No, I Don’t Want Your Advice on How My Kids or I Can Be “Cured”
I’m not looking for a cure—not for my kids, and not for me. Any treatment we choose is merely a tool to help us enjoy our lives.
When I was in the first grade, my teacher told my mom that I was emotionally disturbed. “Or something like that,” my mom tells me. “She might have used different words, but that’s what she meant.”
“Why’d she say that?” I ask.
“Different things,” my mom says. “Someone would knock over your crayons, and you would get so upset.”
What my mom describes sounds familiar. I need control over my surroundings. I prefer my tools lined up just so. And I’ve never been a fan of people touching my stuff, but I’ve since learned how to manage better.
“You have to remember,” my mom says, “I was trained to respect authority figures.” Raised Catholic, with abusive parents, she had to obey orelse. Because the teachers and school administrators were authority figures, my mother listened to them. If they said something was wrong, something must be wrong. And my mom blamed herself—because that’s how mothers were trained to react when they were told their kids weren’t acting right.
I know how my mom felt, because we’re still trained to react that way.
The teacher said my mom needed to do something about me, or else I couldn’t come to school anymore. So my parents called the best child psychiatrist in town. She evaluated me, reassuring my parents that I was not, in fact, emotionally disturbed (whatever that meant). “Then she told us about ADHD and a lot of other things we’d never heard about,” says my mom.
This was in the early 1980s, and ADD with hyperactivity as a diagnosis wasn’t even named by the DSM until 1980. The doctor’s words, even to my well-educated parents, must have seemed mysterious. Finally, the psychiatrist offered to have me try Ritalin. My parents were desperate. Ritalin, which they knew nothing about, sounded like a cure.
The teacher said my mom needed to do something about me, or else I couldn’t come to school anymore.
Although I was only six, I clearly remember taking Ritalin, and I clearly remember not liking it. The medicine made me anxious and sad. I remember sitting on our brown leather chair when I came home from school, and crying for no reason. I knew I was sad, but the reasons I could give for my tears—I didn’t want to eat my lunch, for example—didn’t explain the intensity of my sadness.
My mom has similar memories of my time on the medicine. In fact, my desire to see if her memories match up with mine is why I started this conversation. They do, and then she tells me something else: “You told me that the medicine was making you feel weird.” She listened, and she took me off of it.
I only had a few more months of first grade, and my mom did everything she could to encourage the teacher to tolerate me in class. She signed me up to learn social skills in weekly sessions with a counselor—mostly I remember playing the game Sorry! a lot. This intervention was enough to keep my first-grade teacher happy, and I made it through the year. My parents never tried Ritalin or any other medicine with me again.
The thing is, given time and trial, the medicine eventually might have helped me feel better, make different choices, manage relationships with more ease. But for that to have happened, my mom and I would have needed ongoing support from a doctor. What we got instead was one visit and a prescription.
I’m at a dinner party with my husband and two boys when the man approaches me. His thick gray hair is cropped short, his skin tanned. The man, let’s call him Brian, wears athletic sandals and nylon shorts with many pockets. His T-shirt is made of repurposed material, or so the screen-printing proclaims. Despite his aggressively conventional unconventionality, he seems kind.
“I’ve been wanting to tell you something all evening,” he says. “Do you have a minute?”
Do I? I look around for my family. My husband and I are here with our two children, aged eight and ten, and the summer night is hot. The screen doors to the big wooden house swing open frequently as children dash in and out. Sometimes those children are mine. I have to keep a closer eye on them than other parents tend to, but from where I’m standing, my kids seem to be all right—happily occupied and safe.
“Sure, I have a minute.” I grab a bottle of beer, and take a seat.
Brian sits at the table next to me. “I have the worst allergies,” he says.
This is not the oddest conversation starter I’ve ever experienced at a dinner party, but then, I went to graduate school for an entire decade. “Really?”
“Don’t you?” he asks. “It seems like you do. You’ve been sniffling a lot.”
At this point, I still think Brian is making small talk, albeit odd small talk. “I do have allergies.”
Brian nods sagely. “I’d like to tell you about an amazing treatment that my wife and I have used.”
I prepare myself for a massively uncomfortable conversation. He’s going to try to sell me something.
“My wife used to get headaches,” Brian says. “But after this treatment” —he goes on to describe a particular type of tea, and some other herbal remedy— “her headaches disappeared.” He snaps his fingers, his glassy blue eyes bright. “It has to do with inflammation of the brain and the gut.”
He goes on, talking more about the gut and the brain, inflammation and tea. I’m now thinking about dessert. Then, the thunderclap: “And I thought it would help your boys with their problems.”
“What?” I’m sure I misheard while eyeing the key lime pie.
“If you stabilized their gut,” he says, “it would help your boys with their problems.”
He keeps talking, but my brain stopped processinghis words after I heard boys and problems. I set down my beer and walk away.
Outside, I find my husband. Taking his hand, I lead him away from the house and to a far corner of the grassy yard. I try to explain, but I’m sure I’m not making any sense. Words spill out: allergies and guts and inflammation and our babies and that asshole. I throw my arms around my husband and smush my face against his shoulder and weep. “How could he possibly think it was okay to say those things to me?”
What I couldn’t articulate, but he understood: How could he possibly think that I want my kids to be any different?
Except people, too many people, presume that I do want my children to be different than they are. Sometimes they are more subtle—if he were less distracted, he would learn more during his swim lesson—and sometimes they’re more in-my-face—if he won’t wear button-down shirts or eat a hamburger, how do you expect him to survive in the world?
