How women and girls with ADHD are given short shrift with treatment, other forms of help

The Washington Post

By Katherine Ellison

May 19, 2020

After a lifetime of arriving late, missing deadlines and having friends call her a ditz, Leslie Crawford wanted to know whether her chronic distraction meant she had attention-deficit/hyperactivity disorder, ADHD. And, if that were true, could medication help?

Over three visits with her managed-care plan doctor at Kaiser-Permanente in San Francisco, Crawford, 57, a busy mother of two and professional editor, complied with urine and blood tests some doctors require to rule out drug abuse, and was checked for any preexisting heart condition that might make stimulants too risky.

Then came the last step: a telephone interview.

“What kind of student were you in elementary school?” she remembers the psychiatrist asking.

“I was an A student,” Crawford answered.

“I’m sorry,” he said, as Crawford recalled. “You don’t meet the qualification for ADHD and we can’t give you medication.”

“I couldn’t believe it,” Crawford said later. Two private therapists had already told her she had ADHD, she said. But her plan’s psychiatrist said it was company policy to deny diagnosis and medication if a patient had done well in school as a child.

This left Crawford with the option of paying several hundred dollars for a private psychiatrist’s evaluation, plus recurring costs for new prescriptions over time. For now, she’s not pursuing that. After her three appointments, “I just felt exhausted,” she said.

ADHD affects more than 16 million U.S. children and adults. Despite decades of research involving thousands of studies, it remains one of the most perplexing of mental health diagnoses, susceptible to confusion and controversy even among doctors who treat it. The muddle can be particularly damaging to girls and women, who like Crawford may miss early treatment that could have spared them years of shame, anxiety, depression, self-harm and even suicide attempts.

“Women with ADHD are consistently underrecognized, understudied, misunderstood, misdiagnosed and mistreated,” said Ellen Littman, a clinical psychologist in Mount Kisco, N.Y., and a co-author of “Understanding Girls With ADHD: How They Feel and Why They Do What They Do.”

For Littman, Crawford’s story is distressing but not surprising; she said her practice is full of women with ADHD who were ignored for years for not fitting the conventional male profile.

Stephen Faraone, a leading ADHD researcher at SUNY Upstate Medical University, said many physicians mistakenly deny ADHD treatment to patients with a good academic track record, but that he didn’t know to what extent this might be formal policy among health insurers.

Representatives for two other managed health-care plans, Aetna and UnitedHealth Group, said they had no such policy. In response to questions about Crawford’s case, a Kaiser spokeswoman emailed a statement that didn’t address the specifics but concluded: “Our priority is to tailor the clinical evidence we have to an individual patient’s needs in order to support his or her well-being.”

Crawford complained in writing to Kaiser last August and received a letter back saying that she would receive refunds for her co-pays for the required lab and heart tests. The letter added that the director of the psychiatry department apologized “for any inconvenience you may have experienced.”

The situation may be even worse for African American girls. In March, federal researchers reported that black children are more likely than whites to be diagnosed with ADHD and other learning disabilities. Previous studies had found the diagnosis more likely in white children, suggesting that black children — both boys and girls — had been overlooked.

Growing up in Morristown, Tenn., podcast entrepreneur Katina Kyle, diagnosed with ADHD at 42, said: “I always knew something wasn’t right. It got frustrating for my mother: I’d be sitting in the same room with her and she’d have to yell to get my attention.”

Kyle, like many other women in her situation, said her diagnosis came as “an enormous relief,” providing her with “a starting place to figure out how to manage my life.”

Throughout the United States, back when Kyle was still in grade school, up to nine times as many boys as girls were diagnosed. Some experts didn’t even believe girls could have the disorder. Littman became an ADHD activist in the 1990s, after hearing a conference keynote speaker refer to girls as “ADHD wannabes.”

Today, about 2.5 boys are diagnosed for every girl, said Stephen Hinshaw, a psychologist at the University of California at San Francisco and an author and a leading expert on ADHD. Yet as adults, he said, nearly equal numbers of women as men have been seeking diagnosis and treatment.

