Positive Experience of Families caring for Children Diagnosed with Autism Spectrum Disorder in Sri Lanka.

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ABSTRACT

Autism Spectrum Disorder (ASD) is a complex neurodevelopment disorder that interferes with a child's personal, social, academic or professional functioning. The presence of a child with ASD in the family is reported to affect the caregiver and the entire family. This study aims to identify the factors contributing to build positive experiences among parents who care for children with ASD in Sri Lanka. ?

The study was conducted using a qualitative research plan and used in-depth semi-structured interviews to gather data. Ten mothers of children aged 5 to 15 years with an ASD diagnosis were interviewed. All 10 of families had volunteered participated with this research. Thematic analysis was used to identify repetitive ideas (themes) in the parents' story. Finally, the study found that mothers of children with ASD faced many challenges but used different strategies for the care process. The findings show that providing a better understanding of self-care by accepting current situation, the community and cooperative services can further improve the quality of life of caregivers who lived with child in ASD.

CHAPTER ONE

??????????????????????????????????????????????? Introduction

1.1?????? Background

??????????? ?Autism Spectrum Disorder (ASD) is a pervasive neurodevelopment disorder characterized by persistent deficits in social communication and social interaction across multiple contexts, including deficits in social reciprocity, nonverbal communicative behaviors used for social interaction, and skills in developing, maintaining, and understanding relationships (American Psychological Association, 2013). According to Centre for Disease Control and prevention (CDC) studies, an average of one in every 150 children may have an autism spectrum disorder. The "spectrum" indicates that the pattern and severity of symptoms based on the severity of the autistic condition, and the level of development of the child and the chronological age vary. Diagnosis of ASD in Western high-income countries is most often made in the first two years of life with those symptoms most commonly evaluated in the second year of life (12-24 months of age) or in severe cases earlier than 12 months (APA, 2013). The learning, thinking, and problem-solving skills of people with ASD range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives, others are less in need.

???????????????????? One of the most frequently explored topics in family research aimed at capturing the experiences of families with children with disabilities is parental stress (Davis & Carter 2008; Pisula 2003). Developmental disorders can interfere with a child's personal, social, academic, and ultimately professional functioning, and having a child with ASD also affects the dynamics and functioning of the entire family system.

???????????????????? In many cases, these children demand greater commitment from their parents and other family members who are responsible for providing stimulation, attention, care, understanding and protection (Oliveria and Limongi, 2011). The parent's commitment to the child, the care of the child, and the child's development will depend on the family's ability to distinguish between the imagined child and the real child, who will receive a life-long disability diagnosis. Furthermore, while ensuring g the child's attendance as part of the community, it can be a difficult task for the child's primary caregiver to provide the special care, attention and support that is often needed to ensure the well-being of other family members.

??????????????????? Raising a child with ASD is a stressful experience for parents. Most of the available research show that the level of stress is high in parents who care for children diagnosed with ASD (McConnel et al, 2012).? It has become commonplace for researchers to introduce their articles, especially those with children with autism spectrum disorder (ASD), noting that other families experience more stress ( Estes et al. 2009; Griffith et al. 2010; Hamlin-Wright et al. 2007; Kasari and Sigman 1997; Wolf et al. 1989).

??????????????????? For families with a child with ASD, such a burden can be overwhelming, and many family relationships can be significantly strained and sometimes dissolved. Although raising a child with autism spectrum disorder (ASD) is often associated with stress (LeCallier, Leon & Wilts, 2006), many parents report positive aspects of parenting their child. Personal growth (Hastings & Tont, 2002), a rich spiritual life (Gray, 2006) and re-evaluation of life priorities (Myers, Macintosh and Goin-Cochle, 2009) are associated with caring for a child with ASD. Positive gains are defined as the benefits of raising a child, including growing as an individual, learning new skills, and becoming more determined to face challenges.

????????????????????? It is important to investigate variables associated with such accomplishments. Caring for a child with ASD can be experienced differently by parents and families, emphasizing different factors and processes. Every mother’s experience is unique and how the meaning of a mother’s experience is shaped depends on the personal, social, family and cultural factors that are most relevant to them (Elias et al., 2017).

????????????????????? In Sri Lanka there are very limited sources about ASD for parents and limited occupational mental health and education support to raise a child with ASD. Caring for a child with ASD under such circumstances can be challenging and stressful, but there are many who thrive on it and are still thriving. This study aims to identify the factors contributing to build positive experiences among parents who care for children with ASD in Sri Lanka. The study also focuses on the factors that contribute to the resilience of these parents in the experience of social support, coping style, family relationships, and financial status.

1.2?????? Statement of the problem

????????????????????? Caring for a child with ASD is a stressful experience and it’s kind of challengeable with mentally and physically for all parents. Many parents want to create a better environment for their children with ASD for the well-being of the family.? Most current research shows that parental stress levels are high when caring for kids with ASD (McConnel, 2012). Past studies have shown that having a disabled child, presents a unique set of challenges, which affects the overall family unit and the health, well-being and lifelong experience of each family member. (Patterson, 2005 & Turnbull, et al, 2006). Most of the parents in the studies have reported various positive and negative experiences throughout their journey, but many of them seem to show resilience amidst the challenges (Turnbull,et al, 2006).

