Subjective experiences of women who have children with autism (original) (raw)
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Journal of Population and Social Studies, 2019
This study adopts a qualitative descriptive phenomenological approach to explore, analyze and document the experiences of mothers raising and living with autistic children. In doing so, the study recruited seven mothers of autistic children in Myanmar using a non-probability, purposive sampling method. Data was obtained through in-depth interviews and focus group discussion, and it was analyzed using Giorgi's method. Six major themes emerged: loss of parental hopes and childhood significances, initial recognition and diagnosis, misunderstanding and assumptions about autism, mixtures of emotions experienced by the mothers, challenges in nurturing autistic children, and the mothers' expectations about the future of their children. Raising and caring for an autistic child was challenging for the mothers as their children required constant care round the clock and for the entire span of their lives. Therefore, a comprehensive training in nursing is vital for these mothers. The findings of the study contribute to the literature on autism and forms as a basis for future research on this topic, especially on how living with an autistic child can have an effect on their siblings and other caregivers of autistic children using different approaches.
JISR management and social sciences & economics
The purpose of this study was to explore the experiences of the mothers raising an autistic child, the struggles they faced, the misconceptions they had, the factors that altered their mental framework in effectively managing their child and their condition. 7 Detailed semi structured interviews of mothers raising a child with autism, were conducted to develop a better understanding of their situation and the factors that affected them. A phenomenological methodology was used to uncover the lived experiences of these mothers. Results revealed the existence of 7 distinct themes that provided insight into the real experience of a mother raising a child with autism. Themes focused on the mothers mental frameworks, which included denial of red flags, mother-researcher, emotional paradox, cognitive processing, indicating the thought patterns and emotional processes the mother used in dealing with her child. Moreover themes such as Family dynamics, Societal micro-aggression, medical resis...
Fathering a Child with Autism Spectrum Disorder: An Interpretative Phenomenological Analysis
Indo-Pacific Journal of Phenomenology, 2013
Raising a child with an autism spectrum disorder (ASD) is a stressful experience and has been associated with poor maternal mental health and increased maternal emotional distress. However, the experiences of fathers of children with ASD are largely unexplored and the coping strategies these men employ to cope with the challenges they face have received little research attention. This research aimed to explore the phenomenological experiences of fathers of preschool children with ASD by gaining a better understanding of the manner in which these individuals attempted to cope with their situation. A multiple, single-case study design was employed and five participants were recruited via two local paediatric practices. Semi-structured interviews were conducted with the participants and data were analysed making use of Interpretative Phenomenological Analysis (IPA). This analysis yielded three superordinate themes, which were labelled as follows: (a) the experience of fathering a child with ASD, (b) challenges of fathering a child with ASD, and (c) coping with fathering a child with ASD. The results suggest that the fathers of children with ASD experience their parental role as stressful. The participants in the current study related the stress they experienced to a number of challenges associated directly with their children's behaviour, as well as to the effects that parenting a child with ASD had on their own wellbeing and functioning. The participants reported making use of a number of coping strategies in order to deal with the challenges they faced. The participants used both problem-focussed and avoidant coping strategies. The results are discussed and recommendations made with regard to future research.
A qualitative exploration of autistic mothers' experiences II: Childbirth and postnatal experiences
Autism, 2021
Background Autism is a lifelong neurodevelopmental condition characterised by differences in social interaction and communication, restricted and repetitive behaviours, and sensory processing differences (American Psychiatric Association (APA), 2013). The presence of sensory and communication differences among autistic people may make aspects of parenthood, such as the physical experiences of childbirth and navigating postnatal healthcare, particularly challenging. However, research into autistic experiences of childbirth and parenthood is scarce. Research exploring the motherhood experiences of women with disabilities more broadly indicates a number of challenges. Mothers with intellectual disability (ID) or mental health conditions, for example, are more likely to encounter social services and to lose custody of their children (Booth & Booth, 2005; Park et al., 2006). For these mothers, fear of losing their child can lead to reluctance to seek help for postnatal changes in mood and other
A comparative study of autistic and non- autistic women's experience of motherhood
Molecular Autism, 2020
Background: Autism is a lifelong neurodevelopmental difference and disability, yet there is limited research examining parenting in autistic mothers. Objective: To explore autistic mothers' experience of the perinatal period and parenthood. This includes pregnancy, childbirth, the postpartum period, self-perception of parenting strengths and weaknesses, communication with professionals in relation to one's child, mental health difficulties and the social experience of motherhood. It also includes disclosing one's diagnosis of autism in parenting contexts.
