as well as theoretical and academic research: 1. Living in the US automatically changes the parenting and caregiving role of immigrants. This assumption is based on the differences in the experiences in the United States and their country of origin. For example, in the African context, parents can share their parenting role with other members of the family as a form of support; however, one may not be able to immigrate with the extended family, thereby making it difficult to get help from the family so the parents are then forced to manage all the care themselves as they meet other responsibilities. 2. Because the goals of the West African immigrants are geared towards accomplishing the “American dream,” they immerse themselves in American culture, altering their cultural roles and the helping aspect of interdependence. 3. Being an immigrant and caring for a child diagnosed with ASD can be challenging and isolating. 4. Religion and spirituality could be a driving force for immigrant families as religion and spirituality can help them connect with others while they cope with the challenges they face in their daily lives.

CHAPTER II

Literature Review

Introduction

This study addresses the parenting experiences among immigrants from West Africa caring for their children diagnosed with ASD. To shed light in this area, I gave the background of the West African immigrant community. I then examined the traditional West African parenting role by comparing it to the Western cultural parenting roles and the impact of having a child diagnosed with ASD. Next, I reviewed relevant literature on Autism Spectrum Disorder (ASD). Finally, I examined some of the psychodynamic theories that are relevant to this study using the lens of self-psychology twinship concept. Overall, the literature relates to the study at hand that seeks to explore and understand the experiences of the West African mothers caring for a child diagnosed with ASD.

The West African Immigrant Community

There has been a recent influx of West Africans to the United States over the past thirty years (migrationpolicy.org). Gordon (1998) calls the influx the “New Diaspora” and states that a sizable African community now reside in the United States. West

Africans are people from diverse cultural, traditions, religions, world views, and languages. West Africa was a part of Africa where transatlantic slave trade was conducted. This region signifies a cultural geography that represents a long-standing continuity between African Americans who are descendants of slavery in the United States and the newest arrival from the continent (Halter & Johnson, 2014). Most of these West Africans are English speaking as they were under British colonialism. A few of them hail from French speaking countries (Halter & Johnson, 2014). Most of the West African immigrants are in the United States out of their own volition. One author identifies some reasons for migration and posits that these Africans come to the United States for reasons such as unrelenting economic crisis, political turmoil, and deleterious effect of natural disasters (Nyang, 2011). Arthur (2009) noted that West African immigrants are coming to the United States as a result of continued globalization, economic incorporation, technology, easy access to transportation, information flow from core periphery countries, and the demand for cheap sources or skilled and unskilled labor. Some immigrants are also driven to leave home due to ethnic strife, civil wars, poverty, and chronic and mass unemployment. Others enter the country with the sole purpose of reuniting with the spouse and family members thereby ensuring their own economic survival as well as that of their families. The influx of West Africa immigrants from countries such as Ghana, Nigeria, Sierra Leone, Liberia, Cameroon, and Togo cannot be overlooked. Some reside as permanent residents, naturalized citizens, and others are native-born citizens (Ghong, Larke, Saah, & Webb-Johnson, 2010). Most of the West African immigrants are highly educated, urbanized, and have one of the highest per capita incomes of any immigration group

(Adugna,1998). The West African immigrants come from different West African countries and may share some common cultural experiences worth noting. Collective responsibility is central to the West African immigrants’ understanding of themselves. In other words, it is expected that, regardless of one’s country of origin, members of this group act supportive of one another hence when a West African meets a fellow West African, greetings such as “my sister” and “my brother” are exchanged. Children of West African immigrants are required to call anyone older than themselves in the community as “uncle” or “auntie.” Whatever the motives for leaving one’s home country, immigration of West Africans typically activates a mourning process. Immigrants mourn the leaving their parents, siblings and, for some, even their children. They also mourn leaving their friends and the broader network of relations that have organized their identities (Ainslie, TummalaNarra, Harlem, Barbanel, Ruth, 2003). The loss of the smells, tastes, sounds, and the rhythms of life that so deeply shaped the sense of self in the world over the course of their development are part of the immigrant’s experience of dislocation. Thus, the West African immigrant not only experiences the loss of people but culture as well (Ainslie, 1998). In addition, new West African immigrants are forced to deal with socio-economic, cultural, and political issues in the vicinities where they settle and, in the schools, where their children attend (Onwujuba, 2015). Pertinent to this, Akhtar (2014) noted that to circumnavigate some difficulties of being a new settler, West African immigrants can move to areas where people who are family members or native countrymen are

numerous. Doing so, they have access to resources and are able to maintain the familiarity of their homeland.

Cultural Differences

There are numerous cultural differences between the United States and the countries where new Africans once lived. These differences are in ways people think, reflect, and do things (Nii-Amoo, 1997). While new African immigrants are more communally oriented, they find that many in the United States are more individualistic. Most Africans come from communities where sharing is an integral part of their lives. This care is demonstrated in a village community environment where togetherness is valued and sharing palm wine or kola nut in gatherings are perceived as a sign of peace and love (Ghong, Saah, Lake, & Webb, 2007). The communal nature of child rearing in their country of origin may be difficult to recreate in this type of socio-cultural setting. Shouldering the responsibilities of raising children by only the parents can be a shocking and challenging experience for the West African immigrants. This study will focus on the mothers’ experiences of their children born in the United States and have been diagnosed with ASD.

Parenthood as a Role

Parenthood is one of the primary social roles and adult responsibilities that can be adopted. Although people anticipate and rehearse the parental role from infancy, rehearsals do not provide much preparation for reality of providing complete care for

another person (Galatzer-Levy & Cohler, 1993). Additionally, becoming a parent produces a sense of crisis and consequences unlike any other role transition (Gutman, 1997, Chodorow 1978). Benedek (1973), one of the architects on the topic of parenthood, noted from a psychoanalytic frame that parenthood was an adult developmental stage. Benedek discovered that becoming a parent can be very stressful and should be considered an important adult developmental role. Parenting is a role that never ends, they will always consider their children as children. “Parenting affects every aspect of life as there may be no exit from it as far as there is memory.” (Galatzer-Levy, 1993, p.147). In other words, parenting continues once a person becomes a parent and they can never forget that they have children, parenting starts with the decision to have children and raise them. The parenting role only ends with the death of the parent. The role that parenting plays is of great importance in people’s evaluation of themselves throughout life and children’s failures later in life can place an enormous burden on parents because they may take the blame for their children’s lack of success. Parents may doubt that after many years that they have actively reared their children. Parents may also wish that they can do anything differently regardless of whether they have fulfilled their parental role adequately (Galatzer-Levy & Cohler, 1993). Drawing on resources from diverse fields on parenthood, including psychology, sociology, and anthropology, parenthood is seen as a high priority for time and energy due to the time and energy of its centrality in the adult role portfolio. Role conflicts, strain, and overload are common, particularly among parents of young children. In uppermiddle class dual career families, one or both parents may be expected to work during the

evening or travel on business. These may conflict with legitimate demands of the parenting role. Participating in a school aged child’s school, athletics, or other after school programs and activities in the evening may conflict with work-related activities like evening meetings and conferences or preparation for the next day work. Many parents may find it hard to juggle such demands (Galatzer-Levy & Cohler, 1993). Often, the chronic demand of parenthood leads people to adopt stereotyped gender roles to meet the crisis. Men become concerned with providing economic support while women become concerned with the parent-child bond and management of feelings. For men, increased role stereotype is likely to be consistent with their previous views of themselves and others. For women, the demands to express feelings and provide feelings and provide care for the baby and the family is often consistent with pre-parental conceptions of themselves (Galatzer-Levy & Cohler, 1993). A publication by the American Psychological Association (2014) examined the role of parents and caregivers and concluded that parents and caregiver's role is to make sure children are healthy and safe, equip them with skills and resources to succeed as adults, and transmit cultural values to them. Not only is parenthood the one adult role for which there can be no full preparation, it is the role that can uniquely reorganize adult personal commitment. Research on parenting a child often offers perspective of caregiving infused with commitments (Galatzer-Levy & Cohler, 1994). In view of this, Nomaguchi and Milkie (2003) agreed that parenthood is a transformative experience imposing a unique mix of stress and rewards for those who enter. Life course literature on parenting and well-being emphasizes psychological issues

and the variety of exposure to stressors and access to resources throughout life (Umberson, Pudrovska, & Reczek, 2010). Similarly, early experiences of the parents may have long-term implications for wellbeing throughout middle and later life (Ha, Hong, Seltzr, & Greenberg, 2008). This means that parenthood carries both cost and benefits. An indication that every phase of parenthood is important to the well-being of the parent. On the other hand, differential exposure to environmental risks and resources around parenthood can produce increasing disadvantage for well-being of some, and increasing advantage for others (Kendig, Dystra, Van Vaalen, & Melkas, 2007). This approach recognizes human agency and resilience as well as heterogeneity in relationship to life course experiences. Thus, individual choice and sense of personal control in making decisions about parenthood may play an important role in shaping the effects of parenthood and well-being.

Parents with Disabled Children

Disability of any kind is culturally constructed (Kalyanpur and Harry, 1999). Beliefs and attitudes about disability and, for that matter, ASD may vary from individuals, groups, communities and within families. In some cultures, a person’s disability gives them the opportunity to use their unique abilities to benefit the community. In American culture, some ASD people with exceptional talents have the opportunity to use their talents to the best of their abilities thereby contributing to the society. For example, in other cultures, able-bodied individuals devalue ASD by forcing those with ASD to perceive the world through the lens of the dominant society (Schnieder, 2005). In some African cultures ASD is a “taboo.” In other words, ASD is frowned on. Superstitious

beliefs such as having a child with disability is a curse from the gods as a result of a sin committed by the parents. This superstition results in labelling and stigma against the child and the parents as well as their families (Avoke, 2002). Some demeaning terms are used to describe children with ASD. For example, “bulubulu” and “gyime-gyime” in the Ga and Twi language of Ghana both interpreted as one who cannot reason and “Ogbange” in the Igbo language of Nigeria, meaning a person with a bad omen that will bring misfortune to the family. With this in mind, it makes it difficult for West African parents of children with ASD to voice their experiences as well as seek the supports they might need from resources outside their families and the immigrant community. Parenting a disabled child with ASD brings specific challenges to families. Understanding the parents’ attitude towards their roles and the reality of the day-to-day experience of having to care for a child with ASD is the focus of this study. Dickman and Gordon (1988) describe the experience of parents of children with disability. In their article, they assert that when people decide to have children, there is typically great joy at the impending life they are bringing into the world. Elation and hope for the future can come to a crushing halt when a baby is born with disability. For many parents it is too much to bear and sorrow and grief begin as a realization of lost hope and dreams set in. Parents often feel a deep sense of guilt as if they have caused the disability or disease and will in the long process come to terms not only with their child’s disability, but also with their personal emotions and those of other family members such as siblings, grandparents, aunts, and uncles (Haven, 2005). Parenthood in itself is a universal role that

is undertaken in different cultures across the board. The role of West African mothers will be discussed in context.

The Role of Traditional West African Mothers

The importance of the woman’s indispensable role is often discussed in various ways. In traditional West African culture, the roles of mothers are defined by the society. Gender roles are visible in the child-rearing activity (Malagatana, Seidman, 2011). Thus, what it means to be male and female shapes the opportunities one is offered in life and the roles one may play in traditional West African culture. African women bear children and they are pivotal to the literal survival of their community. Women who bear children consider themselves as fortunate and see themselves as having a future. This means that they carry the responsibilities of nurturing and homemaking while children are to obey and respect their parents. For example, in most African cultures, mothers command much respect and the society views birthing with great significance (Akujobi, 2011). African women are eulogized for their indispensable roles in production and procreation. Traditionally, the virtue of the African woman is celebrated in her ability to bare children. For the African woman, childbirth brings joy and defines self-fulfillment and position within the mother’s household and society (Seidman, 2011). The African woman not only controls the domestic affairs but also participates in the breadwinning role. For example, in traditional African society, the woman helps with the farming and bringing food home to cook for the family (Seidman, 2011).

While the woman is expected to nurture and raise the child, she may have to assume the breadwinning role when the man does not take the responsibility to do so and she is in charge of managing the household (Ogundipe-Leslie, 1994). The African woman as a mother advises her child and serves as the foundational pillar upon which all the family and community structures rely. Another specific attribute of the African woman is her role as an educator. This role as an educator actually takes various forms. On one hand, the mother is the model of appropriate behavior that can lead to good character and appropriated behavior. On the other hand, she gives support in helping children obtain formal education. Education entails not only the teaching of human and cultural values, but as mothers and educators, women lead their children on the road to good life (Ogundipe-Leslie, 1994). Genuine education involves the shaping of character through the example of the education and sometimes take up the long-term investment in their children by way of paying education fees for kids when the men abdicate their responsibilities. This challenging aspect of the role of the African woman requires that she lives a life worthy of imitation. In the African tradition, women are the first pedagogues in the sense that they are the first to lead their children (Dimandja, 2004). For example, among West African parents, mothers try to maintain their lives through daily food supply to their children and this particular role of the African mother explains why she would do anything to sustain her family (Dimandja, 2004). Traditionally, African mothers assume responsibility for thinking about, managing, and executing child-care tasks. In other words, the responsibility of making sure that children’s needs are met falls on mothers (United Nations Development Program, 2007).

Despite the family establishment and the traditional role of the African mother, the African culture is considered as patriarchal. Most African men place emphasis on having their wives give birth to male born children. In essence, it is a traditional belief that the male children would continue their legacy or follow their footsteps. Thus, childbearing in Africa is culturally mandated while infertility is critically despised (Ogbuja, 2008). The father’s role in the African context has been elaborated by Abubakar (2017) on the positive influences that fathers make towards their children’s development. In this context, Abubakar (2017) noted that fathers protect their children from danger and assist in their children’s upkeep, health care, nutrition, and support their schooling as well. Research in the area of African fathers indicate that fathers who are involved with child rearing take up the responsibility for their family and become role models of appropriate behavior for their young children. When fathers are given recognition, their children bear their last names and some fathers become the primary caregivers of their children (Lesejane, 2006).

West African Immigrant Mothers and Their Parenting Experience

According to Arthur (2009), the goal of raising a child to accomplish his or her dream is of paramount importance to the West African immigrant parent. Parents expect that their children would grow, develop, go to school, and integrate into the American system. Having a child with ASD presents a challenge to West Africans achieving these goals and still being able to meet the parenting needs of these children. For example, most West African immigrants envision their children being “smart” and “competitive” in school. They also want the children to balance acculturation and integration by adopting the host

culture along with the maintained heritage culture (Family Science Review, Vol. 20, 2015). Parenting itself is challenging and West African immigrant environmental experience related to a child with ASD can impact the decisions they make about parenting. For example, parents generally hug and kiss their children, but the dynamics between a child with ASD might be different because of the child’s sensory sensitivity. Also, outside resources, such as negotiating the school system, may not be easy for the West African immigrant parents and, depending on the level of severity, it may impact the marital relationship, family dynamics, and work schedule (Hayes & Watson, 2012). Many West Africans integrate socially due to their social constellation (Arthur, 2008). In other words, they group together with members who are familiar with their culture, traditions and common language. Having a child with ASD can contribute to parents living in isolated environment. They may have to constantly keep an eye on the child, fear that the community may not embrace their child’s disability, or, worse-case scenario, they may be questioned, hence parents would rather keep to themselves and refrain from integrating into the immigrant community. This may result in low connection with the community and low self-esteem in the individual parent. There seems to be an acute shift in ways by which parents’ whose children have been diagnosed with ASD maintain their roles in their community. This shift, however, may not necessitate that the West African mother with a child diagnosed with ASD severs her relationship with the culture of origin. Rather, it should enable one to be well informed about this group and some of their parenting experiences of raising a child diagnosed with ASD.

The parenting role of the West African immigrant involves an interpersonal practice loaded with emotions that imply relation and interdependence (Ebot, 2014). This heavy emphasis on relational interdependence can be threatened if a West African parent has a child diagnosed with ASD. Therefore, the purpose of the research is to analyze the impact the diagnosis of ASD has on the mothers and that impact will be analyzed based on the data revealed in the interviews.

The Impact of ASD Diagnosis on West African Mothers

Autism Spectrum Disorders (ASDs) are neurodevelopmental disorders characterized by impaired social interaction and communication and by restricted, stereotyped, and repetitive patterns of behavior (APA, DSM 5, 2015). Up to date, the etiology of ASD is largely unknown. Globally, advances have been made in understanding the genetic and developmental aspects of the ASD; however, many aspects of the condition are still poorly understood (Ruparelia et al., 2014). In research on ASD, by Bakare and Munir (2011), they found out that ASD diagnoses among African immigrants are characterized by delay due to lack of understanding, lack of awareness, and lack of perception of abnormal behavior mediated by culture and superstitions. More recent research indicates that although there is no known “cure” for ASD, it is a spectrum condition that affect different people in different ways. Prior to 2013, people diagnosed with ASD were given a diagnostic category such as Asperger’s syndrome, autistic disorder or pervasive developmental disorder. All of these have been redefined by the new DSM 5. As of 2013, ASD is a single diagnosis comprising of everyone who would have to fit in the prior diagnostic category (APA, 2013).

Children diagnosed with ASD can be very different from one another, some of these differences include those who cannot speak, write, or use the toilet (Rudy, 2017). Additionally, they may be self-abusive and aggressive to others. There are others who are brilliant public speakers and creative writers, professors at universities, and others have been honored for their excellent contribution to society. While ASD has been placed under one dimension, there are differences between those on the mild end and those at the severe end (Rudy, 2017). According to the DSM 5 (2013), the severity of ASD diagnosis can be measured according to the level of support. There are three levels of support for ASD. Level three is labeled “very substantial support,” these individuals have severe deficit in verbal and non-verbal communication skills and difficulty changing action or focus. Level two labeled “substantial support” still requires support at a lesser level than level three, here the child has limited special interests with repetitive behaviors and finally, level one requires “support,” these individuals have difficulty in social communication and decreased interest in social interaction and difficulty switching between activities (Lisa Jo Rudy, 2019). The type of support for each level has not been clearly provided by the American Psychological Association which raises questions such as what type of help is needed for the levels. Also, how do these levels impact the West African mothers? The level of support required to care for a child implies what kind of impact the diagnosis will have on the entire family. As mentioned above, some children have difficulty in all areas of functioning while others have difficulty reading emotions but, otherwise, the child can dress themselves deal with executive functions. This is vastly different to someone who needs complete assistance in every form of functioning.

ASD impacts the entire family. Research on ASD identified the effect of parenting or caring for a child with ASD such as the proclivity of caregiver stress and psychological distress (Boyd, 2002; Hayes &Wilson, 2012). Recognizing the impact limited studies conducted on the parents’ perception of their child with ASD, Ponde and Rousseau (1993) concluded in their research that some immigrant parents seem to be in denial of their children’s diagnosis in their early years and that may be a way to cope with the diagnosis. Galatzer-Levy et al. (1993) studied a group of parents with severely disturbed children with neurological impairment. In their findings, these parents commonly regarded themselves as failures at life’s most important tasks and developed a sense of pathology profoundly shaped by these failures. This does not mean the parents are necessarily disturbed themselves who by virtue of their disturbances produce an emotionally disturbed child. Fisman et al. (1991) synthesize theory and research findings and place them in the context of the psychological effect of parenting a child with ASD. In their findings (Fisman et al.), it was concluded that unlike other handicapping conditions with obvious physical stigmata, the invisible handicap of a child with ASD and the frequent delay in diagnosis contributes to the mother’s self-doubt about her parental competence.