???????????????????????? Many of these researchers are only done to find out the level of stress in families caring for children with ASD, studies have been limited to show parents have a positive life experience and how they can positively handle every challenge.

1.3 Rationale to Research Study

??????????????????????? Research is currently being conducted in many Western countries to find out the level of parental stress associated with raising a child with ASD (McConnell et al., 2012). The effects of stress are more negative for parents of children with ASD than any other disorder (Beaud & Quentel, 2011). Lack of academic understanding of how parents in Sri Lanka deal with resilience and how to build their lives for positive with ASD. It is more important to have understand about the factors that contribute to the resilience of parents with ASD. Positive life experiences of parents are more important for ASD children to develop them. If parents do not have much knowledge about how to deal with ASD kids and how they can positively build their life it will difficult to deal with their own.? A local study will provide valuable insights for families about how they have begun the journey through a similar resilience, to prepare and equip them to take care of their child and themselves more effectively. Moreover, it can provide important knowledge to professionals in the relevant fields to facilitate parents to improve the quality of life and care in the whole family. This will important for the parents who are having negative sight about the life and struggle with the resilience in negatively.

????????????????????? This study would be help for mothers to get the understand about how they will have the opportunity to reflect on the challenges, strengths and knowledge they have developed to help their lives with the child and how they will face all the challenges in make positive meaning of the experiences for ?them in local society.

1.4 Goals of the research study

This study aims to identify the factors contributing to make positive meaning of families’ experiences of caring for a child with ASD and the factors that contribute to the resilience of these parents in the experience of social support, coping style, family relationships, and financial status in Sri Lanka. Main objectives are,

1.???????? Identify the factors contributing to positive meaning making of mothers’ experiences of caring for a child with ASD.

2.???????? Identify the factors that contribute to the resilience of these parents.

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1.5?????? Literature Review

What is Autism Spectrum Disorder?

?????????????????????????????? Autism spectrum disorder is considered to be a severe disability secondary to the intense lifelong effects it has on the diagnosed individual and his or her family (Deutsche, et.al , 2004). ASD is classified as a spectral disorder due to various levels of weakness in the areas where the primary diagnosis is made. Other behavioral, developmental, psychiatric and medical problems can occur concurrently with autism. Often, these related issues present the most difficult challenges in managing a family. Families often have to interact with different systems in order to provide their child with appropriate educational, medical, and behavioral services (Newschafer et al, 2007).

?????????????????????? Autism spectrum disorder is considered a secondary serious disorder. It is a lifelong impact on the person identified and his family (Deutsche, Wilder, Sudweeks, Obiacore and Algocene, 2004). ASD is classified as a spectral disorder due to various levels of impairment in the primary diagnostic areas. Other behavioral, developmental, psychiatric, and medical problems may be associated with autism. Often these contemporary issues face the most difficult challenges in managing a family. Newschafer et al. (2007), Behavioral difficulties may or may not be associated with the underlying symptoms of autism (e.g., aggression, disruption, hyperactivity, self-injury, or sensory changes). Newschafer et al. (2007) Report that there are three active outcome predictors: (a) cognitive status, (b) age of language acquisition and (c) age of diagnosis. Families often have to interact with different systems in order to provide their child with appropriate educational, medical, and behavioral services.

Prevalence

????????????????????????? According to Kim et al. (2011), there is a shortage of data on ASD prevalence in the United States and many countries around the world, as well as other Western countries that have closely monitored the prevalence rate over the years. He suggests that autism may be due to a different view and definition in each culture (Kim et al., 2011). However, despite the consistency of the diagnostic criteria used, large variations in the prevalence rate across countries around the world indicate that this difference can be calculated according to cultural differences in the perception and concept of autism (Kim et al., 2011). Deich et al. (2004) suggest that differences in the distribution rate between different ethnic groups and cultures may be due to the reluctance of members of certain cultural groups to assess children for certain types of disabilities. Moreover, some cultural groups are more favorable for the diagnosis of ASD than for the identification of cognitive impairment (ID). In addition, disability can be interpreted differently by different cultural groups, and awareness of the criteria associated with the diagnosis of ASD varies, with different behaviors and different attitudes toward normal development.

Social Support

????????????????????? Social support is of key importance for families who raise children with a lifelong diagnosis such as ASD (Boyd, 2002). Social support has been cited as a factor contributing to the resistance to negative effects of stress. Social support develops through relationships and interactions between the individual, family, peer group, and larger social systems (Boyd, 2002).?

???????????????????? A study found that social support is related to positive health conditions, including effective handling behaviors, a sense of stability, mental well-being and perceived control among others (Langford et, al, 1997).

????????????????????? According to Fisher, Cocoran, and Fisher (2007), social support is “a number of studies that have found that it is an important protector against family crisis factors and a factor that promotes family recovery for family recovery. Mediator of Family Violence ”(p. 413) research on the use of social support by families of children with ASD focuses on mothers, with less focus on the impact that support has on fathers, siblings, or the family unit. This choice may primarily reflect the mother's traditional role as guardian, especially when the child is disabled, or if social support may suggest that mothers and fathers are affected differently. According to Gray & Holden (1992), mothers with high levels of informal and formal social support reported lower levels of depression, anxiety, and anger. Researchers have found that low levels of social support were the most powerful predictors of depression and anxiety in parents of children with autism. Furthermore, the inability to find or access social assistance affects a mother's overall well-being. Often the support of the informal mother comes from the spouse or someone else significant, and as suggested by Herman and Thompson (1995), husbands provide the most beneficial support to mothers.

