'Underdiagnosed' Girls With Autism Struggle to Fit In

Jan. 23, 2008— -- At first glance, 8-year-old Kaede Sakai is a typical first grader. She's a smart student, and most of the time she is kind and cordial in class. But recess is an exercise in frustration for her because no matter how hard she tries to fit in, she just doesn't click with the other kids.

It's heartbreaking to see, especially for her mom.

"[She's] been very sad lately, because a lot of the kids have their play as a set group," said her mother, Kristi Sakai.

There's something about how Kaede approaches play that turns off a lot of kids. "She's inflexible and has difficulty engaging properly with other peers," said her mom. "She needs them to do things her way, period. And kids aren't able to do that."

And while Kaede might appear like nothing more than a little girl having a bad day, it takes someone who has seen a lot of autistic children to recognize that Kaede has autism.

Brenda Myles, one of the lead researchers specializing in the quite narrow field of girls with autism, said autism can be more difficult to detect in girls.

Difficulty of Diagnosis

"Almost all the research is on boys," said Myles. "Well, first of all there are more boys than girls with autism spectrum disorders, but second of all, girls are underdiagnosed."

For a while, the Sakais dealt with the consequences of this narrow field. Kristi Sakai sensed something was wrong when Kaede was very young, but she struggled with a diagnosis.

"I had a really hard time getting her diagnosed," she said. "The early intervention people would not recognize the things that I was seeing even though they were identical behaviors as the boys."

The Sakais also have two sons touched by autism. The family lives in a rural area of Oregon, not far from Eugene. It's the kind of place where everybody tends to watch out for everybody else. And in Kaede's family, that's important.

Kaede's brothers, Tom and Kito, have many issues, including an inability to give and take in conversation, and intolerance of various physical stimuli, like certain kinds of clothing.

"[Kito] would pull at the feet of his pajamas and scream until we would take them off," said Kristi Sakai.

The boys also have nearly uncontrollable fits of fury that can last for hours and be set off by being given the wrong shirt or because a familiar routine was changed at the last minute. The boys, however, were more easily diagnosed with autism.

The Need to Please

Kaede's autism was harder to detect. She exhibited some of the symptoms her brothers did, but she was able to control others, leading many to believe that she did not have autism.

"So she had the sensory issues," said her mom. "That was the first thing I noticed. But she wasn't having the big meltdowns though, which is what other people were saying: 'Well, she doesn't have what the boys have.'"

Kristi Sakai believes that those differences disguised her daughter's symptoms when she took Kaede to be evaluated.

"She wanted to please them, so whatever they asked her to do, she would throw her whole heart into it and do what the adults wanted," she said.

It is exactly this desire to please that Myles believes may explain how a girl with autism could fool the experts, so to speak.

"We overtly teach social skills to girls," Myles said. "They are told not to get angry, they are told to be nice, they are told to share -- all of those behaviors."

Myles believes these social skills are not as ingrained in boys as they are in girls. "It's more appropriate, if you will, for a boy to have a tantrum and major meltdown than a girl," Myles said.

When girls do melt down -- as Kaede does at home -- it's often dismissed as nothing serious, precisely because they are female. "People roll their eyes and say 'drama queen,' even me," said Kristi Sakai.

Some researchers and psychologists believe that symptoms of autism in girls might therefore be more mild, or more easily explained away as something else. In addition, girls are typically more developed in certain social and conversational skills, further masking possible indications of autism.

According to Shana Nichols, a psychologist at the Fay J. Lindner Center for Autism, a girl's autism might even pass unnoticed if a test for conversational ability is kept short enough.

"You might be able to engage in a back-and-forth conversation with a girl to a greater degree than with the boys," said Nichols. "In a one-to-one, five-minute conversation in passing, they could greet you and answer a couple of questions back and forth. But when you go beyond that, then you begin to see the hole or the gaps in her social understanding."

Girls Being Targeted

Nichols regularly holds an informal support group for teenage girls with autism, meeting with them in Bethpage, New York.

Many of the girls she sits down with can hold a conversation quite well and appear to have a sort of high-functioning autism. But all have stories about being picked on mercilessly because they were odd somehow -- literally disabled when it came to surviving the more sophisticated social complex of teenage female society.

Victoria Roma is a teenager who attends special education classes in New Jersey and intends to become a marine biologist. Roma has superb language skills and is highly motivated, but she has difficulty picking up subtle social skills and therefore struggles to fit in.

"It's a challenge for me to be aware of everything," explained Roma. "Am I flapping? Was that a joke I just heard? Should I be laughing? Should I not be laughing? Should I be serious at this time? Can I be a little silly at this time?"

Brenda Myles, the autism researcher, believes girls with autism might struggle to fit in with their peers even more than boys with autism, because of these missed social cues.

"There's no doubt that girls are being targeted," said Myles. "And because they don't understand those social cues, and in many cases they are not interested in those typical girl behaviors, they don't understand sarcasm, they are often left alone or targeted."

The Sakais don't want Kaede to be targeted or left alone, which is why she is getting lessons on how to make friends with a special education teacher she spends time with at school. While her teacher takes her diagnosis seriously and understands the challenges she faces, not everyone in her regular elementary school does.

"Nightline" recently followed Kaede around school and met a faculty member who was skeptical, suggesting that the children's challenges had to do with the way they were parented. Myles said that kind of reaction is "heartbreaking, and indicates a gross misunderstanding of autism spectrum disorders. And I'm not blaming that indiviudual staff member, but he or she doesn't understand."

Of course, autism is something none of us really understand. Even the determination of whether "girl autism" is different from "boy autism" is an unanswered question. But one that is worth asking.