While visiting my son Charlie‘s autism school yesterday, we spoke briefly to a man whose 20-year-old daughter is also a student there. He had overheard the brief strategizing session we were having with Charlie’s teacher and a behaviorist about his attending day camp for the first time ever next week. The man enthused about the sleepaway camp his daughter attends and asked us if we had another child. When we said we that Charlie is our only child, the man expressed his regrets that Charlie doesn’t have a sibling.
We’ve heard this before; other people have suggested it’s a pity we “only” have Charlie and are therefore missing out on all those experiences of a “typical” child’s childhood. Jim and I find our life with Charlie to be quite full and fulfilling. It’s a truism but every family is different and, for us, being able to devote all of our energy and resources to Charlie — who has many needs — has been the right choice.
Reading a recently published book by two friends, Siblings and Autism: Stories Spanning Generations and Cultures, has given me more insight about how things might be if Charlie had a sister or brother. Siblings and Autism is edited by Debra L. Cumberland, whose brother is autistic, and Bruce E. Mills, whose son Jacob is autistic. I met Debra and Bruce some years ago at a conference about autism and representation, and I have also been fortunate to meet Bruce’s children, Jacob and Sarah. Many of the contributors to Siblings and Autism are, like Debra and Bruce, professors of English and writers. Maureen McDonnell, who grew up with two autistic brothers, and Alison Wilde, who writes of “feeling privileged to have a sister like Sarah” (p. 201), are involved in disability organizations and in advocating for the needs of autistic individuals. Two writers, Aparna Das and Chuan Wu, write about growing up with an autistic sibling outside the US, in India and China, respectively.
Siblings and Autism shouldn’t only be read by those with a sibling on the autism spectrum, or by parents who have an autistic child and one who is not. The book provides a valuable window into what it was like to raise an autistic child in the 1960s and 1970s.
The first-person accounts in Siblings and Autism provide an honest and compassionate, and at times very painful, window on what it was like to grow up with a sibling in the era before the Individuals with Disabilities Act and educational programs such as my son has attended since he was two years old. Most of the writers and their siblings are around the age of my husband and myself, meaning that most of their parents raised autistic children at a time when, according to “experts” like Bruno Bettelheim, parents were blamed were causing their child to become autistic. Erika Reich Giles’ mother, a refugee from Hungary living in the US, is told in 1953 that her son Robie “is an idiot” (p. 176). Debra Cumberland wonders about how theories of mother-blame as the cause of autism affected her mother, who had herself grown up in Germany during World War II and was not herself always welcomed in Storm Lake, Iowa, where someone once drew a swastika on her purse (p. 225-6).
Each essay in Siblings and Autism is an account of two childhoods, that of the writer and of their sibling. “I am the sister of an autistic man, my almost-twin, my stranger” writes Catherine Anderson at the opening of “House on the Meadow.”The writers recall defending a sibling who was very, very different, from the insults and jeers of other children: “He is not a retard!” Erika Nanes recalls saying to other children (p. 48). Lindsay Fisch recalls two terrifying episodes when her brother Adam goes into shock when she’s babysitting him and when he gets stuck in the laundry chute (pp. 150 – 154); when she goes to college, she misses him and decides to work at a school for individuals with special needs.
More than a few of the writers recall the day their sibling left home to live in an institution. Anne Clinard Barnhill writes of visiting her younger sister Becky in a group home in another state; the final image of Becky running after the car as Barnhill’s father drives slowly away is heartbreaking. Debra L. Eder’s parents chose not to institutionalize her brother Stephen. She writes of “hiding in books” in a New Jersey household with three other sisters and a brother who does not talk but whose behavior, including “crobbling” (“Stephen’s lunging-tickle-grabbing,” p. 121) as a kind of communication.
The writers write candidly and compassionately about seeing their parents struggle to educate and take care of their children, without the services and knowledge that have helped so many parents today. Matthew K. Belmonte, currently a professor of brain research in India, writes about his mother setting up a Montessori classroom in their house to educate his older brother (p. 99). Barnhill remembers seeing her mother trying to teach her younger sister Becky learn to count to ten at the kitchen table (p. 56). Katie Harrington Stricklin writes about helping her brother Doug learn to speak, and of a family life centered around her brother, never her (p. 69). Apurna Das writes about her family arranging the family’s life around her youngest sibling Runi’s needs and deciding to study psychology and special education; Das is currently the head of the Special Needs Department at the Woodstock School in India (p. 89). Chuan Wu describes growing up with an older autistic sister in Nanjing in the 1980s and being told from the start that “You must take care of Older Sister” (p. 162). Thomas Caramagno describes how his younger brother Joe David blossomed in a work training program in Santa Barbara.
In “Family Resemblances,” Erika Nanes describes visiting her brother Bruce and reflects on growing up with him when a friend learns the baby she is carrying has Down’s and tries to decide if she will keep the child or not. Nanes and other writers including Belmonte often return to the theme of how they see aspects of themselves in their autistic siblings; of how, as Belmonte writes, “autism connects us.” Belmonte’s essay combines an account of growing up with his older brother and neurological research; he notes how he is in many ways similar to his brother, both having trouble with loud sounds, a fascination for sensory patterns and a predilection for lining up objects. Writes Belmonte: “When we look at autism, we really are looking at a basis of human cognitive diversity” (p. 109).
Siblings and Autism takes it place on a growing shelf of memoirs by writers who grew up with an autistic brother or sister including Karl Taro Greenfield’s Boy Alone: A Brother’s Memoir and Wallace Shawn’s Twin: A Memoir. As the book’s editors note, the many essays in Siblings and Autism all have a similar trajectory, “identifying difference and the struggle to acknowledge, accept, and understand that difference” (p. 25). Yet the book’s very existence also is a sign of how far we have come in understanding and accepting autism, as conveyed by the individual voices of the writers who speak not simply for their siblings but through them, through an experience of growing up in, as McDonnell writes, “autistic-American families.”
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Photo of my friend Shannon Rosa's three wonderful kids.