Many more boys than girls are diagnosed on the autism spectrum: more than four boys for every autistic girl, according to the latest numbers from the Centers for Disease Control. Researchers point to genetic differences. But clinicians and researchers have also come to realize that many “higher functioning” autistic girls are simply missed. They’ve been termed the “lost girls” or “hiding in plain sight” because they’re overlooked or diagnosed late. They don’t fit the stereotypes or their symptoms are misinterpreted as something else. And they may be better at hiding the signs, at least when they’re young.
Even when girls’ presentation is clearer, they can be overlooked. Take Melissa’s two children. Both have an autism diagnosis. But while daughter Lisa’s symptoms were much more obvious than son Justin’s, the girl’s were waved off for three years by a variety of clinicians.
“On paper,” Melissa says, “she seemed to check all the boxes.” Lisa had a significant language delay — she didn’t speak in sentences until she was 4 — did no pretend play, and had several meltdowns each day. There were also other signs, like lining up her stuffed animals, spinning in circles, and constantly seeking sensory input. She was also unable to handle any change in routine.
Though Lisa’s challenges qualified her for Early Intervention at 18 months, it wasn’t until she was 6 that a developmental neurologist would diagnose her with autism.
Melissa’s son was also diagnosed at 6 — but by the first clinician who saw him, despite the fact that his symptoms were far less obvious.
“The developmental pediatrician who saw Lisa didn’t believe autism was common in girls. He came up with excuses for her behavior and reasons why she couldn’t be on the spectrum,” Melissa says. “At one point, we were even told that my daughter just had low self-esteem and that’s why she didn’t speak. And, of course, that her issues were just a parenting problem. We were never told those things about our son.”
Autistic girls don’t fit the “model”
Autism is a developmental disorder that is marked by two unusual kinds of behaviors: deficits in communication and social skills, and restricted or repetitive behaviors. Children with autism also often have sensory processing issues. But here’s the hitch, according to Susan F. Epstein, PhD, a clinical neuropsychologist. “The model that we have for a classic autism diagnosis has really turned out to be a male model. That’s not to say that girls don’t ever fit it, but girls tend to have a quieter presentation, with not necessarily as much of the repetitive and restricted behavior, or it shows up in a different way.”
Stereotypes may get in the way of recognition. “So where the boys are looking at train schedules, girls might have excessive interest in horses or unicorns, which is not unexpected for girls,” Dr. Epstein notes. “But the level of the interest might be missed and the level of oddity can be a little more damped down. It’s not quite as obvious to an untrained eye.” She adds that as the spectrum has grown, it’s gotten harder to diagnose less-affected boys as well.
In fact, according to a 2005 study at Stanford University, autistic girls exhibit less repetitive and restricted behavior than boys do. The study also found brain differences between autistic boys and girls help explain this discrepancy.
Wendy Moyal, MD, a child and adolescent psychiatrist at the Child Mind Institute, adds that girls are more likely to control their behavior in public, so teachers don’t catch differences. “A lot of autistic girls get ruled out because they may share a smile or may have a bit better eye contact or they’re more socially motivated. It can be a more subtle presentation,” Dr. Moyal explains. If girls are socially interested but odd, which is the case with the majority of these girls, she adds, “I think people give them a pass.”
Another problem: misdiagnoses
Dr. Epstein says there’s another reason autistic girls are misdiagnosed, or diagnosed later than boys. Girls struggling with undiagnosed autism often develop depression, anxiety or poor self-esteem, and clinicians may not “really dig underneath to see the social dysfunction” caused by autism.
Dr. Moyal adds that these girls can also be misdiagnosed with ADHD. “I see a lot of girls who are diagnosed with ADHD when they’re young who actually meet the criteria for autism,” she says. “There’s hyperactivity without as much social impairment or a different kind of social impairment, so the autism is missed.”
Autistic girls “pass”… at least for a while
Another reason girls may not be diagnosed is because they’re able to “pass.”
“Girls tend to get by,” Dr. Epstein says. “They might not understand what’s going on but they’ll try to just go along and imitate what they see. And they may get away with it to third grade or fifth grade, but once they get to junior high and high school, it shows as a problem.”
This has been the case for Lisa, now 13. Melissa says of her daughter, “She is less mature than her typical peers, and girls are so intricate in how they behave socially. It’s very difficult for her to maintain friendships because of this and, let me tell you, 13-year-old girls are not very accepting of someone different.”
The cost of a missed diagnosis
Dr. Epstein says undiagnosed autistic girls end up wondering “what’s wrong” with them, which can lead to depression, anxiety and loss of self-esteem. They work so hard to fit in that it wears them out. “That’s the thing about imitating,” she says. “You don’t necessarily ‘get’ it so you’re just trying to do what people do. If you’re just trying to mimic and you don’t really understand, it makes it pretty rough.”
Dr. Moyal says less severe autism in girls is often first flagged because of these social issues, or the depression they generate. “In people we call mildly autistic, there are adolescent social problems or they’re seeming hyperfocused on a topic and not participating in school to their potential or abilities,” she says. “Depression can be more common among high-functioning kids on the spectrum. So they’ll come in for something like depression or poor school performance. Then it becomes more clear to me that they have a restricted interest and social communication issues.”
Another cost of being overlook is missing out on early support for skill-building. “We talk about early intervention,” Dr. Epstein says. “When the girls are identified late, they’ve missed out on a lot of social interventions that are much harder later. That’s the danger for anybody who gets a late diagnosis.”
Dr. Moyal concurs, adding that they’ve missed opportunities to get the proper support in school as well as socially: “Academically, it’s harder for them to focus on topics that are not of interest. That’s true for people who have ADHD and even to a greater degree for kids who are on the autism spectrum.”
Safety risks for autistic girls
Autistic girls may be bullied simply because they’re “different.” Also, Dr. Epstein says, because these girls miss social cues and want to be liked, their autism can leave them more naïve. This makes them easy prey for someone trying to take advantage of them, be it a bully or a sexual predator. “The girls may be wanting the interaction but not understanding what it’s about, what the cues are,” Dr. Epstein says. “It can be very easy for them to follow their hormones without an understanding of what the dangers are. And sometimes even if they have been taught, they need ongoing support to be able to maintain safety.”
Melissa says this has been true with Lisa. “I’ve had to think about female issues at a much earlier age than I expected,” she says. “We’ve already had an incident of her being inappropriately touched by a boy, for whom the excuse was made that because he’s also disabled, he ‘didn’t understand what he was doing was wrong.’”
One of her daughter’s greatest strengths is how accepting she is of others, Melissa adds. “She always finds the good in people, even when they are mean to her,” she says. “But because she is so accepting and kind, others can easily take advantage of her, or bully her, and she won’t say anything.”
Dr. Moyal notes that there’s an area of study that’s rethinking how to help girls on the spectrum: “There’s expanding research on how boys and girls present differently and how our treatments may need to be specified a bit more for a girl’s presentation vs. a boy’s presentation.”
But first the girls need to be identified — and accepted. This will require more awareness and sensitivity on the part of parents, teachers and clinicians.