麻豆传媒入口

On a recent hot summer afternoon, eight women sat at a table drawing and crafting at , the world鈥檚 first community space devoted solely to women with autism. Opened just two years ago, the historic town house in the middle of New York City is a haven for women with a condition that limits their ability to communicate and interact with others.

The women who gather here have spent much of their lives seeking to understand how and why their brains work differently. While making art, learning poker, or attending classes, they鈥檙e able to talk to others who share similar experiences鈥攃onfusing social interactions where they 鈥渟aid the wrong thing鈥� or bosses or coworkers who鈥檝e asked, 鈥淲hat鈥檚 wrong with you?鈥�

鈥淚 find it easier to meet people here. You don鈥檛 have to explain yourself,鈥� said Lauren, a woman in her 20s, that afternoon. 鈥淣o one鈥檚 like, 鈥榃hat are you thinking?鈥欌�� added Emma.

The women turned the conversation to high school, bringing up memories and reflections of living with autism spectrum disorder (ASD) during their school years.

鈥淚 was a good test taker, but that doesn鈥檛 mean my executive functioning was up to par,鈥� remembers Allison, who switched high schools to a 鈥渓ess pressurized one鈥� because she needed to 鈥済o at my own pace.鈥�

Many women at Felicity House discovered they had autism when they were older, missing a key intervention window that might have made their experiences at school and home easier. Far from being alone, they鈥檙e part of a group sometimes called 鈥�.鈥�

Autistic women are diagnosed much less frequently鈥斺�攖han boys or men. In the past two decades, as more research on ASD has been conducted, diagnoses among children have soared. Between 2000 and 2012, the percentage of kids diagnosed with autism more than doubled, and today, is diagnosed with the condition, according to the Centers for Disease Control and Prevention (CDC). Yet the large majority of these diagnoses are for boys, who are diagnosed more than four times as often as girls.

That may start changing soon due to a finding that autistic girls are dramatically underrepresented in autism diagnoses鈥攐ften overlooked or misdiagnosed鈥攄ue to a mistaken assumption that autism exhibits in the same way in girls and boys.

鈥淲e鈥檝e found that while boys and girls with autism are facing similar problems in school and at home, some of their underlying brain functions are different,鈥� said Kevin Pelphrey, a leading autism researcher and director of the at George Washington University. 鈥淭his results in some differences in the symptoms of the autism and suggests the need to tailor treatment approaches by gender.鈥欌��

Pelphrey, who encountered these disparities among his own children鈥攖wo of whom are autistic鈥攊s part of a team conducting ongoing research devoted to uncovering what autism looks like in girls and how best to treat it. Funded by the National Institutes of Health, the project brings together top autism researchers from around the country to explore different facets of the gender bias in autism, including genetics, brain imaging, and behavioral development鈥攁 significant breakthrough for autistic girls and the field of autism research.

In the coming months, Pelphrey and his team will start with the launch a new, 10,000-square-foot center for autism diagnosis and therapy at the university.

Dangerous Blind Spots

The researchers have already found biological and social differences in how boys and girls exhibit signs of autism, but the misconceptions around the disorder have been a long time in the making, and undoing them won鈥檛 happen overnight.

Popular stereotypes and generalities have played a role, priming parents and teachers to look for telltale signals of autism such as hand flapping and verbal tics, failure to make eye contact, or a laser-like fixation on trucks or dinosaurs. And researchers, reacting to the apparent prevalence of autism among males, may have unknowingly created a gender bias in the science itself鈥攂y conducting their research predominantly on autistic boys and men, and then forming conclusions about the condition that have been applied to girls and women as well.

For autistic girls, whose lives can be changed by early diagnosis, the mutually reinforcing trends in culture and science represent a dangerous blind spot. The  that autistic girls may display fewer repetitive behaviors than boys and tend to be more social, verbal, and engaged. Autistic girls are also more likely to be obsessive and have a harder time regulating emotions, leading to diagnoses of other problems like anxiety and obsessive compulsive disorder (OCD) instead of autism.

The American Academy of Pediatrics recommends that all children by the time they鈥檙e 18 to 24 months old, with a diagnosis ideally made by the time a child enters school to maximize a key window for intervention. The consequence of missing that critical opportunity to diagnose girls is an increased risk for serious mental and physical health problems and lifelong struggles in school, work, and personal lives.

Camouflaging the Signs

School provides another for girls who may have slipped under the radar.

By the time a child starts school, the autism gender differences can be more magnified, says Connie Kasari, a researcher on the NIH study and a professor of psychological studies at the University of California, Los Angeles. has focused on how autistic boys and girls interact and socialize in different K鈥�12 school settings, such as the playground.

Girls tend to camouflage their autism symptoms more and engage differently with peers and adults than autistic boys, she says. Sometimes these social interactions make it even harder to pick up on the signs of autism because girls tend to try harder socially and have a greater desire to make friends. Girls will often when they sense they are not fitting in or understanding social situations, while boys may act out their frustration, becoming upset and signaling an undiagnosed behavioral issue more clearly.