Many girls don’t get the help they need because teachers and doctors still assume that ADHD must include hyperactivity, a common but not omnipresent symptom, Hinshaw said. It’s therefore easy to spot young boys who have it: They’re the ones standing on their desks or throwing pencils at each other. But girls with ADHD are often less active: sitting still, lost in their thoughts.

A further complication is that girls, compared with boys, are still more strongly conditioned from an early age to play nice and get along. Girls more often blame themselves when things go wrong, Hinshaw said, while boys more often take their troubles out on others.

“Every woman diagnosed as an adult has a trail of tears behind her,” said Littman, the New York psychologist.

Kyle said she nearly got divorced after she arrived late to pick up her wife from surgery because she had gotten distracted by playing a shoot-’em-up video game with her 12-year-old son.

“Sometimes, when I’m involved in something, it’s like that feeling when you put your hand up to a vacuum and it sucks it up,” she said. “I can’t tear away from something if I’m interested. We’ve lost at least five coffee pots after I let them burn on the stove.”

Crawford said she spent years being teased by friends and family. An aunt nicknamed her la vague. One relative joked that no one would ever know if she got Alzheimer’s. “It’s funny but it’s also hurtful,” she said.

Like Kyle, Crawford said she didn’t suspect she might have a mental disorder until late adulthood. Then a therapist she was seeing said out of the blue: “Leslie, you have ADHD and this is how people with ADHD behave.”

There’s a lot of debate about whether U.S. children are being over-diagnosed and overmedicated. But Hinshaw, Littman and others say more attention should be paid to the harm that comes from undertreatment, with or without medication.

In 1997, Hinshaw launched the Berkeley Girls with ADHD Longitudinal Study, a federally funded project, and since then has kept track of 140 girls with ADHD and a control group of 88 girls without the disorder. Among other things, his team’s research has found that girls are more likely than boys with ADHD or other girls to self-harm, such as cutting and burning themselves, and to attempt suicide. They are also likelier to become involved with violent partners, and have strikingly high rates of unplanned pregnancies — about four times as many as girls without ADHD.

Even for girls who grow up without drastic injuries or harm, ADHD can destroy self-confidence, after repeated fender benders, professional mistakes and ruined friendships. A particularly frustrating aspect for those with the disorder, experts say, is that they know what they should do but often still can’t seem to do it.

“It’s not like I’m looking for excuses, but I wish someone could have just told me this decades ago,” Crawford said. “Earlier in my life, I would have loved to have figured out some coping methods, which I’m finally doing now.”

Littman said Crawford’s health plan should have served her better. ADHD diagnoses are based on guidelines in the American Psychiatric Association’s Diagnostic and Statistical Manual, Fifth Edition (DSM-5), which among other things says symptoms should be present before age 12. But many girls with ADHD nonetheless do well in grade school, Littman pointed out.

“Doctors need to accept that it’s their responsibility to educate themselves about something that is quietly becoming a public health crisis,” she said.

Ideally, she added, women should seek out doctors with expertise in female ADHD. Yet she acknowledged such expertise remains rare, and that she had a long waiting list of prospective patients.

While still lacking a formal diagnosis, Crawford said she had been reading up on ADHD and trying to appreciate what many experts believe can be a bright side of the disorder. Perhaps ADHD has been a source of creativity as well as suffering, she mused.

Could it explain why she founded a theater company when she was just 14? Or why she later was inspired to quit her editing job and, with her husband, launch an indoor, mini-golf course and restaurant called Urban Putt?

Having that four-letter label can help women understand themselves better, identifying strengths as well as weaknesses, say experts. Kyle, the podcast entrepreneur, said she’s now grateful for her ADHD, which she believes fuels her energy at work. And Crawford said she has also reached a truce with her previously shaky self-esteem.

“I like myself now, finally,” she said. “And I even get to places on time. Well, most of the time.”