Last summer, my parents celebrated their 33rd anniversary at Chef’s Restaurant in Buffalo, New York, with pasta doused in marinara sauce. Over a plastic gingham tablecloth, they quietly reaffirmed their commitment. Their relationship is remarkable and inspiring by any standard. But according to many in the autism world, including professionals who should know better, its endurance marks it as some sort of mythical unicorn, made all the more inspiring by the fact that it survived me.
I am autistic. An oft-repeated claim holds that 80 percent of marriages with an autistic child end in divorce. In a 2007 episode of one of the most-watched television shows in America at the time, Oprah Winfrey noted the supposed 80 percent divorce rate, citing a study from Autism Speaks. No such study exists, but that hasn’t stopped plenty of others from using the figure – or otherwise suggesting that autistic children pull families apart. NPR unquestioningly promoted former football player Rodney Peete’s claim of an 80 percent divorce rate on “Tell Me More” in 2010. Jenny McCarthy has said that her then-husband asked for a divorce the same week as her son’s autism diagnosis. A 2008 article in the Denver Post claimed an 85 percent divorce rate, disturbingly followed by a list of autistic children and adults who were killed by their parents, as if somehow their disability makes filicide understandable.
I’m not a monster. I didn’t slither out from my mother’s loins ready to wreak havoc upon all who had the misfortune to stand in my terrifying presence. I’m just a person with a relatively common disability. According to the most recent numbers from the Centers for Disease Control and Prevention, one in 59 children in America, or about 2 percent, are on the autism spectrum. Autism is a neurodevelopmental disability characterized by three core traits: difficulties in social communication, intense interests and repetitive behaviors. It is often accompanied by conditions like epilepsy, gastric distress, intellectual disability and mental illness.
I showed a precocious and incredible command of facts at a young age. In one of my earliest neuropsychiatric reports, the tester noted that at the age of 5, I had a remarkable knowledge of the difference between veins and arteries and how they worked. I did not have a remarkable knowledge of how to make and keep friends. Instead, I preferred the company of adults, who were, at least initially, impressed by my monologues on whatever interested me. I was the consummate little professor. I was also deeply unhappy. I was kicked out of a children’s choir because I moved too much. I pulled out my hair. My peers and teachers hated me. In one particularly memorable incident, my eighth-grade homeroom teacher suggested in front of my entire eighth grade class that perhaps if I didn’t talk so much, I’d have more friends. That same year, my math teacher pushed me into a swimming pool at an end of year celebration while I was fully clothed. The other children laughed, and the school later made the teacher apologize.
My parents, like all good parents, were concerned about me. They did their best. They thought perhaps I was unhappy because I was smarter than the other children or because they had done something wrong. They didn’t understand why I didn’t smile. They assumed I would grow out of it. Later, in high school and college, when I didn’t grow out of it, they tried therapy and medication. That didn’t work, either. We fought. At the time, it was commonly believed that Asperger syndrome was vanishingly rare in girls. I didn’t get an accurate diagnosis of why I was different from other people until I was well into my 20s.
I was not an easy child to raise. Despite that fact, my parents stayed together. Sometimes they argued, as all couples do, but never for a moment was I made to feel that it was my fault. In a 2012 survey from the Kennedy Krieger Institute at Johns Hopkins University of nearly 78,000 parents, 913 of whom had an autism diagnosis in the family, the divorce rate was no higher than among the general population. The divorce rate in the general population is still 40 percent to 50 percent,which isn’t low by any stretch of the imagination, but autism doesn’t make things worse. Few scientific questions are conclusively decided, but with a sample size that large, this question is about as settled as science gets.
Why does the narrative that autism destroys marriages persist? Last year, at the Autism at Work conference, an otherwise wonderful gathering of business leaders from across America, autism mom and pseudo-celebrity Holly Peete Robinson gave a presentation trotting out the claim that 80 percent of marriages with an autistic child end in divorce. It felt like being stabbed. At a conference ostensibly for lifting up autistic people and our hidden value, I was confronted with the accusation that my mere existence hurts my parents. That the mere existence of people like me destroys marriages and turns love into ash. After her presentation, I confronted her at the front of the roomwith the data. Her response? The 80 percent number “felt real.” Feelings aren’t facts. (Robinson’s representatives declined to respond to a request for comment from The Washington Post.)
Another ugly claim that rears its head in autism circles is that mothers with autistic children experience trauma on par with the post-traumatic stress disorder experienced by combat veterans. There are no facts to back up this claim, but it is, at least, inspired by an actual study from 2010, which found that mothers of autistic children were more likely to show “a blunted cortisol response.” The study irresponsibly notes that the same is true for combat veterans and Holocaust survivors but does not compare precise cortisol levels with those populations.
For some reason, the same kinds of numbers don’t exist for parents of children with other neurodevelopmental disabilities, even if those children exhibit behaviors that are similar or even identical to those associated with autism. A 2014 study on parents of children with Down syndromeindicated that maternal stress was largely a function of whether mothers had a positive outlook about their children’s futures and even suggested that children with Down syndrome benefit from their parents’ positive ideas about the disorder. More recently, research from 2017 seems to indicate that the same is true for parents of autistic children. These studies all have small sample sizes, so it is difficult to reach real conclusions, but it seems likely that when autistic children do lead to familial stress, it’s because parents believe that they’ll be stressful.
In other words, negative ideas about autism — not anything inherent to autism itself — lead to negative family outcomes. We are destructive and ruinous because we are expected to be. If expectations change, so does the stress our parents feel regarding our existence. The parents of autistic children could have happier lives just by letting go of toxic myths, or never letting those myths into their lives at all.
This year, I celebrated my third anniversary with my boyfriend. I hope our relationship lasts to our 33rd anniversary and beyond. I aspire to the kind of unconditional love and partnership my parents have. I learned it from them. Their relationship isn’t an anomaly or a superhuman accomplishment. I’m not a villain or a monster. We’re all just people, and we’re doing our best.
Sara Luterman is a freelance writer and consultant. She wrote this column for the Washington Post.