Coping Styles

??????????????????? Coping style is another important aspect in the process of caring for children with ASD.? Coping is defined as a person’s cognitive and behavioral efforts to manage stress-related demands resulting from environmental transactions that are perceived to be taxing or exceeding personal resources (Folkman, et al, 1986).

???????????????????? Parents of children with ASD have been found to use a variety of adaptive strategies simultaneously, using community service, support from friends and family, seeking information, and individual management of stress (Gray 1994; Rodrigo et al. 1990). Contextual factors will influence which strategies are beneficial for each family (Leons et al. 2010), indicating the need for a better understanding of the variables that affect the success of different coping mechanisms. While it is difficult to get a definite understanding of the variability of each child and family, Potty and Ingram (2008) identified coping strategies for dealing with positive and negative attitudes using multi-level models with a large sample of parents with children with ASD.

????????????????????? They found five ways to successfully cope with high positive attitudes, including "focused, social support, positive referrals, emotional regulation, and compromise coping" (p. 861), while nothing four coping styles ( Escape, blame, withdrawal, and helplessness ”(p. 861) were associated with a decrease in positive attitudes.

????????????????????? '' Focusing on the problem, blaming, worrying, and withdrawing '' was associated with an increase in negative attitudes. Anxiety about negative factors controlled the extent to which stress affects daily parenting (Potti & Ingram 2008).

???????????????????????? It has been shown that parents of children with ASD improve their ability to cope with adaptation in a way that enables them to gain meaning from their parenting experience (Pachenham et al. 2005). Although the process of interpreting families for the diagnosis of ASD is not well understood, Weiss et al. (2012) found that their child's diagnosis served as a partial mediator between parental mental acceptance problematic child behavior and parental mental health problems. The coping strategies identified above may be related to individual or family therapy.

Family Relationship and financial status

??????????????????? Family relationship and the financial status are other factors that have an impact on parents caring for children with ASD is often associated with increased emotional and financial burden on the entire family system (Jarbrink et al. 2003).

Walsh (1998) argues that family organization is important, especially in challenging times. The organization often provides a stable and comfort level, building a trust base that allows it to connect with external resources and support. Resistant families often have age-appropriate, acceptable, and predictable family laws (Black and Lobo, 2008). Walsh (1998) notes that family relationships change during the life cycle, emphasizing that families need to continuously assess their current level of relationship to ensure that the needs of each family member are met.

?Olson (2000) acknowledges that families prefer a stable and formal pattern, and that they often function well when there is a balance between moderate-sized structure and flexibility. Other important elements of family organization patterns include social and economic resources. In difficult times, families who are resilient to stable financial, educational and therapeutic resources are able to connect to their social and professional networks.

Families who are able to share feelings with each other are empathetic with each other’s unique experiences. Positive interactions and relationships provide strength to endure and demonstrate the ability to think of potential ways to approach a resilient family problem (Walsh, 1998).

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??????????????????????????????????????????????? ?? ?CHAPTER TWO

?????? Methods and procedures

????????????? The present chapter discusses in detail the methods and procedures followed to study the experience of mothers in the Sri Lankan context. I discuss the procedure that I followed to gather the data, and strategies used to maintain data quality, ensure the confidentiality and anonymity of participants, and maintain ethical standards.

2.1 Study Design

??????????? This study used a qualitative approach to explore and understand how families with child diagnosed with ASD come to make positive meaning of their experiences. Qualitative approach is identified as a repetitive process by which the scientific community can gain greater understanding by making a new significant change as a result of approaching the studied phenomenon (Aspers, 2019).

??????????? One-on-one in-depth interviews were conducted to gain a deeper understanding of the experiences of parents. An interview guide prepared prior to the interview was used to guide and expedite only when needed. Interviews were transcribed and analyzed using thematic analyzes.

2.2?????? Participants

?????????? The sample consisted of 10 families caring for a child aged between 5 and 15 years diagnosed with ASD in Sri Lanka. This study focuses on the positive experiences of parents who provide primary care children in Sri Lanka. All participants in the study were the primary (or only) caregivers of their child. The parents were in different age groups, geographical areas, socioeconomic statuses, ethnicity and, education levels. Only Sinhalese and English-speaking parents were interviewed as the researcher is only fluent in those two languages. ??

2.3 Procedures

???????????????? Interviews were conducted with parents who have accessed support from Reach Beyond, Sumaga Special needs School and Chitra Lane resource center. Once ethics approval was received, I conducted a brief presentation on the nature and the purpose of the study to potential participants and requested them to take part. Participation in this study was voluntary. I had given the information sheet which explains the nature and the purpose of the study, participation and withdrawal from study, participant’s responsibilities, potential benefits and risks, and were provided the consent form to sign for participation and audio recording.

?????????????? This study was conducted using qualitative research design and in-depth semi-structured one on one interviews were used for data collection. The interview questionnaires focused on the factors contributing to positive meaning making of their experiences through social support, coping style, family relationships and financial status of families who are caring for children diagnosed with autism spectrum disorder. Interviews were conducted online due to the current COVID-19 situations in Sri Lanka.

