Note from the Editors: On Family (original) (raw)
Related papers
As the recognition of Autism Spectrum Disorder has increased, professionals and academics have theorized its epidemiology and pathology. As valuable as those perspectives are, rarely is the voice of the autistic person heard as a source of understanding. In this ethnographic article, I share my story as a person on the spectrum. I hope to illuminate not the disability of autism, but the reward of the struggle and the gifts that are part of a different way of being. As I reflect on the transformations that have occurred in my life, it becomes clear that my most important role is that of a mother to a son who would himself be diagnosed as autistic in a different context. This narrative offers thoughts about the complex challenges of living with autismFnot only from a professional and academic standpoint but also from a deeply human one as well. [autism spectrum disorder, belonging, motherhood, experience]
Commentary: On Being Autistic, and Social. Ethos.
Ethos, 2010
Abstract In psychology and allied disciplines, autism has been erroneously conceived as a disease that precludes meaningful social behavior. Anthropologists are beginning to address this problem by rejecting the narrow confines of what constitutes human social functioning, and by showing the complex ways in which autistic children and adults participate in and contribute to their societies. At the same time, anthropologists have begun to contextualize public debates about autism prevalence and etiology in historical and cultural processes. This commentary identifies two major disjunctions in contemporary public debates about autism: the first between a depersonalized form of knowledge constructed by science and a narcissistic claim for knowledge that privileges anecdotal, personal experience; the second between a “mainstream” discourse on science and a new discourse on science that explains autism in terms of environmental insults. These new environmental perspectives, especially those that concern vaccine damage, can be situated in late modernity. They mediate between a nostalgic memory of ontological certainty, trust, and authenticity and a postmodern world characterized by a loss of faith in scientific institutions. [autism, sociality, vaccines, advocacy]
The Emergent Landscape of Autistic Communities and Autistic Studies
Culture, Medicine, and Psychiatry, 2015
ABSTRACT Temporality and the Life CourseI am the younger sister of Hope Block, an autistic woman well into her fifth decade. I had hoped that the two of us would collaborate in a submission to this special issue, but it was not meant to be. We lost our mother just over 2 years ago, in February 2013, and our father passed in May 2014. We are still reeling as a family from these losses, and for Hope it is particularly significant as she no longer has family living near her—I am the closest, at 4 hours away. As depicted in Block (2010), Block et al. (2012b), and Kasnitz and Block (2012), our mom was central to Hope’s communication access by supporting her typing, so her ability to collaborate with me in writing projects has been disrupted. Of course, emotionally, it is harder for us to write about the role of autism and neurodiversity discourses on our family’s life course as we careen down that course with bruising impact—too many changes happening too quickly for scholarly distance. But we are b ...
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.
Challenges Faced by families of Autistic Children
2014
Autism Spectrum Disorders (ASD) is a complex neurological disorder that affects brain function which causes impairments in multiple areas of development including social interaction, communication, and behavior and typically appears within the first three years of life. Families having children with ASD face many challenges as the disorder is associated with disruptive antisocial behavior. Parents with ASD children face extreme difficulties in dealing with challenging behaviors, teaching their child to communicate, teaching basic life skills, guarding their child from danger, and preparing their child for adult life. Besides, such families also experience high levels of stress, high recurrence risks, misconceptions and assumptions, feelings of guilt and blame regarding child’s diagnosis. The social stigma attached to the disorder causes lot of discrimination not only of the autistic child but also of the family as a whole because the family is seen to be a part of the illness. The p...
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.
The challenges in raising autistic children: The voices of mothers
International Journal of Evaluation and Research in Education (IJERE), 2022
Autism spectrum disorder (ASD) is defined as a lifetime developmental disorder usually identified by social interaction impairment, communication deficits, and repetitive behavior. The cases of children detected with ASD are rising globally, including Malaysia. Parents, as the prime caregiver to these children, face numerous challenges due to what is entailed in taking care of their children. This paper describes a case study where we examined the views and experience of three mothers, each of whom has an ASD child. Data were gathered through face-to-face semi-structured interviews, after which they were transcribed and analyzed using the thematic analysis method. The mothers narrated that the challenges they encountered include the difficulty they had in initially accepting their child’s diagnosis; labelling and discrimination; phase-based temporal challenges; endless physical, emotional, and mental sacrifices; finding the strength and patience to deal with the situation; academic ...