Behavioral and preliminary neuroimaging findings suggest autism manifests differently in girls. Notably, females with autism may be closer to typically developing males in their social abilities than typical girls or boys with autism. Girls with autism may be harder to diagnose for several reasons, including criteria developed specifically around males and overlapping diagnoses such as obsessive-compulsive disorder or anorexia. When Frances was an infant, she was late to babble, walk and talk.
She was three before she would respond to her own name. Although there were hints that something was unusual about her development, the last thing her parents suspected was autism. But even he did not recognize the condition in his daughter, who was finally diagnosed at about five years of age.
Today Frances is a slender, lightly freckled year-old with her dad's warm brown eyes. Like many girls her age, she is shy but also has strong opinions about what she does and does not want. Their mom, Page, can recall how different the diagnostic process was for her two children. With Lowell, it was a snap. With Frances, she says, they went from doctor to doctor and were told to simply watch and wait—or that there were various physical reasons for her delays, such as not being able to see well because of an eye condition called strabismus that would require surgical treatment at 20 months.
These criteria, Pelphrey and other researchers believe, may be missing many girls and adult women because their symptoms look different. Historically the disorder, now estimated to affect one out of every 68 children in the U. Experts also believed that girls with autism were, on average, more seriously affected—with more severe symptoms, such as intellectual disability.
Newer research suggests that both these ideas may be wrong. Many girls may, like Frances, be diagnosed late because autism can have different symptoms in females. As scientists study how this disorder plays out in girls, they are confronting findings that could overturn their ideas not only about autism but also about sex and how it both biologically and socially affects many aspects of development. They are also beginning to find ways to meet the unique needs of girls and women on the spectrum.
It's Different for Girls Scientists in recent years have investigated several explanations for autism's skewed gender ratio. Research has also revealed bias in the way the disorder is diagnosed. A study by cognitive neuroscientist Francesca Happ of King's College London and her colleagues compared the occurrence of autism traits and formal diagnoses in a sample of more than 15, twins.
They found that if boys and girls had a similar level of such traits, the girls needed to have either more behavioral problems or significant intellectual disability, or both, to be diagnosed. This finding suggests that clinicians are missing many girls who are on the less disabling end of the autism spectrum, previously designated Asperger's syndrome.
In psychologist Thomas Frazier of the Cleveland Clinic and his colleagues assessed 2, autistic children, of them girls. They, too, found that girls with the diagnosis were more likely to have low IQs and extreme behavior problems. In other words, Frazier had found further evidence that girls are being missed. And a study showed that, like Frances, girls typically receive their autism diagnoses later than boys do.
Pelphrey is among a growing group of researchers who want to understand what biological sex and gender roles can teach us about autism—and vice versa. His interest in autism is both professional and personal. Of his three children, only his middle child is typical.
Consequently, they are also asking participants and family members to suggest areas of investigation because they know firsthand what is most helpful and most problematic. Girls in the study will be compared with autistic boys, as well as typically developing children of both sexes, using brain scans, genetic testing and other measures. Such comparisons can help researchers tease out which developmental differences are attributable to autism, as opposed to sex, as well as whether autism itself affects sex differences in the brain and how social and biological factors interact in producing gender-typical behaviors.
Already Pelphrey is seeing fascinating differences in autistic girls in his preliminary research. But it does not hold up in girls, at least in his group's unpublished data gathered so far.
Pelphrey is discovering that girls with autism are indeed different from other girls in how their brain analyzes social information.
But they are not like boys with autism. Each girl's brain instead looks like that of a typical boy of the same age, with reduced activity in regions normally associated with socializing. In short, the brain of a girl with autism may be more like the brain of a typical boy than that of a boy with autism.
A small study by Jane McGillivray and her colleagues at Deakin University in Australia, published in , provides behavioral evidence to support this idea. McGillivray and her colleagues compared 25 autistic boys and 25 autistic girls with a similar number of typically developing children.
On a measure of friendship quality and empathy, autistic girls scored as high as typically developing boys the same age—but lower than typically developing girls. Pelphrey is finding that autism also highlights normal developmental differences between girls and boys. Masking Autism Jennifer O'Toole, an author and founder of the Asperkids Web site and company, was not diagnosed until after her husband, daughter and sons were found to be on the spectrum.
On the outside, she looked pretty much the opposite of autistic. At Brown University, she was a cheerleader and sorority girl whose boyfriend was the president of his fraternity.
