Invisible Girls Is autism being overlooked in girls because the signs are much clearer in boys? A growing body of research says yes. Features
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Features  |   April 01, 2018
Invisible Girls
Author Notes
  • Nancy Volkers is a freelance medical writer based in Vermont. nvolkers@nasw.org
    Nancy Volkers is a freelance medical writer based in Vermont. nvolkers@nasw.org×
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Special Populations / Autism Spectrum / Features
Features   |   April 01, 2018
Invisible Girls
The ASHA Leader, April 2018, Vol. 23, 48-55. doi:10.1044/leader.FTR1.23042018.48
The ASHA Leader, April 2018, Vol. 23, 48-55. doi:10.1044/leader.FTR1.23042018.48
A few years ago, when the Centers for Disease Control and Prevention released the latest prevalence numbers for autism spectrum disorder (ASD), “1 in 68” made headlines across the country. The prevalence had increased dramatically in only a couple of decades; in 2000, it was 1 in 150.
What didn’t make the news: Autism is more common in boys.
But then, that wasn’t news; it’s well-known that many neurodevelopmental disorders—including ASD, attention deficit disorder, dyslexia, fluency disorder, speech sound disorder, and specific language impairment—are more common in boys. In ASD, the overall male to female ratio is about 4:1. Among those with an additional intellectual disability, the ratio drops to 2:1. And among high-functioning children, the ratio is 9:1.
What’s becoming increasingly apparent to some autism researchers and practitioners, though, is that some higher-functioning girls with ASD are going undiagnosed. Teachers and parents may overlook them. The standard diagnostic tools may not catch them. And if they are referred for assessment, clinicians may count out an ASD diagnosis.
Why? In brief, it doesn’t look the same in girls.
“I think we can say, based on studies, that autism manifests differently in girls than it does in boys,” says Diane Paul, ASHA’s director of clinical issues.
Indeed, a growing body of research suggests that, at least among those without intellectual impairment, females with ASD differ from the classic presentation outlined in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5). Compared with boys, these girls:

“Females are the orphans of the autism world.”

The current ASD diagnostic tools and assessments were normed largely on boys, so they won’t identify some girls. And because ASD is thought of occurring only in boys, girls may be overlooked or misdiagnosed with other conditions. And, experts observe, because these girls are typically more socially motivated than boys, they may try harder to fit in, often hiding the very behaviors that could help in diagnosis.
“Some studies are finding that the girls try very hard to camouflage the social problem—they remember scripts, or pay a lot of attention to what other girls are doing—and then they have these strong internalized symptoms of anxiety and depression,” explains Paul. As a result, many girls may be diagnosed with other conditions, such as anxiety disorders, eating disorders or ADHD.
Some are never diagnosed. Others are diagnosed as teenagers or adults. Along the way, their academic lives, relationships and career paths can be affected. They may be misdiagnosed with other conditions, put on inappropriate medication and even institutionalized. Most are bullied, and some fall victim to abusive relationships. They struggle with anxiety, self-harming behavior and eating disorders. In some extreme cases, they commit suicide.
“Females are the orphans of the autism world,” says Ami Klin, director of the Marcus Autism Center and professor and chief of the Division of Autism and Related Disorders in the Department of Pediatrics at Emory University School of Medicine.

“Some studies are finding that the girls try very hard to camouflage the social problem—they remember scripts, or pay a lot of attention to what other girls are doing—and then they have these strong internalized symptoms of anxiety and depression.”

Restrictive interests? Not so much
The biases that keep girls from being diagnosed may be built into the very diagnostic instruments themselves. A study presented at the 2017 International Meeting for Autism Research found that the Autism Diagnostic Observation Schedule (ADOS), a widely used diagnostic test for autism, is more likely to miss girls than boys. The study—of 396 boys and 85 girls, all with ASD and higher intelligence scores—found that 15 percent of the girls scored “too low” on its measures of restricted interests and repetitive behaviors, compared with just 6 percent of boys.
Clinicians are beginning to understand this difference, says Nicole Kreiser, assistant professor and clinical psychologist at Eastern Virginia Medical School. She says that, unlike the unusual obsessions of boys with ASD, girls often have more age-appropriate interests, such as dolls, horses or princesses. It’s not so much what these girls are interested in as how they play, Kreiser says.
“[The play of a girl with ASD] is not really pretend play,” she says. “It’s a lot more repetitive. These girls might appear to play with dolls, but they do it by sorting all the dolls’ clothing or shoes by color. Or they set up the same theme with the dolls every time, and the dolls say the same things every time.”
Also, Kreiser notes, intensity and resistance to change may be obvious. “How difficult is it to get her to transition to doing something else?” she asks. “Would she play like this all day if you let her?”