Statement of Relevant Knowledge or Theory and Review of Significant Literature

In order to put into perspective the idea of the parenting experiences, Mikulincer (2005) noted that Heinz Kohut (1971/1977 & 1984), emphasized how early caregiving experiences play an important role in fostering the development of the cohesive sense of

self by meeting critical developmental needs referred to as “selfobject needs.” Selfobject needs are experienced through the relationship with others. According to Kohut (1984), there are three major types of selfobject needs that influence the developing self: mirroring, idealizing, and twinship. A healthy mirroring selfobject experience such as being the gleam in the parent’s eye, facilitates self, ambition, and the ability to assert oneself later in life. It suggests the child being admired by the caregiver. Idealizing selfobject needs stem from the desire to rely on or merge with an idealized other in times of stress. During this merging process, the child admires the quality of the caregiver and. according to Bacal & Newman (2005), the child feels linked with a powerful other, feelings of wholeness and unity arises out of this experience, and the child feels strengthened. In addition to the mirroring and idealizing selfobject, a third concept introduced by self-psychology is twinship. Twinship includes our need to belong, to be acknowledged as a fellow human being and to feel connected to a similar other. When these needs are met it results in a sense of connection, intimacy, and belonging. Conversely, Kohut and Wolf (1984) noted that deficits in mirroring, idealizing. and twinship, may contribute to the disorder of the self (APA, 2014). An interesting question regarding twinship is what happens when a person is isolated as a result of having a different experience than the peers due to a child being different from anything the child knows?

Theoretical and Conceptual Framework of the Study

In order to understand the experiences of West African immigrant parents raising children diagnosed with ASD, psychodynamic theories and how these theories can be

applied to the parenting experience need to be considered. Generally speaking, it would be useful to see how these theories can be applied to caring for neurotypical and neuroatypical children. There are several psychodynamic theories that can be applied to the analysis of the experiences of immigrant mothers whose children have been diagnosed with ASD. These theories include object relations, attachment theories, and others. Object relations theory, for example, focuses on the importance of the mother-infant relation in the development of a person. According to Goldstein (2001), infants form a mental representation of themselves in relation to others thereby forming an internal image through repeated experiences with the caregiver that can influence their relationship in later years. In other words, children internalize and form images in their early experiences with their caregivers and their environment which forms part of the basis for how children establish future relationships (Mitchell, 1998). In the case of parenting neurotypical children, parents may be able to readily identify the images that their neurotypical children develop and receive helpful feedback about what their children need. However, for parents of a child diagnosed with ASD, it may be difficult to understand the images formed by the child, what goes on in their mind, what their intentions and feelings are, what motivates them and the difficulty the child has in understanding their own feelings (autism-bg.net, guidedata). It may be difficult for these parents to understand how their child communicates with them. They may be unfamiliar with the ASD diagnosis. Since these children may not have the same characteristics as neurotypical children, the parents may struggle in understanding the needs of this child and knowing how the children will be able to know or identify themselves with their

parents. The parents may not understand or recognize the psychological component of the ASD diagnosis (Munroe, Hammond, & Cole, 2015). This then makes it difficult to know if they have met the needs of their neuroatypical child and would potentially cause them significant distress and uncertainty. Another psychodynamic theory, attachment theory (Ainsworth & Bowlby, 1991), posits that infants derive security and protection from their caregivers who respond to their needs in a timely manner. The quality of a child’s attachment during their early developmental years informs the quality of relationships throughout life. The relationship between the infant and mother is intertwined in the attachment process and as the child affects the caregiver, the caregiver also affects the child. The caregiver’s availability enables the child to be emotionally attuned and self-regulate. Again, the caregiver’s lack of response can make the child feel insecure. In addition, attachment theory elucidates the wide-ranging and subtle function of the attachment system. In other words, there are some psychological exchanges between the child, the attachment figure, and the quality of signals and exchanges provided that can shape the child’s psyche and emotional and social interaction (Fonagy & Target, 1997). In the case of all parents, including West African mothers, they may find it difficult to perceive the sense of feeling needed, which may be pivotal in parenthood when a child is distraught or needs to be comforted. In addition, parents whose children have been diagnosed with ASD may feel rejected and feel at fault if their children do not respond to comforting such as hugging, kissing, or smiling. The trauma of rejection and feelings of guilt can affect the attachment level of the parent and child diagnose with ASD (autismbg.net, guideddata). For other families of children diagnosed with ASD, they may

experience stigmatization in their culture especially when the culture places emphasis on social identity as opposed to individual identity (Ametepe and Chitiyo, 2009). In other words, the sense of who these mothers feel they are and the influence they exert in their culture can be affected by the diagnosis of a child with ASD. Although object relations and the attachment relationship between parents and children are formed during the early stages of development for neurotypical and neuroatypical children, understanding the neurotypical and neuroatypical needs of the children may take a different trajectory. Meins (1999) noted that the parent’s ability to read, interpret, and understand children’s mental states can be predicted for neurotypical children. With neuroatypical children, the ability to communicate effectively and recognize a child’s mental state may be more difficult resulting in greater challenge in achieving parental sensitivity (Howe, 2006) which, in turn, makes it more challenging for a parent to develop a positive attachment with their children. A child diagnosed with ASD may not act the same as a neurotypical child due to their behavioral characteristics (such as the ability to adapt to change, sensory issues, loud noises, noticeable speech delays etc.). In both of these theories, the caregiver and child relationship are the channel that allows proper integration to of attachment to occur. Even though these theories may potentially provide some insights into the experiences of West African immigrant parents, this project will analyze this experience through the eye of self-psychology. Self-psychology is a particularly helpful framework because it speaks to the importance of selfobject needs throughout life. It emphasizes the theme of connection not only during infancy, but also during the adult years. Selfpsychology focuses on the continuity of intergenerational relationships which advance

the development of a healthy sense of self. In other words, self-psychology addresses the relationship between the adult and the child that emerges as a result of psychologically experiencing each other and the support provided to form a cohesive self. Selfpsychology proposes a conceptual framework for understanding human psychological development that emerges through empathic interactions that provide the foundation for psychological health and maturity (Benai et al., 2005).

Self-Psychology Theory Overview

The core concept of self-psychology is that patients need to be understood from their own subjective experience. In understanding this experience, Kohut (1971) introduced the concept of “selfobject” which aims at describing the relationship needs between the self and others. Proponents of self-psychology are of the view that human beings are designed to flourish in a certain kind of environment. That environment such as a child’s family, something that a child holds on to, must provide a milieu to sustain a child’s development. Typically, the child will be able to maintain consistent pattern and self-regulate or self soothe as the self evolves and develops. On the contrary, if there are many empathic failures and the child is unable to handle those experiences the child may not be able to form a cohesive self. The self evolves out of the interaction between people and their environment whom the child experiences as selfobjects. Therefore, the relationship that ensues between the child and the parent leads to the development of the sense of self (Kohut, Wolf, 1978; Goldberg, 1980).

In other words, children need affirmation and admiration for a sense of self-worth, protection and safety from a caregiver leading to self-control and self-regulation and an adequate experience of a common bond that leads to a sense of well-being and wholesomeness (Palombo, Bendicsen, & Koch, 2010). Kohut (1977), who is credited with self-psychology, noted that an environment that is designed to make human beings flourish allows the child to thrive, feeling connected in the human community, and energized. These feelings start early on in a child’s life. Similarly, Kohut understood that for a child’s life to be intact, the child requires selfobjects that perform certain functions. These are the mirroring, idealizing and twinship selfobject functions. Elson (1996) refers to the selfobject functions as the caregiver’s ability to provide care and tune into the needs of the child. Kohut (1977) explained that the mirroring selfobject function involves a caregiver who responds to and confirms the child’s innate sense of “vigor, greatness and perfection” (Mitchel and Black, 1995, pg. 159). Added to this is the idealizing selfobject function that the child perceives someone as great and powerful so that the child can emulate and merge with that selfobject. The caretaker’s response to the child can be a protector for the child while the child internalizes and regards the parent as the most powerful, strong, and important other (Palombo, Bendicsen and Koch 2010). The selfobject function of twinship involves the feeling of connectedness, bonding, alikeness and feeling of intactness and wholesomeness without which we feel dehumanized (Holden & Marquis, 2016). Parenting a child becomes the channel through which the self-need is fulfilled.

Galatzer-Levy and Cohler (1990) believe that selfobjects are internalized in one’s psyche in a variety of ways to support and promote a sense of cohesiveness necessary for psychological development. This selfobject experience is not limited to the child alone, parenting, in itself, brings to light some aspects of the selfobject experience. GalatzerLevy and Cohler (1990) noted that parents learn to be parents from their children and parenting. It is the expectation of parents that as their children get older their level of care diminishes due to their ability to meet their developmental milestones thereby becoming more independent and are able to care for themselves physically. In other words, children, under normal circumstances, would relieve the responsibility of the parent by becoming more independent. Children diagnosed with ASD; however, do not have normative development and may remain more dependent on an adult caretaker. They may remain dependent because of the difficulty in communicating, social interactions, and inability to control behavior. The parents experience the difficulty of communicating with a child diagnosed with ASD as an inability to identify certain cues coupled with sensitivity issues; caretakers may find it difficult to recognize the child’s presenting needs. This challenge can show no indication of abating which can potentially cause a high level of stress for all parties involved. Although a neurotypical child’s crying, kicking, or screaming may be traced to an unmet need, holding and cuddling that child firmly and soothingly generally provides the child a sense of calmness. For a parent of a child diagnosed with ASD, this process can be draining and may have the reverse effect on that child. This can be likened to a delicate balance between hope aroused when needs are understood and the fear

engendered by intensification when the selfobject is unable to recognize the true need (Wolf, 1981). A neuroatypical child, such as a child diagnosed with ASD, may be limited in the amount of independence they can attain. This type of mental disorder can cause varying degrees of challenges in communication, social interaction, and cognitive development. It is important to note that this particular challenge starts very early in life. The timing is important as the condition prevents the child from developing important communication skills from the beginning. For a parent, communication is key because it lets them know what the specific and immediate needs of the child are. Thus, without a secure ability to communicate, parents can feel inadequate. In addition, autism affects how or if a child listens and obeys commands. These commands are important because they can prevent danger or enhance their ability to think independently. Hewitson (2018) noted that a child diagnosed with ASD may be prone to repetitive behavior, outbursts, hypersensitivity to light, textures, and sounds in addition to irritability, insomnia, and digestive problems. ASD challenges the emotional development of empathy and socializing. As a corollary to the above, the empathy and selfobject matrix are important tools for “elucidating the complexities of parenting as they explain the concept of the interaction and intrapsychic significance” (Eldridge & Schmidt, 1990, p.124). In other words, empathy and selfobject simultaneously lend themselves to the shared understanding of what a person is and what they really mean. Self-psychology maintains the concept that people do not live in vacuums and that every human’s welfare is embedded in social interaction. Empathy and introspection are tools in understanding others. Empathy is the

temporary identification or sharing of beliefs and feeling empathy leads to understanding. People feel regulated when they are understood (Shane & Shane, 1993). Furthermore, understanding the meaning of subjective experience lends itself to people connecting with each other. Because interaction with others is important in the development of a person, the mother and child must be willing to understand the experiences and interaction with each other in a way that will bring greater satisfaction (a type of twinship experience). It is worth noting that bonding with a child, which is akin to the twinship concept in self-psychology, may be different for parents raising children diagnosed with ASD.

The Mother and Child Experience of Each Other

The experience of the child and the relationship with the mother has been studied in a variety of ways. Freud (1914/1953) noted in his essay “On Narcissism” that it is not uncommon to see mothers who are affectionate towards their children bringing back their own form of narcissism which were abandoned for a long period. This narcissism is observed in their overvaluation of their children and ascribing perfection to these children while they overlook all their children’s flaws. In discussing the mother-child relationship, Freud indicates that parents fantasize about their children being “perfect” and this perfection helps the parents to “conceal and forget all their shortcomings” (Freud, 1914, p. 90). Thus, there is an inclination to defer all their narcissistic desires that they themselves gave up unto the child. In addition, the parent does not expect detrimental effect of illness, death, renunciation of enjoyment and restriction of will to touch the child. In other words, anything that is not considered as good for the child would be

blotted out of the child’s life. The parent expects the child to fulfill those wishful dreams that they themselves never carried out (Freud, 1914). Likewise, great things would happen to the child and what the parent was unable to achieve would be done as a form of compensation for the parent. Part of this fantasy is the feeling of security that is achieved by taking refuge in the child (Freud, 1914). Stern (1985) provided a paradigm on the mother-child interaction in his description of the “Motherhood Constellation” and confirmed that the mother’s own subjective experience of caregiving is founded both in the experience with her own parents from earliest childhood and also with significant others in her life to the present time (Bornstein, 1996). Stern (1985) pointed out that the mother’s own experience in her own childhood in the past through interaction with others is known as representation of interaction, or RIGs, that have been generalized. RIGs of a mother and father provide a template for the mother’s interaction with her own child and vice versa. Cohler and Galatzer-Levy (1983) linked the relationship between the mother and child to “essential other.” In other words, the mother child relationship provides a valuable idea about the need for others to meet our needs. Some researchers of ASD have demonstrated that caregivers experience different impacts of having a child with ASD, different needs for support related to the needs of the child, the relationship with the child, and the cultural context. Additionally, Kheir et al. (2012) investigated the concept of the quality of life of parents of children with ASD in Qatar and found greater instances of poor mental health compared to parents of neurotypical children. This means that the parents who are providing care for their children may be susceptible to problems related to mental health. According to these

researchers, there inconsistencies still remain in the experiences of the immigrant parents caring for their children with ASD. Anxiety, depression, low socio-economic status, and stress have been identified as general phenomena for caregivers (Ponde, 2009; Rousseau, 2008) in general. There is the need to investigate the West African immigrant parents’ lived experiences.

Twinship Concept in Parenting a Child Diagnosed with ASD

First, we can begin with the observation that West African parents in the United States are immigrants and because they are immigrants, by definition, this means they have left their country to live in a new country that is unfamiliar. The fact of experiencing that difference means all immigrants share that specific experience of living in a new culture. Thus, being an immigrant may become a twinship experience and provides an important sense of belonging to immigrants. Togashi & Kottler (2015) illustrate the twinship experience across cultures. They noted that immigrants, regardless of any other experience they may have, share at least one common experience and that is being an immigrant in a new country. This twinship experience reflects a commonality and likeness between two immigrant individuals that depends on the feelings that both have been in the same place in the past, are currently in the same place or, in their minds, will be in the same place in the future (Togashi & Kottler, 2015). This twinship highlights the commonality of experience, but also provides a sense of understanding among people who are similar even if their specific experiences are different.

These immigrants then have a sense of belonging and connection and being human among humans (Togashi & Kottler, 2015). In other words, being in a different country can lead to a sense of feeling lost and greater difficulty as one integrates into a new culture. Reconnecting with old friends who have migrated to the same culture and have shared similar difficulties can lead to forming new homoethnic coalescence that becomes an integral part of the immigrant experience. These homoethnic friendships are invaluable (Akhtar, 2011). Twinship brings them together and performs an important selfobject function. In the case of the West African parents, selfobject functions can be manifested in a variety of ways. For example, among the West African immigrant community there is a shared form of interdependence, friendship, and kindred spirit although they may have some cultural differences and similarities. The West African immigrant parents are a community, they hang out together with friends and family thereby having a feeling of mutuality. Additionally, twinship selfobject functions among the West African immigrant community are the shared parenting experiences, historical reference points, similar culinary preferences, and known ethnic festivals that bind them together tightly (Amissah, 1994). In line with the twinship concept of self-psychology, the immigrant’s relationship with other immigrants operates like a mother-child unit. “The emphasis upon mirroring, empathizing, and plausibility rendering features of their interaction amply demonstrates its maternal substrate” (Akhtar, 2011, p. 87). In other words, as the child needs the mother to care for them, the mother also needs the child to be receptive to the care provided. There is a feeling of mutuality that brings satisfaction and contentment for both

parties involved. For example, a sense of belonging is provided by the joy at seeing one’s own kinsman and the frequency of speaking the language, the shared pool of memories from the native land, the excitement of eating the native food at social gatherings, similarities in dress and music, and opportunity to share immigration experiences coupled with cultural and parenting experiences. In addition to the twinship selfobject function, forming a connection to another is a form of fellowship and experiencing oneself as human in the human relationship. Following culture and tradition, for some, brings a sense of belonging in an environment where language, history, and culture are foreign. Belonging is the precursor to feeling understood and having a sense of comfort. Even though a shared immigrant experience can lead to a selfobject function of twinship that function does not apply to all experiences. In spite of the common experiences of parents from this group, parents whose children have been diagnosed with ASD may not have that experience. This leads to the question: what happens when someone cannot use that twinship experience to create a sense of belonging? Clinical observation suggests that the West African parents with children who have been diagnosed with ASD may not be able to fully immerse themselves completely in the beauty of the culture as they care for their children (Aluko & Sherblom, 1997). Although various authors (Klein, 1960, Winnicott, 1971, Spitz, 1975, Stern, 1985) have identified the dynamics of the mother-child relationship, there is a wide gap in the literature in the area of the psychological exchanges between the mother and child with neurological or cognitive impairments such as ASD. For example, in reviewing the

literature on the mother-infant relationship, Lier et al. (1995) discovered that at the various developmental phases, especially during the first twelve months of the child, a relationship develops that is characterized by an intimate interchange of signals between mother and child. Accordingly, the baby expects the mother to fulfill its wishes while the mother adapts to and supports the child’s expanding capacities and needs. Not only this, but also, there are other developmental cues that exist to enhance the mother-infant dyad such as a child being able to read the mother’s verbal expression such as “yes,” “no,” or “maybe.” What if there are deviations of the ability of the child to meet these developmental milestones? In these cases, the parent can experience a high degree of worry and a sense of being overwhelmed. The purpose of this study is to gain an understanding of the parenting experiences and implications for West African immigrant parents caring for their children who are diagnosed with ASD. Given these circumstances, learning that a child has been diagnosed with ASD can be a long and difficult journey for West African immigrant mothers, but it is difficult for any parent as the parent faces the bewilderment of the choices available for ‘a cure.’ Parents want to feel connected to their children at every stage of development. In encountering ASD children, Gunstein (2000) observed that these children for entirely different reasons were perpetual outsiders in the world of emotional encounters. Along with forming relationships, the enjoyment of connection and interacting are not there for a child diagnosed ASD. And, as a result, it is also not there for the parents. Hobson (2000) views emotional engagement between the caregiver and the baby as the vital part of mental development. Akin to the self-psychological concept of twinship,

Gunstein (2000) views the experience of sharing a part of oneself with a partner as the reason we desire and enjoy the company of others. The parent and child engagement are also similar to the empathic attunement (Kohut, 1977). Drawing from the literature on parenting a child diagnosed with ASD, Fogel (2013) indicates that there is a parent-infant emotional feedback enabling parents to regulate the neurotypical child, this is not so in parenting a child diagnosed with ASD. Again, while the child depends on the parent to meet their emotional needs, the parent or adult caregiver also responds as they invest themselves emotionally in the relationship as they care for their child. Subsequently, ASD does not follow the same trajectory and the parent caregivers may lose sight of appropriate responses to give (autismspeaks.org, 2018).

Summary

Being an immigrant comes with complexities and challenges in the US and having to care for a child diagnosed with ASD which is considered a neurological disorder of early childhood can complicate the parents’ ability to understand the disorder (Siguouin, 2004). It is common for mothers to care for their children in every society. Yet, when an unfamiliar diagnosis regarding the child is confirmed, the parents’ perception and cultural representation may be compromised. Culture plays a pivotal role in the social living environment of families. Immigrant mothers’ experiences of their ASD child may impact their ability to understand the culture of origin and their new environment (Bagnoli, 2007).

Self-psychology twinship experience is rooted in the idea that people enjoy a sense of belonging and alikeness with other people. A person may feel a sense of likeness when they integrate into a community in which they may share things in common. These sorts of experiences lead to feelings of being liked by others, of being a part of and connected to the human community (Baker & Baker, 1987). When an immigrant mother has to care for a child with ASD that require time and energy, the ability to be part of the community may be compromised, hindering a mother’s ability to physically and socially connect with the community. From research perspective, various studies have been conducted in an attempt to understand the mother’s experience in caring for a child with ASD. However, there is a lack of adequate research on the West African immigrant mothers’ experiences with caring for a child diagnosed with ASD. This qualitative study focuses on the mothers’ experiences and the data will be analyzed through Moustakas’ (1994) phenomenological analysis.