But inside, it was very different. Social life did not come at all naturally to her. She used her formidable intelligence to become an excellent mimic and actress, and the effort this took often exhausted her. From the time she started reading at three and throughout her childhood in gifted programs, O'Toole studied people the way others might study math. And then, she copied them—learning what most folks absorb naturally on the playground only through voracious novel reading and the aftermath of embarrassing gaffes.
O'Toole's story reflects the power of an individual to compensate for a developmental disability and hints at another reason females with autism can be easy to miss. Girls may have a greater ability to hide their symptoms. Autistic boys sometimes do not care whether they have friends or not.
In fact, some diagnostic guidelines specify a disinterest in socializing. Yet autistic girls tend to show a much greater desire to connect. In addition, girls and boys with autism play differently.
Studies have found that autistic girls exhibit less repetitive behavior than the boys do, and as the findings from Frazier and his colleagues suggest, girls with autism frequently do not have the same kinds of interests as stereotypical autistic boys. Instead their pastimes and preferences are more similar to those of other girls. Frances Pelphrey's obsession with Disney characters and American Girl dolls might seem typical, not autistic, for example.
O'Toole remembers compulsively arranging her Barbie dolls. Furthermore, although autism is often marked by an absence of pretend play, research finds that this is less true for girls. Here, too, they can camouflage their symptoms. O'Toole's behavior might have seemed like typical make-believe to her parents because she staged Barbie weddings just like other little girls. But rather than imagining she was the bride, O'Toole was actually setting up static visual scenes, not story lines.
Also, unlike in boys, the difference between typical and autistic development in girls may lie less in the nature of their interests than in its level of intensity.
These girls may refuse to talk about anything else or take expected conversational turns. Her life was dominated by anxiety. The resulting anorexia became so severe that she had to be hospitalized when she was In the mids researchers led by psychiatrist Janet Treasure of King's College London began to explore the idea that anorexia might be one way that autism manifests itself in females, making them less likely to be identified as autistic.
Both people with autism and those with anorexia tend to be rigid, detail-oriented and distressed by change. Furthermore, because many people with autism find certain tastes and food textures aversive, they often wind up with severely restricted diets. Some research hints at the connection between anorexia and autism: The research found that women with anorexia have higher levels of these traits than typical women do.
No one is suggesting that the majority of women with anorexia also have autism. A meta-analysis by Tchanturia and her colleagues puts the figure at about 23 percent—a rate of ASD far higher than that seen in the general population.
Further, because autism and ADHD often occur together—and because people diagnosed with ADHD tend to have higher levels of autism traits than typical people do—girls who seem easily distracted or hyperactive may get this label, even when autism is more appropriate.
Obsessive-compulsive behavior, rigidity and fear of change also occur in both people with autism and those with OCD, suggesting that autistic females might also be hidden in this group.
This was the case for Grainne. Her mother, Maggie Halliday, had grown up in a large Irish family and could see early on that her third child, Grainne, was different.
She could make herself a dead weight and just—you couldn't pick her up. Today the teenager's intense interests are boy bands and musical theater. Despite being extremely shy, she blooms on stage and loves to sing. Because of a genetic condition, Grainne is short: And although she is laconic and does not tend to initiate conversation, she is also bubbly and smiles frequently, clearly interested in connecting. She weighs what she does say very carefully.
Of course, adolescence is difficult for most kids, but it is especially challenging for autistic girls. Moreover, puberty involves unpredictable changes such as breast development, mood swings and periods—and there are few things that autistic people hate more than change that occurs without warning. Unfortunately, the autistic tendency to be direct and take things literally can make affected girls and women easy prey for sexual exploitation.
In this way, autism may be more painful for women. Autistic people who do not seem interested in social life probably do not obsess about what they are missing—but those who want to connect and cannot are tormented by their loneliness. A study published in by Baron-Cohen and his colleagues found that 66 percent of adults with the milder form of ASD so-called Asperger's reported suicidal thoughts, a rate nearly 10 times higher than that seen in the general population.
The proportion was 71 percent among women, who made up about one third of the sample. Until very recently, few resources have been available to help autistic girls through these difficulties. Now researchers and clinicians are starting to fill these gaps. Aimed at helping affected girls navigate adolescence, it focuses on specific issues such as hygiene and dress.
Even many highly intelligent girls on the spectrum have difficulties with washing their hair, wearing deodorant and dressing appropriately, Jamison says.
Some of this behavior is linked to sensory issues; other aspects of the problem are related to difficulty following the appropriate sequence of behavior when doing something you think is unimportant.