????????????? All interviews were conducted by myself, who is the primary research investigator. I asked participants to tell the story of caring for their child who was diagnosed with ASD at birth. Before starting the study, I prepared a semi-structured interview guide under the guidance of the research supervisor. The interview guide consisted of two broad open-ended questions that asked mothers to talk about their up-to-date experiences, how they face the challenges positively and future prospects. A copy of the interview guide is in Appendix B. ??????

2.4. Data Collection

?????????????????? Interviews were conducted from June to July 2021, I contacted all the parents and conducted all the interviews. I contacted by online Zoom sessions, I was first introduced by an undergraduate in Psychology at Cardiff Metropolitan University, UK, and working as a shadow teacher for a teenager with ASD, who was conducting a research project as a prerequisite for the study program to be followed at the University. Also, if moms get in touch over the phone, I let them know how I got their phone number and made sure it was a good time to have a short conversation. Before the interview date, I sent the mothers a detailed description of the study, its objectives, and what was expected of the participants. Before requesting their participation, I emphasized confidentiality, the purpose and permission of the recording, voluntary participation and the possibility of withdrawal from the study at any time without losing the current treatment / service benefits. However, it was more challenging as they had to explain everything one by one as there was no document. Some of mothers were told that it would take time to make a decision about participation and that they would let me know if they would like to attend. However, all the mothers with some fathers involved agreed to participate in the first conversation. Mothers were given the opportunity to choose a time and date for the interview through online session, and then I created the interview session through zoom and I sent them as they agreed with me. I conducted 10 interviews with parents, but in most cases, only the mother participated. Both parents participated in three interviews. Prior written consent and permission were obtained to record the interview prior to the commencement of the interview. Information leaflet and consent form are included in Appendixes C and D. Most of interviews were conducted in English, few interviews were done in Sinhala, because they were more comfortable with Sinhala. In general, each interview was about 70 minutes long. The shortest interview was 50 minutes and the longest was 90 minutes.

2.5 Data Analysis

???????????????? I listened to the recordings before transcribing them after each interview to familiarize myself with the content of the interview. All interviews conducted in both English and Sinhala were transcribed word to word. Analyses were based on English versions. The interviews done in Sinhala were translated to English. The transcription process was time consuming. It took about 5 hours to copy a 70-minute recording and it was copied and the transcribed interviews were approximately 15-20 bilateral pages, with a single space and length. Some parts from interviews that are not directly related to interview questions, speech fillings (ah, Ummm, hmmmm), and other interruptions (talking to someone at home, answering a call) are not included in the transcript.

?????????????? All transcribed interviews were analyzed using thematic analysis. Thematic Analysis is a systematic method of analysis, in which meanings are derived inductively from interviewees’ talk, rather than imposed from some a priori theory. Thematic analysis will allow the researcher to identify shared meaning and ideas across the interviews (Magnusson & Marecek, 2015). Before beginning the analysis, I prepared a series of sub-questions related to my research questions. After going through the notes, I made in the interviews, I prepared four sub-questions for analysis by reading the items and transcripts of the interview guide several times. Next, I created four sub-question files, each of which was taken from the relevant interviews. Once this was done, I sought to repeat the passages quoted under each sub-question, and these were the themes obtained in the analysis. ???????????

??????????????? I used several measures for the quality of collecting data, analysis and presentation throughout the research. During the interviews, I made the guarantee of participant’s privacy and confidentiality, by gave them to decide the time and date that they were be more comfortable.

?????????????? The information was not easy to share and they or their stories could not be evaluated or judged negatively. I assured the participants that they had a freedom to tell their stories as their way, and I made them feel better that they can discussed anything during the conversation if they wanted to feel safe.? It was emphasized that the purpose of the interviews was to obtain a series of stories the positive experiences of parents caring for children with ASD. It was initially reported that the interviews would take approximately 70 minutes, but they were not quick to respond at any time, so they were free to share their stories in detail.

2.6 Ethical considerations

???????????????? This proposed study focused on recalling and reflecting on the personal experiences of participants, ensuring their privacy and confidentiality throughout data collection, interpretation, and presentation. The information provided by the participants and the names of the mothers, fathers and children of the families will be kept strictly confidential. Due to the current COVID-19 situation in Sri Lanka, this study was conducted a simultaneous interview with families throughout the online process. All relevant recording information were only be accessed by the researcher and the supervisor and stored in a password-protected computer folder, and all recordings and transcripts will be destroyed at the end of the research. The nature and purpose of this study was explained orally to participants and preferences was obtained for interview recordings prior to the start of the interview. There were no significant risks to be expected from participating in the study. They have the right to withdraw from the study at any time, even after the interview procedure.

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?????????????????? The advantage of participating in this study for mothers is that they will have the opportunity to reflect on the challenges, strengths and knowledge they have developed to help their lives with the child and how they will face all the challenges in make positive meaning of experiences for them. Although participants in the proposed study may not have a health risk, recalling difficult moments in their lives may be emotionally stressful or embarrassing for them. In such a case they may refrain from answering.