Theoretical and Operational Definitions of Major Concepts

The following concepts will be defined as follows: West Africans- People whose national origin is from sub-Sahara Africa including Nigeria, Ghana, Ivory Coast, Sierra Leone, Liberia, Gambia, Togo, Mali, Cameroun etc. Parenting- The raising of children and all the responsibilities and activities involved in it (dictionary.cambridge.org).

Immigration- Immigration is the process of moving from one’s country to another for the purpose of settling as a permanent resident or naturalize as a citizen. Immigration may also involve a movement to a country in hope of finding greener pasture, find employment and work as a foreigner from another country. Immigrant- A person who moves from one country to another country for the purpose of having a better life than the country of origin. Autism Spectrum Disorder- Characterized by different degrees of functioning and levels of impairment. There are two categories that need to be met (a) A persistent deficit in abnormal social engagement, lack of eye contact, little interest in communication, lack of ability to understand emotion and affect, in their environment and their peers. (b) Restrictive repetitive pattern of behavior, interest or activities, such as motor movement, echolalia (repetitive speech). Restrictive repetitive pattern of behavior, rigidity and rituals on how to get through their day. Rigid fixated view of the world. They may also have hyper or hypo reactivity to sound (DSM 5, 2015). Phenomenology- Description of the lived experiences of subjects in the research study (Moustakas, 1994).

Chapter III

Methodology

Introduction

The purpose of this phenomenological study (Moustakas, 1994) was to understand the parenting experiences of West African immigrants with children diagnosed with ASD. A phenomenological approach was chosen for this study because it enabled the participants to describe their lived experiences. This chapter describes the study’s research methodology and includes discussions around the following areas: (a) rationale for research approach, (b) description of research sample, (c) summary of information needed, (d) overview of research design, (e) methods of data collection, (f) analysis and synthesis of data, (g) ethical considerations, (h) issues of trustworthiness (i) limitations of the study. The chapter culminates with a brief concluding summary. This study was an in-depth analysis of individual participants that focused on their subjective experiences pertaining to caring for a child diagnosed with ASD by comparing and contrasting important themes that was generated during the study. A phenomenological methodology is the method of choice for this study because it focuses on the meanings of human experiences in situations as they spontaneously occur in the course of daily life (Von Eckartsberg, 1986). This form of research does not

proceed from an expectation about what will happen; the research will focus on the experiences of the participants as they experience them. This then requires the researcher to set aside any preconceived notions in order to allow her to observe and make inferences based on what is happening or what is in the data. This approach goes beyond ordinary observation and entails a search for the “essence of these things” (Moustakas, 1994). Here the search for the essence of these things can be understood to entail focusing on non-verbal communication (body language, gestures), emotions, relationships, culture, and any other aspects of human experiences that can be part of a phenomenon. These are things that cannot be revealed by ordinary observation (Moustakas, 1994). Because the focus of observation is so detailed, Moustakas points out that the phenomenological research involves studying a small number of subjects through extensive and prolonged engagement to develop patterns and relationships of meanings (Moustakas, 1994). To engage in this type of research, I put aside my biases so that I could analyze the data on my own terms. Thus, I engaged in “bracketing,” a process whereby the researcher attempts to reduce their preconceived ideas that may have a deleterious effect on the study. The process of bracketing is referred to as epoche in phenomenological theory (Moustakas, 1994). According to Moustakas (1994) the purpose of epoche is to take a fresh perspective about the phenomenon under consideration; however, this state is seldom perfectly achieved (Bloomberg & Volpe, 2012). Phenomenology provides a sense of meaning as experienced by several individuals, the researcher utilizing phenomenological methodology must still interpret the phenomena they observe and it is difficult to make interpretations that are free of assumptions. These assumptions need to

be identified and explained by the researcher. However, Creswell (2007) points out that instead of bracketing, the researcher should decide how and in what ways their personal understanding can be introduced into the study and usefully incorporated in the analysis (Bloomberg & Volpe, 2012). In other words, the researcher should be explicit about their assumptions. For this study, I utilized Moustaka’s (1994) approach which posits that research should be focused on the wholeness of the experience and a search for the essences of the experience. In Moustaka’s view the experiences and behaviors of the person are intertwined and therefore inseparable phenomenon as the person experiences the phenomenon (Moustaka, 1994). A phenomenological approach encompasses the following processes: (a) systematic varying of possible structural meanings underlying the narratives of experiences; (b) seeking the underlying themes and contexts that account for the phenomenon; and (c) considering the universal structural properties of the phenomenon such as temporality, materiality, causality etc. Phenomenology allowed the participants to express their inherent beliefs and reveal a true reflection of what is it like to raise a child diagnosed with ASD for them. This approach allowed the researcher to get to know the participants (Creswell, 2013).

Sampling and Recruitment

A snowball or chain sampling was used to recruit the West African mothers for this study. This method is undertaken when a qualified participant shares an invitation from other subjects similar to them who fulfill the qualification defined for the targeted population. In other words, it identifies cases of interest from people who know what

cases are information rich” (Creswell, 2013, p. 158). This method was useful because it allowed the researcher to discover potential participants who may be difficult to locate. Potential participants provided a lead about who the researcher would contact for the interview. It also allowed the studies to take place where it would have been impossible due to lack of participants (statisticshowto.2018; Faugier & Sargeant, 1997). In this study, each of the participants was an immigrant mother from West African and caring for a child diagnosed with ASD. To ensure more in-depth exploration of their experiences, the following criteria was used for recruitment: (a) five of participants who were immigrants from any of the 16 West African countries, (b) married or single parents who were currently providing care for a child who had been diagnosed of ASD for five or more years, (c) fluent in English or Twi (Ghanaian dialect because researcher speaks Twi), (d) has immigrated to the United States at least in the past 5 years as they must be raising a child who has been diagnosed with ASD for five or more years for this particular study, (e) at least 18 years old, (f) and must be a permanent resident in the United States for at least five years. Another inclusion criterion was the willingness of participants to be present and able to talk about their parenting experiences of a child with ASD. Exclusion criteria for this study was non-immigrants, non-West Africans, nonEnglish-speaking West Africans except for Twi, parents who had no child with ASD, and those that were below the age of 18 years. Four participants lived in Chicago and one in Wisconsin. The timeline for the interview was within three months.

Rationale for Qualitative Research Design

The purpose of qualitative research is to study individuals in their natural settings, attempting to make sense, or interpret a phenomenon in terms of the meaning people ascribe to them (Denzin & Lincoln, 2011). Creswell (2013) expanded this definition and more specifically defines qualitative research as “research that begins with assumptions and the use of interpretive, theoretical framework that informs the study of research problems addressing the meaning individuals or groups ascribe to a social problem” (Creswell, 2013, p. 44). To study this problem, qualitative researchers use an emerging qualitative approach to inquiry, the collection of data in natural settings sensitive to the people and places under study, and data analysis that is both inductive and deductive and establishes patterns and themes. The final written report or presentation included the reflexivity of the researcher, a complex description and interpretation of the problem, and its contribution to the literature. Qualitative inquiry is best suited to answer the research question. Creswell (2013) gives two primary reasons for choosing qualitative design: (1) it empowers individuals to share their stories and hear their voices, (2) to understand the context or settings in which participants in the study address a problem or issue. The inquiry of this study centered on a human problem. By using qualitative approach, specifically phenomenology, this study examined the phenomenon of parent caregivers from West Africa of children diagnosed with ASD.

The Research Sample

The following criteria for the West African parents’ experiences included: (a) participants who are immigrants from any of the 16 West African countries; (b) married or single mothers who are currently providing care for a child who has been diagnosed of ASD for five or more years; (c) fluent in English or Twi (a Ghanaian dialect that was not utilized because participants chose to speak English); (d) immigrated to the United States at least in the past 5 years, this criteria was used because it gave the researcher an idea about how long participants have been raising their child in the US be raising a child who has been diagnosed with ASD for five or more years; (e) at least 18 years old; (f) and were permanent resident in the US, for at least five years. Another inclusion criterion was the willingness of participants to be present and able to talk about their parenting experiences of a child with ASD. Exclusion criteria for this study was a non-immigrant, non-West Africans, non- English-speaking West Africans except for Twi, parents who had no child with ASD, and those that were below the age of 18 years.

Recruitment

A large segment of this population usually converges at their various churches for services on Sundays or community centers during funerals, baby naming ceremonies, and festivities with community leaders representing all the various cultural groups. The community leaders were one source of recruitment. The researcher started with this group by finding out if they knew of any parent from their community raising a child diagnosed with ASD. Thus, West African immigrant parents of children with ASD were recruited

through purposive and snowball sampling. Sampling of participants was considered purposive because it placed less emphasis on generalizing from sample to population and greater attention to a sample “purposely” selected for its potential to “yield insight from its illuminative and rich information sources” (Patton, 2002, p. 40). In this research, immigrants from West Africa who are raising children with ASD were the focus of study. In order to carry out this sampling approach, initial contact was made by the researcher by making a phone call to the community centers and the clergy’s office where members usually met for programs. When the days or times were conveyed, the researcher scheduled to meet with one of the leaders/chiefs or the clergy to help identify potential participants. Once the researcher obtained responses of interest to the study, it allowed for the opportunity to talk to people who knew others who might be interested in the research. A flyer was made and given to the leaders to distribute among members (see Appendix A). Researcher recruited five participants for two interviews. The study consisted of five mothers caring for a child diagnosed with ASD. Prospective participants were provided with email/text and/or telephone number to determine if they were eligible for the study and wished to participate. It is noteworthy that the participants were the experiential experts on the phenomenon being studied. In other words, the researcher focused on the essence of the participants’ experience and how it felt to live their world. Therefore, this approach allowed the researcher to select the participants who closely matched the criteria of study, making the small number of participants appropriate for the phenomenological study.

Screening

After finding out the preferred method of contact and obtaining information about the prospective participants to determine if they were eligible for the research, the recruitment material informed participants that it was a research project. A consent form was provided which offered a balanced presentation of the risks and benefits that was devoid of anything misleading to the participants. In addition, questions about eligibility criteria were asked (see Appendix B). Once the prospective participants met the criteria during the screening, researcher and participants came to an agreement on a place conducive for both parties to meet, which was used as a central place/location for the interviews. The researcher reviewed the interview questions with participants and further explanation or clarification was provided when participants made inquiries, the researcher did not hesitate to explain the questions. After the first interview, participants were thanked, orally debriefed by the researcher, and given a $20 gift certificate.

Demographic Information

Participants were asked to complete a personal data sheet before the interview. This information included age, gender, social economic status, educational level, dialect spoken, years in the US, marital status, and family background (see Appendix B). Provision of detailed information about the participants allowed the researcher to move forward knowing the differences and similarities of the phenomenon under study. This means that researcher could not assume that no differences exist among the participants.

Additionally, the description of participants allowed readers and researchers to make a comparison across a replication of studies (Beins, 2009). The researcher used phenomenological approach in collecting the data. A “phenomenological data collection focused on the research participants in order to understand the full complexity of the participant’s experience. From this perspective, the researcher did not attempt to claim to generalize the findings (Bailey, 1992). The researcher conducted a semi-structured interview with the study participants. Researcher interviewed five mothers. An advantage of the semi-structured interview was that it allowed for personal and direct contact between the investigator and participants, and eliminated the non-response rate based on the skills and questions developed by the interviewer necessary to carry on the interview (Fisher, 2005; Wilson, 2003). The researcher asked questions, listened to, and reviewed responses from participants. A major benefit of collecting data through individual, in-depth interviews was that they offered the potential to capture a person’s perspective of an event or experience (Creswell, 2007; Dezin & Lincoln, 2008b, 2008c; Marshall & Rossman, 2011). The researcher recorded the information through audiotaping, journaling, and documenting. Intensive interviews were used to answer research question: what are the experiences of West African immigrant parents of children with ASD? The timeline for the interview was three months.

Data Collection Method and Material

The following steps were undertaken to conduct the interview:

1. Approval was obtained from the ICSW IRB to proceed with the research. The IRB approval process involved outlining all procedures and processes needed to ensure adherence to standards put forth for the study of human subjects, including participants’ confidentiality and informed consent. 2. Posting of flyers on the bulletin boards of various African churches, shops and places where West African families congregated. Flyer included the name and address of the principal investigator and the purpose of research which informed participants about researcher’s background and interest in interviewing West African immigrant parents of children diagnosed with ASD, eligible participants were asked to contact researcher by phone, text or email. The screening format included mothers from West Africa, at least 18 years and above, had obtained a high school diploma, fluent in English and/or spoke Twi and raising a child diagnosed with ASD for five or more years (see Appendix B). 3. Study flyers were distributed in person, via text, WhatsApp, or email, the purpose of the study was explained to eligible participants. Researcher made sure that participants who responded by text had time to talk so they could understand the purpose of the research. Participants who preferred the flyer to be emailed to them also received the same information. During this initial communication, the purpose of the study and the inclusion criteria was reviewed with participants to ensure they were eligible and willing to participate in all aspects of the study. Participants who met the criteria set a date, time for the initial interview to be conducted. The participants chose to hold the interview in a place that seemed conducive and comfortable for them. This included the home of participants

without the ASD child there at that time, a local church or a community center. Participants received reminders about the interview date and time prior to the scheduled interview. 4. At the start of the interview participants were asked to review and sign the study consent form and asked any question they had regarding the study. The researcher started by establishing rapport to enable participants to feel comfortable talking. Participants completed demographic questions before the interview began. The survey was designed to collect demographic as well as perceptual data. The researcher tried to keep the conversation going by using the interview questions as guidelines. If there was a need to ask follow-up questions, the researcher took note of that and jotted it down. The researcher made observations on the verbal, non-verbal signals, silence, and sending appropriate signal (Mann & Stewart, 2005). 5. Initial 60-90 minute, face-to-face, semi-structured interviews were conducted with each participant and, with their consent, the interviews were audio recorded as well. These in-depth interviews were personal and semi-structured, the aim was to identify participants’ emotions, feelings, and opinions regarding the subject of study (Langos, 2014). The interview was flexible which allowed participants to feel free to use any name they would like (for example pet names or pseudonyms based on the preference of the participants). Throughout the interview, researcher did an extensive audio recording and journaling or memo-writing for each subject, any observation noted was jotted down. The recorded interviews were sent to a transcription company (REV) to be transcribed. Transcripts from the initial

interviews were then coded for major themes. The results from this analysis were used to amend the interview guide, which included deleting questions or adding new ones. The researcher reviewed the first interviews and followed up on the participants' responses. 6. At the end of the first interview, the data was analyzed before the second interview. Participants were asked to schedule the second and final interview. The date, time, and location were confirmed before the second interview was done. 7. Consultation with committee chair took place after the first interviews so that the researcher could discuss and reflect on the process of analysis. This process gave the opportunity to elicit detailed, in-depth rich, and first-person accounts of the participants phenomena and experiences. 8. A second, 30-45 minute interview was conducted with each participant. 9. Again, the recordings from the second interviews were transcribed and coded for themes. 10. A final list of the emerging categories and subcategories were sent to the subjects for a final validity check or what is commonly known as member-check. This was done via email. Their edits and observation were taken into consideration in the formulation of the final categories and subcategories.

Procedures for Data Analysis

After the interviews had been conducted, the next step was to analyze the data. The goal of qualitative data analysis is to uncover emerging themes, patterns, concepts,

insights, and understanding (Patton, 2002). The following steps were taken during the data analysis: 1. Transcription: During the transcription process significant statements from field notes observation, self-memoirs, and documentation were highlighted and reflected upon. This process is called horizontalization which helped to provide a more indepth understanding of how participants experienced the phenomena of caring for a child diagnosed with ASD (Creswell, 2007). The following is a snippet of three transcribed responses posed to three of the research participants to one question The researcher asked: how did you feel when you heard that your child had been diagnosed with autism? Bea responded: When I first heard that my child was diagnosed with ASD, it was a blow to me because I didn’t have any idea or I wasn’t even aware of anything. I thought everyone’s child is the same, you know. But I was told that it was not just myself, but other people have the same issue. So, I was introduced to some few families that have the same problem. Vicky responded: Very confused and I didn’t understand what autism really meant back then. As I said, I didn’t really research on my own. I didn’t do any research and didn't know how to handle it . . . because it was all new to all of us. Yeah. Roro responded: “It was scary, I think for any mother, you start to ask yourself, is something wrong with me? It was a very scary process . . . There will be days where you just want to cry.”

2. Organization of data: The researcher read through the written transcripts several times and obtained an overall feeling for the data. Significant phrases that pertained directly to the experience of participants were identified in the formulating of meanings and clustering them into themes common to all of the participants' transcripts. After reading each transcript carefully, summary notes were made for each participant. Summary of the data is important because it created a profile of each document and/or each individual research participant (Creswell, 2013). 3. Rereading and listening: Repeated rereading of the transcripts and listening allowed researcher to immerse and familiarize herself with the data which provided the opportunity to make discoveries that were meaningful and noteworthy for the study’s analysis. It was also necessary that the researcher read, reread, and reexamine all of the data to make sure that nothing had been missed or coded in a way that was inappropriate given the experience of participants (Creswell, 2013). 4. Coding the data: The data was assigned with codes based on the essence of what came up. The purpose for the coding was to look for repetitive patterns or consistencies. During this process, the data was put into categories by reducing all that had been collected to a manageable database and grouped into useful ways. This step is known as a “winnowing process” (Creswell, 2009; Seidman, 2006, & Guest, et al., 2012). In other words, researcher prioritized the themes that were relevant for the study. Coding began with each participant as soon as interviews were recorded. The coding followed Bryman’s (2001) process of qualitative data analysis. First, researcher read the text as a whole and made notes at the end. The researcher went back and forth with the data then looked at what it was about and

took note of the major themes that emerged and then grouped cases into categories. Secondly, the researcher highlighted key words by color coding them. This process provided the opportunity to identify the words that were in line with the theme. Thirdly, the researcher reviewed the codes and eliminated repetition, combined similar and different codes that emerged, identified significance for the participants and the relation of codes to research question and research literature. An example of a code was lack of awareness. One participant expressed a lack of awareness: “originally, before I came to this country, I did not know anything about autism.” Another participant expressed a lack of awareness: “You know, I never knew. I never knew till now, this is not something, I mean maybe, but when we found out and were trying to see if anyone knew something about this from people at my church, one person said they knew someone, but I don't think so, if they did, I am not as aware, you know.” Lack of awareness was usually expressed in the participants’ thoughts on autism and the need for more discussion in the community. Once the chunk of data was identified, it was classified into codes, categories, and themes derived from the meanings of the participant’s experiences, the researcher then created a visual chart to reflect a summary of the participants’ responses. This was done in tandem with the use of a table with a numerical pseudonym attached to each participant. Pseudonyms were used to maintain confidentiality. The researcher created a demographic chart to reflect demographic information of participants. Other charts consisted of labels, letters, and/or color coding, this enabled the researcher to examine and analyze data in a confidential and structured way. As a final step, throughout the coding and data analysis

process, the researcher consulted with the dissertation chair to cross check for validity and credibility. The second pair of eyes reduced the researcher’s biases as much as possible. Moreover, the researcher contacted the participants who provided the raw data to verify with them about the interpretation and explanation of the data. This was done by asking participants if the researcher captured the essence of their experiences. Thus, the researcher’s intention was to corroborate the interview data by making sure that the data was well documented with evidence. At the end of the end of the analysis for the primary research question, there were 85 significant statements which were placed into 37 initial codes, which were grouped into four categories and, finally, placed in four themes to answer the research question. 5. Emergent themes: This stage allowed researcher to put the previous notes into emergent themes reflecting the original statements of the participants and the researcher’s own reflections and interpretations. 6. Developing data summary table, writing memos/journaling: During this process, data summary tables were created to summarize participant data. The researcher got in the habit of filling out the data summary table so that no information was lost. These tables also provided the matrices in which participants under pseudonyms are listed. (Creswell, 2013). The researcher engaged in memoing and journaling, a concept by Strauss (1987) which involved recording and writing notes about certain occurrences or sentences that seemed of vital interest. This allowed researcher to write down internal dialogue and what they thought. These notes formed the basis for findings, interpretations, and conclusions.