鈥淚f you are an adult in the school yard, you may notice boys with autism. They may try to enter a group and if they get rejected, they walk away,鈥� said Kasari. 鈥淕irls tend to be more persistent. They hover. It might seem they are doing OK. But if you look closer, you will see they are not.鈥�

Especially when autistic girls are more verbal or higher functioning, their autism symptoms may also present themselves as other problems like , anxiety, attention-deficit/hyperactivity disorder (ADHD), or , which are more easily identified and diagnosed, researchers have found.

That was the case with Allison Hamilton-Rohe鈥檚 daughter, whose teachers first suspected she had ADHD, before realizing she was autistic.

Talkative, sociable, and prone to frequent hugging, the girl was diagnosed with autism at the age of 8, after a 鈥渧ery difficult year at school,鈥� says Hamilton-Rohe, noting her trouble concentrating in a seemingly chaotic class and frequent temper tantrums over small changes鈥攑articularly at the end of a busy day.

Hamilton-Rohe had asked her daughter鈥檚 school to look into an evaluation three years earlier, but dropped it because the school thought it wasn鈥檛 necessary. Eventually, her daughter鈥檚 inability to process lots of stimuli at once, need for structure and time alone, and one-track mind led to a diagnosis of autism, she says.

鈥淲hen I tell people she is autistic, they have a hard time because she does look at them, talk to them, and ask questions,鈥� said Hamilton-Rohe. 鈥淭hey expect autism to show up like it does in Rain Man.鈥�

Hamilton-Rohe鈥檚 family decided to move to Montgomery County, Maryland, in hopes of getting support for the girl within general education classrooms there. The school district has programs for students with autism within general education schools and classrooms, and has at both the elementary and secondary levels to address the growing number of autistic students.

Learning to Navigate

As with Hamilton-Rohe鈥檚 daughter, the experiences of autistic girls鈥攂oth their diagnoses and services鈥攐ften depend on what kind of classroom or school they鈥檙e in. A broad CDC-backed study of 11 states, for example, diagnosed with autism depended somewhat on the diagnostic services available within a district or school鈥攕chools with strong special education services had more comprehensive evaluations and earlier diagnoses for students.

Like many large districts, the 35,000-student Minneapolis Public Schools has both self-contained classrooms and inclusion programs for the nearly 900 students with autism.

While the more than 4-to-1 ratio of boys to girls diagnosed with autism applies in MPS, the district reports differences in how autistic boys and girls interact socially and what they鈥檙e interested in, affirming the new research.

One particular gender-specific challenge the district notes is helping older autistic girls鈥攅ven as early as fourth grade鈥攄iscuss their changing bodies and navigate interactions with the opposite sex.

It鈥檚 important to be as direct as possible, say district special ed teachers, scripting conversations and noting the appropriate time to give hugs. The discussion can take a particular urgency for older girls, who may not be aware when social rules are being broken or manipulated鈥攁 prospect particularly frightening for girls who are undiagnosed and could run a greater risk for sexual predation or abuse.

Without support, autistic girls can face a number of challenges and be 鈥渋solated and mistreated,鈥� resulting in anxiety and depression, according to Julia Bascom, executive director of the , an organization run and composed of people with autism.

鈥淏y the time a child is in middle school, they know they are different. If they aren鈥檛 given a reason, they come to the same conclusion鈥攖hat something is wrong with them,鈥� said Bascom, who is also on the board at the Felicity House. 鈥淭he suicide rate for autistic individuals is nine times the general population. This information saves lives.鈥�

Correcting the Imbalance

It may take a decade for the autism research on girls . When it does, there could be twice as many diagnoses for girls, and benefits for the entire field, as scientists refine or discard outmoded theories.

In the interim, others are identifying interventions to address the disparities in diagnoses and treatments now, noting that differences in autistic behavior may also warrant different treatments for girls.

Some districts, like the nation鈥檚 largest, in New York City, have found that it helps to pair general education teachers with special education teachers in a co-teaching model, where teachers share classroom responsibilities and both receive specialized training in teaching students with autism. Called the , the program helps ensure that all teachers know how to identify and support children with autism and serves more than 1,200 autistic students in 43 schools in the district.

And Pamela Ventola, a researcher on the NIH study on girls with autism and a professor at Yale University鈥檚 Child Study Center, has found that a long-standing behavioral intervention called (PRT) helps girls in particular.

PRT motivates children with ASD to learn typical behaviors, such as fluid speaking or give-and-take conversations, by having parents and such as 鈥淐an I play with you?鈥� or 鈥淲hat is that?鈥� to get a child to verbalize or take turns in an everyday play setting with immediate positive feedback. Ventola is now working with Connecticut鈥檚 New Haven Public Schools to bring her research to the classroom by helping teachers implement PRT with autistic students.

It鈥檚 not too late for adult women with autism either, after they leave the supports of school and home.

Thanks to the growing awareness of the particular experience of women with autism, a handful of female-only autism networks have emerged, among them social outings for teens called 鈥淕irls鈥� Nights Out鈥� at and at the Medical Center, and Felicity House, whose programming re-creates school-based supports in some ways, but without the fraught experience of being an adolescent.

鈥淲hen you graduate, it鈥檚 like, no more [individualized education program], no more help,鈥� reflected Lauren at Felicity House on an afternoon this summer. 鈥淪o it鈥檚 nice to have a place where people recognize you still might want to do things with others and people appreciate you as a person. It is nice to know you are not forgotten.鈥