Life With Severe Autism
By Amy S.F. Lutz
“I see only hands,” Amy S. F. Lutz writes. “One wrapped over Jonah’s fist, another under his jaw to keep him from biting, another untangling my hair from his fingers, one intercepting before he could yank another necklace off my neck. … I never had enough hands.”
The author is trying to safely defuse her severely autistic son, in the midst of one of the rages that once consumed him. Jonah, now 21, is not “quirky.” Nor is he an “indigo” child possessed of extraordinary and mysterious abilities. He is an affectionate young man who loves his parents, his four younger siblings, pretzels with cheese sauce and the kind of roller coaster rides that make the rest of us hurl. He also needs to be watched every minute of every day. Left to his own devices he will run away, or perhaps flush his iPad down the toilet when it needs to be recharged. He has few words. Though he can write and “decode” text, he doesn’t really comprehend. He required almost a year of hospitalization for his violent outbursts, and maintenance electroconvulsive therapy to quell his rapidly cycling bipolar disorder. When he was younger he might have tried to attack you, or himself. His family loves him deeply.
Jonah is at the center of Lutz’s “We Walk: Life With Severe Autism.” (He’s a dude who loves to be in motion, but given the unknowables of his world to his family, the title also evokes II Corinthians 5:7: “We walk by faith, not by sight.”) Yet this extraordinary and thought-provoking series of essays is not really about him, or even about his family. It’s about us. Lutz is asking us to consider a question fundamental to a decent society: Can we take the most vulnerable among us and give them a place at the table?
“We Walk” manages to be both heartwarming and cerebral. Lutz asks a whole bunch of questions — questions that I, as the mother of a far less affected but still dependent autistic son, wrestle with daily: Can a profoundly intellectually disabled person have a relationship to God? What is friendship to her son — and can it include the myriad people paid to care for him? Does the language we use to talk about disability matter? Are coercive treatments like electroconvulsive therapy, applied behavioral analysis and physically guided feeding (Lutz needed to take Jonah for professional help because he ate only pretzels and peanut butter) traumatizing, or a sometimes painful path to a better future?
There is always someone around who is happy to argue the inarguable, and nowhere is this more true than in various factions of the disability movement. Deaf people who opt to get cochlear implants because it’s easier to live in this world with hearing are labeled traitors to deaf culture. Small people who opt for painful limb lengthening because they would like to be able to comb their own hair or wipe their own bottoms are called — as Tiffanie DiDonato was called in her memoir, “Dwarf” — sellouts. And when it comes to autism, the neurodiversity movement has a message for you: Autism is merely an alternative way of seeing the world, and don’t you dare say otherwise.
The argument at the heart of neurodiversity, popularized in Steve Silberman’s “NeuroTribes” and promulgated in groups like the Thinking Person’s Guide to Autism and Autistic Self Advocacy Network, is that autism isn’t a disease at all, but rather a different way of seeing the world. To the portion of autistic men and women who are capable of autonomy, self-expression and self-awareness, that is absolutely true. Writers like John Elder Robinson, Thomas Clements and Maxfield Sparrow have written eloquently about both the beauty and pain of navigating the world with their differences.
But then there are those like Jonah whom the neurodiversity movement would rather not acknowledge as one of their own; and Lutz, risking their wrath, courageously takes them on. Many autistic self-advocates believe that the only reason profoundly autistic individuals aren’t articulating insightful ideas is that their parents and society have failed them. Lutz cites one particularly obnoxious self-advocate who, in a blog post, mocked a parent for praying every day that her child would have the self-awareness to speak for herself, never mind join a social justice movement: The blogger, Lutz writes, “doesn’t accept that there are those whose significant intellectual disability precludes the level of abstract thinking, logical reasoning and creative processing necessary to make any kind of philosophical argument.” Lutz answers this writer’s contempt with a coolness and clarity I could never muster. (Having had my own tangles with the #actuallyautistic murder hornets on Twitter a couple of years ago — a tangle that eventually escalated to death threats and an online petition that my son be removed from my care — I am a seething hot mess when faced with this kind of stuff.)
Lutz makes her points so intelligently and persuasively that on several occasions when I disagreed with her, the force of her reason brought me around. For example, she writes about “inspiration porn,” those viral videos that so many disability advocates abhor, where the autistic kid is asked to the prom by the cheerleader, or the wrestling star gives up his perfect record and allows himself to be pinned by the kid with Down syndrome. As someone whose aversion to being pitied ranks right up there with Marmeladov’s, I’ve always been with the disability advocates on this one. But Lutz made me recognize that these moments are about kindness, not pity, which is something that should be applauded always. The social scientist Philip Zimbardo, who studied in-group versus out-group behavior, puts it like this: “Beliefs follow behavior. Get people to perform good actions, and they will generate the necessary underlying principles to justify them.”
What makes “We Walk” so moving is that Lutz envisions an inclusivity that does not deny reality. It is true, as Lutz points out, that “nothing is more isolating than severe autism” — so many occasions missed because you can’t take your child safely into many situations, and he or she can’t be left with a babysitter. And it may also be true that someone will always have to look after Jonah.
But as the bioethicist Allen Buchanan notes, “Honoring the commitment to inclusiveness may require a mutual sacrifice of legitimate interests.” Maybe Jonah won’t, and shouldn’t, be welcomed at the opening of a Broadway play or a romantic posh restaurant. But isn’t there the almost empty movie matinee or the family smorgasbord where his occasional moans or gestures can just be part of the passing scene? After all, few of us will escape a life where, by nature of illness mental or physical, we will not at some point be “othered.”
“From a purely quid pro quo perspective, don’t we all hope to be gently guided home if we wander away one day in the throes of dementia?” Lutz writes. “Wouldn’t it be easier to face our futures if we knew that our neighbors would shovel a path in the snow for our wheelchairs, or that our fellow theater patrons would gracefully pretend our ventilators didn’t disturb them?”
“We Walk” clears a path for us toward kindness and understanding.
Incidentally, Jonah’s been known to steal French fries off a stranger’s plate when Lutz takes him to a diner. He can steal a few of mine. Anytime.
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