My name is Dr. Sharon Link-Wyer. I studied the lived experiences of mothers of children with High Functioning Autism (HFA) for my dissertation. While some aspects of the autism parenting phenomenon had been highlighted before I wrote my dissertation, none of the studies fully explained the phenomenon of maternal experiences as a whole. I interviewed several mothers for my study. The data for my dissertation was collected during twenty hours of interviews and led to seven themes concerning the maternal experience of raising a child with HFA. This study used a heuristic phenomenological methodology, which allowed me to more fully understand and appreciate the stories of my participants. Utilizing this methodology helped me to understand my own experience raising a child with autism. I am sharing results from these interviews for the first time in this article. The themes I discovered included (1) experience of stress (extreme trauma) during pregnancy and birth; (2) grief, ambiguity, and frustration after diagnosis; (3) needing and receiving support for their parenting journey; (4) maternal advocacy; (5) major systems shortfalls in services and supports; (6) future expectations; and (7) maternal advice to other moms facing an autism diagnosis. Each of these significant findings was explored as they related to the purpose of better understanding the phenomenon of the maternal experience of raising a child with HFA. The participants in this study provided a rich experiential overview of what it is like to raise a child with HFA. Because their stories contribute to understanding about this topic, they have implications for current theory and professional practice.
Walking in their shoes: exploring the lived experiences of mothers of autistic children
There has been a dramatic increase in Autism Spectrum Disorder (ASD) around the globe. A growing body of research has sought to characterize the different presentations of ASD among boys and girls. However, very limited number of Indian studies have focused on mothers of children with ASD. As mothers are the major caregivers of the autistic children, deeper understanding is needed to understand the life experiences of Indian mothers with ASD children. According to the American Psychiatric Association Diagnostic and Statistical Manual, Fifth Revision (DSM-5), the current diagnostic criteria for ASD include deficits in: (a) social interaction and nonverbal communication; and (b) restricted, repetitive movements, behaviours and interests. The lifelong nature of autism has deep implications on parents of children with the disorder, resulting in a wide range of challenges. This is because parents, especially mothers, are generally the primary caregiver of children with autism. Very limited number of Indian studies address the daily challenges faced by mothers of children diagnosed with Autism Spectrum Disorder. The purpose of this research is to gather in-depth information and understanding of mothers who have autistic children. Their perception and difficulties in raising a child with autism and to critically look at areas where future research might need to focus. To conceptualize the recorded experiences; primarily the feminist standpoint epistemology (that focuses on building knowledge and empowerment through women's lived experience) has been taken into consideration. A pre generated interview questionnaire has been used while conducting the interviews. To analyse the mothers' narratives, thematic content analysis method has been used. The thematic content analysis of the qualitative data identified five core categories: resources, care load distribution, me time and mental health, autism: subjective understanding of mothers, blame and mothering. The results of this study offer valuable insight into the lived experiences of mothers of children with autism and need for further course of action to empower them.
Journal of Psychology Research, 2014
In order to identify factors affecting the quality of life of mothers of children with both autism and intellectual disability, the first author interviewed 16 mothers of affected 11-24 year olds and transcribed audio recordings of the interviews. The first two authors analysed the resulting texts using a hermeneutical phenomenological approach. Mothers described living with their child's challenging behaviours, adapting to the increased demands and resultant isolation as lowering their quality of life. They described how surviving had strong negative impacts on their health and relationships. A majority of mothers described rewards associated with their children.
Life Stories of Parents with Autistic Children
Journal of Education and Training Studies, 2018
The major aim of this study was to determine how children diagnosed with autism shapes their parents’ lives by specifying parents’ life stories. The study group consisted of 10 parents who have children with autism. Parents who have participated in the study were determined through a preliminary interview prior to the study and in-depth interviews were conducted with volunteer parents. In the study, "Life Story Interview" list was implemented to examine the content of life stories that shape parents’ lives. The data obtained from the research were analyzed using data analysis phases of interpretative phenomenology which is one of the qualitative research models. By analyzing the data obtained in the research, 10 major themes emerged. These major themes include; diagnosis, feeling, hopes and plans, concerns and questions, social reactions / stigmatization, parenting roles, coping with, sensitivity to disease, meaning of life and development. Analyses revealed that parents w...
Experiences and perceptions of parents raising children with autism
Background The prevalence of autism spectrum disorder (ASD) in general and autism in particular is on raise globally and the need for evidence-based intervention and care for children with autism has grown, too. However, evidence on autism is scanty in developing countries including Ethiopia. With the aim to help fill the gap and paucity in research into the issue, the main purpose of this study is to explore, better understand, and document the experiences and perceptions of parents of children with autism. Methods Qualitative survey was used to collect data from a convenient sample of parents raising a child with autism. Twenty-one respondents completed the qualitative survey dispatched. Vast majority (about 80%) of the participants were mothers who were caring for their child with autism. Age of the participant parents ranged between 27 and 67 years (Mean Age = 44.00 years; Standard Deviation = 10.02 years). Ages of children with autism cared for ranged between 4 and 43 years (Me...