??????????????????? At such times, I allowed my mother to let go of feelings unnecessarily, and I tried to comfort her with a sentimental statement like "I can't imagine how hard it must have been for you" or "you seem to be gone". Through a very challenging period. “Furthermore, I recognize the efforts of mothers that have led to the current success. In addition, I reminded the mothers that if there was any inconvenience, they could avoid answering any questions or stopping the interview

?????? ?????????????????????????????????????????CHAPTER THREE

?Results

????????????????? This chapter focuses on the parent’s challenges that they had faced and how they cope up with them in positive manner. I categorized all the information that given by parents under two main sections as below.

3.1. Overall experience of parents caring for a child diagnosed with ASD

??????????????? The first section discussed about the overall experience that parents described in caring for their child diagnosed with ASD.? Under this section there are few sub-sections. The key experiences are described under various points as bellow,

3.1.1. Parent’s suspicion

??????????????? All 10 mothers reported that by the time they were about one and a half years old, their child had noticed the other children's non-behavioral patterns. All mothers took their child to a doctor as soon as they learned of such difficulties. The rest of the mothers delayed seeking help because the behavior was not taken seriously at first.

From 1 month to 4 years after birth, many parents observe that their child has done something wrong. A small number have seen this in the period from the birth of the child to 1 month, and few have observed a relapse after the age of 4 years.

????????????? For example, the mother of a 5-year-old boy with mild ASD told, "He is our only child." I did not suspect anything. His birth weight is enormous. During his first three months, he was unable to keep his head up. Then, we observed other motor problems. Unfortunately, no one told us that he was injured at birth until he was three years old, and no one discussed diagnosis with us” (INT003).

???????????? Another mother told, “We didn’t notice, because she was so active and talkative till age 4, and we don’t have any idea because my first daughter doesn’t have any complications. My second daughter started to show some motor problems and speech difficulties after 4 years (INT007).

??????????? Another mother told, “After about 11 months, he stopped saying any words, started to ragging things straight line, and some other motor problems with some sensory issues, so we waited and see what would happen in every month. Because we don’t have any experiences before” (INT005).

?3.1.2 Parents responses

???????????????????? This was all about how they talk about their feelings and knowledge about the diagnose. Regarding parents’ responses to child’s diagnosis were provided. The most frequent was a negative emotional response which included feelings of depression, anger, shock, denial, fear, self-blame, guilt, sorrow, grief, confusion, despair, hostility, emotional breakdown.

??????????????? For an example, one mother of a 3-year-old girl with ASD explained “I felt as if the whole world had fallen on me. I didn’t understand how this could be happening to me, and I thought, how will I return home?” (INT001).

Then another response was a negative physiological response. Parents described reactions such as crying, not eating, cold sweat, trembling, fear, physical pain (headache, stomach ache), and breakdown.

?????????????? The mother of a 9-year-old boy with autism said “I cried a lot; a lot of terrible thoughts came into my mind. I was covered with cold sweat, and my heart beat very fast (INT004).

??????????????? There was a positive emotional reaction. In the words of the parents of a child with 14-year girl with ASD, “Okay this is our child, whatever happened we have to be prepared for a diagnosis from now. Then we just wanted to hear from the doctors about proper diagnose and what we could do, what treatment we should provide her with” (INT002).

?????????????????? Another mother mentioned about the that they didn’t have any idea what is this ASD about. “We took him to the Children's Hospital because he had not spoken for a year and a half. They did an audio test and found no problems with it. So, the counselor saw him and wrote ‘Autism’ in the book as a diagnosis. We still do not know what it is. We did not accept the diagnosis as there was no change in his appearance” (INT006).

Another mother told who had 8 years boy with ASD said,

???????????????? “We did not take the diagnosis so seriously because we had no idea what it meant. I decided to follow whatever the doctors recommended and help them talk. When I overheard a doctor talking on TV about autism, I realized that my children needed to do as much as they could to develop their skills and lead a normal life. After a while, after seeing them, I took them to a children's guidance center. I took them there because I felt the support, I received from the hospital was not enough. When they simply say that our children have autism, it is difficult for us to understand what autism is. It's not something we experience; we need a better explanation. When we went to that center and later came here and saw that the other kids were in the same condition, it was easy for us to understand what autism was” (INT005).

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3.1.3. Reactions of the other family members to the diagnosis.

????????????????????? Many parents spoke with their family members, including grandparents, sisters, cousins, or their other children. Some parents only talk to their spouse and some only to a friend. According to the parents' answers about the reactions of others, three categories were found. Many people responded positively, expressing parental aging (e.g., "Don't worry," "Everything is fine"), and expressing much understanding, support, and love. Some of the responses were practical and offered to help parents.

For example: Most of parents talked about the positive response from their family members and about spouses,

?????????????????????? “(Mother-in-law), Don’t worry we are with you and I can look after him, you go for your work, and everything will be fine soon, He will be get better as soon as possible. We’ll find good place for him to get more learn and to be train to do things by himself” (INT002).

?????????????????????? Another mother said, “I would be so grateful by having my husband, he always makes me strong by staying beside me. He is the person who spent every expense for everything. He is such a wonderful man and me and my child so lucky to have him” (INT003).

Some parents reacted negatively. They were shocked, or expressed deep grief or sorrow.

As an example: Only two mothers reported that the mother-in-law was responsible for the child's illness and continued to say hurtful things.

