MULTIMEDIA: Blue Roses Girls is a registered nonprofit meant for girls of all levels of ability to socialize and make friends.
Cheyenne walks in the room, beams from ear to ear and turns to embrace the girl closest to her. She laughs and chats for a moment before moving on to greet another friend in the group of about 30 adolescent girls.
She looks like any other friendly, happy child, but a closer look shows the subtle tapping of her hand, indirect eye contact and the occasional repeated phrase.
Cheyenne was diagnosed with an Autism Spectrum Disorder as a child and is a part of Blue Roses Girls, a registered nonprofit for girls with developmental disabilities to interact and make friends. Within the group, 25 of the 40 total girls are on the spectrum. Cheyenne’s mother, Jazel Peterzell, is one of the founders of the group. She said although she now understands the condition more, at the time of Cheyenne’s diagnosis, she didn’t believe it.
“It baffled us because Cheyenne was verbal,” Peterzell said. “She would make eye contact with you, she wanted to play with other children … She wasn’t like what we see ASD children to be.”
Peterzell’s concerns are echoed in families across the globe, specifically those with daughters on the spectrum. As a traditionally male-dominated disorder, many don’t think of their daughter being affected in the same way they worry about their sons.
“Was I angry for a while? Yeah, I was very angry,” Peterzell said. “My first child, my only child and she’s a girl. I read about the statistics about ASD services and boys vs. girls and I thought, ‘Wow, I’ve landed on some other planet here.’”
Autism, which is sometimes described as the result of an “extreme male brain,” affects males and females in a 4-to-1 ratio, according to the Center for Disease Control. And while overall autism diagnosis dramatically rose during the past few decades, a 16-year Danish study published last year found female diagnoses are rising at a faster rate. Researchers looked at nationwide data from hospital reports in Denmark. They found new male diagnosis quadrupled, while new females diagnosis increased sevenfold during the time period.
The results also showed that on average, girls were diagnosed at older ages than boys.
Lynette Louise, an international speaker on autism and author, said some women might be diagnosed later in life because girls are more skilled at masking the signs of the disorder.
“She is managing to sort of play out the actions of normalcy better and is less of a problem in the classroom … and fits her gender description better,” she said. “So it’s only her awareness of her own anxiety and her own challenges that brings her to eventually get diagnosed.”
Some parents and teachers overlook the traditional signs of ASD, such as trouble showing empathy or an aversion to physical touch, because girls can present the symptoms in unexpected ways, she said.
“When you have a little girl and she’s wanting to hug you and she’s all over your lap and she can’t leave your lap, you’re not thinking autism, but it might be,” Louise said. “It might be that she’s sensory seeking and she has to be on your lap, she can’t stand to not have that input. It still matches the diagnosis.”
Autistic girls may also have more “normal” interests than boys, she said. Highly specialized obsessions are characteristic of both sexes on the spectrum, specifically those who are higher functioning. When a young boy speaks nonstop about trains or bugs, most people can recognize it as out of the ordinary and a sign of autism. Girls on the spectrum might have fascinations that are more common, like a celebrity, books or makeup, leading people around her to write it off as normal.
In 2013, the American Psychiatric Association released the fifth edition of the Diagnostic and Statistic Manual of Mental Disorders, an authority on mental health in the U.S. In addition to reclassifying Asperger’s Syndrome (a disorder long-associated with autism) as an official ASD condition, it formally recognized the idea that girls may present autism differently than boys.
This comes in response to several studies from recent years suggesting we need different diagnostic material to identify girls on the spectrum, according to the Journal of the American Academy of Child and Adolescent Psychiatry. However, there is still no formal sex-based diagnostic criteria.
Tania Marshall, an award-winning author and child psychologist, said the gender bias toward boys in autism research has contributed to misunderstandings of how girls manifest the condition.
“Autism Spectrum Conditions had primarily been thought of as a male condition, and as such, the majority of assessment tools, research and writings have been based on males and have a strong ‘male-centric’ view or bias,” she said. “The outcome of this is that many females remain undiagnosed or misdiagnosed and are then receiving inappropriate treatments and support.”
As noted in the name, ASD is a spectrum condition, meaning that signs and symptoms can show up in a whole range of ways. One autistic child could be nonverbal, with a low IQ and an inability to touch or hear certain things without an intense reaction. Another could be on the honor roll at school, skilled in areas that require intense focus, have compulsive tendencies and difficulty in social situations.
This array of possibilities can make identifying ASD in a child or adult additionally difficult, as certain symptoms may be mistaken for another condition. With girls, this could mean if they learn to hide certain ASD traits, they may go undiagnosed or receive an inaccurate diagnosis, such as obsessive-compulsive disorder, tourette’s syndrome or a generalized anxiety disorder.
Even with a diagnosis, some families still need to fight for services for their daughters on the spectrum. Tina Martinez, another Blue Roses Girl’s mom, said her daughter seemed like other little girls when she was diagnosed, making it difficult to convince the local center for developmental disabilities of her need for special attention.
“Because she was polite and could talk and was in a mainstream preschool, they just felt like she didn’t need any services at all, which is ridiculous,” Martinez said.
Girls on the spectrum, especially those who are high functioning, may blend in more with their peers than boys, eventually learning to mimic the social behavior of other girls, according to the National Autistic Society.
Marshall said this may also be an effect of gender norms.
“Generally, females are more likely to be driven socially to fit in, and therefore, they are more likely to use strategies like social echolalia, mimicking, and copying others,” Marshall said. “These strategies allow them to function better in social contexts but it can be these very strategies that can lead to a missed diagnosis or a misdiagnosis.”
Five years ago, the Interagency Autism Coordinating Committee, a federal committee in charge of anything related to autism within the Department of Health and Human Services, included the need for increased research on females with ASD in its strategic goals. Since then, it has funded five new studies on the topic.
In San Diego, the local Regional Center, a nonprofit organization that contracts with the California Department of Developmental Services to coordinate services with developmentally disabled individuals, reports consistently higher numbers of female patients on the spectrum during the last decade.
Blue Roses Girls is still one of the only groups in San Diego that is meant specifically for girls with developmental disabilities, and it continues to grow each year. In addition to social activities for the girls, the group participates in community events to spread the word of the organization, and the needs of girls themselves.
“There’s a joke among the special needs mommies of these girls that we can’t die,” Peterzell said. “We need to live to be 100 so that we can see our children into middle age, because we’re so fearful about exploitative people.”
Cheyenne is getting ready to start high school next year, and with that comes a whole new set of challenges with navigating social situations, bullies and a potential love life. Her mother hopes that the next phase of her life will bring more opportunities for independence, but mostly wants those around her daughter to understand and respect her needs.
“That’s all I want for my child,” she said. “One good friend, and someone to love and take care of her. That’s all.”