7. Formatting categories: Formatting categories, linking categories using meaningful system or network, creating themes, and interpreting those with themes were embedded in the analysis. Thus, the researcher kept a record of emergent codes, their content description, and a brief data example in a codebook manually. The work was situated within respect to prior research and was compared and contrasted with issues that had been raised by the broader literature. Based on the analysis and synthesis, researcher was able to move forward and thought about broader implications of the research. Toward this end, principal investigator formulated several conclusions and developed various practical and research related recommendation (Bloomberg & Volpe, 2012).

Statement on Protecting the Rights of Human Subjects Ethical consideration. The participants in the study under consideration did not receive any direct benefits; however, the primary benefit of this study is its contribution to the body of knowledge and the literature on the parenting experiences of the West African immigrants in the United States. The study also elucidated the meaning of caring for a child diagnosed with ASD from the parents’ perspective. One of the secondary benefits of this study to the participants is that it gave the opportunity for participants to express their views and subjective experiences of caring for their children diagnosed with ASD. For the most part, the participants shared their experiences in a way they might have not done before. In this research study, ethical issues relating to protection of the participants was of vital concern (Berg, 2004; Marshall & Rossman, 2011; Merriam, 1998, 2009; Pring, 2000;

Punch, 1994; Schram, 2003). A social science researcher is responsible for both informing and protecting respondents. The following was a guiding lens for ethical consideration in the research. The researcher was concerned with participants’ confidentiality hence consent forms were clearly stated in a language free of jargon, that way, participants would comprehend and understand. As part of the informed consent protocol, participants were given the opportunity to validate their understanding of the purpose of the study, benefits, risks involved for participating in the study. First and foremost, informed consent remained a priority throughout the study. Written consent to voluntarily proceed with the study needed to be provided by the participants. Second, participants’ rights and interests were considered of primary importance when choices were made regarding reporting and dissemination of data. The names, and/or other significant identity characteristics of the sample organizations were kept confidential. To ensure the proper and secure storage of research-related records and data, cautionary measures were taken so that nobody other than the primary researcher and the ICSW dissertation committee would have access to this material. Risks associated with research was taken into consideration (Bloomberg, 2012). The risk related to participating in this research included issues related to the emotional content of the strong effect of participants. The researcher made sure that any information of heightened emotion and discomfort was taken into consideration by stopping interview when needed and helping clients to debrief before continuing. Confidentiality was of paramount importance in this study hence researcher took precautions to minimize risk throughout the entire project. A pseudonym was used to replace the actual names of

participants. All information collected pertaining to their personal information were in placed in a password protected computer accessible to only researcher and would be destroyed once a conclusion was made of the written study. Bloomberg and Volpe (2012) noted that regardless of the terminology used, qualitative researchers must continue to seek to control for potential biases, that might be present throughout the design, implementation, and analysis of study. This was accomplished by steering clear of deception by providing the purpose of the study with participants and ensuring that participants had had a thorough understanding of their role and the researcher’s role in the study. Participants were encouraged to genuinely give their feedback to researcher on the study outcome.

Credibility.

According to Bloomberg and Volpe (2012), the criterion of credibility or validity suggests whether the findings are accurate from the standpoint of the researcher, the participants, and the reader. Two types of validity were tested in the study, namely, methodological validity and interpretive validity. To enhance the interpretive validity of this study, strategies such as clarifying assumptions upfront, and steps through which interpretations were made were charted through journal writing. Other participatory and collaborative modes of research including the search for discrepant evidence and peer review was used (Lincoln and Guba 1985). This entailed looking for variation in the understanding of the phenomenon and seeking instances that might challenge researcher’s expectations or emergent findings. Reviewing and discussing findings with

professional colleagues was a way to further ensure the participants' reality were adequately reflected in the findings.

Dependability.

To provide a thorough explanation of the data collection and analysis, the researcher provided an “audit trail,” a process whereby data is collected and analyzed in a way that other researchers would be able to gain access to the data (Bloomberg & Volpe, 2012). Also, the researcher conferred with other colleagues to cross check the work to ensure its consistency thereby reducing potential biases. To ensure the quality of the findings, the researcher described the paradigm, role and background of researcher.

Transferability.

Detailed information about the research so that future researchers will be able to understand and transfer the researcher’s findings is of paramount importance to this study. Qualitative research is indeed characterized generally by “thick description” (Dezin, 2011). In other words, it is a “vehicle for communicating to the reader a holistic and realistic picture” (Bloomberg & Volpe, 2012, p. 113). The details of the information would be placed in context in this particular study based on its relevance.

Limitation and delimitation.

There is no study without limitation and delimitation. First, the qualitative method has its shortcomings, some of which may be found in this study. One limitation is the researcher’s bias, assumptions, foregrounding, interests, perceptions, and needs. One method the researcher used to minimize biases from influencing participants’ dialogue or the study analysis, was to identify any assumption at the beginning and throughout this study, there was an ongoing check with dissertation chair to ensure these biases or assumptions were not tainting the data. This is also commonly known as bracketing in phenomenological research (Moustakas, 1994). Another limitation is that the findings could not be generalized. The issue of subjectivity arose from the background and knowledge about people from West Africa and currently researcher is a member of one of the churches and associations. In addition, it appeared some of the participants had some reservations and could not come forth with all the information needed. Recognizing these limitations, the researcher acknowledged research agenda and stated assumptions upfront. Pseudonyms were employed to avoid all biases due to familiarity with names. Denzin and Lincoln (2003) discuss the role of the qualitative researcher and concluded that the researcher is considered an instrument of data collection. In other words, data are collected through human participants or respondents as opposed to questionnaires or machines. The whole idea of this research emerged as a result of a pilot study that researcher embarked on in Ghana, West Africa. The study was conducted with participants who were parents of children with developmental disabilities. In the findings, parents felt stigmatized and marginalized. The parents lacked the knowledge and

resources for caring for their children with ASD. With immigration on the rise among West Africans (Thomas, 2011), a considerable number have started having children and among this group, there are some who have children with ASD that require to be studied.

Conclusion

West African immigrant mothers whose children have been diagnosed with ASD may have both positive and negative reactions to having to care for their children. The mother who comes from a culture that does not embrace disability well can often feel confused, frustrated, guilty, and embarrassed about having to deal with the diagnosis. Mothers also wonder how they would be accepted in their community. This makes it more difficult to accept the diagnosis and they may go into denial. Currently, there is limited research on the parenting experiences of West African immigrant mothers who have children who were diagnosed with ASD. There has only been one study on African immigrant parents whose children were diagnosed with ASD and this study focused on Somali immigrant parents in Minnesota. This study was conducted by the Minneapolis Department of Health in 2010 and was completed in 2013 (National Institutes of Health [NIH], 2013). The purpose of the study was to raise awareness about the accessibility of resources for parents and to promote cultural understanding among professionals working with this group. This study aimed to fill the gap in research on West African immigrant mothers whose children were diagnosed with ASD. By conducting this study, their knowledge and understanding of ASD and as well as the dynamics of their experiences would be made

known. It is hoped that the findings will contribute to further research and lead to recommendations that can inform future support programming for this population.

Chapter IV

Results

Introduction

This study aimed to answer the research question: what are the experiences of West African mothers caring for their children diagnosed with ASD? The participants for this study consisted of five mothers who had children diagnosed with ASD. All participants spoke fluent English and face-to-face interviews were conducted at their private places of choice. Four participants currently live in Illinois (n=4) while one currently lives in Wisconsin (n=1). Based on the nature of the study, purposive sampling was used as a data collection method for the parents who are caring for a child diagnosed with ASD. Four of the participants are married, and one was divorced. As the interview focused on West African mothers, only the mothers were interviewed. This chapter provides a discussion on how the analysis was consistent with a phenomenological approach and how the analysis is connected to the research question. Additionally, a profile of each participant was presented. As a protocol for confidentiality, each participant was given a pseudonym from the researcher. The five participants’ in this study are: Bea, Vicky, Roro, Yomi, and Adele. The terms “mothers” and “participants” are used interchangeably.

Table one contains the demographic data of the participants.

Table 1: Demographic of Sample Mothers Demographic of Sample Mothers. N=5 Name

Bea

Vicky

Roro

Yomi

Adele

Age

Marital Status

Married

Divorced

Years in the

Ghana

Gambia

Sierra

Nigeria

United States Country of Origin

Leone

Number of ASD 1

Associate

Bachelors

Masters

Ph.D.

Yes

Child/ren Educational Level Employment

In order to present the data on each of the overarching themes and sub-themes, the following presents the basic information and description of each participant. In addition, a passage from the interviews with each participant will be highlighted to establish the general orientation that the participant had toward her experiences of caring for a child diagnosed with ASD.

Profile of Participants

Bea. Bea is a 46-year-old immigrant mother from Ghana. I interviewed Bea at her house which was convenient for her. She was quite excited to talk to me about her experiences. She immigrated to the US at the age of 19 when she married her husband. She has lived in the US for 26 years. Both Bea and her husband have been married for 28 years and they have five children together who were all born in the United States. Bea identified herself as a Christian and a very talented cook. Bea stated that, oftentimes, she cooks for the Ghanaian community during functions such as baby naming, funerals, and church programs. Bea describes herself as sociable, friendly, and someone who gets along with everyone in the Ghanaian community. Bea shares her experiences with much enthusiasm. Her second son (K) is 21 years old and was diagnosed with ASD at the age of two. Bea described how a child with ASD can act and how a parent can respond: When my son is trying to say something, you are not getting what he is saying, and when you don’t get him, he gets frustrated. So, if the child is frustrated, don’t be angry at the child. Be patient with him, get closer, love him more. That’s how I dealt with my son, because especially, he dragged you instead of saying "come here"' he would especially come and hold your dress and just drag you and take you to where he wants you, when he was three, four, five years old, more patience with him, more patience. Bea could not understand what was happening with her child. At first, it was difficult for her. She felt that her son was not able to express himself but then she decided that she

needed to have patience with him. She understood that her son was different. Even if she was frustrated, she had to try to understand him.

Vicky.

Vicky is a 42-year-old immigrant mother from Gambia. She is married with three children, including her 16-year-old daughter (middle child) diagnosed with ASD. Vicky’s oldest and youngest children are both boys ages 18 and 10, respectively. She considers them as “independent” and focuses more on her daughter. She is currently a stay-at-home mom and spends most of her time with her daughter. Vicky stated that when her daughter was three years old, she noticed some changes in her communication but felt her daughter would grow out of it. She added that it was not until her friend pointed out the “odd behavior” of her child that she had concerns about her. Vicky said it took her a while to express her concerns to the pediatrician because she was not psychologically prepared to hear any “bad news.” Her daughter was finally diagnosed with ASD at the age of 8. Vicky stated that it was a “big blow” to her and has since been doing follow-ups and enrolled her child in a special needs school. Vicky recalled how she identified her daughter’s needs: Before, she was just crying when she wanted something and she would just grab things and if you try to take them from her, she would be so angry and, I couldn’t understand her. But because of my experience with her other siblings, I could notice a difference and I could help her halfway, but I couldn't understand everything. Here, Vicky describes how her child was behaving before she realized that her child needed to be seen by a specialist or a pediatrician. Her child’s behavior indicated that she

was different. She didn’t understand her child and that there was something wrong, but she was able to see that there was something wrong because she was able to compare her behavior to the behavior of her other children. They were different. That helped her understand how her daughter was unable to communicate her needs. Overall, it was a difficult process for her to understand her child.

Roro.

Roro is a 38-year-old mother from Sierra Leone. Both Roro and her husband immigrated to the United States 16 years ago with the diversity visa lottery (green card). They have two biological children, both boys, that are 10 and 12. Her 10-year-old was diagnosed with ASD at the age of two following his two-year doctor’s appointment. I interviewed Roro at the African community center where she teaches new immigrants from West Africa life skills and how to integrate into the US community. Roro has a bachelor’s degree in business administration. She identifies herself as a Christian. She considers herself affable and sociable. She owns an African restaurant which she described as thriving. With regards to her experience caring for her child diagnosed with autism, Roro was open and shared with me what the journey has been like: With a child diagnosed with autism, you need to pay attention to all the cues. You know, even the little ones like hunger cues. You have to pay attention because when my child was hungry at the age of three, he would scream and cry. It was so loud, and it was so traumatic for him, you know as opposed to my daughter who says, “I’m hungry and can I have a piece of bread or can I have orange juice?” So, you have to

work harder when it comes to those children, you have to be very sensitive. You cannot take anything personal; nothing is directed towards you. Roro had her own unique experience. Before her son was diagnosed, she was trying to understand him, and she believed that what he was experiencing was traumatic. She put herself in her son’s shoes and she concluded that her child was helpless. She could not identify what it was. To understand what was happening with her son, she compared her son’s behavior to how her daughter behaved. Her daughter could ask for things with language, but her son could not. He cried a lot and it was confusing for her to understand what he needed. His development was quite different. She learned that she had to be extra sensitive to understand what her child needed.

Yomi.

Yomi is a 44-year-old mother from Nigeria. She has lived in the United States for 18 years. Both Yomi and her husband have been married for 20 years and have three children, two girls, ages 17 and 10, and a boy, age 11. Her youngest child is a 10-year-old girl was diagnosed with ASD at the age of three. Yomi has a master’s degree in nursing (MSN). Yomi worked as a nurse for four years but had to quit her job to care for her child full time. I interviewed Yomi at her church where she volunteered at the children’s service. She was warm and open to the interview. Yomi shared her struggles with caring for a child with ASD: When she was two, I just noticed things were not right and then it was later at the school she was going to that confirmed it. The social worker told me about her observation and referred to a neurologist for further testing. I took him to the doctor at

UIC and he explained to me that the child has autism. I was hurt, I was mad at myself, I was mad at God because why would he give me this? You know how much I love school! You know how much I sacrificed! You know, get this nursing degree and now this is what I have to deal with! But I have learned a lot of positive things from this. For Yomi, she was working as a nurse in a pediatrician’s office and she has seen children with disabilities, but her son’s diagnosis was a shock to her. She did not want to accept that her child was different. She had to give up her work as a nurse. Her dream was crushed; she came to the United States to make a better life for herself and she had to give up that dream. The idea was to get an education and then earn money through her work. That would make her successful. She was grieving the loss of her work and her inability to apply her education. She could probably go back to work, but, at the same time, she recognized the joy that she felt about being there for her child.

Adele.

I interviewed Adele at the Community Center for Nigerians in Chicago. Adele has lived in the United States for the past 18 years. She is from Nigeria and she lives in Wisconsin. She is a 51-year-old divorced mother of two girls. Both children were diagnosed with ASD at the age of 4 and 5, respectively. They are both 12 and 14 now. According to Adele, once a diagnosis was provided, a social worker initiated the use of resources for her. Adele recounted when she and her ex-husband would not talk for days because he blamed her for having two children with autism. This continued until Adele said her ex-husband moved to Nigeria and asked for a divorce which was finalized ten

years ago. Adele has been a lecturer in one of the colleges in Wisconsin for over 14 years now. She expressed her experience with both of her girls who she reports are on different levels of ASD. Adele was vocal and remained positive during the interview. She also talked more about her Christian faith that she relied on and the resources provided by professionals that she has been able to utilize during her journey with two children diagnosed with ASD: “I try not to think about it, because it leads to nowhere. My children demonstrate

very different and unique traits and, sometimes, some were very similar.” Adele seems to be more knowledgeable because she was able to utilize the resources that are available. She has a Ph.D. When she saw that her children were not reaching appropriate stages of development, she sought help. She was grateful that she was able to make use of the many resources that were made available in the United States including receiving help from professionals. The following are the detailed descriptions of the four overarching themes that emerged from the data namely Personal and Emotional Response, Cultural Views, Traditional and Religious beliefs, and Understanding the Professional Roles. Each of the overarching themes were associated with sub-themes as noted in the following table:

Table 2: Profile of Participants

Overarching Themes

Associated Sub-Themes

Personal and Emotional

•

Anxiety

Responses

•

Shame

•

Disbelief, Anger & confusion,

•

Concerns with child’s developmental milestone

•

Knowledge about ASD

•

Impact of ASD on the mothers

•

Feeling cursed

•

Neediness of the ASD child

•

Responding with silence

•

ASD less sympathetic than deafness and blindness

•

Mentality of the people (People’s beliefs about ASD)

•

Effects on relationships

•

Effects on community interconnectedness

Cultural beliefs

Traditonal and Religious Views

Traditonal Views •

Curse from ancestors

•

Extended family prioritized over the nuclear family

Religious views •

Faith

•

Prayers

•

God knows (Wisdom of God)

Understanding Professional

•

Advocates

Roles

•

Support

•

Resources

Overarching Theme 1: Personal and Emotional Responses This section of the results is a reflection of the parents’ subjective experiences of caring for a child diagnosed with ASD. All five participants with children diagnosed with ASD shared their experience in raising their children. Participants discussed how they have been on a personal journey since the diagnosis was provided. All five participants expressed “shame, anxiety, disbelief, and confusion” as emotional responses they had after hearing that their children had been diagnosed with ASD. Other responses that can be subcategorized as emotional responses included what ASD meant in the community, feeling cursed, trying to figure out what the child’s needs were when they could not verbally express them and the strain that ASD places on the mothers. The following are a few responses from the mothers.

Shame.

All five participants expressed shame as an initial reaction to the news of ASD. For example one participant stated that the behavior of her child in public was shameful. Yomi commented “I feel like sometimes people look at us differently, and so I feel like we may not fit in or like them, it is shameful, it is embarassing.”

Anxiety.

All five participants explicitly recalled their feelings of anxiety about going to the doctor’s office regarding their child. Roro had anxious feelings and decided to do her

own research when she saw that something was not “right” with her child (D). “When (D) was two years old, he acted strangely. His face didn’t look right. He couldn’t sit still so I went online and started to do my own investigation. I was very felt very apprehensive.”

Disbelief.

Disbelief was identified as a significant emotional response by the mothers during the interviews. Some said they didn’t understand at all when the clinicians spoke with them so they were left with feelings of disbelief and uncertainty. Bea stated: “We didn’t even know how to handle the whole issue of him not talking, holding our hands, and pointing stuff out, so we went along with him. But honestly, I didn’t even see that coming.” Yomi stated: “You know, this is really hard. I prayed and I tried to understand why God would do this. You know, why I does my family to have this. It's hard, you know.” Roro stated: “It was a challenge to me, it was about me, and not my child. I felt like, what did I do? Did I do something wrong? You ask yourself all these questions, what did I do wrong?" Vicky stated: “It’s a whole package. I feel like why me? Why did I have to come with this child, you know? Why did this happen to me? How people feel about me and my child.”

Anger.

During the interviews, four out of five expressed anger as their initial reaction. Anger was defined by the participants as a negative emotional response which they had to address so they could move on with their lives. Bea described feeling angry at the doctor when she took her child for a regular check up and was told her child had ASD, "My first reaction was that I was upset. I didn’t see it coming. I was angry and confused because I wasn’t sure if they were telling me the truth.”

Confusion.

All five participants spoke about how they felt confused about how to handle the issue and how community members would perceive them. Yomi, who knew much about ASD, due to her educational background, stated, “Um, when you go through these things, if you don’t have an outlet, it can be very, very confusing and frustrating. It isn't easy and I was very concerned.”

Concerns about child’s development. The parents expressed concern about the developmental milestones of their children at different age levels: Adele responded: I have two daughters diagnosed with ASD at different ages. My older one was diagnosed at the age of four and the younger one before she was two. It has been a tough journey. My children demonstrated very different, unique traits and,

sometimes, some were very similar. My older one is quieter, gentle, and has some words. My younger one has little to no verbal language, but is able to communicate. Roro responded: When we first noticed the different character traits and the different facial expressions, it seemed out of the norm. He wasn’t playing with his toys, he did not want to play around with other children. I believe by the age of four they started seeing regression. He still used his feeding bottles and, sometimes, he puts his hand in my bra just to get some comfort. Vicky responded: At the age of two, I noticed that there were a few issues. We are not doctors, we are just mothers, that’s the first and foremost. So I noticed a few character traits that confused me a little bit, but I just thought, he is two years old. So I went online and read about children in general and, when I took him to the doctor, they confirmed that he was autistic. Bea responded: The first thing that I noticed was him not saying anything. That is when I said, there is something wrong with him. He used to say mummy, daddy, but then all of a sudden, nothing. It’s like somebody had pressed the mute button in his brain and then he wasn’t really saying anything when he was two years old.