?????????????? My mother-in-law often told me that the cause of my daughter's illness was my misfortune. Every time I took her to a new doctor or to a new place, they [my mother-in-law] always told me that there was no point in going anywhere because the darkness I had brought to my daughter could not be wiped away (INT010)

???????????? Another mother said: “My husband and his parents told me that this happened to my daughter because I was overworked during my pregnancy and I was not careful during my pregnancy. So they said I was responsible for my daughter's illness” (INT0009).

3.1.4 The child’s influence on the parent’s life

???????????? The majority of parents believe that they are the ones who suffer the most from their child's disability, while others think that the other children in the family are the ones who suffer the most. Although many felt that it would affect the nuclear family and the extended family, some parents reported that their lives would not be disabled. Some parents reported that their parents' relationship was strengthened by their child's disability ("Communication between us is better now than ever"). Some parents said that the child's disability caused new problems, conflicts and impatience between the parents and the relationship weakened.

Five out of 10 mothers shared their reports on the difficulties they faced in managing their personal lives. ?One mother said, "I quit my job right away and started spending the whole day with my son. The doctor said it was the only thing that could improve." (INT008)

Another mother said.

?????????? “After my first child, I wanted to pursue an engineering career. After the birth of my second daughter, I was unable to reach the goals I had in mind. I am a well-qualified person and I was motivated to learn further. Also, I was earning well in those days, and it was no longer the same. That way, I feel like I’m stuck in one place the point of my life” (INT002)

3.1.5. Services used by parents

???????????????? During the interviews, parents were asked about the main services they referred to for assistance. Many parents reported that they used psychological services for the child, themselves or siblings. These services may be directed to a psychological examination or for guidance and emotional support. Physicians, including physiotherapy, speech, music or art therapy, urban services, and other services, including complementary medicine, are also referred to as educational physicians. These services may be directed to a psychological examination or for guidance and emotional support. Physiotherapy, speech, music or art therapy, physicians including urban services, and other services including complementary medicine are also known as educational medicine.

?????????????? But most of parents mentioned that they had faced more difficulties of finding a better place to give good therapy for their children.

One mother said: “I had to go to many places until I could find one that provided satisfactory services at a reasonable price. At the time it was very challenging and stressful.” (INT001)

Another mother said: “they left the children in one room and did the same thing every day. I did not feel that my child was learning something new or that it was worth the hour or so” (INT004)

Another mother said: “they said they would take her away only if we could have a shadow teacher with her. So, I got a teacher at home next to him and I went too and worked with her. Because I didn’t get satisfy how she concern about my child and how she teaches basic things” (INT002)?

???????????????? Many mothers said they would prefer an inclusive education to a special education unit. However, they faced many obstacles in getting their children into a mainstream classroom.

As one mother said: “All the reports given by the clinic recommended the education included in my son. But when I took him to school, they refused to take him because of his speech and behavior problems. I had to take a few letters from professionals to get him into a mainstream class” (INT008)

3.2 Parents’ coping strategies to face challenges in positive way

???????????????? The second section discussed about the how parents use cope up strategies to face the challenges in a positive way by them self.? Under this section there are few sub-sections as below,

3.2.1. Accepting the challenge (Diagnose) and living with their child with ASD

?????????????????? Despite the initial trauma, frustration, and confusion caused by the diagnosis, the mothers talked about how accepting the diagnosis and celebrating the child as he / she has helped them on this journey. Most of parents said the accepting is the hardest thing to do and when after accepting the situation that they had it give strength them to face for other problems that they can have. They mentioned by accepting it gives more opportunities to develop them as well as their child with the family.??

???????????????? For an example one parents said, “we are very happy when we compare my son with the other children in as we saw in other centers. Because we have seen some other parents how control their child with some behavior matters. But our child doesn’t have such that difficult problems in his behavior. He can control by himself and he is aware about anything.

??????????????? Most of kids have some sever problem but our son is not because he has good eyesight and no weird behavior. So, we are happy about him now and us too.” (INT003)

The majority of mothers said they were happy with the baby's small progress and achievements.

As one mother said: “If there is something in the house that is not kept properly now, he is going to show me and point and trying to say something. Now he is known about the time that he wants to get up and going to sleep. Now he is not disturbing me when I am at work. He is well behavior with his grandmother when I am not at home” (INT002).

3.2.2. Have a break for themselves (Parents)

??????????????? Most of parents mentioned that they are taking some hours for spend some time for them. They said that make them a day energy to work with their child and helps to focus for other work in the family.

One mother said: “Every morning I getup early and do the works at home early because now I am at home all day, and then I do some exercise for me, after that I used to read some my favorite book with having a coffee, Then I feel relax for myself and it gives me energy to do my child works after he got up” (INT008).?

Another mother said: “once a month my husband’s parents coming to see us and they help me to done these works properly. When they come here, they asked us, you both go and have time for you both and we can look after him. So, it’s a huge relax for us to make things together in future. Sometime when I get some free time, I use to watch my favorite TV show and I use to talk with my parents and friends. Sometime when I got mood, I use to read some books. From doing these things help me to handle everything’s in my family” (INT003).

3.2.3 Learning and develop knowledge about ASD

?????????????????????? All parents mentioned that getting knowledge about ASD is more important to live with their child and help them to make their life as more meaningful way. Mothers explained how an active role in gathering knowledge and seeking information is essential to providing good care for their child. As one mother put it: “We do not expect professionals or anyone else to tell us everything. So, we need to go one step further and take the initial steps to find what we need. Otherwise, autism is difficult to understand. "(INT006)

Another mother said.

