Results by title

4 books match the query 'Parents of autistic children'

cover of Becoming an Expert Caregiver: How Structural Flaws Shape Autism Carework and Community

Becoming an Expert Caregiver

How Structural Flaws Shape Autism Carework and Community

Cara A. Chiaraluce

Rutgers University Press, 2025

“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. 
 
 
[more]
cover of Saving Ben: A Father's Story of Autism

Saving Ben

A Father's Story of Autism

Dan E. Burns

University of North Texas Press, 2009

[more]
cover of See Sam Run: A Mother's Story of Autism

See Sam Run

A Mother's Story of Autism

Peggy Heinkel-Wolfe

University of North Texas Press, 2008

[more]
cover of The Accidental Teacher: Life Lessons from My Silent Son

The Accidental Teacher

Life Lessons from My Silent Son

Annie Lubliner Lehmann

University of Michigan Press, 2009

"Jonah Lehmann is an accidental teacher of others, including his family and friends. This personal and touching account of Jonah's life is enlightening, especially to those coming to terms with similar challenges with autism and other cognitive disabilities. It was written with love to support research on autism, and I recommend it to anyone and everyone touched by those of us who are different."
---Patricia E. Kefalas Dudek, Legal Advocate for People with Disabilities

"I have never read a book about a disabled person that caught me from page one. I could not put this one down. Lehmann offers a profound perspective on living with the reality of a severely disabled child. This book will be required reading for students who take my class in Special Education Administration."
---Frances LaPlante-Sosnowsky, Associate Professor of Education at Wayne State University

"A story of the astonishing power of human love and family triumph over hardship. Lehmann's story, engaging and at times both heartbreaking and joyful, offers an intimate view of one mother's journey as she works with professionals and a blur of caregivers to assist the ever-changing needs of her son. I highly recommend it to seasoned professionals in the field of autism and students preparing for careers in special education."
---Janet E. Graetz, Assistant Professor of Human Development and Child Studies at Oakland University

A child teaches without intending to . . .
Having severe autism does not stop Annie Lehmann's son Jonah from teaching her some of life's most valuable lessons. The Accidental Teacher, a heartfelt memoir about self-discovery rather than illness, uses insight and humor to weave a tale rich with kitchen-table wisdom. It explains the realities of life with a largely nonverbal son and explores the frustrations and triumphs of the Lehmann family as Jonah grew into a young adult. This book is a must-read for anyone who has been personally touched by a major life challenge.

Annie Lubliner Lehmann, a freelance writer for more than twenty-five years, has published articles in many newspapers and magazines, including the New York Times and Detroit Free Press. She resides in Michigan with her husband and two of her three children. Her eldest son, who inspired this memoir, is now a young adult with autism who lives in a supervised home.

[more]