Because high-functioning females with ASD want to fit in and be accepted, but don’t understand social cues or complex behavior like flirting, they may find themselves in dangerous situations.

The great pretenders
Another factor leading to lower ASD diagnosis rates in girls could be that they mask their own less socially desirable behaviors, some posit. “The social pressures that girls face in behavior are strict, and people start enforcing them earlier than in boys,” said Zoe Gross, director of operations at the Autistic Self Advocacy Network.
And girls with ASD tend not to disregard these social pressures; instead, they care about them. They try to act appropriately and “be good.” This masking behavior can make diagnosis difficult.
For example, a 2016 study of playground behavior published in the Journal of Child Psychology and Psychiatry found that while boys with ASD are often outright rejected by their peers, girls are neither rejected nor accepted. So on the surface, it might look as if a girl with ASD is playing with other girls on the playground. Take a closer look, however, and you’ll see that while she’s playing near them, she’s not playing with them. She’s most likely playing by herself, or observing other girls to try to understand how to act.
Such “social camouflaging” may be more widespread than previously thought. A 2015 study of adults with ASD found that most of them—whether female, male or nonbinary—said they camouflaged their behavior in social situations. “Previous research has assumed that it was only women and girls who camouflaged,” says first author Laura Hull, a PhD candidate at University College London who works with pioneering autism researcher Simon Baron Cohen, among others. “These participants camouflaged because they wanted to fit in with others and form social relationships.”
To try to fit in, girls may choose a socially successful girl and mimic her behavior, as well as her dress and hairstyle. And they may suppress their impulses to spin in circles or talk for 20 minutes about “My Little Pony”—because they’ve been bullied for similar behavior, or been admonished by a teacher or authority figure.
The camouflaging likely won’t stop just for an ASD evaluation, so clinicians must be aware of the possibility, says Gross of the Autistic Self Advocacy Network.
Klin agrees, noting that one-on-one with an evaluator, a girl might seem fine—but that doesn’t mean that she is. “If girls present in a clinical situation with some form of social competency, we would probably not see them as having autism,” he said.
In a qualitative study of women diagnosed as adults, published in the Journal of Autism and Developmental Disorders, most participants said that their attempts to “be normal” and fit in had backfired: They were so good at pretending that no one believed they needed help. As girls, they were told that they were “too social” or “not good at math,” so they couldn’t have ASD.
The constant monitoring and masking of behavior take a toll. In Hull’s study, most participants reported that camouflaging was mentally, physically and emotionally draining. Many needed time to recover. In an as-yet undiagnosed girl, this exhaustion is a sign, says Gross. “You might see a girl who comes home from school and sleeps for two hours. [Camouflaging] is a level of self-regulation that most adults don’t experience, and it’s very tiring.”
The perils of internalizing
While many boys with ASD tend to act out or have tantrums, girls with ASD are more likely to internalize their feelings and are often shy or quiet, says Kreiser (see a 2012 study in the Journal of Autism and Developmental Disorders). And a shy, quiet, intelligent student is a teacher’s dream—not a student to refer for an evaluation.
The quiet and shyness, notes Kreiser, mask thoughts such as: “I don’t know how to have a conversation. I don’t know how to read other people’s social cues.” And the internalizing can lead to anxiety and depression.
“There was this historical perception that people with autism were not socially motivated,” says Kreiser. “Some of my [ASD] patients are socially motivated but don’t know how to interact, and social interaction is unpredictable for them—anxiety is a natural consequence.”
Addressing the anxiety with social skills training can help—but not without the understanding that the anxiety is linked with ASD.

Some girls are never diagnosed. Others are diagnosed as teenagers or adults. Along the way, their academic lives, relationships and career paths can be affected.