We need to be vigilant and discover new things. No matter how many service providers we go to, we have to do what we have to do. I found a way to get him to write letters. So, we have to work really hard. Because every child with autism is different. So, we have to be very close to them, be creative and work diligently. (INT007)

3.2.4. Living with spiritual faith

????????????????? Six mothers from 10, exchanged positive thoughts on spiritual faith and support. The mothers said that engaging in religious activities helped them to cope with stress. They said by having a faith with them help them to accept the present moment in positive way.

For an example: “Before we had a son, we were not engaging with the spiritual things. Those days we were went for temple very rear. But because of him we had a religious inclination and it helped us to nurture him and to cope with our daily challenges” (INT001)

Another mother said: “Occasional temple and religious activities gave me rest and energy. I believe my daughter was fine because I practiced religion with therapy. ”(INT009)

3.2.5. Being part of community of parents with ASD children

??????????????? Five of parents mentioned that they are already have some parent group with ASD children. They said that gives us more strength to deal with our life. Some of mothers said that being part of that group that they able to talk about their issues with other parents.

As an example, one of mother said: “It is also important to meet mothers and share their knowledge. So, when we meet in places like this and work as a team, we can understand what good things we can and should do. Giving such support makes us feel more hopeful and stronger” (INT002)

Another mother said.

“Talking to my mother’s about autism gave me a lot of courage. I felt that my child was good compared to the other kids who were there. I got the courage and I went there and decided to change my son's life. "(INT010)

?????????????????????????????????????? CHAPTER FOUR

????????????????????????????????????? ???????Discussion

4.1 Summary

?????????????????????? The study focused on parents of children with ASD living at home. It examined parental recurrences for diagnosis, their adaptive patterns, and how parents cope with the challenges they face by using a positive view of them. It sought to test the resilience that allows parents to act in this way and to maintain their morale and optimism and to cope effectively with their child. Some parents in this study tended to react emotionally and physically negatively to recognize their child’s disability. These effects contribute to theories of parental reactions in the face of a child with disabilities (e.g. Blatcher, 1984; Marvin and Pianta, 1996; Seligman and Darling, 1989).

????????????????????? Mothers talked about many difficulties throughout the process of caring for their children with ASD. Getting a diagnosis for their child over the course of a lifetime was an unexpected life event and required time and effort to understand and plan. It required them to significantly reshape their priorities and personal life goals, as well as to reach a compromise on the care they could provide for their other children. Parents' reports from their experience revealed that this unexpected event was difficult and over-demand due to a lack of basic understanding and knowledge about ASD as well as deficiencies in health and social services in Sri Lanka.

????????????????????? It was found that the transition of a family with a child with special needs made a significant difference in the social life of that family. Many parents had to make changes in their social life due to frustration and dissatisfaction. Some experienced significant stress as well as feelings of depression, anger, rejection of trauma, self-blame, guilt, or confusion.

????????????????????? However, it is wrong to treat such families as sick because of disabilities child. It is more useful to examine the strong and positive relationships that develop between parents and to challenge and strengthen them. A large sample will certainly give a clear picture of the experiences and feelings of the parents and can lead to significant differences between families.

????????????????????? If mothers could provide a medical explanation for their child's condition, at least some of the interpersonal conflicts would have been avoided. All of the mothers in this study had found a way to better care, but only through trial and error. As mothers' personal aspirations and lifestyles have changed dramatically due to the need to care for a child with autism.

For example, some mothers have had to quit their jobs and stay at home, and some mothers have stated that they regret not being able to complete higher education or pursuing their careers. Only one in ten mothers mentioned any involvement of the child's father. Interestingly, the mothers did not seem to expect such an intervention. No mother complained that her husband was not involved.

???????????????? Many parents mentioned that 'giving them some time' help them more than planning for the future. The mothers reported that taking everything on time and keeping their expectations realistic helped them reduce their emotional burden. Rather than being burned out by the pursuit of unattainable goals, this can be a source of strength for mothers in the most difficult situations.

?????????????????? In this study parents spoke about how they face the challenges positively. Talked about coping strategies that they are using in their life in daily. It was very important of show how the parents handle everything in their life diagnosed with ASD kids in the Sri Lankan society.?

?????????????????? Building up the social support in more efficiency for the parents of community with special needs that help talk about the issues that parents have when they caring with kids with ASD and other disabilities. Social support is about improving human well-being and helping to meet the basic human needs of all people, with a special focus on the needs and empowerment of the most vulnerable (Miley, O'Malley and Dubois, 1998). Therefore, social support or support parent groups help for families to improve communication and problem-solving skills, and develop successful coping mechanisms that help build social relationships and maintain a positive outlook.

??????????????????? According to this study information’s that parents gave the early indications of ASD and the specificity of the genetic or mythical cause significantly delay the suspicion that the mothers' lack of knowledge about their tendency to delay speech is also an early intervention. This can have a significant negative impact on the lives of some children. In addition, mothers and families were subjected to all sorts of false beliefs, accusations, family chaos, and blaming the mother for the lack of information. If these prenatal clinics were done by visiting physicians or midwives (PMHs), there would be an opportunity for early intervention and therefore there would be a better prognosis for the baby.

