I am obsessed with history, with people who exist for others in textbooks next to dates to be memorized. For me, the people come alive as I imagine their daily lives whenever and wherever they lived.
I grew up when autism was considered rare and the fault of the “frozen mother” who failed to establish an emotional connection to her child. Highly verbal most of the time – at least when not under stress – I received no formal diagnosis but for several years therapy to encourage eye contact, conversation, and taking turns in games. I never figured out why I saw special doctors – my mother said because of my weak eyesight but lots of children wore glasses and never saw special doctors. And I continued to be out of step with my peers, often bullied or excluded from their parties and activities. My closest connections were with teachers and much older schoolmates assigned to help me. My diagnosis in the early 2000s with what was then known as Asperger’s Syndrome answered questions that had nagged at me for decades as I struggled in school and work.
One of the most fascinating aspects of studying history is figuring out how people came to life-altering decisions without the benefit of hindsight.
One of the most fascinating aspects of studying history is figuring out how people came to life-altering decisions without the benefit of hindsight. Had we known then what we know today about the autism spectrum, my parents and I might have made different decisions. We’re not alone in this dilemma. At the time of my diagnosis, 1 in 68 people were diagnosed on the autism spectrum (including those with Asperger’s, incorporated into the autism spectrum in 2013). Today, it’s 1 in 59. Much of this is due to better diagnostic tools…which raises the question of how autistic people carried on their lives before these tools existed.
Set in 1986, Nicole Panteleakos’s Planet Earth Is Blue portrays a twelve-year-old girl who is both autistic and nonverbal. Though aware of her diagnosis, her social workers and teachers have no idea of her rich interior life and her abilities. With the exception of a devoted older sister who has gone missing and the caring foster family that seeks to give her a permanent home, no one understands Nova or knows how to nurture her. The label offers no real answers. Nova, however, does, and her effort to tell her story and make herself visible lies at the heart of this moving debut novel.
My co-authored middle grade novel-in-progress and my just-completed YA novel portray boys who today would be considered autistic but who weren’t diagnosed then. In the middle grade novel set in 1982, twelve-year-old JJ is misdiagnosed, his poor grades, social isolation, and inability to follow the rules attributed to “learning disabilities,” “minimum brain dysfunction,” and general weirdness. When his father loses his job and cannot find another one because of the failed PATCO strike and JJ’s academic and conduct records make him ineligible for a Catholic school scholarship, he ends up in a Brooklyn public school. There, his lack of awareness of social norms, including the racial divide, enable an unusual friendship with an isolated (for different reasons) Afro-Latinx classmate in an honors class where JJ doesn’t appear, on the surface, to belong. In middle school I too experienced misdiagnosis and placement in a class where I didn’t belong but ended up getting more out of it than the class that I should have attended.
For my YA novel, TORCH, I travel to 1969 and the other side of the Iron Curtain during the Cold War. Psychiatric misdiagnosis served a more nefarious purpose, not only in the Soviet Union but also in the allied and occupied nations of Eastern Europe such as Czechoslovakia where TORCH is set. From the 1950s until the fall of Communism in 1989, thousands of dissidents received psychiatric diagnoses that discredited them and led to their confinement in hospitals and prisons. One of my three protagonists, Tomáš, is the misfit son of the local Communist Party leader. Tomáš’s preference for solitude, weak social skills, and keen sense of fairness (which reveals his father’s hypocrisy) have led to an “anti-social” label with potentially dire consequences for his freedom and his future.
In the course of researching this novel, I came upon the work of Grunya Efimovna Sukhareva, a Moscow-based child psychiatrist who identified the characteristics of autism almost 20 years before her Vienna- (and later U.S.-) based counterparts Leo Kanner and Hans Asperger. Because of the Soviet Union’s isolation both before and after the Second World War, her work remained relatively unknown in the West. First calling the syndrome “schizoid psychopathy” in a 1926 article, she later referred to it as “autistic (pathological avoidant) psychopathy.” In the 1930s, she advocated for psychiatric hospitals rather than labor camps, a solution seen as merciful at the time, but less so in the following decades when psychiatric abuse replaced show trials as a means of ensuring conformity.
By portraying experiences of autism in the past, I reveal that we have always been here, part of our communities’ history.
By portraying experiences of autism in the past, I reveal that we have always been here, part of our communities’ history. I’m also aware that giving a historical character the diagnosis that perhaps didn’t exist at the time, or if it existed was not in fact given to them, carries its own dangers. Thus, I refer to my own voices characters as “who would today be considered autistic,” however they were labeled at the time. Many of those labels were pejorative, limited, and made debunked assumptions about their parents’ skills, their intelligence, and their emotional lives. Yet despite advances in our understanding of autism, autistic children and adults continue to experience the consequences of crackpot theories and a society that often punishes us for thinking differently. And that’s why we need to know what happened in the past, because we’re always in danger of sliding back into it.
Lyn Milller-Lachmann is the author of the award-winning historical novels for teen readers, Gringolandia and its companion Surviving Santiago, as well as the pioneering own voices novel Rogue, which features an autistic eighth grader obsessed with the X-Men. Her next novel is due out in fall 2021. She translates children’s books from Portuguese and Spanish to English and writes about diversity and social justice issues for children and teens at The Pirate Tree, www.thepiratetree.com as well as on her own blog, www.lynmillerlachmann.com.