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Understanding Autism
Autism has attracted a great deal of attention in recent years, thanks to dramatically increasing rates of diagnosis, extensive organizational mobilization, journalistic coverage, biomedical research, and clinical innovation. Understanding Autism, a social history of the expanding diagnostic category of this contested illness, takes a close look at the role of emotion--specifically, of parental love--in the intense and passionate work of biomedical communities investigating autism.
eBook
Becoming an Expert Caregiver
“The hardest thing is dealing with the rest of the world. And we kind of accommodate our lives around that. But the rest of the world doesn’t.” These poignant words were spoken by Charlotte, a mother and primary caregiver of a five-year-old autistic boy, and her words reference the structural arrangements of our world that shape autism carework today. This book features the voices of fifty primary caregivers of autistic and neurodivergent children who illuminate the process through which laywomen become expert caregivers to provide the best care for their children. Expert caregiving captures an intensification of traditional family carework – meeting dependents’ financial, emotional, and physical needs – that transcends the walls of one’s private home and family and challenges the strict boundaries between many worlds: lay and professional, family and work, private and public, medical and social, and individual and society. The process of becoming an expert caregiver spotlights several interesting paradoxes in sociological literature, particularly regarding gender, family, and medicalization, and often forgotten structural flaws in “the rest of the world.”
Throughout the chapters in this book, the expert caregiver is one person who faces unbelievably daunting tasks of filling or reforming persistent institutional gaps, primarily in education and health care, and subverting ableist cultural norms. Without institutional support, answers to their questions, or pragmatic avenues to access resources, lay caregivers become the experts. Their trials and tribulations, especially when navigating the boundaries of professional/lay and private/public worlds, illuminate a type of carework that is increasingly relevant to a growing number of young families caring for neurodivergent, disabled, medically fragile, and/or chronically ill children. These stories offer a vivid picture of the often invisible complex challenges and structural forces that drive individuals to become expert caregivers in the first place.
eBook
Linking Child Autism to Parental Depression and Anxiety: The Mediating Roles of Enacted and Felt Stigma
This study examined whether child autistic symptoms would heighten parental affective symptoms through evoking enacted stigma from the community (i.e., public and courtesy stigma) and felt stigma within the parents (i.e., vicarious and self-stigma). Cross-sectional questionnaire data were collected from 441 parents of children with autism spectrum disorder. Path analyses showed that social communication and interaction deficits and restricted and repetitive behaviors in child autism were positively associated with public and courtesy stigma. While public stigma was positively associated with parental vicarious stigma, courtesy stigma was positively associated with parental self-stigma. Both vicarious and self-stigma were positively associated with depressive and anxiety symptoms among parents. Findings revealed how child autism could compromise parental well-being through exacerbating the family’s stigmatizing experiences.
Journal Article
One of us : a family's life with autism
A father chronicles the struggles he and his wife endured in diagnosing, treating, and understanding their autistic son's disability and offers an honest look at a child who does not overcome autism and a family that survives on love.
Book
Parenting Stress in Mothers and Fathers of Toddlers with Autism Spectrum Disorders: Associations with Child Characteristics
Elevated parenting stress is observed among mothers of older children with autism spectrum disorders (ASD), but little is known about parents of young newly-diagnosed children. Associations between child behavior and parenting stress were examined in mothers and fathers of 54 toddlers with ASD (mean age = 26.9 months). Parents reported elevated parenting stress. Deficits/delays in children’s social relatedness were associated with overall parenting stress, parent–child relationship problems, and distress for mothers and fathers. Regulatory problems were associated with maternal stress, whereas externalizing behaviors were associated with paternal stress. Cognitive functioning, communication deficits, and atypical behaviors were not uniquely associated with parenting stress. Clinical assessment of parental stress, acknowledging differences in parenting experiences for mothers and fathers of young children with ASD, is needed.
Journal Article
Positive behaviour strategies to support children and young people with autism
Teachers in mainstream schools are increasingly accommodating pupils on the autistic spectrum in their classrooms, and this book offers advice on one of the most difficult aspects of teaching children and young adults with autism - understanding and managing their often challenging behaviour. The book: o explores issues surrounding behaviour support o supplies INSET materials for developing practice in behaviour management o contains self-audit tools for practitioners o gives practical advice on developing an appropriate learning environment o provides guidance on how to promote positive behaviour o contains tried and tested photocopiable material and practical resources.
eBook