Participants’ Knowledge About ASD

Study participants shared their knowledge about ASD. Three of the participants did not know anything about ASD. The other two knew about ASD based on their chosen

fields as a nurse and an educator. The following statements are related to participants’ knowledge about ASD. Roro describes the lack of knowledge about ASD before coming to the United States and the lack of familiarity of the diagnosis in her culture: “Originally, before I came to this country, I did not know anything about it, some people do not know. We have mothers and grandmothers who have no idea what this disorder is all about.” Vicky describes the day she heard about ASD for the first time and her quest for more information about it. She immediately started going on the internet to read about ASD. She also went to the library to borrow materials related to ASD: “I didn’t know anything about autism, my child got diagnosed and I had to do some research.” Bea did not know anything about ASD, the first time she heard about it was at the doctor’s office. She describes her reaction: “All I said was 'okay' because I didn’t know much about autism. It was a blow to me but I was told that it was not just myself and that other people have the same issue.” A few of the participants stated that they had prior knowledge of ASD before the diagnosis. This knowledge was tapped from the internet and/or their observations of children with neurological issues. Adele, for example, stated that she took a course in child development and disability that opened her eyes to the various neurological problems that some children have. When her children were displaying those signs, she was able to tell what it could mean, but she was in denial for a while because she felt that it was one thing to read and have knowledge about something and it’s another thing to experience it. Yomi, who had worked in a pediatrician office prior to her child’s diagnosis, was devastated. She stated that it was overwhelming to see other people whose

children were being brought to the doctor’s office for examination and being given the diagnosis. She also mentioned that it was such a difficult experience seeing other parents being informed about ASD and go through their journey. This was hard for her to experience it herself. Yomi recounted that she knew about ASD and had seen a few children with the condition before her son was diagnosed: I had an indepth knowledge on ASD due to my schooling. I took some classes in nursing school where I had to learn about it. I even wrote a paper about it but, oh boy, it is easy when you are not the one who has to go through all the caring. Adele recalled a day in her early childhood education class when she gave a talk on the topic of developmental disabilities in children: “When I first read about ASD, I was fascinated about the ample research and some strides that have been made. It was eye opening.” All participants sought information and resources for their children after diagnosis to ensure they were adequately given resources they needed to care for their children. Some of the participants stated that they decided to research ASD online. They spoke with people in their social networks who had children with the same diagnosis, schools, and medical and behavioral professionals/clinicians which enabled them to begin to understand more about how to help their children. The mothers in this study believed that they had the opportunity in the United States to learn about the condition as opposed to their culture in their countries of origin.

Impact of ASD on the Mothers

All five participants talked about how their lives were impacted after receiving their child’s diagnosis. The common thread about the impact of the ASD diagnosis was developed from six sub-themes: the level of support their children needed, community involvement, change of plans, marital and family relationship, positive attitude, and advocacy. As Adele stated “People will ask “what’s wrong with your child?” “As a mother or father of a child on the spectrum, you deal with so many other issues example food, digestive issues, sensitivities dysregulation, incontinence and others. You lose much too.”

Level of support.

All the parents have come to know that people with ASD can be very different from one another. Adele stated that: My children demonstrate very different and unique traits and, sometimes, some were very similar. My older one is quieter, gentle, and has some words. My younger one has little to no verbal language. It has not been easy raising these two girls, but God knows. The state of Wisconsin has been exceptional in the help and support provided to children and adults with special need. Bea’s son had severe asthma coupled with the ASD diagnosis: My son had a bad asthma then he was diagnosed with autism but I got help from the doctors and other people along the way. At first, he wasn’t communicating at all, but they brought all these professionals to us and, my son started talking, but you couldn’t

hear him clearly or you could ask him what he really meant before getting a clear understanding. When he writes, you can clearly understand him. When he was young, from 2-10 years old, we helped him a lot with dressing up, grooming, and how to interact with people, but now he is able to do a lot of things for himself too. Yomi explains that ASD has been a “blessing in disguise” allowing her to have positive connections with her child and learning to be patient along the way. As devastating as Roro felt about her son’s diagnosis, she is happy about the resources available in the United States and thinks they have contributed to her child’s improvement. Roro stated, We have put in the work, he is quite independent, he goes to school with the normal kids. There are a few hiccups here and there but, oh, everybody has flaws. To the best of my knowledge, I think we have done a lot for him to get to where he is now.

Community involvement.

During the interviews, all five participants stated caring for a child on the spectrum impacted their community involvement. Yomi explains, Autism does have an impact because I am not able to be as involved with my older daughter. She has so many activities, she is always doing something or is a part of something and I’m not always able to attend. I feel like I am not being as supportive as I can be, even with the activities in the community, because of this. It's like I can bring him with me, but why? He is not familiar with the environment. Vicki found that her feelings of isolation, as a result of having a child with ASD, were so difficult that she pulled away from community participation. She stated that, “Because

I’m from that part of Africa, we know a lot of people. We are close to one another. We know each other and everyone. So, with that diagnosis, it made me feel isolated. It’s put a lot of pressure on me going out and going to functions in my community.” Adele is involved in educating members in her community when she can. “I am blessed to have extended family and many more aunties, uncles, nephews and nieces who are involved with my children. I try to get involved in community activities whenever I can, and I get the help from other family members.” Roro is actively involved in her Sierra Leonean community and she has been educating and helping new immigrants with resources and facilitating other forms of assistance for them. Bea talked about the active role she has been playing in the Ghanaian community. She cooks for the community during parties, baby naming, funerals, and Ghanafest. She also said that she has remained openminded and that her child’s diagnosis did not hinder her from interacting with members, being part of the community, and playing a pivotal role. She felt that she was needed in the community for cooking and she saw that as a gift for her community. Here is what Bea had to say, “I told you that I’m a cook. People love to call me to help in my field of cooking. Not just our cultural food because I have learned how to cook American food too. I’m a person who can make you happy with food.”

Change of plans.

All five participants revealed that, as immigrants in the United States, they had plans to work and support their family financially. However, there was a shift in plans due to

the diagnosis. The participants were asked “What changed for you when your child was diagnosed?” Here is a response from Vicky: “It changed so many things. All my plans were affected because I had to focus on her and I couldn’t rely on anyone else to look after her. So, I had to sacrifice everything and be there for her.” For Yomi, having gone to nursing school and getting her MSN was a dream come true. However, she felt the needed to relinquish her nursing career to be a stay-at-home mom for the sake of her child diagnosed with ASD. “You know how much I loved school. You know how much I sacrificed. Getting this nursing degree and then having to deal with this, this wasn’t in my plans at all.”

Marital and Family Relationship

Marital.

Four out of the five participants are currently married, the fifth is divorced. They were open about their experiences in their marital and family relationship. Roro stated that both her and her husband accepted their child’s diagnosis differently in the early stages. According to Roro, being a mother and knowing that she has to be emotionally, psychologically, and physically involved with the care of her child, she accepted the challenge, but her husband distanced himself. She said, "This was tough and rough" for her. However, with the help of counseling from their pastor and health care professionals involved with the treatment, her husband has been “tremendously supportive” with the care of their autistic child. This was a blessing to her. She said, “Just like any marriage, it goes through its storms and, in the beginning, it was very tough for us, but we came

together and sought help from the community. From this, we were able to soothe each other and our love for our son kept us closer together. It has just strengthened our bond even more.” Bea spoke along a similar line. She said that having to care for her child was difficult in the beginning, but her husband's support and encouragement boosted her confidence in their relationship. For her, the child’s ASD diagnosis has been a “blessing in disguise.” She explained how she and her husband took turns in helping their son through his challenges, being tightly knitted together. In sharing her marital experience, Yomi expressed her displeasure with how her husband responded to the care of their child and she felt she has been alone while she has been taking care of her child who is now 16 was diagnosed. Yomi stated that her husband has not been supportive like he does for their two neurotypical children. She expressed her sadness about her husband’s aloof reaction towards their child with ASD. She added that her husband was mostly home, but after the child was diagnosed with ASD, he distanced himself from their child even when they wanted to get close. Her concern is that her husband is hurt and ashamed that he has a child with ASD. She describes her disappointment with her husband, “He does not even acknowledge, when people ask him how many children he has, he only mentions the two. He talks about them so much, but with (D) he never mentions his name. I feel sad about it, it hurts.” For Yomi, her husband’s aloofness and denial makes her feel angry and frustrated. Adele shared her painful experience about her marriage and subsequent divorce after she received the diagnosis of her two children with ASD. She recounted the day she went to see the doctor with her oldest child and was given the diagnosis. When she went home

and informed her husband, he did not show any sign of rejection: “He was just not involved with her and I thought he would get over it someday, little did I know I was going to have another autistic child.” According to Adele, the news of her two children being diagnosed with ASD was too overwhelming for her husband who started doubting his faith and blaming her for giving birth to those children. She said she tried several times to explain to her husband and asked for his support, all efforts proved futile. Her husband finally broke his silence and asked for divorce. He then moved to Nigeria and has not been involved with the children. She said, “My story is a lot more complex and complicated than these words. But God gives hope, helps and holds us.”

Positive attitude.

All five participants mentioned positive attitude as a common thread and something that made them strong. For the mothers in this study, positive attitude was something they had to adopt through their experiences with caring for their children diagnosed with ASD. Roro stated that after the diagnosis and then educating herself and the family, she became more patient with her son and more and more loving because she understood why he was so frustrated and didn’t think like the rest of the other children. Yomi describes her attitude in this statement “I was never a patient person before then, but now I am patient and not just with him but with everyone. There was a time when my tongue was hot and my hand was heavy. Now I take my hands and cover my mouth so that my tongue is no longer hot. So, I just have patience.”

Bea believes she has a broader look at how to interact with people. Her experience with caring for her child diagnosed with ASD has made her more compassionate, caring and loving other children. Other positive attitudes can be seen in participants’ statements about their strengths, resilience, perseverance, and reliance on their religion as a source of solace and peace.

Advocating for child.

During the interview, four out of the five participants identified advocacy as a powerful tool they have come to appreciate. For these mothers, advocating was defined as understanding their child’s diagnosis and providing family and members in their community the information about the diagnosis to help dispel myths and erroneous perceptions. The mothers explained that they decided to take the responsibility into their own hands in their encounter with doctors, teachers, caregivers, therapists, and other professionals. Notwithstanding, the mothers navigated through the system as they relied on the knowledge from their child’s doctors, specialists, special education experts, parents of kids with similar special needs, teachers, and anyone else who could provide information. Adele has engaged in advocating for her two children in the past fourteen years. She said, “Once a diagnosis was provided, a social worker began the journey with us with school and home therapy." Vicky said she decided to learn the facts about ASD from the initial diagnosis to treatment options, educational choices, and federal and state laws protecting children diagnosed with ASD. She shared her involvement with the school and the teachers to have a healthy relationship with them. This allowed her to gather more information to

become her child’s advocate. In the following statement she said, “It is important to keep calm and advocate about your child’s unique needs. With the knowledge that I have about autism, I am looking into raising more awareness for people in my community.” Bea, on the other hand, expressed her deep negative sentiment about the school system labelling children as special needs. She felt that the more ASD was mentioned repeatedly by others that it might have an impact on her son. She also expressed disappointment with the school system for giving her son a lower grade level education, she felt her son was not challenged at school. She also felt that the school system failed to make provisions for her son to transition to college or a trade school and that they “got rid” of the children, leaving them stranded after special ed high school. According to Bea, her son was put in special ed class which she felt her son did not belong, but she could not advocate for him because she did not know how to go about it and respected what the professionals told her. Here is what Bea had to say: They grouped him and placed him in a class with people who were severely autistic, that’s why he is . . . Because sometimes when you say something to somebody so many times, they think they are that way. But now that he's grown up and left the school system, I see him like he’s more mature and independent and all that. Right now, I wish somebody could have helped my son.

Overarching Theme II: Participants’ Cultural Beliefs

The participants described the cultural beliefs around ASD. According to the sparticipants, West African typical cultural responses toward ASD can be categorized as follows:

•

Silence: The participants stated that the West African community would tend to

stay silent about disabilities, including ASD. They remain silent because it is “not acceptable” because it is considered to be a curse or a form of bad luck. It is also considered shameful. They then decide to stay silent about it. •

Unknown causes: The West African community does not know what caused the

disability and they feel blamed for the presence of the disability. •

Lack of understanding: They have no idea that ASD is a type of disability like

blindness. Even though blindness is a disability, it is acceptable. There is a general lack of understanding or knowledge of ASD. •

Belief that it’s a curse from the gods: In this culture, when there is a disability, it

means that some family members may have done the wrong thing and that led them to be cursed. The actions of family members are believed to be the cause of a curse that would bring a disability to a family. •

Positive: Some part of the culture will accept that maybe the child who is

diagnosed with ASD is there to bring a blessing to the family. A child with ASD can bring good luck to the family. •

Neutral: Some might believe that “it is, what it is.” They can accept it and believe

that no one would pay attention to this. A diagnosis of ASD can be considered normal. •

Prejudice: This is the attitude that community members can have toward a family

that is diagnosed with ASD. Most of the participants in the study felt that others in the community were prejudiced against them because their children were diagnosed with ASD.

•

Punishment: The mothers could believe that having a child with ASD is a

punishment. It was so much work that it felt like they were punished. •

Negative: Some of the participants had a negative attitude and felt that it was bad

to have a child with a disability. They felt that they were carrying all of the burden. It was a negative and stressful experience. This section discusses the second overarching theme derived from interviewing participants’: the cultural beliefs about caring for a child diagnosed with ASD. The participants shared their similar and varying views of their cultural beliefs about ASD. For all five participants, their cultural beliefs suggested that there is a “culture of silence” around a family raising a child diagnosed with ASD. This idea of "culture of silence" will be further discussed in Chapter V. For Roro, who is from Sierra Leone, ASD is not known or discussed in her culture. She described the culture as “silent ” about children who are different from what is classified as “normal.” Roro shared that, in her culture, disability of any kind is “frowned upon” and the parents of these children are often forced to hide their children. Some families treat their childen as not smart and prefer they stay home. They consider formal education as something for “smart people.” In spite of these cultural beliefs, Roro believes that her experience in the United States is different and it would not have been the same if she had had her child in Sierra Leone. She stated, I think, in the United States, people are maybe respectful about it because they may have an idea that it is a disability. But, from where we come from, because people don’t know, they either think your child is slow or your child has the inability to logically reason. So it is different.

For Vicky, there are bad experiences within the culture that promoted ambivalence towards interacting with people or families who have children that have developmental disabilities like ASD. Here is what Vicky has to say about the cultural beliefs and reasons why a child has ASD: It’s because of the mentality of the people and how we were raised up and brought up. Africans, we have a different mindset on this kind of things. They see it as a curse, they see the child as a child from the sea. They assume the parents might have done something wrong to be punished by the gods. Because of these cultural beliefs, children diagnosed with ASD are not given the much needed attention, even in some families. For example, Yomi recounts how her husband doesn’t get as involved with their child diagnosed with ASD as their other two, and, she has felt that hurt. Since the child was born, her husband hasn’t been in close connection like with their other children. She also stated that when people ask her husband how many children they have, he only mentions the two with no ASD. Yomi describes her frustratiing experiences, even with some of the people in her community in the United States. She stated that before her child was born she was active in the community but, after her son’s diagnosis, it kept her from this and felt that, anytime she brought her child out, people looked at them differently and that made her feel uncomfortable. She stated that, although in the United States, children with ASD have access to resources and other form of assistance, the perception in the community regarding this condition seems overwhelming because people ask her questions like “What’s wrong with your son or why does your son behave strangely?" For Yomi,

cultural beliefs have not changed significantly among her people. This is an indication that a child diagnosed with ASD may result in parents living in an isolated environment. Adele stated that cultural beliefs concerning raising a child with ASD are more complex and complicated than words can describe. She describes both positive and empowering beliefs about ASD as well as negative perceptions resulting in fear, contempt, and prejudice. She stated that, being a Yoruba woman from Southwestern Nigeria, she witnessed different ways by which people with disability were treated in her culture and she had always been concerned about it before she moved to the United States. Some disabled people with special skills and talents are given certain privilleges. Also, depending on one’s social economic status, they were given preferential treatments while others were stigmatized. For her, it seems that some people in her culture in the United States have been supportive of her and the family which has been a surprise to her because she didn’t know they would be that receptive. However, there are still other people who still have negative perceptions associated with lack of understanding of the diagnosis and continue to “hold on to the cultural beliefs of disability as a curse from the gods as a result of sin committed against them.” According to Bea, cultural beliefs and perceptions about ASD among Ghanaians may be positive or negative due to the differences in exposure to the diagnosis. Bea believes that traveling outside Ghana gave her the exposure about disability in general. She stated that in the US people with disabilities have a "special parking” and they are “treated with respect.” Bea talked about her experiences with family and the church community: I will say, most likely, people who are deaf, dumb, or blind in the church is what they focus on but if a child is delayed in speech and stuff, they don’t consider it as

anything serious. Back home, they give up on that child because they say don’t waste your money on that child because he does not understand anything. That’s how they view them in my culture because they don’t have a diagnosis like they do here.

Overaraching Theme III: Traditional and Religious Beliefs

All five participants expressed the view that, in the West African tradition, the older generation believes that being a person with autism, or any form of “brain” problem, was a curse from the gods and a punishment to the parents for a sin they might have committed. According to the participants, these supserstitious beliefs result in labelling and stigmatizing a child with ASD. Three out of the five participants confirmed that demeaning names were used to label their child. For example, Bea said when a child does not behave like other children his or her age, they are given names like “gyime, gyime” in the Akan language; “gyime" means one who is slow and unable to think well. These traditional and religious beliefs impacted the participants. During the interview, it became clear that the African traditional and religious beliefs of participants were intertwined. In conversation with Yomi about traditional beliefs, she noted that the traditional beliefs in West Africa could be so intense that if a child has autism, the parents have to hide them because their society has not made services available for such children. When you have a child with autism, nobody takes you serious, you are stigmatized and even your own people don’t want to get close to you for fear of giving them the disease. The government does not do much for the children so parents are left stranded and feeling guilty for having these children. But this is not what I see in the

United States. The system has lots in place to help our children with autism. I am very grateful that I had my child here, I don’t know what I would have done. Two participants believe that despite the misconception of traditional beliefs about autism and other forms of disabilities, many NGOs and government campaigns are gradually helping to reduce the negative effects of these beliefs. For example, Adele stated that she goes to Nigeria every year and things are changing. She noted that there has been a recent influx of NGOs that are bringing awareness to the society and has hope that things will get to a point where autism will not be seen as a curse or a misfortune. One participant noted that some members in her community are still not sure about autism as they have the conviction that autism is caused by the displeasure of the gods. Yomi stated that people thought her child was disobient and distracting and this made her feel uncomfortable taking her child to community gatherings. Adele found that the traditonal beliefs among Nigerians were complex and difficult to explain. She spoke about the the misconception of having a child with autism and the effect on her marital break-up. Adele described her divorce in this way: Being a mother with two children diagnosed with autism and, having a husband who felt it was all your fault, was very difficult. But, I don’t blame him. In a society where the man thinks the woman is responsible for everything that happens to the child, it is difficult to change that concept. He finally had to leave because he didn’t want to be part of this autism thing. All five participants spoke poignantly about the traditional views about family. When the word “family” is mentioned among Africans, the first thought goes to extended family. The nuclear family is still important but the interconnectedness between the

nuclear family and the extended family means that people will put more importance on the extended family. They tend to believe that once you come from a specific extended family the bond cannot be broken. You cannot leave that family behind. All five participants reflected on their experience with members in their community in the United States and noted that most were more sensitive to families with autism. Participants believed that being outside of their country and getting exposure might have contributed to how their community views autism. For these participants, it is not uncommon to get the members in the community to express their support and encouragment, a thing that is not common in their country of origin. During the interviews, all five participants acknowledged that they were influenced by gender roles that they saw enacted in the United States. It would seem that they learned that these gender roles are subjective. As a result, their West African traditional views about marriage, housekeeping, and parenting changed. For example, participants noted that, a few years ago in Africa, women were mostly domestic, but things have shifted in the United States so much that women are no longer confined to housekeeping roles. They acknowledged that, in the United States, they can have a paying job and a choice about their role. Two out of the five participants chose to stay home to care for their child diagnosed with austism while their husbands supported them financially. The other three stated that they wanted to be working mothers which was their own choice. Religious beliefs were a common thread during the interview with participants. These beliefs were identified as a set of ideas and values that the participants held about their relationship with God and their religious community.

