The following is an excerpt from “Invisible Women: Data Bias in a World Designed for Men,” written by Caroline Criado Perez. The book, released last week, explores the gender bias and discrimination baked into our systems — from education to the workplace — stemming from men being treated as the default and women as atypical.
In this excerpt, we learn about how gender biases in the medical world have long disadvantaged women, from diagnosis to treatment.
Failing to account for female socialization can lead to women living for decades with undiagnosed behavioral disorders. For years, we have thought that autism is four times more common in boys than in girls, and that when girls have it, they are more seriously affected. But new research suggests that in fact female socialization may help girls mask their symptoms better than boys and that there are far more girls living with autism than we previously realized.
This historical failure is partly a result of the criteria for diagnosing autism having been based on data “derived almost entirely” from studies of boys, with a 2016 Maltese study concluding that a significant cause of misdiagnosis in girls was “a general male-bias in diagnostic methods and clinical expectations.” There is also emerging evidence that some girls with anorexia may in fact be suffering from autism, but because it’s not a typical male symptom it’s been missed. Sarah Wild, head of Limpsfield Grange, the United Kingdom’s only state-funded residential school for girls with special needs, told the Guardian that “the diagnostic checklists and tests have been developed for boys and men, while girls and women present completely differently.” Meanwhile, a recently published draft of Britain’s National Health Service guidance on autism made no mention of women’s differing needs.
There are similar diagnostic problems when it comes to attention deficit hyperactivity disorder and Asperger’s. A 2012 survey by the U.K.’s National Autistic Society found that just 8 percent of girls with Asperger’s syndrome were diagnosed before the age of 6, compared with 25 percent of boys; by the age of 11, the figures were 21 percent and 52 percent, respectively. Up to three-quarters of girls with ADHD are estimated to be undiagnosed — a gap which Dr. Ellen Littman, the author of “Understanding Girls with ADHD,” puts down to the early clinical studies of ADHD having been done on “really hyperactive young white boys.” Girls tend to present less as hyperactive and more as disorganized, scattered and introverted.
More broadly, researchers suggest that because women are socialized to “take turns in conversation, to downplay their own status, and to demonstrate behaviors that communicate more accessibility and friendliness,” the traditional medical interview model may be unsuccessful in getting the information from women that is needed to diagnose them effectively. But sometimes — often — women are providing the information. It’s just that they aren’t being believed.
ThinkProgress reported the story of Kathy, whose heavy periods left her feeling so faint she couldn’t stand. But when it came to getting a diagnosis, Kathy faced a problem. Four different medical professionals thought it was in her head, that “she was simply struggling with anxiety and perhaps even had a serious mental health disorder.”
But they weren’t in her imagination. In fact, Kathy turned out to have “potentially life-threatening uterine fibroids that required surgical intervention,” something that was only discovered after she demanded an ultrasound. She wasn’t anxious (although, after nine months of being told she was crazy, who could blame her if she was), she was anemic.
Rachael was also told she was imagining it. She had been trying to manage her severe pain and heavy periods with the pill for 10 years by the time she collapsed at a gig. The hospital sent her home with painkillers and a diagnosis of stress. The next time she collapsed the hospital put her in the gastroenterology ward. “Six nights I was there, on a drip. There was a woman dying of bowel cancer in the bed opposite me. It was horrible.” The doctors suspected kidney stones, so they ran multiple tests around her urinary system. They all came back negative. So did her blood tests. And the more tests that came back negative, the more Rachael sensed a shift in how she was being treated.
Eventually a consultant shook his head as Rachael told him how much she hurt and told her, “We have to send you home. There’s nothing wrong with you.”
But there was something wrong with her. Rachael was eventually diagnosed with endometriosis, a disease where womb tissue grows elsewhere in the body, causing extreme pain and sometimes infertility. It takes an average of eight years to diagnose in the U.K., an average of 10 years to diagnose in the United States, and there is currently no cure. And although the disease is thought to affect one in 10 women (176 million worldwide), it took until 2017 for England’s National Institute for Health and Care Excellence to release its first-ever guidance to doctors for dealing with it.
This may be easier said than done, because failing to listen to female expressions of pain runs deep, and it starts early. A 2016 study from the University of Sussex played a series of cries to parents (25 fathers and 27 mothers) of 3-month-old babies. They found that although babies’ cries aren’t differentiated by sex (sex-based pitch differences don’t occur until puberty), lower cries were perceived as male and higher cries perceived as female. They also found that when male parents were told that a lower-pitched cry belonged to a boy, they rated the baby as in more discomfort than when the cry was labeled female.
Instead of believing women when they say they’re in pain, we tend to label them as mad. And who can blame us? Women are hysterical (hystera is the Greek word for womb), crazy (if I had a pound for every time a man questioned my sanity in response to my saying anything vaguely feminist on Twitter, I would be able to give up work for life), irrational and over-emotional. The trope of the “crazy ex-girlfriend” is so common it’s been satirized by Taylor Swift in her hit song “Blank Space” and by Rachel Bloom in a whole Netflix series about a crazy ex-girlfriend. Women are a “mystery,” explained renowned physicist Stephen Hawking, while Freud, who got rich and famous off his diagnoses of female hysteria, explained in a 1933 lecture that, “Throughout history, people have knocked their heads against the riddle of femininity.”
The intransigence of this feminine riddle has not gone unpunished. Women who had often done little more than manifest behaviors that were out of feminine bounds (such as having a libido) were incarcerated for years in asylums. They were given hysterectomies and clitoridectomies. Women were locked up for having even mild post-natal depression: The grandmother of a friend of mine spent her life in an asylum after throwing a scourer at her mother-in-law. At least one U.S. psychiatric textbook, still widely in use during the 1970s, recommended lobotomies for women in abusive relationships.
Of course, we’ve moved on from such inhumane treatment of women. We no longer lock women up and cut out parts of their brains. Instead, we give women drugs: Women are two and a half times more likely to be on antidepressants than men. This is not to condemn antidepressants: They can be life-changing for people with mental health problems. However, it’s still worth asking why women are so much more likely to be on them, because it’s not simply that women are more likely to seek help. A 2017 Swedish study in fact found that it was men who were more likely to report depression. So why are more women being treated with antidepressants? Are women simply more “feeble-minded”?
Freud once believed that hysteria might be linked to historic sexual abuse. He later retracted this theory as it would have implicated too many men to be, in his opinion, credible. But recent research suggests that abuse might be linked to certain types of pain women experience — and in the wake of the #MeToo global scandal, maybe it’s not so incredible after all.
Data Bias in a World Designed for Men
By Caroline Criado Perez
Abrams Press. 272 pp. $27