????????????????? Developing the awareness about the ASD in the society would be more important. There are currently a handful of organizations and businesses consisting of professionals and mothers working to raise awareness about ASD by organizing public awareness campaigns and sharing information through social media.

????????????????????? However, it is important to organize such programs in rural areas of the country in collaboration with the Medical Officer of Health (Grama Niladhari) and PHMs in the relevant areas where mothers and communities have limited access to resources and information. In view of the emotional turmoil caused by all of the above challenges, health professionals should emphasize to mothers the importance of maintaining their well-being and advise them to take care of themselves. Although the same strategy cannot be repeated in Sri Lanka due to the shortage of trained mental health professionals, it may take some time for doctors and therapists working with children to talk to their mothers about their internal resources and to acknowledge and appreciate them. Their personal strengths. Diwan et al. (2012) proposed the development of low-cost models in collaboration with trained community health workers and parents to provide interventions for children with ASD and other developmental disabilities, making interventions more accessible with less specific resources.

?????????????????????? In the midst of many challenges and setbacks, mothers tried to give their children the best, and mothers said the difficulties had a significant positive impact on their lives. Mothers saw themselves transformed into more knowledgeable, talented and independent individuals with courage, patience and determination for perseverance. The majority of mothers spoke proudly about how the experience did not become challenging and stressful over time as the personal characteristics of caring for their child with ASD changed. They also gained the ability and were willing to share their knowledge and get it for mothers with similar experiences.

????????????????????? In this study some parents said giving some time/break for themselves helps for face the future challenges in positively. But in generally most of parents feel that one day is not enough for them. When parents of children with ASD are considered to be more dependent on providing more intense social and emotional support, they are particularly vulnerable to sympathetic fatigue or inflammation. “Self-care is not something do instead of caring for child. All need care, love and attention. Parents needs as well as them own are important. If they do not meet their own needs as a human being, they will soon be unable to care for their child lovingly any more. "(Nado, 2008).

????????????????????????? Restoration is the process of refilling your tank and adjusting the clothes and tears you can take to parents as a person. While it is important to rebuild your marriage or relationship with your partner, it is essential to identify what you can most restore as an individual. Remember, you and your partner may have different ideas about what is most beneficial and beneficial from self-care activities. Examples include mindfulness, getting enough sleep, exercising and eating well, and being quiet alone. But most of parents don’t have any idea about what they have to themselves. Developing the awareness about the self-care among the parents with special needs will be important for the all parents for improve their life in positively.

4.2 Limitations

????????????????????? The findings of this study are based on interpretive analysis of interviews with 10 non-sample mothers of Sri Lankan mothers with ASD. This group was selected among mothers who go to high quality specialized treatment centers and are therefore very different. Specially all of these interviews done through the online session because of the COVID 19 situation in Sri Lanka. Some parents didn’t get much attention by having discussions in online. Furthermore, the aim of the study was not to draw general conclusions about the mothers of all children with ASD, but to bring about the meanings shared by mothers to raise awareness and awareness about ASD and the process of ASD care among professionals in the field of mental health as well as general health.

???????????????????????? The study does not address the experiences of mothers who do not have access types of support services. The experience of mothers in rural areas of the country who do not have the training resources to provide limited access to support services and specialized educational and behavioral training is vastly different. Therefore, further research will be able to expand and explore the experiences of mothers living in remote areas of the country, thereby enhancing services.

?????????????????? The parents in the study group spoke primarily about their own and other children's experiences, but only very pertinently about the child's father. As a result, this study does not contribute to an understanding of fathers' involvement or role in caring for a child with ASD. An interesting area for future research is to explore fathers' experience in caring for a child with ASD and their understanding of its role.

4.3 Conclusion

?????????????????????? The main objective of this research was to identify the factors contributing to make positive meaning of families’ experiences of caring for a child with ASD and the factors that contribute to the resilience of these parents in the experience of social support, coping style, family relationships, and financial status in Sri Lanka. A qualitative approach was used, using semi-structured interviews and thematic analysis, to explore how parents interpreted their own experiences. I explored in this study are the challenges that parents face, the strategies they devise for themselves and how they accept the all challenges in positive ways and how far they face for all challenges in positively with their child in ASD.

??????????????????????????? The findings of this study provide a better understanding of the effectiveness of different types of support that respond to the needs of families caring for people with developmental disabilities. Parents try to maintain their normal lives and sometimes even begin to enlist the support of nuclear family members, grandparents and other relatives. Almost every parent used a combination of psychological services and psychotherapy counseling, support groups, social workers, educational counselors or voluntary organizations or support provided by a special education system. Seeking support can help you understand how to express conscious resilience, that is, by doing something real or practical about the situation. Alone and together, these helps build their resilience. In this study most of mothers was responded than the fathers. Although the parents in the present study have tried the process of caring with considerable courage, determination, and improvement, it can be assumed that many mothers there have similar abilities. Therefore, the study found that early mothers may be better able to manage if they receive adequate care from professionals.

????????????????? Over the years there have been more efficient healthcare and support services, with better understanding and sharing of caring responsibilities for immediate and long-term families, public attention to such situations, and emotional support for mothers on a professional level. However, much remains to be learned to improve the prognosis of children diagnosed with ASD, as well as to facilitate and empower mothers to adapt well to such life-changing circumstances.

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