All five participants said they were Christians, but there are other religions such as Islam and the African traditional religion practiced by some members of the West African community. In this study, three out of the five said they go to an African Christian church and have a fellowship with others in the church community. They preferred being with people from their own culture (e.g. eating the same food, sharing the same food, speaking the same language). The African Christian church is where they feel comfortable. The other two stated that they did not feel comfortable taking their children to church because they felt their children would be disruptive. For these two participants who did not go to church, they spoke about their beliefs in the supernatural and praying to God everyday at home. All five participants said praying at home, going to church and reading the bible helped them to manage their challenges. The following are some of the ways participants expressed their religious beliefs. Roro stated, We have the African traditions which is the cultural tradition. We have the Christian religion. We also have the Muslim religion. It just depends on where you come from. I talk to a lot of Christians because we come from a Christian background, Christian religion. And, I say this all the time, families are divided based on their religion. But what has helped me is my Christian faith and the members of our church, who are so welcoming and nice to us. One participant described her religious experience of caring for a child diagnosed with ASD as something to teach others. Yomi stated, Sometimes I even want to say it is a gift from God. A gift because others would not be able to handle it. I think that God only puts on you what you can handle. So my

perception is, that maybe through this experience, that I will be stronger to help or aid other parents who have a difficult time. Another participant expressed her religious beliefs in the following statement: “We believe in the Bible, the true Bible. The word of God. We believe Jesus Christ came and died and he is risen. We are total Christians and I can tell you that I pray and communicate with God everyday.” Bea stated that, “I think, because of the way I am, I can talk to everybody at church, but you have to be careful who you share your problem with because some people can be judgmental, but sticking to church has helped me to cope with my challenges.” In another instance, Vicky expressed her religious views: There are days that I have mixed feelings about my daughter but something keeps pushing me to be strong, to love her unconditionally. Because God loves me, I have to demonstrate my faith as a Christian woman in how I treat my child. God knows, I try not to think because it goes nowhere. God has placed people in my life who have just walked with me and my daughters. The comments above illustrate the participants beliefs in their faith and their resiliency in caring for a child diagnosed with ASD.

Overarching Theme IV: Understanding Professional Role and Partnership

The participants expressed their views about the roles professionals played in helping them navigate the system once they learned about their child’s ASD diagnosis. All five participants talked about the professionals’ involvement and how they became aware of what it means to be caring for a child with autism. For these parents, the professionals,

including doctors, nurses, social workers, speech therapists, behavioral therapists, and psychologists, all played vital roles. The roles were placed in these categories: advocacy, support, and resource. They regarded the professionals as having authority and took their suggestions. In terms of advocating for their children, some of the mothers stated that mothers, being put in a predicament where they were forced to become knowledgable of this matter because of their experience, created a passion which led to the ability to not only speak with knowledge, but helped familiarize them with the unfamiliar subject. Vicky, who had worked at a behavioral program for children with developmental problems, said, based on her experience, that it was important to her to make sure she did not take the information given to her by the professionals at “face value,” so she decided to read more about the diagnosis and work together with the team. Adele stated that knowing what to do when a child is diagnosed with ASD depends a great deal on the parents and the support system. She said, It all depends on the level of understanding. If someone told me I would have two children with ASD, I would not have believed them. No one can fight fate though, so I decided to do what I could for my children because I had hope that working and cooperating with the professionals would help me understand my journey with ASD. Bea felt the pediatrician and the school teachers were the final decision makers regarding her child’s diagnosis. Hence, she accepted everything they told her without questioning or finding other alternatives for her child. Bea stated that she was raised in a culture where she was told to respect and not talk back to people in a position of authority. Knowing that, she couldn’t ask questions. Later, she realized American culture allowed for questions and feedback but it was late for her because her son had already

gone through the school system and was placed in a grade level lower than her age until he finished high school. She, however, stated that, although she was involved with her child, she wished she had done more by advocating for him and taking more advantage of the resources for parents of children with ASD.

Summary of Results

Five participants were interviewed in this qualitative study. Four overarching themes emerged from the data. The first theme that emerged concerned their observations of their child. Participants shared their emotional and personal responses when they noticed that their child was not like a “typical’ child. They also shared their perspective about what they knew and did not know about ASD. Here, parents gave their candid opinions about their reactions and the trajectory of caring for their child diagnosed with ASD. The second theme that emerged concerned cultural beliefs. Participants expressed the cultural views of members of their community in the United States, their own personal views based on their experiences from their countries of origin and their own experiences in the United States. Embedded in this section were the parents’ perceptions about the neutral or silent reaction in the culture regarding ASD while other disabilities elicited more sympathy. The third theme that emerged concerned the traditional and religious beliefs of the participants. Participants in this section recounted the positive and negative experiences of the traditional views and what impact their religious views has had on them and how they used those views to manage parenting a child diagnosed with ASD.

The final part of this section focused on the experiences the mothers had with the professionals after receiving their child’s diagnosis. The mothers spoke about the respect they gave to the professionals and seeing the professionals as authority figures whose advice meant a lot to them. All five participants stated that the involvement of the professionals was helpful and provided the opportunity for them to lean on them and gain support and understanding in advocating for their children.

Chapter V

Findings and Implications

Introduction to Findings

This study aimed to learn about the lived experiences of West African immigrant mothers caring for their children diagnosed with Autism Spectrum Disorder (ASD). Five biological mothers were interviewed. Each of the mothers were open and transparent about their personal experiences regarding their struggles, hope, resiliency, and the realities of caring for a child with ASD. By meeting these participants, I was privileged to have the opportunity to enter their world of parenting of their much-loved children diagnosed with ASD. This chapter provides a description of the study’s findings and the review of the four overarching themes that emerged. Based on the themes and the mothers’ relationship with their child supported the theoretical framework of selfpsychology. It is important to note that all children in this study have been diagnosed with ASD. Unfortunately, there are few studies that have focused on the experiences of West African immigrant mothers caring for a child diagnosed with ASD and how this diagnosis is understood (Welterin & LaRue, 2007). Reflections of the study will be presented. Also, a discussion of validity and limitation will be discussed in the final stage of this chapter, implications for social work practice, and suggestions for future research.

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Within the phenomenon of parents raising a child with ASD, four overarching themes emerged: •

Personal and emotional responses.

•

Cultural beliefs.

•

Traditional and religious views.

•

Understanding professional roles and advocacy.

Finding 1: Personal and Emotional Responses

Findings in the study clearly reveal the similarities and differences with a few qualitative phenomenological studies conducted on this topic. Similar themes include personal and emotional responses and concerns raised by their child’s development likely to be present among any group caring for a child with ASD (Richards, Mossey, & Robins, 2017). This example was witnessed in the theme one, dealing with personal and emotional responses. All five mothers shared the emotional responses of shame, disbelief, anger, confusion, and anxiety. Each mother gave an account of their experiences in this area of not initially wanting to accept what they had learned about their child’s ASD diagnosis. Vicky stated, “It’s a whole package, I feel like why me, why did I have to have this child?” This associated emotion was the one theme that stood out during the research. Generally, mothers who are responsible for rearing children are naturally concerned with their child’s milestones in growth and development. As expressed in this study, each

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mother gave their reactions when it came to their concerns with their ASD diagnosed child’s development. Vicky said, So, I did notice a few character traits that confused me but I just thought that she was two years old. So, I went to the internet to read about children in general and when I took her to the doctor, it was confirmed that she was autistic. This statement from Vicky serves as another example that, regardless of culture, mothers, in general, notice the normal development of their child. For some of these mothers, they were affected in a more intense way when they went out with their children. They expressed their feelings about how people look at them: ashamed and full of unease although people in their community try to be nice to them. Yomi stated, Because of him I don’t really do much, I don’t go out into the community the way I used to. It's hard because I don't really get involved in my community because of the way children with autism are identified. So, it's hard to get through or participate in the community. Even though my family is aware of her, other people don't understand or know what it is. They see it as a different thing. For all of the women to experience similar emotions without fail, it shows that these feelings and emotions are not only a natural, universal occurrence but are innate reactions found in most mothers. These emotions are likened to tools that helped those who experienced grief to learn to live without their loved ones as the personal emotions act as tools to help the mothers cope and live with uniqueness expressed through their children who have ASD (Cowdery, Knudson-Martin, Mahoney, 2009). When it came to the community involvement, Vicky and Yomi seemed to have the most challenging experience with their levels of community involvement. Yomi

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expressed her reluctancy to participate with her son in community related activities due to him not being comfortable around and not being able to engage with other people. Yomi is also not available to participate in her daughter’s activities because of caring for her son. Vicky, on the other hand, felt isolated even though the community seemed supportive. These mothers’ responses, consistent with their expressed feelings of shame, seem closely related to the lack of community involvement. Yomi stated when talking about shame, “I feel like sometimes people look at us differently and, I feel like we may not fit in like them, it is shameful, it is embarrassing.” Her feeling of shame seemed to carry over into her lack of community involvement. ASD also has both a positive and negative impact on the marriages of these mothers. For mothers like Yomi and Adele, who expressed the lack of concern or the burden of feeling, it seemed like they were carrying the weight of their ASD child for lack of their spouse involvement. Yet, a mother like Bea, who has the supportive husband, and Roro, whose husband eventually adapted after counseling, their experiences provided insight from every angle on how their child’s diagnosis impacted their spouses and influenced their spouse’s response.

Delayed Life Plans

All the participants stated that they had lots of hopes and dreams about coming to America to make better lives for them and their families. For example, going to school and getting a degree, getting a job, buying a house and a car, and sending money to relatives from time to time. Although these mothers have been able to use the resources available to them to go to school and work, Vicky and Yomi decided to put their jobs on

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hold and take care of their children. They accepted that they had a different dream for raising their children and had to change their plans. For the other three mothers, having a child with ASD, they adjusted their plans in a way that they could work part time or full time and stay with their children as well.

Finding 2: Cultural Beliefs

The World Health Organization (2017) estimates that one in 160 children has ASD globally. These children and their families face the risk of isolation, social stigma, and discrimination (World Health Organization 2014). Research findings among multicultural groups in the United States suggest that investigations of cultural factors in ASD research should focus on cultural views and beliefs about the causes of their child’s disability (Engstrand, Klang, & Roll-Petterson, 2018). The concept “culture” can mean different things to different people. Culture may mean knowledge, beliefs, art, morals, attitude, fashion, behavior, or a way of doing things. In other words, culture is a way of life, it evolves and it is an identifiable pattern of behavior in an environment in response to diverse phenomena that promotes meaning to people as they interact in their environment (Eskay, Onu,Igbo, Obiyo, & Ugwuanyi, 2012). The literature on West African culture and disability is abundant yet most emphasize negative perceptions of families whose children look different. If these children are identified as exceptional and being dull in learning, the elders in the community would be called upon to turn pronounce them “nonconformist” or “default.” The use of these terms both mean the child will not be able to contribute to the society’s viability (Eskay, 2009).

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This cultural belief is akin to the literature findings on the various names given to a child with disability such as ASD. Terms like “ogbanje” in the Igbo language, meaning misfortune, and “gyime grime,” meaning one who is intellectually dull in Akan language. The causes of such negative perception, according to Ozoji (1990), Marten (1990), and Eskay (2009), were related to a curse from the gods due to gross disobedience of failure to appease for something done, violation of societal norms by the ancestors due to stealing, breaking laws, family sins, and many others. The participants in this study described the roles that culture plays in their lives generally. All of the women reported that this type of diagnosis hides behind a “culture of silence.” It appeared that, in most of the West African cultures, ASD is something that is rarely discussed mainly due to the lack of knowledge and understanding surrounding it and, also, due to the associated stigma. It is common for individuals to experience stigma in this culture when a child is diagnosed with ASD (Bakare & Munir, 2011). For example, women like Roro shared that in her Sierra Leonean culture, disability of any kind is “frowned upon.” For this mother, ASD is unacceptable, the child and parent are not given the welcome that other families without ASD are given. Family members may decide to shun this family because it is believed that getting closer to them is a way of accepting the disability. Nwogu (1988) pointed out that negative attitudes towards disability is a deeply ingrained belief. Roro stated that having a child with ASD is a lonely path in her culture; however, there have been more education and enlightenment and people are becoming accepting of it. Vicky responded, “It’s because of the mentality of the people and how we were raised up and brought up. Africans, we have a different mindset on these kinds of things.”

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Bea responded: Okay, they say if a child is like that they give up on the child. They don't even let the child go to school because they say don't the waste money because the child isn't speaking, he doesn't understand. So, it's best to just leave the child alone. Yeah. That's how they view children like autism children because they don't have the diagnosis like here, they diagnose them like they've got autism and stuff, but they don't. But me, growing up in Ghana, I never heard of autism till I got to this country. That's the truth, and nothing but the truth. If I didn't come to this country, I wouldn't know anything about autism. In looking at the culture and its silence on ASD, Yomi explained, “I am not as aware, you know, I'm not saying that this is an American thing, but it just seems like, it isn't something that is talked about a lot you know.” It is worth noting that all the participants in this study initially struggled to accept the diagnosis. According to these mothers who identified primarily as Africans, it was easy to accept physical disability like blindness and deafness, but not ASD. For these mothers, although their children are born Americans, they identified their children as Africans who should not have ASD. In order to have a better perspective of the participants experience, the following five statements were made: Vicky stated, “I don’t think my child should have ASD, so I don’t know where it is coming from.” For Yomi, even though she knew what ASD was, getting to know that her child had autism was very difficult for her to accept, “I feel like it’s a curse from the gods, and I feel like I’m not one of the lucky ones.”

106 Adele stated, “My mind was all over the place and I asked myself, how is that this my child has this diagnosis? I was beginning to feel the way American parents when their children have autism.” Bea said, “Is this what it is? I am not sure if they told me the correct diagnosis. I am from Africa and we don’t call these things autism, it’s something else I guess.”

Finding 3: Traditional and Religious Beliefs

All five participants identified primarily as Africans who were not in acceptance of their child’s diagnosis because they believed that they had done nothing wrong to have a child with autism. Bakare & Munir (2011) conducted a survey in Nigeria about the causes of ASD. Many regarded ASD to have supernatural causes precipitated by angered ancestral spirits, sinful wrongdoing, predominantly by the mother or the action of the devil. They reported that it is a common pathway in Africa for a child with a neurodevelopmental disorder to be taken first to a traditional healer before a parent seeks mainstream medical assistance. Tradition and religious beliefs in this study were interrelated. Participants were of the view that disability of any kind is considered a curse or punishment from the gods in the West African traditional and religious beliefs. It became clear that religion and tradition had an impact on the participants. The religious and traditional beliefs centered around ASD and other disabilities and affected how the parents dealt with the diagnosis knowing that there is a stigma attached and that they were being judged and possibly looked down upon. All five participants expressed the view that in the West African tradition, for the older generation, seeing a person with autism, or any form of “brain” problem, was a

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curse from the gods and a punishment to the parents for a sin they might have committed. The impact of having a child with autism is even greater because of the level of importance of religion and tradition. Vicky stated, When it comes to my family, it's a very tough thing for them to believe because things like that are not . . . They see it as a curse and they see it as a child with . . . Anyway, I won't say what they see it as, but at the beginning they thought she was going to talk. The participants expressed their faith as a strong driving force to care for their child. Two of the participants in the study reported that they stayed at home and avoided going to worship at church due to the associated judgment, yet they prayed and connected with God. The other three participants were able to manage and found comfort in being able to attend their worship service in person. The commonality between all of the participants in this study is that the overall experience drew them closer to God and it provided a means to a better relationship. Here is what Bea said about her faith, “As I said, most of time I prayed. I believe in the Lord, okay? I'm being faithful that the Lord will see us through. That one thing I depend on is God and wisdom in all my days.” Adele explained, God knows. I try not to think because it leads nowhere. If someone told me that my older child would be able to read, I would not believed that person. But God has placed people in my life, who have just walked with my daughters and I, and I advocated for them. Yomi stated,

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Sometimes, I even want to check myself and say that it is a gift from God. A gift because others will not be able to handle. I Think that you know, God only puts on you what you can bear. He doesn't put any more on you than what you can't bear. I said, well if this is a gift, I'm, I a mule? Because This is a lot for me to take on, but especially because I'm by myself. So, my perception is that it is a delay and that maybe through this experience that I will be stronger to help to aid other parents who have a difficult time. Just maybe that's what I'm supposed to know. I say these things just so that I can be comfortable because it can be difficult, you know? Because of the above-mentioned issue on religion, participants with a child diagnosed with ASD identified key spiritual expressions reflecting the importance of faith in their lives (Liu et al., 2014). In line with the literature review and the traditional view of autism, stigmatization is prominent, one cannot find a voice within the cultures that do not embrace children with these conditions. Roro explained: So, some mothers have even told their children, you cannot go to school. You must stay home because something is wrong with you because they are not educated. They did not get schooling. So, they do not know what is going on. So, they tell the children, you must stay home. You are not smart like your brother or sister, but you, you know, but we'll figure out what your gift is. You know, we'll figure out what it is that you do and do very well. And then we will work with you on that. But you may not have to go to school because you cannot function well in a classroom.

