Autism is four times more common in boys than girls, according to the Centers for Disease Control and Prevention (CDC), but that number may not portray the whole truth. Some studies have shown that part of this seeming gender gap results from the fact that autism is often undiagnosed in girls.
“There is a thought that autism is more common in boys than [in] girls … In some ways that might be because what we’re looking for in terms of a clinical picture is skewed towards boys to some extent,” said Dr. Diane Adreon, associate director of the Center for Autism & Related Disabilities, a partnership between the University of Miami and Nova Southeastern University.
Thomas Frazier, chief science officer for Autism Speaks, concurred that autism is more commonly diagnosed in boys than in girls because of how the standard diagnostic tests were constructed. Research focused on boys and how their autism presents itself can lead a clinician to miss some symptoms of autism during a diagnostic visit if those symptoms present differently in a girl.
“Some data suggest that genes important for social behavior are expressed differently in all boys and girls, with male gene expression being closer to what is seen in autism,” said Frazier. “Thus, boys may be closer to and more likely to cross the autism threshold.”
Adreon has encountered several women who were diagnosed as adults or suspect they have autism. Sometimes women with autistic children would discover that they had autism themselves after researching their child’s diagnosis.
“I always had this sense of being different…of being an outsider,” said Samantha Stein, a recently diagnosed 33-year-old autistic woman who lives in the Netherlands. After giving birth to a child, Stein said she struggled going out with her friends and acting “normal.”
“It was almost as if the extra effort involved in raising a child took away my ‘mask,’” said Stein. “It took away my ability to be someone that I wasn’t, which is a skill that I’ve been working on for most of my life.” It was then that she realized there was something wrong, although there had been times in her life when she wondered, What’s wrong with me? After a YouTube video about autism in women prompted her to go down a “rabbit hole of research,” she quickly came to the conclusion this was her. Soon after, she went to her doctor and was diagnosed as autistic at age 33.
Stein said many women are diagnosed in their 30s and she believes it is because, if you’re masking your whole life, you’re spending a lot of energy trying to seem “normal.” Although you might be able to keep it up for a while, you’ll eventually run out of energy.
Terra Psych is the creator of The Aspergian, an online collective of autistic voices, where contributors document their experiences. When Psych first had the idea for the project, she did not expect that it would become so successful with worldwide name recognition and 200 participants.
Psych was unaware that she was autistic for most of her life, despite marrying an autistic man and connecting very well with autistic students throughout her 13 years of teaching. She never had problems making eye contact and was very social.
“[Girls] often don’t appear as different from their neurotypical peers as boys with autism might,” said Adreon. Girls with autism often mimic what others do and that can camouflage their symptoms. They may also pay more attention to the social things that they’re missing and exert extra effort into learning how to act in different scenarios.
Adreon and Stein both say that societal expectations play a role. “For boys, there’s less pressure from society to be seen as sociable and having lots of friends, which is something very important for girls,” said Stein.
Autistic girls who aren’t diagnosed become experts at “masking” because, when they are themselves, they experience micro-rejections, according to Stein. They will say something and someone will give them a strange look and they think “I’m not going to say that again.”
“You get to a point where you don’t really know who you are anymore because you’ve been trying to make yourself the person that everybody else seems to be natural, but it doesn’t come naturally to you,” she said.
Frazier said girls who have developed these coping mechanisms that mask symptoms or delay their referral to an autism specialist can go undiagnosed.
Stein also said that women are frequently misdiagnosed with either bipolar disorder or borderline personality disorder because there is a lot of overlap between the symptoms of autism and those two conditions. Autism is thought of as a male condition and bipolar disorder is more typically diagnosed in females, she said.
“Sometimes girls are just seen as shy and they are often likely to be diagnosed or treated for anxiety or depression when there might be an underlying autism,” said Adreon.
Autism Speaks has funded projects that have helped lower the age of diagnosis, according to Frazier. “Ongoing work in biomarker studies have the potential to lead to new, objective diagnostic tools in the future,” he said. Autism Speaks also supports programs that train physicians in screening for autism, including how autism may look different in girls than in boys.
At the University of Virginia, the STAR Initiative is working to develop new assessment tools that better account for the differences between genders.
By sharing her experience on YouTube, Stein believes she can educate people about autism as well as help people understand themselves. She’s creating her own content in an effort to fill a perceived gap between ongoing research with plenty of funding and research that would potentially be more relevant to autistic adults but is not as popular, such as investigating autistic burnout. “I would love to know why I get a buzzing in my head after I’ve been focusing all day,” she said.