This debut collection of personal essays examines the experience of parenting an autistic child.
Hornok has an autistic daughter and is on the board of the National Autism Association of North Texas. “Autism can be a lonely journey,” she writes, but knowing that other families have been through the same thing can be comforting. To that end, she interviewed 30 parents of children with autism, based everywhere from Missouri to Singapore. On the basis of those interviews, she has rendered their accounts as intimate, first-person narratives. (One of the essays, about Kirk Smith’s son JJ, includes excerpts from Smith’s 2013 memoir, Rice Krispies with Ketchup.) Each piece is concise, thought-provoking, and illustrated with at least one black-and-white family photograph. The children range from highly functional to virtually nonverbal, though there are some similarities in their progress. A recurring pattern in the parents’ recollections is that their children seemed to develop normally until the age of about 1 1/2, at which point there was a regression in motion and language, and repetitive behaviors began. A common theme in this vibrant collection—which features a foreword by Temple Grandin—is meticulous planning to avoid meltdowns. But these parents are honest about their nightmare moments. A Swedish mother and her son were asked to leave a plane when he wouldn’t stop screaming; an Idaho woman had to call the police when her son started hitting her. There were also drowning scares and a threat of shock therapy. The disparity in treatment options—not just between countries, but between U.S. states—is eye-opening. Most of the parents featured have taken matters into their own hands, starting charitable organizations or support groups to plug the gaps in government services. For instance, an Ethiopian mother built a school for kids with autism so parents wouldn’t leave them tied to beds, and a Boston mother lobbied states to require insurance companies to cover autism treatment. A Russian father concludes, “Kids with autism are given to us for a reason: they are our greatest teachers.” This book offers both lessons and hope.
A well-written and reassuring set of true stories about autism.