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Finding 4: Professional Roles and Parents Advocacy

Another emergent theme was the social support and professional involvement (Chamba, Ahmad, Hirst, Lawton, & Beresford, 1999) and advocacy (Kluth, 2009). For example, when it came to available resources for the mothers and the community support they received or had available to them, it was comforting to know that there seemed to be many resources for the parents that were in need of such information. One of the mothers even mentioned her appreciation of having such resources here in America as opposed to if she was in her own country. Here is what Roro had to say: The best thing, when it comes to this country, is that there are so many people out there that are willing to help you, there are organizations, there are communities, there are agencies out there that can help you. And if you search for them, and if you ask, you will be able to get in contact with all of these people who can refer you to community resources. And, you'll have to educate yourself and your family, so they know how to behave and communicate when the child is present amongst them. You can also do your work on Google. You know, you can go to the library, you can figure out ways to educate yourself. But it is nice to know, like I had mentioned before, my son did early intervention. Having a child with special need such as ASD appeared to give these mothers an even greater cause, passion, and voice on behalf of their children. The mothers in this study expressed their sentiments in speaking on behalf of their children. From the time the diagnosis was given, Adele for example stated:

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Once a diagnosis was provided, a social worker began the journey with us. School, home therapy which we could begin before the waiver began, and with the waiver more doors were open. I decided to work alongside with professionals like speech language pathologist, developmental psychologist, applied behavior analyst, teachers, pediatricians, and occupational therapist. These people helped me understand my children’s diagnosis and how to interact with them at home. For some of the participants, being put in a predicament where they were forced to become knowledgeable of a particular subject matter because of one’s direct experience, often times creates passion which leads to the ability to not only speak with knowledge but one becomes an expert on a subject that has not become familiar. The study provided an insight into the participants newfound voice due to their personal connection with ASD. This is very pivotal to the study because during the interviews, almost all the participants stated that speaking about ASD or any form of disability in their culture is handled with silence also known as “culture of silence.” With these women, the study gave them the opportunity to express themselves in a way that they had never done before. Throughout the interviews, there was mention of how it was comforting to talking about their experiences which is a common feature in qualitative study. Hutchinson, Wilson, & Wilson (1994) support this assertion that, “As qualitative researchers, we respect the value of peoples’ stories and the varied meaning they have. We recognize the transformative power that telling a story has and the benefits that accrue” (p. 164). In order to buttress the cathartic experience of the parents in this study, Bea for example, stated:

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I am so grateful that I have been able to share my son’s autism experience with you. I have never thought about it and I didn’t know that I could say a lot if you hadn’t interviewed me today, I’m thankful. I think this kind of conversation should continue for some of us. Roro stated: So, we had people come to the house and they will sit with him and they will observe him they will observe the home, first of all, they will observe, the child. They wanted to see different cues. That is one thing that I learned from them. They would watch and observe to see if he was flapping his hand, which is a problem that we used to have that child will be flapping his hands over and over. And I was educated on those things. You know how he expressed himself to me, and they also educated me on how to react to my son and not get frustrated. So, I'm grateful for all the community resources and the people that were part of our lives to educate us along this journey. Vicky explained how she has been able to learn from professionals and her experience in raising a child diagnosed with ASD: It's given me more insight into how to deal with it and how to even control myself in terms of how to build a good relationship with her because . . . as a parent, sometimes you're down. So, if I'm down, I don't want her to feel that way. So, I always have to pay the attention to her, help her. Yeah, pay attention and calm down and just enjoy the way it is. The partnership of the mothers with professionals all depended on the personality of the mothers. Thus, some of the mothers were of the view that having a form of knowledge about their child’s diagnosis gave them the confidence to work with the

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professionals. For example, the mothers who had some level of education about ASD, prior to their child’s diagnosis, were more likely to play a more active and assertive role in the partnership with the professionals. Also, some of these women educated themselves. They connected to the kind of intellectual material and were able to use that to take a new role in their African community in the United States. Roro explained, You can also do your work on Google. You know, you can go to the library, you can, uh, figure out ways to educate yourself. But it is nice to know, like I had mentioned before, my son did have early intervention. Bea, on the other hand, seemed to take on a more docile role in her partnership with the professionals. In Bea’s case, she accepted what the teachers and the pediatrician shared with her regarding her child’s diagnosis without requesting a second opinion. Additionally, her pediatrician and teachers were the main decision makers in her child’s diagnosis. I asked if Bea had more knowledge and or if she had a more assertive personality if she would have taken a more active role. Bea stated, As I said, I didn't know anything in the system. I didn't know . . . that's the thing, I was new, and I didn't know anything in the system. I didn't ask anybody questions, and nobody volunteered to help me on that note too. Throughout my interaction with the mothers, it was striking that all of them had some level of education and were able to articulate themselves in the English language. These mothers stated that education is paramount among West African immigrants, regardless of their educational backgrounds from their country of origin. When they get to the United States they encouraged and supported each other to take advantage of the educational opportunities as most of the people from Africa believe that education is the

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only way someone may have a decent socio-economic status in this country. Thus, education is encouraged in the community.

Conceptual Model Developed

Phenomenology was the methodology utilized in this study. “Phenomenological research involves studying a small number of subjects through extensive and prolonged engagement to develop patterns and relationships of meaning” (Moustakas, 1994). Phenomenology is a qualitative research method that is transcendental and emphasizes subjectivity and discovery of the essence of experiences of individuals. According to Bloomberg and Volpe (2012), a phenomenological study investigates the meaning of the lived experience of people to identify the core essence of human experience or phenomena as described by research participants. This is rooted in the philosophical perspective of Husserl (1859-1938). Creswell (2007) added that a phenomenological study explains the lived experiences of a concept or phenomenon for individuals, namely, the focus is on the participants’ experiences and/or understanding of a particular phenomenon. Van Manen (1990) discusses phenomenological research as a dynamic interplay among various core research activities. The researcher focuses on lived experience that is an “abiding concern” (p. 31). The researcher reflects on essential themes that constitute the nature of the lived experience and writes a description of the phenomenon, maintaining a strong relationship to the topic of inquiry (Bloomberg & Volpe, 2012). Phenomenology is not only descriptive it is also interpretive in which the researcher interprets the meaning of the lived experience.

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According to Zahavi (2003), phenomenology has a strong philosophical component as conceptualized and described by Husserl who suggested that “adopting a phenomenological attitude involves and requires a reflective move as we turn our gaze from, for example, objects in the world and direct it inward towards our perceptions of those objects” (Smith et al., 2009, p.12). Moustakas (1990) suggests that the concept of epoche involves bracketing one’s own experiences as much as possible to take a fresh perspective that is, the phenomenon under consideration. In addition, bracketing is a method to ensure that the researcher is suspended from any judgment regarding the true nature of reality. Bracketing allows the researcher to “put to one side, the taken-for-granted world in order to concentrate on our perception of that world” (Smith et al., 2009, p.13). Epistemology examines how we know what we know. In other words, epistemology examines the nature of the relationship between the knower and what can be known. In philosophy, epistemology is the study of knowledge in general. For a person to have knowledge about something it means the person must be able to justify the claim, the claim itself must be true and the person must believe in it (Lofgren, 2013). Thus, epistemology involves knowledge and understanding. Gringeri et al. (2013) defines epistemology as “theories of knowledge that justify the knowledge-building process that is actively or consciously adopted by the research” (p. 55). Gringeri et al. (2013) noted that interpretive epistemology involves real world knowledge and subjectivism a type of methodology and a form of reflection which is an “examination of our own knowledge formation process” (p. 63).

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Reflexivity is central to epistemology and it refers to the examination of one’s own beliefs, judgements, and practices during the research process and how these may have influenced the research. Reflexivity involves drawing attention to the researcher as opposed to “glossing over him or her” and pretending that the researcher did not have an impact or influence. It requires openness and acceptance that the researcher is part of the research (Finlay, 1998). Epistemology and reflexivity are essential components of qualitative methodology, hence researcher used this methodology in the study to examine real world phenomena through critical awareness of the participants’ lived experiences. A process that was important in supporting the validity of the study.

Theoretical Frame

Kohut's theory of functions informs the work of this study and provides an insight into the experience that mothers with children with ASD may have. This study takes a look at the perspective of the parents and their selfobject needs as opposed to the child’s selfobject needs representing a departure from a typical approach when discussing this topic. Selfobject needs remain throughout life (Kohut, 1971, Galatzer-Levy & Cohler, 1993). Self-psychology, a theory developed by Heinz Kohut, posits that the primary task of the self is the maintenance of cohesion which is essentially the development of a healthy sense of self. According to self-psychology, the development of a healthy sense of self which relies on the relationship with other people and specifically through the use of selfobject functions. Selfobject is the term used to describe relationships that human beings experience and internalize (Ornstein & Ornstein, 1996).

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Kohut (1979) identifies three primary selfobject functions: mirroring, idealizing, and twinship. The mirroring selfobject includes the feeling of being the “apple of one’s eye.” One is validated for one’s “greatness and perfection” (Mitchell & Black, 1995, p.159) which leads to self-confidence, self-respect, and the formation of the grandiose selfstructure (Palombo, Bendicsen, & Koch,2010). The idealizing selfobject function allows the child to admire an object, thus securing a sense of safety and protection (Palombo, Bendicsen, & Koch, 2010). Finally, the twinship selfobject function allows the feeling of connectedness with others leading to a “. . . feeling of kinship with others . . .” that promotes a “. . . sense of wholesomeness . . .” (Palombo, Bendicsen, & Koch, 2010, p. 265). Kohut made it clear that a selfobject experience is an experience of the self in relation to others, not something a caregiver “provides.” It involves how the self -experiences the other, regardless of the other’s intention. In other words, the locus of experience is within the self. Originally, the idea was to consider how the parent provides selfobject needs to the child even though the focus really is on the child. However, after conducting the research it became clear that the notion of the selfobject is relevant throughout the lifetime of any individual (Galatzer-Levy & Cohler, 1993) and Kohut agrees. Whereas most studies focus on what happens for the child, this study looks at what happens for the parents in terms of selfobject functions.

Mirroring selfobject experience.

The mirroring selfobject needs of the mothers in this study were met through their emotional and relational experiences with their child and the West African

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community. For Yomi, it was a bittersweet experience, a blessing, and frustration but caregiving offered her the ability to feel loved by her child and seeing her child as “perfect” in her own eyes. At first, all five participants approached the issue of ASD with shame, anxiety, confusion, fear, frustration, etc. In response to their child’s ASD, some of the mothers recognized that they had to work through their struggles in a manner that would not make them dislike their child. They needed to discover a way to have enjoyable and easygoing interactions with their child. In addition, participants frequently felt a sense of acceptance, affirmation, and validation from the bond they had with their child. Roro explained, I realize the connection with him was different and I had to do more work by figuring out what he needed. In spite of that, I find that I am more deeply involved with my son than any of my children. He is my joy and delight. The selfobject function of mirroring the pleasant experiences of her child in terms of the child being her joy and delight was profound. Bea also developed a mirroring selfobject experience relating to her child. She felt good admiring her child as she felt the joy of being there for him. Bea stated, My son is a joy. K is a joy in our relationship. He is. He is so lively. He doesn't let anything, things that are going on in this planet, it doesn't shake him. He is the happiest person I know, okay? As we worry about things, not him. He doesn't worry about anything. The mothers in this study strove to make a meaning out of caring and being available to their child. For Adele, being a mother of two children with autism and learning to be present with them in every step was fulfilling and that brought her a sense of contentment

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and self-assurance as a mother. Adele explained, “It is not easy to care for two children on the spectrum, but I have learned to appreciate my ability to do this job with contentment.” Participants noted many ways their relationship with their child had strengthened, challenged, enlivened, validated, and benefitted them. For these mothers, their feelings towards their child showed the selfobject function of mirroring and it increased their selfesteem, making them more resilient than if they had not had a child with a disability.

Idealized selfobject experience.

When asked what comes to mind when thinking about being in America, the mothers in this study explained that they idealized America as a place to achieve their goals and dreams, a place where people come to make life better for themselves than they can in their country of origin. According to Clarke (2003), the immigrant may focus on the American dream as something to improve their well-being and prospect for a better future either in the United States or upon returning home with some tangible wealth. However, Hochschild (1995) noted that not everyone would be able to participate equally. The parents in the study had an idealization of what can happen in the United States. They had an idealized image and view of what life should be so having a child with ASD impacted their expectations. In some cases, they could not participate in what the American culture had to offer them. Also, some of the parents in the study had to postpone their participation in the American dream. Yomi explained, “I was working full time as a nurse, but I had to make the hard decision of deferring my work to a later time

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to commit to taking care of my child.” For the mothers in this study, there is an idealization of what can happen in the United States. What they come to realize is that they can still idealize America because they can access resources for their children in what they could not in Africa. These participants were very vocal about what could have happened in Africa if they had had their children there. They made mention of a lack of access to resources such as programs for a special needs child, professional involvement, school curricula that are tailored to the needs of the child, etc. These resources are rarely available for parents with ASD children in Africa. Vicky speaks of the lack of resources in her country of origin, “We don’t have the resources in our country because it is not really common and a lot of people have not even heard of autism, so it is something I have come to appreciate for being here.” The mothers appreciated the ample resources for families with a disabled child as they were able to utilize what was available to them in the United States, enabling them to get some of their selfobject needs met. The idea of flexibility and adjustability was experienced by these mothers as they came expecting one thing, but got another, and they were able to utilize what was available to them. This aspect of idealized selfobject needs were met differently as they relied and depended on what was provided to help them in their journey of caring for their child with ASD. All five participants idealized the American culture of accepting disabilities, whereas, in West Africa, a child with ASD is stigmatized or stereotyped and given names like “gyime, gyime and “bulu bulu,” one who is slow to think in the Akan and Ga languages of Ghana and “Obanje,” meaning an accursed person in the Igbo language of Nigeria. This kind of stereotype could have had a

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detrimental outcome for the mothers' sense of self were they not in the United States. According to Vicky, Being here, in America, is something I will not take for granted because disabled people are respected and treated anyway. Family is given support, so I was able to have a different perspective and work through my journey with my child. One example of how the mothers idealized America is their belief that American culture accepts people as they are. One participant, Bea, talked about the de-idealization of West African culture in the following: The first time I saw the parking lot for handicapped people, I didn’t believe it, I was happy and sad because I saw one part of a culture that cares about disabled people and another culture that neglects the disabled and the poor. Three of the participants indicated that the same West African community in the United States is more accepting of a child with ASD than it would have been in Africa. So, mothers like Bea, Roro, and Adele were able to integrate into their community and felt welcome. This could be due to the exposure other West African immigrants have to the idea that a disability is not to be frowned upon that is common in the United States. Adele, for instance, felt admired by the contribution she made in her community as an educator and advisor to people who needed any form of help that she could provide. Adele has two children with ASD, her husband divorced her and moved to Nigeria. This was tough for her, but she is capable, and she has a Ph.D., so she was able to support herself. She was able to integrate into mainstream American society, so she was able to bring what she had learned to her West African community, which made her unique and valuable. This enhanced her self-worth. She kept going and with her innate

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ability, she did not fall apart as a result of her children’s disability. Some of these women were turning away from some of the West African ideals about disability and utilizing the American culture; they were cognizant of holding on to both the positive aspects of the West African and American cultures. Roro said, “People compliment me for being a good mom to my children and community and I get excited. I feel like anytime I meet people and interact with them, I feel accepted, affirmed and validated.” In contrast, Yomi was active in her community before her child’s diagnosis, but once her child was diagnosed, she decided to distance herself from the community. She felt that it was overwhelming, frustrating, and burdensome to take her child out and for people to question her when the child did not behave like the rest of the children. This was something she chose to do not because the community did not welcome her. For Yomi, she lost a positive selfobject experience because she did not enjoy the beauty of the culture. Because of the difficulties and the way that people in her culture reacted to her child she felt the need to distance herself so much that she couldn't even allow herself to participate in the part that she enjoyed. What could have made her vital, whole, and alive in her community was not enjoyed due to her child’s ASD. Yomi felt alone, she was working so hard that she couldn't get enough rest, she was constantly watching her child, and there was contention in her marital relationship as her husband could not be relied on because he rejected their child. Yomi is not able to experience the community as a selfobject function because of her shame she is not able to utilize that. She also does not feel strong enough to ask for or receive support in any shape or form from her husband. She feels worn out. She has a fragile self as a result of assuming that the West African community in the United States has the same belief system as in Africa. Yomi stated,

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I don’t know, it’s just that I miss things like funerals and baby naming, there is a lot of stuff that goes on during the weekends, but I am not able to go because I have to constantly watch my child, and my husband is not involved with her that much. I am doing everything alone and that hurts. Yomi could not look to her community for support, validation and connection. In the previous two examples, we see personal responses with one woman applying her skills to bridge the gap between two cultures and the other distancing herself from her culture of origin because she chose to do so. Whatever their personal experiences were, all of the women benefited from the professional advice and support of the specialists offered to them. One thing that helped in their ASD journey was the fact that these African immigrant mothers had an attitude of respect towards professionals and they followed the guidance of these specialists involved. West African culture supports following authority and respect for knowledge. This implicit belief system served them well in their adaptation (Stern, 1977). Thus, the pediatricians, nurses, social workers, and other professionals involved with assisting the mothers through their journey with ASD were given the due respect. These women experienced the professionals as the expert and complied with whatever they were asked or told to do. For example, when the pediatrician said, “Flailing is common and this is what you have to do when there is one because it is part of ASD,” the moms felt adequate and understood. Bea said, “They were the experts, so I followed their advice, I didn’t have to challenge them.” Thus, following the advice of the professionals helped them understand their child.

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Twinship and Culture as Meeting Selfobject Needs

Participants shared common core beliefs related to family, community, and relationship. For these mothers, twinship selfobject needs were met through the extended family system and their participation in the community. For example, all the participants identified the family as consisting of extended family members including aunts, uncles, brothers, sisters, grandparents, cousins, nephews, and nieces. Although Roro thought it was shameful and difficult to have a child with ASD in the beginning, she was able to get counseling with her husband and she felt more at peace and did not lose that community twinship experience. This sense of peace was seen in the support Roro and her husband received from their extended families. Roro stated, “Well for me, my husband, his family, and mine, over here in the United States, have been very supportive to this day. They are understanding of what is going on with my son.” Adele stated, “I am blessed with an extended family of three sisters and four brothers and many more aunties, uncles, nieces, and nephews that pray for my children.” Adele felt a sense of adequacy knowing that she has a family she belongs to, who cares about her and the children, she felt held by her community. For Bea, identifying herself as making an important contribution in her community kept her connected. She cooks for the community and she gets excited being a part of it, it makes her feel she is doing something worthwhile and people admire her, this admiration makes her feel good about herself and makes her feel cohesive. Her ability to cook well and to be admired, sustained her through the terrible times. The community served as a selfobject function. Bea stated:

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I love to mingle with my people, not just my people, but everybody. I told you that I’m a cook. People love to call me to help in my field of cooking. Not just our cultural food as I have come to learn how to cook American food too. Every time a phone rings in my house nobody is calling to check on me. They call me and ask for food. I’m a person who can make you happy with food, this is my contribution and I’m happy I can help. The role of culture as meeting selfobject experience (Kohut, 1981) led participants to feel profoundly understood. Roro shared that some of the selfobject needs were met through the sharing of values regarding relationships which is an important aspect of twinship connection in the West African community. Roro had this to say about her sense of belonging to the community: Although we are from different parts of Africa, it seems we share things in common when we get here. We are each other’s keeper, despite our differences in terms of languages, we have a lot of things in common such as food, clothing, collective responsibility, and belief in the extended family system. Moreover, seeing mothers who have similar experiences in the community made the mothers realize that they were not “in this alone,” they had a strong sense of “we” through shared activities, values, and experiences. Adele explained, I am blessed to belong to a community of people who are compassionate and kind. My church and the association I belong to are predominantly West African people and they are super nice and helpful when I take my girls to church. I think that everybody has a little something that they do for us and I know what to contribute to my community so there is a balance. Other people outside the family, most especially

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my folks from Nigeria, are very nice too. Everybody plays a particular role in making sure that we are comfortable and that makes me feel important. Roro, Adele, and Bea’s involvement with the community made them less anxious about losing their community, their anxiety-filled sociability gave way to less anxious, more enjoyable, and spontaneous interaction with people (Galatzer-Levy & Cohler, 1993). These women dedicated themselves to the continuity of being part of the community and they experienced some mutual and reciprocal benefits knowing that they had a lot to give to the community. They also felt a sense of belongingness, being understood, and valued. Those who felt at some point that they could no longer belong to the community because the gods had punished them felt isolated. They, however, described themselves as not completely absent even though they were not physically able to show up at community gatherings as a result of their roles in their child’s life. For these mothers, regardless of how inactive they were, they knew that they belonged to the West African community and described themselves as primarily West Africans. Vicky stated, “My child won’t behave at church that’s why I can’t go to church, but I still know that I am member of the church, the pastor calls to check on me occasionally and it feels good to be remembered.” There is an identification, but they feel empty because they cannot participate. There is shame which is different from loss. These women were challenged in that they had to let go of a piece of their West African identity. Not just the identification, but the acceptance by their community, which is problematic. They no longer feel fully accepted because their American children are not accepted for who they are. Yomi said,

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“I feel distanced from my people because that is how I see it now so I don’t want to think about it further.”