Lost girls
Some girls are not diagnosed at all. Others are misdiagnosed with other conditions, such as obsessive compulsive disorder, anxiety disorder, depression and bipolar disorder. They’re prescribed medications, given treatments and sometimes even institutionalized. And some are eventually diagnosed in adulthood (see interview with Liane Holliday Willey, below).
Bullying and sexual assault are common dangers. Because high-functioning females with ASD want to fit in and be accepted—but don’t understand social cues or complex behavior like flirting—they may find themselves in dangerous situations. In a 2016 study, 64 percent of women had been sexually abused, most of them within a relationship. Some said that when it came to sex, they didn’t realize they could say no. Others didn’t know how to end the relationship.
“If we’re missing girls who have a social disability that impacts their ability to manage everyday life, we’re doing them a huge disservice,” says Klin.
Kreiser agrees. She recently received referrals for several teenage girls. “They all have a history of language delay, very focused interests and excessive shyness, but they’re only getting referred to me now,” she said. “Imagine what we could have done for them if they’d been diagnosed early.”
Diagnosing Autism in Girls: Suggestions For Clinicians

When your team is considering various diagnoses, don’t exclude ASD because there’s a girl in front of you. Be aware of any bias you may hold, advises Ami Klin, director of the Marcus Autism Center at Emory University School of Medicine.

Use the DSM-5 criteria as a guide, not a hard-and-fast requirement.

Don’t expect girls with ASD to behave like boys. Klin and other experts advise teams to look for:

  • More age-appropriate intense interests.

  • “Pretend play” that is actually repetitive or strict.

  • Possibly at-age or above-age language use, but perhaps echolalia or differences in receptive/expressive language.

  • Less obvious self-stimulation behavior, as the girl may have replaced her natural self-stimulation with something more socially acceptable.

  • Exhaustion after social stimulation (school, playgroups).

  • “Jekyll & Hyde” behavior—following rules at school and being the “ideal student,” then coming home and melting down or having tantrums.

  • Sensory issues—intolerance of crowds or of certain sounds or textures, for example.

  • Difficulty with conversation skills and social engagement—turn-taking, staying on topic, initiating and contributing to the conversation.

Liane Holliday Willey: An ASD Diagnosis at 35

As a child, Liane Holliday Willey had received several diagnoses, including obsessive compulsive disorder (OCD) and anxiety, but psychotherapy and medications had not helped her.

Concerned by her 5-year-old daughter’s “quirky” behavior (among other things, the girl was obsessed with monkeys), Willey had her daughter evaluated. During the appointment, the clinical team encouraged Willey to seek a diagnosis for herself, too.

She was diagnosed with Asperger syndrome at the age of 35.

Willey has since focused on females with high-functioning autism and communication skills for people on the autism spectrum. She is the author of several books, including “Pretending to be Normal: Living with Asperger’s Syndrome” and “Safety Skills for Asperger Women: How to Save a Perfectly Good Female Life.”

You were diagnosed in your 30s. What might have been different if you had been diagnosed at age 4 or 5?

Early intervention is essential for long-term wellness, no matter what the challenge one might face. In my case, an early diagnosis with Asperger syndrome would have helped me overcome my self-doubt, insecurities and worries that I was not as clever or smart as other girls. It would have helped my teachers and caregivers help me with everything from academic and cultural comprehension to understanding those ever-important social skills. At my worst, I experienced rape and self-injurious behaviors. I imagine I never would have hit my worst had I understood the world better. Early diagnosis would have set me up to have a much safer and better-understood upbringing.

What do you most want speech-language pathologists to know about girls with high-functioning autism?

Literal thinking and confusion with figures of speech and jokes, and even the mechanics of speech, make it difficult for us to fully comprehend other people’s intent, the main idea, and the most important details of any event. Helping us to understand the nuances and obvious issues related to language should probably come before we are given a social skills program. Language learning should at least come at the same time and with more intensity than social skills, because if we don’t understand all the bits and pieces of the language used to explain things, how could we understand the language used to explain social skills?

I’d also like them to understand that as wonderful as Socratic instruction can be, didactic instruction is typically a more effective teaching strategy for people with autism. Language modeling techniques are wonderful! Please use them as often as possible.

—Nancy Volkers

1 Comment
April 9, 2018
Susan DeVito
See the campaign from The National Autistic Society
Check out the campaign by The National Autistic Society that addresses this issue. @Autism @Hannahmomi #doilookautisticyet
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April 2018
Volume 23, Issue 4