I’m fortunate: I don’t care about how much of the swim lesson plan gets covered. I know that liking button-down shirts and hamburgers has nothing to do with a child’s future success. Between my own life experiences, and the hard work I’ve done figuring out what is true and right for my family, I’m able to identify the near-constant barrage of criticism and unsolicited advice for what it is: nonsense, albeit sometimes painful nonsense.
But parents are often vulnerable: to criticism, to bad advice, and to so-called cures. Some parents might be like me, at a dinner party where a stranger tried to foist a cure upon them. Some parents might be like my mom, vulnerable to the dictates of a teacher who insisted that her daughter had to change in order to stay in school.
I’m able to identify the near-constant barrage of criticism and unsolicited advice for what it is: nonsense.
Some parents, desperate or cruel or ignorant or all three, use treatments that are patently abusive. Parents of neurodivergent children have been particularly susceptible to the false cure industry, it seems. At the far end of a range of fake treatments for autism is Miracle Mineral Solution (MMS), composed of chlorine dioxide, a bleaching compound parents feed their children or use as an enema or in baths. The theory behind MMS treatment is that the bleach kills the pathogens that cause autism in the body. The reality is that bleach destroys the soft tissue of the digestive system, causing serious harm.
Then there’s chelation therapy, which circulates a chemical through the bloodstream to remove toxic chemicals such as mercury. Because some people incorrectly believe that autism is caused by mercury—i.e., the mercury in childhood vaccines—they also believe that chelation will cure autism by removing the mercury from a child’s body. But although chelation is an actual medical treatment, it can be very dangerous, with risks that include kidney damage and heart failure.
MMS and chelation are at the more dangerous end of the quack cures spectrum. Other cures include severely modified diets or added supplements, such as the supplements the man at the party suggested I use. The most common danger posed by these cures is financial ruin, as parents spend vast amounts of money on special food and supplements. However, physical dangers exist as well—children can suffer nutrient imbalances from supplements or react badly to them. Another treatment is hyperbaric therapy, in which children are exposed to higher than normal levels of oxygen and air pressure in order to decrease symptoms (including, according to one study of the therapy, lack of “eye contact”). Like supplements, hyperbaric therapy is expensive at hundreds of dollars per session, requiring daily sessions over the course of weeks or months.
Not only can false treatments and so-called “cures” cause physical harm, their prevalence points to the ableism of those who believe that neurodivergent kids, disabled people, need to be “fixed.” The so-called “problems” that need fixing are often identified by the cure-peddlers, or by authority figures like teachers who scare young parents, or by busybodies at dinner parties—not by disabled people themselves. If you were to ask my kids to list what they struggle with most, their lists would not line up with lists of “problems” spotted by most people who meet them. And my kids’ lists are the ones that matter most.
I take medicine for my neurodisabilities now, and I wouldn’t want to live without it. I manage it carefully with help from my doctor, whom I can talk to whenever I need to.
My kids, Eight and Ten, take medicine for their neurodisabilities, and, according to them—and I always ask them—their lives are better because of it. My kids can tell how their medicine affects them, just like six-year-old me could tell that my medicine was making me feel bad. We talk about their medicine constantly, and I respect their opinions. They understand what they’re taking and what it’s for. They know when it is and isn’t working right, and they tell me. We see their doctor frequently to ensure everything is well.
Most importantly, I’m not looking for a cure—not for them and not for me. No treatment of any kind is meant to make us to conform to the needs of an inflexible teacher or an inflexible world or some aggressive asshole at a party.
It’s not for anyone but us.
Any treatment we choose, be it medicine or therapy or whatever, is merely a tool to help us enjoy our lives. It’s okay that some foods weird us out, or that some clothes are itchy so we won’t wear them. It’s okay that we all wear headphones, often, to cancel out noise (I’m wearing mine as I write this, and my kids are wearing theirs in the other room). It’s okay that we interrupt each other a lot by accident, so we have to apologize and wait, and find waiting hard. It’s okay that we get really frustrated, and I mean really, really frustrated, when things don’t come easily at first. All of these differences are okay, even though so many other people think they aren’t.
I’m not looking for a cure—not for my kids, and not for me. Any treatment we choose is a tool to help us enjoy our lives.
As their parent, one of the most important things I can offer my kids is not a bogus cure or panacea, but my own experience. Experience helps me predict when things might be difficult for us, and it also helps me figure out how to make things a little easier.
Recently, our family was on vacation in Washington, DC. The four of us—my husband, Eight, Ten, and I—traveled by Metro around town, the train itself as exciting to my kids as the museums and monuments. One time we exited onto the platform and the tunnel suddenly grew loud and chaotic, because the train across from us let its passengers off at the same time.
Ten turned to me, eyes wide: It’s too much.
I pulled him close and raised his jacket hood, saying, “Cover your ears.”
Tucking his chin, he put his hands over his ears, and I kept my arm around him. Together, we walked toward the escalator. I held him close as we rode up, and by the time we reached the top, the crowd had dispersed.
He pulled his hands from his ears, looking up at me. “Thanks, Mom.”
Katie is an author, speaker, an expert on mental disability. She is autistic and has bipolar disorder. She's the author of more than fifteen books that center mental disability, an eclectic mix, including an IPPY-award-winning series of romantic suspense novels and four essay collections on mental health and trauma (two of which won national awards). After earning her master's from the Johns Hopkins Writing Seminars, she earned her law degree and doctorate in rhetoric. She works toward accessibility for everyone. A professor of writing, she lives in Chapel Hill, NC, with her family and horses.