By Amy Lutz
On Independence Day, my 21-year-old, severely autistic son Jonah bloodied his own nose because he couldn’t go to the beach. No matter how many times I explained that we had just gone to the beach the day before, that we would go again the following weekend, and wasn’t there anything else he wanted to do, he would just immediately demand, “Beach, 130 more times!” And as I tried (unsuccessfully, always unsuccessfully) to distract Jonah – offering his iPad, a walk, swimming, snack, drawing, anything – I couldn’t help thinking of Madeleine Ryan’s bizarre paean to autism, “Dear Parents: Your Child With Autism Is Perfect,” which had appeared two days previously in The New York Times.
Intent on adding “sparkle” to the autism story, Ryan effuses that autistic children are “the world’s most dynamic, creative, honest and disciplined creature[s]” who “are here to reclaim what it means to be authentic and truthful.” How does she know? Because Ryan – an Australian writer and director who has written dozens of articles as well as a forthcoming novel – is autistic herself.
I know, I know – autism is a spectrum. And I’m not here to challenge anything about Ryan’s experience, because, although I’ve been an autism parent for almost two decades, I know absolutely nothing about life on the Asperger’s-end of the spectrum. Unfortunately, Ryan shows no such restraint. In hyperbolic, sweeping language, she tells parents like me that we are the “chosen one[s],” who have more broadly been charged with parenting “everybody’s unacknowledged needs and feelings.”
But the problem isn’t that Ryan’s over-the-top manifesto reads so much like a parody of the neurodiversity philosophy it’s based on that I honestly assumed it was published in The Onion – it’s that she reveals a stunning ignorance of what severe autism looks like. My son Jonah is not “researching how to reverse engineer Damascus steel.” He has no idea what an engineer does, what steel is, how to find Damascus on a map, or what a map is. His lack of abstract language means his life is profoundly limited: he can answer no questions that begin with “why” or “how.” He will never go to college, hold a job, see the world, or have a romantic relationship. He will always require round-the-clock supervision, because he has no safety awareness: he doesn’t look before crossing the street, despite years of instruction; and in one terrifying moment, he tried to jump off a cruise ship because he wanted to swim in the ocean.
Nowhere is Ryan more patronizing than when she assures parents, “Your child might be verbal, nonverbal, aggressive, passive, introverted or extroverted. It doesn’t matter.” It doesn’t matter? Jonah broke a teacher’s nose when he was in kindergarten. He was kicked out of a school for autistic children because they couldn’t manage his behavior, and ended up spending a year inpatient in a neurobehavioral unit when he was nine years old. At least he never attacked my four younger children, although I lived in constant fear he would. Other parents are not so lucky: one mother of a severely autistic son has written about her heartbreaking decision to send her three younger children to boarding school to keep them safe from their brother’s violent rages. Aggression matters. A lot.
I’m not trying to scare parents whose children are newly diagnosed with autism. But Jonah’s experience is just as important as Madeleine’s, and must not be elided from the narrative in favor of some kind of fantasy autism nirvana (heck, my neurotypical kids aren’t perfect either). Disability scholar Tom Shakespeare notes that “minimizing the extent to which autism is an impairment – seeing it simply as ‘an alternative way of being’ – could be a denial of the pervasive and sometimes devastating impact of autism on both the child and the family.”
Ignoring the autistic kids who have detached their own retinas from hitting themselves in the face hundreds of times an hour or drowned after wandering from home doesn’t make them disappear. It just further isolates families already living in constant states of crisis. Only by shining a light on autism in all its manifestations – Damascus steel and Sesame Street; genius and severe intellectual disability; blunt honesty and broken windows; perfectly organized collections and walls stained with excrement – can we truly, as Ryan urges us to do, “honor those needs” and provide all autistics and their families with the support they need to thrive.
Amy Lutz is a member of the board of the National Council on Severe Autism.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.