Life With Severe Autism
In this collection of beautiful and raw essays, Amy S. F. Lutz writes openly about her experience — the positive and the negative — as a mother of a now twenty-one-year-old son with severe autism. Lutz’s human emotion drives through each page and challenges commonly held ideas that define autism either as a disease or as neurodiversity. We Walk is inspired by her own questions: What is the place of intellectually and developmentally disabled people in society? What responsibilities do we, as citizens and human beings, have to one another? Who should decide for those who cannot decide for themselves? What is the meaning of religion to someone with no abstract language? Exploring these questions, We Walk directly — and humanly — examines social issues such as inclusion, religion, therapeutics, and friendship through the lens of severe autism.
Continue below for an excerpt from the book’s first chapter.
Atlantic City doesn’t care about ketchup stains. The boardwalk is battered and sticky and cheap; there isn’t much damage Jonah can do. I don’t have to keep a firm grip on him, the way I do when we’re in malls or restaurants. If he suddenly bolts into a store to grab something, the worst I’ll be liable for is a box of Mike and Ikes. And I appreciate that people in Atlantic City don’t stare when Jonah flaps his hands or when he just stops and lies face down on the ground — simply because there are much more interesting things to watch, like the woman who appears crazy and homeless and may very well be neither who is always sitting on the same bench singing gospel music; or the volunteers who troop out every morning to feed the feral cats that live under the boardwalk; even, once, a movie shoot — The Bounty Hunter, starring Jennifer Aniston.
But what I love most is that, despite the grime and the occasionally hilarious, always tasteless T-shirts strung like flags across every storefront, Atlantic City brims with potential. Every time Jonah and I walk past the casinos I think about the jackpots that are celebrated inside. More people, obviously, lose than win, but money can be trickled away anywhere. There are very few places where fortunes are made instantly, where people’s lives are suddenly and irrevocably improved by strokes of luck. And maybe it’s that combination that resonates so fiercely with me: resilience and faith, since these defined our lives for the years that Jonah suffered from random, intense rages during which he would pound himself in the face, punch through windows, and attack me and Andy as well as his teachers and aides. When I think about that time now that his behaviors have been medically stabilized, I still wonder how we persevered, managing the frequent attacks that left us bitten, bruised, and scratched; insulating Jonah’s younger siblings and cousins who, thankfully, never became targets; and embracing him when the tantrums were over without (noticeably) flinching.
Actually, I know how we survived. Like the big winners in the casinos, we were lucky: we found the right doctors when we needed them, even if it sounds perverse to describe hospitalizing a nine-year-old boy for almost a year as “lucky.” Still, as Jonah and I walk quickly past the Revel, since the sun bouncing off the mirrored panels of Atlantic City’s newest (and already bankrupt) resort is uncomfortably hot, even so early in the morning, I haven’t stopped hoping for more luck, more transformation, more miracles. Why not? Scientists have already succeeded in reversing the symptoms of Fragile X, the most common inheritable form of autism, in adult mice. I understand that we are far away from human trials, and that whatever researchers learn from these studies may be irrelevant to Jonah, who doesn’t have Fragile X. But even if Jonah never benefits from this particular discovery, surely something therapeutic will emerge from the $200 million in autism research the National Institutes of Health funds every year, including studies examining the genetic, structural, and chemical impairments in autistic brains — which, when fully understood, will likely translate into new treatments for core deficits in language and socialization. If these come too late for Jonah, then at least they may ease the minds of my other kids as they plan their own families with, I imagine, significant trepidation, given the increased odds their children will be diagnosed with the disorder.
These thoughts often unspool from my mind as we pass the glassed casino entrances, catching as people go in and out a blast of air-conditioning and the frenzied chatter of slot machines (because someone is always winning in Atlantic City, even at eight thirty in the morning). I try to picture my children as adults. It’s easier to do with my oldest daughter, who is already approaching my height, no longer bucktoothed and potbellied as she was when she was younger. She is the child most likely to accompany me and Jonah on our walks, and although I suspect Jonah prefers my undivided attention, he has come to really love Erika. The twins are still undifferentiated children to him — he routinely confuses their names, even though one is blonde and blue-eyed and a girl, and the other has dark eyes and hair and is a boy. But since Erika has attained the size of a grown-up, he treats her like one: listening when she warns him to keep his mitts out of the peanut butter jar, scripting with her from his favorite videos, and slipping his arm through hers as we stroll the boardwalk. For most of her life, Erika’s efforts to draw with Jonah or bounce with him on the trampoline were met with consistent rejection, so I love to watch them together. “‘Y Dancing’ song,” he might say to her, which means that he wants her to sing the mysterious phrase “Y Dancing” (“Why Dancing”?) to the tune of the Dora the Explorer ditty “I’m a Map” — all of which Erika understands, so she does it, causing Jonah to jump in place and clap his hands in excitement. And I think, looking at them, that my hope for remedy, for less suffering in the future, isn’t unique to parents of kids with autism, or parents in general, but very possibly defines the human condition.