Reflection

Looking at the way each participant engaged with her community, I wondered whether individual personality as well as personal emotional feelings contributed to their community involvement. According to the answers given by the participants, Vicky as well as Yomi seemed to have the most challenging experience with their levels of community involvement. Yomi expressed her reluctancy to participate with her son in community related activities due to him not being familiar as well as not being available to participate in her daughter’s activities because of caring for her son. Vicky, on the other hand, expressed feeling isolated even though the community seemed supportive. These mothers’ responses were consistent with previously expressed feelings of shame. It is interesting to note that Yomi’s expression of shame seemed closely related to her lack of community involvement. Yomi stated when talking about her shame “I feel like sometimes people look at us differently, and so I feel like we may not fit in or like them, it shameful, it is embarrassing.” Her feeling of shame seems to carry over into her lack of community involvement. It is important to note that all five of the mothers in this study expressed the importance of having a positive attitude in coping with having a child diagnosed with ASD. Studies have shown that having a positive attitude is everything (autismawarenesscentre.com) and, reading how these women’s lives shifted based on the attitude that they chose, was interesting. Some of these mothers stated that having a child

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with ASD was a “blessing in disguise.” Compassion, tenacity, resilience, caring, creativity, accepting of difference between ASD child and siblings and patience were just a few of the positive attributes the women reported from having a positive attitude. It appears that the mothers’ ability to adapt and cope with the challenges were directly related to their positivity. A positive attitude can often time be the main ingredient to change as witnessed with these mothers. When it came to how each individual mother was impacted by ASD, I thought about how, in general, you never know how things will impact your life, even when others around you may experience trials and mishaps it is always easier as an onlooker. These highlights, along with the various associated affects, provided not only insight but empathy. Another thing I reflected on was the issue of trauma as related to caring for a child with autism. According to Stolorow (2011), trauma disrupts the ordinary, average, everyday life stretching along from the past to the future. Experiences of emotional trauma become freeze framed into an eternal present in which one remains forever trapped. Trauma disrupts the shared structure of temporality, the traumatized person lives in another kind of reality, a world only experienced by the traumatized person. Thus, this experiential world seems to be incommensurable with other people leading to a sense of alienation and estrangement from other human beings that typically haunts the traumatized person. The mothers in this study expressed the traumatic experiences associated with raising a child with ASD. For these mothers, taking care of their children is not an eight-hour job but one around the clock, and they considered it more than a job. Once they get up in the morning, they have to constantly monitor their child, who has

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inconsistent sleep patterns and behavioral problems. These mothers cannot take their eyes off them; having their own sleep regimen was a difficult thing. Not only this, but also, coping with their daily activities was hard. For some of the mothers, trauma could manifest as emotional or psychological and inability to self-care. On the issue of culture, tradition, religion, and the stigmatization of having a child with autism, I only imagined the burden and the pain that comes along with the cultural and religious views. Almost all the participants made a reference to their child's disability as a curse in their culture. Women like Vicky shared that, in her culture, ASD is not common and is seen as a curse, they see the child as a child from the sea. They assume the parents might have done something wrong to be punished by the gods. Adele stated that, being a Yoruba woman from Southwestern Nigeria, she witnessed different ways people with disabilities were treated in her culture. She was not happy about it before she moved to the United States. Although we have different women with different cultural related responses, the similarities of related disappointment and disapproval seemed common. All of the mothers expressed that, living in the US, they felt that it was easier to cope and maneuver due to having more knowledge about autism and having more resources available to parents who have children diagnosed with ASD. When you think about how important both religion and culture have to do with one’s mental and spiritual well-being, I would suspect that this impact is even greater because of the level of importance of religion and culture, especially as two participants reported that they stayed at home and avoided going to worship at church and getting involved in their community programs and social gatherings due to the associated judgment.

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West African Immigrant Fathers

The participants in this study described their own experiences in their relationships with the fathers of their children in addition to sharing the parental roles of the fathers. They described their initial experiences that it was difficult for the fathers to understand what was going on with their children to the extent that one of the participants saw the father of her children distance himself ultimately leading to a divorce. Another observation was the changing role of the African father as an immigrant. In a study by Nchinda (2014), he made mention that immigrant fathers from Africa have encountered many family challenges they had not anticipated. For example, the realities of fatherhood in America and the new roles they have to play, the egalitarian lifestyle and the need for some of them to make adjustment to be involved in raising their child. This means the caregiver role which is solely the responsibility of the mother in the traditional African culture, changes its dynamics in the United States. The gendered structure that men and women are accustomed to in Africa such as reserving household work like cooking, cleaning, laundry, and childcare for women, as well as shouldering the tasks of being the sole provider as a man is changing among West African immigrants (Nchinda, 2014). For some of the mothers in this study, they expressed that they worked together with their husbands to promote balance in household division of labor (Haataja, 2009; Lammi-Taskula, 2008; Perala-Littene, 2007).

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Validity and Limitation of the Study

For qualitative research, the criterion for validity suggests whether the findings are accurate from the standpoint of the researcher, the participants, and the researcher (Bloomberg & Volpe, 2012). For this phenomenological study, the researcher applied two types of validity namely methodological validity and interpretive validity. To enhance the methodological and interpretive, interviews were conducted with each parent with much caution and attentiveness to what was being said. The researcher provided a thorough explanation to the data collection and analysis, in the form of an “audit trail,” a process whereby data is collected and analyzed in a way that other researchers would be able to gain access to the data (Bloomberg & Volpe, 2012). The researcher used strategies such as taking notes, clarifying assumptions up front, taking note of the affect of participants, and overall presentation, immersing myself in the data in the form of reading, listening, rereading, in-depth coding to support the commitment, and rigor of the study. Next, researcher conducted member checking by ensuring that all participants had the opportunity to read through their interview transcripts and provide feedback. This process was also conducted to increase the validity of the data and all feedback was incorporated into the findings. In order to reduce the occurrence of subjective bias, assumptions, foregrounding, interests, and perception in the collection and coding of the data, frequent consultation was done with advisor to make sure that the data was not being tainted. This process is also known as bracketing in phenomenological research (Moustakas, 1994). During this process, the researcher was able to share thoughts from the reflective journal.

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In regards to limitation, these findings cannot be generalized. The issue of subjectivity arises from the background and knowledge about people from West Africa and currently being a member of one of the churches and some of their associations. Added to this, it is possible that some of the participants had some reservations and could not come forth with all the information needed. Recognizing these limitations, the researcher acknowledged the research agenda and stated the assumptions up front. The study was limited in terms of cultural diversity among the West African immigrant groups.

Implication for Social Work Practice

Many clinical social workers, in addition to other professionals, who have had encounters with parents raising children with ASD may not be aware of or may not have a full understanding of parents from the West African culture and their experiences. The findings in this study may be used by social work education programs, training, and research in gaining insight into knowing more about this underrepresented group. Additionally, professionals from diverse fields may use the findings as guidelines for developing programs that would benefit immigrants from West Africa. Thus, a core implication of this study is that of (a) bringing awareness to the West African community about the kind of supports needed as they care for their children diagnosed with ASD; (b) promoting a learning opportunity for the larger community as members interact with each other; (c) helping clinicians, educators, interest groups, community workers who currently work with patients from West Africa understand the challenges, resiliency, and

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strengths of West African mothers in their community. The findings serve as a roadmap for discussing the bond of unity among these participants based on the strength perspective. Each category and area of what has been covered in this study was necessary to gain a greater understanding of how ASD impacted the lives of the participants from various backgrounds. This study is an important asset to help gain a well-rounded perspective of how culture, religion, education and knowledge influence decision making and copeability of parents who rear children with ASD. Although the women were from West African countries each of their experiences were unique and added a different frame of reference. This study was useful and provided a great level of insight that is not commonly known. Insights into the characteristics and mechanism of caring for a child with autism will allow service providers to develop intervention to help this population better handle challenges in life (Elmose, 2016). For example, insights from research in this topic may be able to shed some lights on the development of effective intervention programs to improve caregiving challenges in this population. Systematic parenting training, targeting specific challenges, may be offered to individuals with children diagnosed with ASD to improve parenting skills, competence, and, eventually, quality of life. In addition, parents with ASD child should have more opportunities to share their experiences in their communities and other available avenues (via social media, conferences, webinar, seminar, etc.) with various social contexts and be offered feedback on their experiences, since human beings usually acquire knowledge by interacting with their environments and what they are familiar with (Duff & Flattery, 2014).

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Suggestion for Future Research

This study was conducted with a small proportion of the population. Some suggestions for future research include a larger sample of this group. Also, it is important to look at the trends of ASD diagnosis especially among Africans in the diaspora to explore any changing trend regarding parenting a neurotypical child. Further, the impact of education and training of helping parents with support and resources. Parents experiencing these challenges should be well informed about their contributions and efforts in early intervention programs as part of a mandatory curriculum for individuals in helping the professionals. Although programs are in place for families raising children with ASD, many of these programs are not tailored to the needs of the West African people in their language or their culture of origin. Individuals and systems do not stay connected or do not collaborate as much as they could. Other areas of research include looking at the impact of ASD on fathers, siblings, and the extended family systems.

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Appendix A: Resume

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Hannah Anokye 9303 Montgomery Drive Orland Park, IL 60462 (708) 699-5521 hannah.anokye@ymail.com Objective A kind, empathic person with a sense of humor, enjoy working in a collaborative teamoriented system with strong work ethic and integrity is seeking for a position in administration that utilizes all of my various skills and abilities. Summary of Qualification ▪ ▪ ▪ ▪ ▪ ▪ ▪ ▪ ▪ ▪

10+ years of experience in the social work field Excellent interpersonal skills in working with people from diverse background Affective listener and ability to communicate effectively Able to work under stressful situations and meet tight deadlines Committed to task completion Outstanding in collecting research data information Ability to work as a team player and team member Competent in working with clients of all ages Detailed oriented Experienced in working with a plethora of cultures Experience

2012-Present Executive Director Casa Esperanza Project Chicago, IL ▪ ▪ ▪ ▪ ▪ ▪ ▪ ▪ ▪ ▪

Providing leadership for homeless women living in the transitional housing Conducting assessment and therapy to clients who need it through the use of various modalities Creating an atmosphere of trust and community as well as an atmosphere of healthy accountability in the house Meeting with the women on a regular basis for individual goal setting and evaluation ensuring that there is an atmosphere conducive to growth and learning in the house Admitting new women to the house Utilizing treatment modalities of individual, group work, community organization and community outreach Maintaining a file on each woman which includes health records, completed application form, legal documents and information necessary in case of emergency Developing a budget of $250,000 + and overseeing the fiscal operation of Casa Esperanza Overseeing the sufficient and timely management of all grants Planning fund raising activities and writing of grants

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Communicating with potential donors and coordinate reception of in-kind and monetary donations Representing Casa Esperanza to the wider community and collaborating with community agencies to provide needed resources to participants Performs other duties as assigned

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2007-2012 Multidisciplinary Team Social Worker Illinois Department of Human Services and Social Work PRN Chicago, IL ▪

Conducted assessment and identifying barriers to determine appropriate services, referral and linked clients to the appropriate resource system Met with human service case workers to staff cases that are complex to ensure that barriers are understood Collaborated with the mental health, domestic violence, substance abuse colocators and ensured that clients’ needs were met Documented individuals assessed as well as documenting service recommendation from case consultation Conducted home visits and follow up on cases of clients participating in the Temporary Assistance for Needy Families (TANF) Provided crisis intervention services to clients who had substance abuse, domestic violence, housing, sexual abuse and mental health Reviewed case record and providing recommendation to DHS staff Facilitated the TANF child under one program to enable clients get to a level of self sufficiency Performed other duties as assigned

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2006-2007 Elder Abuse Social Worker Aging Care Connections LaGrange, IL ▪ ▪ ▪ ▪

Provided comprehensive and psychosocial assessment, individualized care plan and documentation on ongoing case management to vulnerable adults Completed assessment tools and maintained documentation as required by the Illinois Department on Aging Arranged for respite services for the elderly, home delivered meals, community programs and follow-ups Collaborated with the Office of Public Guardianship and attorneys on cases that required their attention

2004-2006 Social Worker Circle Medical Management Chicago, IL ▪ ▪ ▪

Provided renal social work services to patients in long-term care facilities Assisted in the intake process to ensure that appropriate goals were developed Participated in care plan meetings

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Completed and processed Medicare ESRD benefits on all new patients without Medicare ESRD coverage Documentation of all services provided Completion of social work component of care plan Performed other duties as assigned

2002-2003 Social Work Intern J.H Stroger Hospital of Cook County Chicago, IL ▪ ▪ ▪ ▪ ▪ ▪ ▪ ▪

Conducted psychosocial assessment of 300+ patients Served as a liaison between patients and supervisor Provided information to patients regarding their rights and health needs Prepared case reports, case history and presentations during multidisciplinary team meetings Counseled clients on housing, finances, environmental and living arrangements Corresponded with other departments on discharge planning and follow-ups Assisted clients in the application of social security (SSI and SSD), Medicare and Medicaid benefits Performed other duties assigned

Education Institute for Clinical Social Work 2012-present, Ph.D. Student University of Illinois at Chicago 2003, Master of Social Work University of Ghana 2000, Bachelor of Arts in Social Work Group/Affiliation Member of the National Association of Social Workers, Illinois Chapter Member of the Board of Directors, Casa Esperanza Project Member of the Education Board, Pentecost University

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Appendix B: Recruitment Flyer

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West African Mothers Needed

I’m a West African doctoral student and I will like to know what’s like for a West African parent who immigrated to the U.S, and is caring for a child with Autism. I need your help in understanding this aspect of caregiving. Are you 18 or over or do you know an immigrant parent from any of the 16 West African countries? Do you speak English and have a biological child? You are needed as a participant for this research study. Compensation Participants will be given a one-time $ 20 certificate at the end of the interviews. Participants who start the interview but do not finish will also receive the gift certificate for their participation. Contact For further information about this research, please contact Hannah Anokye (Principal investigator) at 708-699-5521 or email hannah.anokye@ymail.

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Appendix C: Consent Form

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Institute for Clinical Social Work Research Information and Consent for Participation in Social Behavioral Research [Experiences of Parents from West Africa Caring for Children with ASD] I, , acting for myself, agree to take part in the research entitled The Experiences of West African immigrant parents caring for their children with Autism Spectrum Disorders (ASD). This work will be carried out by Hannah Anokye (Principal Researcher) under the supervision of Dr. Jacquelyn Vincson. This work is being conducted under the direction of the Institute for Clinical Social Work; At Robert Morris Center, 401 South State Street; Suite 822, Chicago, IL 60605; (312) 935-4232. Purpose The purpose of this study is to understand the caregiving experiences of immigrant parents from West Africa living in the United States and are caring for their children with Autism spectrum disorders (ASD). More specifically, this study seeks to learn how caregiving experiences have impacted parents and their parenting abilities as they care for a child with ASD. It is anticipated that the result of this study will help other West African parents who are caring for their children with ASD. In addition, the study will help clinicians working with West African families in their caregiving practices with their children with ASD. Procedures used in the study and duration You are one of five parents from any of the 16 West African countries who meet the criteria of parenting a child with ASD. I will conduct two interviews with you and the other parents. The first interview will be face-to-face; however, I will be flexible about what is most comfortable for you if it is by person or phone. The first interview last 90 minutes and the second interview is anticipated to last for 60 minutes. The interview will consist of questions about caring for a child with ASD. We will talk about your supports and strengths in caring for your child. Also discussed will be how caring for your child impacts your family. You will be able to talk about any resources or services available to you and supports you need. The interviews will be recorded with your consent. They will be transcribed and you and your family will not be identified in any way. The interviews and transcripts are confidential. Only myself and my research committee at ICSW will have access to your information. Describe any monetary costs to the participants The cost involved with travel for participants will be minimal. Researcher plans to meet with participants at a place convenient or their homes for interviews. Fuel cost, personal and public transportation will not be paid by researcher.

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Benefits to Your Participation There are no specific benefits to you by your participation in this research. It is hoped that your participation will help other West African parents caring for children with ASD. It will also help providers who work with West African parents. Possible Risks and/or Side Effects Although it is not anticipated that there may be potential risk in the study, there is the need to take precaution should there be potential risk, for example discussing the experiences of the parents may bring up some negative emotional responses. If you are feeling distressed and need to stop the interview or talk to someone, you are free to do so. Researcher will give you a list of three or four counselors in the Greater Chicago area. Also, a list of people or places that are culturally relevant will be made available to you. Additionally, a list of local and national resources about ASD, contact for community leaders and Autism places will be given to you. Privacy and Confidentiality The information from of this study will be kept private and the confidentiality of the data will be protected. In any sort of report made public, your identity will not be disclosed or made public. The interview data will be kept in a secured place such as a locked file; My committee and I will be the only ones to have access to the records. The tape record of the interview will be destroyed after it has been transcribed and analyzed. Subject Assurances By signing this consent form, I agree to take part in this study. I have not given up any of my rights or released this institution from responsibility for protection. I may cancel my consent and refuse to continue in this study at any time without penalty or loss of benefits. My relationship with the staff of the ICSW will not be affected in any way, now or in the future, if I refuse to take part, or if I begin the study and then withdraw. If I have any questions about the research methods, I can contact Hannah Anokye at (708) 699-5521 or Dr. Jacquelyn Vincson at (708) 351-3142. If I have any questions about my rights –– as a research subject, I may contact Dr. John Ridings, Chair of Institutional Review Board; Institute for Clinical Social Work; At Robert Morris Center, 401 South State Street; Suite 822, Chicago, IL 60605; email: irbchair@icsw.edu. You will be given a copy of this form to keep for your records. Signatures

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I have read this consent form and I agree to take part in this study as it is explained in this consent form. Signature of Participant______________________ Date__________________I certify that I have explained the research to (Name of subject) and believe that they understand and that they have agreed to participate freely. I agree to answer any additional questions when they arise during the research or afterward. Signature of Researcher__________________

Date____________________

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Appendix D: Interview Questions

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INTERVIEW QUESTIONS I am a social work student doing my dissertation and conducting interview on the experiences of West African immigrant parents caring for their children with Autism Spectrum Disorder (ASD). As we go through the interview, if you have any questions about why I’m asking something, please feel free to ask or if there is anything you don’t want to answer just say so. The purpose of the interview is to get the insights into your experiences. Any questions before we begin? Demographic Data- move this to the middle 1. My age is__________20-30____________31-40__________41-50________50+ 2. My race/ethnicity is: a. 3. Occupation_________ Employed full time ____________Part Time________ Unemployed_________ 4. Education ______High school ______College ______Graduate_______Post graduate 5. Are you ________Married _________Single _______Divorced ____Cohabitating? 6. How long have you lived in the US? ______________ 7. State where you reside_____________________ 8. How many children are diagnosed with ASD in the family and are living in the family home at least 50% of the time________________ Demographic Information for the Child This section consists of Six questions pertaining to your child with autism spectrum disorder. If you are raising more than one child with ASD please respond to each question based on your oldest child with ASD followed by the youngest. Child/ Children Gender of Child/ Children Male Female Age of child Child’s age when concerns for child was first suspected. Please indicate When did your child receive a diagnosis for ASD?

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What type of professional diagnosed your child? Example Pediatrician, neurologist, Social worker, Psychologist, Other Please indicate the type of educational program that your child participates in. Early intervention, Secondary Education, None.

Parents’ Questionnaire These next questions are aimed directly at getting your perspectives on raising a child with ASD. Tell me about (child). What is she/he like? Favorite activities, etc. 1. 2. 3. 4. 5. 6. 7. 8. 9.

Tell me about your child . . . Is your child in school? What activities interest your child? What does he like or dislike? Do you play with your child? What can you say about your child’s ability to do things on his or her own? When did you notice changes in your child? Describe those changes and your thoughts about them. When did you decide to take your child to the doctor? Tell me how you discovered your child had autism spectrum disorder/how did you feel? What was your reaction to the news? 10. Tell me your ideas about raising a child with ASD versus a child without disability. 11. Have you had any challenges since you found out that your child has ASD? 12. What’s your perception about your child’s development? 13. Since you received the diagnosis of having a child with ASD has it affected the way you relate to your child? In what ways? 14. What have you found to be your strengths in raising your child? 15. How does having a child with ASD affect your other children? 16. Marriage or relationship with partner? 17. Who does primary parenting - roles? 18. What concerns do you have about being a caregiver for a child with autism spectrum disorder? 19. What are your expectations as a parent of a child with ASD? 20. What do you think should be the treatment for your child to receive? 21. What is the future for your child and family? Cultural questions These next questions are aimed at getting your cultural perspective: 1.What is your country and culture of origin? 2.How do you identify yourself in your community? 3. What role do you play as a member of your community?

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4. What are the traditional and cultural beliefs in your community? 5. Tell me about the religious and spiritual beliefs in your community. 6. Are people in your community aware of or do they know about ASD? 7. What are the cultural beliefs about a child diagnosed with ASD?

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Hannah Anokye dissertation

Articles inside

C. Consent Form

A.Resume