Cheyenne walks into 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 40 adolescent girls.
She looks like any other friendly, happy child, but then, there is the subtle tapping of her hand, averted eye contact and the occasional repeated phrase.
Cheyenne, who is 14 and lives in San Diego, was diagnosed with an autism spectrum disorder as a child and is part of Blue Roses Girls, a nonprofit that enables girls with developmental disabilities to make friends. Within the group, 25 of 40 girls are on the spectrum.
ASD is a spectrum condition, meaning signs 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.
Cheyenne’s mother and a co-founder of Blue Roses Girls, Jazel Peterzell, said she never worried her daughter was on the spectrum because she didn’t know much about it. She associated autism with an antisocial little boy, who didn’t speak or make eye contact. So when her daughter’s preschool teacher suggested she be checked for developmental disabilities after observing the repetitive tapping of her hands and slight social discomfort, it came as a shock.
“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. Because autism is a traditionally male-dominated disorder, many parents don’t think about their daughters 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.’”
The results also showed that on average, girls were diagnosed at older ages than boys.
Lynette Louise, an author and international speaker on autism, said some women might be diagnosed later in life because girls are more skilled at masking 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.”
Srividya Ananthanarayanan, another founder of Blue Roses Girls, said it was even difficult to convince her daughter’s doctor that something was wrong. Maya, who is now 13, displayed more classic symptoms of autism, and wasn’t speaking by the time she was 18 months old.
At the time of her daughter’s diagnosis, a little more than a decade ago, many doctors still didn’t see the symptoms of autism as a neurological condition, rather believing it was a behavioral issue, she said.
“My doctor refused to believe she was autistic at 18 months,” Ananthanarayanan said. “If a colleague hadn’t told us what it is, my husband and I would have known nothing about autism or behavioral issues.”
When Maya’s younger brother was also diagnosed, life for the the Ananthanarayanan family changed dramatically. In order to help her children and communicate with them, Ananthanarayanan left a high-paying career to return to school.
“I had to educate myself just to help my children,” she said. “I had to redo everything. My computer science masters degree and mathematics degree were no use. I had to go into psychology and take (Applied Behavioral Analysis) classes and speech therapy classes just so I could understand my children.”
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 that we need different diagnostic material to identify girls on the spectrum, according to the Journal of the American Academy of Child and Adolescent Psychiatry.
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 disorder.
“Autism Spectrum Condition 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.”
This gender bias in traditional diagnostic material can make identifying ASD in a girl or adult woman additionally difficult, as certain symptoms may be mistaken for another condition. As girls mature, they may learn to adapt to social settings and hide certain ASD traits.
Girls who are high functioning can eventually learn to mimic social behavior, according to the National Autistic Society.
“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.”
Even with a diagnosis, some families still need to fight for services. Tina Martinez, another Blue Roses Girl’s mom, said she and her husband only sought out a diagnosis for their daughter, Avery, after noticing that she wasn’t developing at the same pace as her older brother. When she finally was diagnosed, it was even difficult to convince Avery’s preschool of her need for special treatment.
“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.
Identifying the need for services and proper therapy are key in avoiding potential dangers for ASD children, Dr. Joshua Feder, a child and family psychiatrist in San Diego and the Medical Coordinator of the Rady Children’s Hospital Autism Research Seminar said. Autistic children usually aren’t skilled at picking out dangerous situations or people, or noticing when someone is lying.
“If you have a child on the spectrum, kind of by definition that person is probably more vulnerable to being taken advantage of — financially, sexually, bullying, that sort of thing,” Feder said.
He believes girls are even more at risk, as they tend to be less assertive than boys. Because of this, he stressed the importance of teaching children with ASD how to understand and build relationships, as opposed to simply showing them how to behave and follow commands.
“So many times treatment and socialization programs are pitched toward external behaviors and having people comply that it makes a person, a girl, more vulnerable to following the directions of the adults, as opposed to being able to think for herself, and being able to say ‘No, that’s not right’ when things aren’t right,” he said. “If we are training compliance we are training people to not be able to take care of themselves.”
Five years ago, the Interagency Autism Coordinating Committee, a federal committee 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. There are still no official sex-based diagnostic materials for ASD.
In San Diego, the local Regional Center, a nonprofit that contracts with the California Department of Developmental Services to coordinate services with developmentally disabled individuals, reports increasing numbers of female patients on the spectrum during the last decade.
Blue Roses Girls is one of the only groups in San Diego whose mission is serving girls with developmental disabilities. In addition to social activities, the group participates in community events such as the Race for Autism 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: 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 she 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.”
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