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“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. 
 
 

In the fall of 2009, Amy Lutz and her husband, Andy, struggled with one of the worst decisions parents could possibly face: whether they could safely keep their autistic ten-year-old son, Jonah, at home any longer. Multiple medication trials, a long procession of behavior modification strategies, and even an almost year-long hospitalization had all failed to control his violent rages. Desperate to stop the attacks that endangered family members, caregivers, and even Jonah himself, Amy and Andy decided to try the controversial procedure of electroconvulsive therapy or ECT. Over the last three years, Jonah has received 136 treatments. His aggression has greatly diminished, and for the first time Jonah, now fourteen, is moving to a less restricted school.

Each Day I Like It Better recounts the journeys of Jonah and seven other children and their families (interviewed by the author) in their quests for appropriate educational placements and therapeutic interventions. The author describes their varied, but mostly successful, experiences with ECT.

A survey of research on pediatric ECT is incorporated into the narrative, and a foreword by child psychiatrist Dirk Dhossche and ECT researcher and practitioner Charles Kellner explains how ECT works, the side effects patients may experience, and its current use in the treatment of autism, catatonia, and violent behavior in children.

The network as a mode of being

In 1968, Fernand Deligny established a “network” for informally taking care of children with autism that was more than a mere site of living; it was a milieu created out of a reflection on the mode of being autistic. What is a space perceived outside of language? What is the form of a movement without perspective or goal? How do we engage with a world that is not our own, a world turned upside down yet truly common, where acting cohabitates with our actions and the unknown with our forms of knowledge? Such is the mythical web of the “Arachnean,” made of lines, holes, traces, enigmas, and questions without answers that demand to see that which cannot be seen. The Arachnean and Other Texts is a collection of Deligny’s writings from the second half of the 1970s. Long before the digital age of social networks, meshworks, and digital webs, Deligny speaks to us in his own autobiographical and aphoristic manner. For him, life was always experienced in the form of “the network as a mode of being.”g.”