Autism, the Challenge & the Gift
Reflections on the Thunberg family’s new book, Our House Is on Fire: Scenes of a Family and a Planet in Crisis, by Mike Matejka
“Disability” is a qualifier that mistakenly brands a significant population as lesser people. What nourishes and saves humanity is diversity; those marked “disabled” often bring a perspective to human affairs that those of us without a label miss.
Would the climate crisis be visible without a Swedish teen on the autism spectrum? Our
daughter is on the spectrum, sharing the “Asperger’s Syndrome” diagnosis that Greta Thunberg has, coupled with the misophonia that Greta’s younger sister Beata Ernman has.
Our House Is on Fire: Scenes of a Family and a Planet in Crisis, written by Greta, sister Beata, Dad Svante Thunberg and Mom Malena Ernman, is comprised of two stories that inter-weave profoundly – two parents raising unique children, with one unexpectedly embarking on a planetary rescue mission. Malena is the narrator, yet this is a respectful family collaboration.
Within its first third, Our House recounts the frantic efforts of two parents to protect and raise their daughters. The remaining two-thirds is the story of Greta’s climate change mission and how it first forces the family to face uncomfortable truths. Both are skillfully enmeshed, told in Malena’s voice, written in short, engaging daily life snapshots and reflections.
We are an autism family. Like Greta, our daughter is capable of incredible focus; she can enumerate facts and can penetrate arguments. She can also be immobilized by fears, “what ifs” and other quandaries. Like Greta, our daughter has particular food preferences, and like Beata, can’t stand sounds of silverware, multiple conversations and chirping birds – yet our daughter can sing with perfect pitch and sight read music.
Sometimes, just getting through a day is exhausting. A grocery store outing is potentially traumatic. As a parent, one tries to anticipate the tension points and steer clear, but many appear unexpectedly and require quick maneuvering.
Through all this, our daughter remains a delight. She has a ready smile, a quick but quirky responsiveness, and will share insights that leave one astounded. The family story in Our House was eminently relatable.
Malena is an incredibly talented opera and musical presence in Sweden, known on the world stage, and Svante an actor -- two creative people immersed in the arts. The book’s first third is their wrestling match with autism, reaching a critical point when Greta refused food at age eleven. Both parents adapt; Svante becomes the house dad while Malena pursues an international and acclaimed musical career.
Famously, it was a school film on the Pacific Ocean floating plastic garbage dump that awakened Greta. Before she challenged the world with her school strike, she first called out her own parents.
Melena’s musical career took her around the world; the family was used to inexpensive jet fairs for vacations. Greta’s fact-finding mission eventually led to a profound lifestyle change. No more CO2 emitting jet flights. It was the train or the family’s electric car.
Greta’s knowledge, her planetary concern and her unassailable logic forced family change. Those on the autism spectrum don’t have much use for nuance – the world is often black and white – and you are either all in or all out. At times, this can be frustrating, yet it can also be a gift of clarity and deep insight.
Sweden is no different than other affluent nations when it comes to consumption. The carbon footprint is a size 14, compared to the baby shoes that the less privileged world imprints. The family wrestles with their own habits and consumption, affluent society privileges, where people often look to other nations, especially poorer nations, to halt the thermometer’s rise.
August 20, 2018: a small girl sat down in Stockholm with a wooden sign. Greta was making her statement, hoping others would listen. Her parents’ trepidations were surely overwhelming. With single-minded focus, Greta made her stand. The world could easily have passed her by. But slowly, people, and especially children and other teens, began to listen. Her personal demonstration brought global attention to a problem many of us hope “tomorrow” would somehow solve.
To the world’s amazement, and perhaps most especially, to Svante and Malena, the child who once refused to eat stands before the world. She has her single-minded mission and is confident in her knowledge. Greta blossoms, taken seriously as the world listens.
Life’s spectrum – of flora and fauna, cold and hot, unique and enlightening, mystifying and sometimes infuriating people – is a gift. Our planet so far has nurtured and perhaps survives because of its diversity. Excluding those who are labeled as other – whether by race, ability or gender – is a rejection of our greatest gift. Without the forthright stance of the world’s Gretas, and the nurturing caring of parents who nerve never quit, how can we survive?
Looking for more books on neurodiversity and autism? Check out my list here!
Author Bio: Mike Matejka of Normal, Illinois and his spouse are parents of a daughter with autism. She has led them on an interesting life journey together. Mike is retired legislative affairs director for the Great Plains Laborers District Council and was the Grand Prairie Union News editor. He is very active with community organizations, including their local Autism Friendly Community effort -- https://autismfriendly.community/