Shifting our Perspectives: Girls & Autism

When it comes to diagnosing girls with autism, experts are finding that we may be looking for the wrong things.

Michele Thorne dove in headfirst to understand the nuances of autism after her son, Jackson, was diagnosed just after his third birthday. The signs were obvious — regression in speech, repetitive behavior, and extreme difficulty in interacting with others.

When her younger daughter, Maria, displayed none of those symptoms, Michele and her family assumed she was fine. But when the Thorne family sought to enroll Maria in the Southwest Autism Research & Resource Center’s (SARRC) inclusive preschool program, the Community School, as a typically developing student, they learned there may be concerns regarding their daughter’s development.

“I don’t know if I ever would have suspected that she had autism had we not gone through the enrollment process for the Community School,” says the mother of two. “Maria couldn’t even make it through the intake appointment.”

The intake process is a requirement for all potential typically developing students and must be completed before enrolling in the Community School. Children participate in a play-based assessment, the Autism Diagnostic Observation Schedule (ADOS), which is designed to elicit communication and social skills to ensure that they have the skills necessary to serve as a typical peer in the Community School’s treatment model.

The Thornes then understood how autism symptoms can vary for girls and boys.

While her brother was nonverbal, Maria liked to talk — a lot. But it was the substance of her speech—echoing words, phrases and sounds of the speech of others—that was a sign that she had something more going on. Additionally, while Maria liked creative play and appeared to be socializing, a closer look showed that her play was more repetitive, and her interaction was more about proximity to others than actually engaging with them.

“When you have a child with autism, you don’t know what typical is. Because it’s not what Jackson was doing, we assumed, well, this must be what typical is,” Michele says. Now, both of her children, ages 4 and 7, have been diagnosed with autism.

LOOKING THROUGH A DIFFERENT LENS

The Thornes’ story is not uncommon, and the shift in how we look at gender and autism is something that has been gaining more attention and weaving its way into practice. 

Studies consistently find higher rates of autism in boys than girls. Currently, the male-to-female ratio for autism is estimated to be 4 to 1. This gender gap has led to research aiming to understand the disparity and also to determine whether or not girls are being underdiagnosed. 

While the results are not yet definitive, the body of research that is starting to emerge is promising for early diagnosis in females, and that is something that is invaluable, says SARRC researcher Stephen James, Ph.D. 

“Early research on autism planted a seed for a male stereotype of the disorder and led to diagnostic procedures being largely male-biased using male norms,” he says. “In reality, females often present differently. They may have less repetitive behaviors, and their restricted interests may be more socially acceptable and therefore go unnoticed. They may also have a more socially appropriate communication style. With these social camouflaging traits, females are more likely to appear as if they are fitting in when they’re young, so it doesn’t raise a flag.”

Common stereotypes and gendered expectations about females, in general, may help to fuel the possibility of underdiagnosing girls, James adds.

“Females with autism often demonstrate some appropriate social skills. They may have good eye contact, develop language and gestures on time, and demonstrate social motivation, which can be misleading to parents and pediatricians. However, they may show subtle social differences, like making odd or too many social initiations, misreading social cues, and engaging in repetitive speech,” James says.

GENDER DIFFERENCES FOR THE THORNES

These stereotypes affected how Michele Thorne and her family saw her two children. Looking back on their experiences now with a new understanding, Michele says it seems readily obvious that her daughter was on the spectrum. 

Her daughter was often the one she would take with her to run errands, like trips to the grocery store. She says her thinking was that the store would be too much for her son to handle and be difficult to make it through.

“I would take Maria, and then it was a disaster because she would have a total meltdown. I never once thought of it as anything other than just her hating being at the store,” she says. “I would walk into situations with her and expect an easy experience because she was social, and she was verbal. But in reality, girls are just different.”

Those subtleties are something SARRC’s Director of Children’s Services Rachel A. Anderson, M.A., BCBA, has learned to consider when evaluating children.

Through Anderson’s work with the Community School, she is exposed to children 18 months old to 6 years of age on a regular basis. She has learned that it is relatively common for female children whose parents are not concerned or whose pediatricians have not yet expressed any concern to demonstrate symptoms of autism during their intake assessment for the Community School. It is likely that signs were missed because parents and pediatricians were viewing autism from the traditional lens.

“Symptoms among girls are often masked by their perceived advanced language and age-appropriate social interest,” Anderson says. “Boys, on the other hand, often engage in more overt behaviors that are more easily observed by parents and others who interact with them. With girls, we run the risk of missing fractures in social skills and peculiarities in language if we don’t dive in and evaluate the quality of their language and social interactions.”

THE GENDER HURDLE

Anderson says a shift in thinking has really been taking hold over the last decade, but it needs to become more widespread and common. Screening and diagnostic tools that have been shaped based on male behavior should broaden to include signs that might not look as obvious but are still there.

“The last thing we want to do is take a wait-and-see approach,” Anderson says. “The sooner we can begin to provide early, evidence-based intervention, the better the long-term outcomes will be.”

That uphill battle for services and information is something that is always at the heart for parents of a child diagnosed with autism. Add to it a barrier where evaluations have typically been based on traits shown in boys, and the climb gets even steeper.

The Thornes are already preparing themselves to educate people on the differences between their son and daughter and their symptoms as they apply for services through Arizona’s Division of Developmental Disabilities. But the education started a little closer to home.

“It took a long time for my family to accept that Maria has autism, because they see Jackson. They have this prism of what it looks like, and hers does not look like ‘classic’ autism,” Michele says. “But our extended family has learned, and it took them a long while. It took us all a while, learning how boys and girls are different, and appreciating this difference.”

As the spotlight continues to grow on these gender questions, experts like Anderson and James anticipate that a lot of parents and early childhood caregivers are going to begin to see things that were once invisible.

“In my opinion, I think there is a difference in the number of boys with autism compared to girls, but I think that ratio might be closer to two-to-one,” James says. “We need to bring that ratio of diagnosis closer so we can make sure we are getting all kids diagnosed as early as possible.”

By the numbers

  • The prevalence of ASD has been estimated to be one in 38 boys and one in 152 girls, representing a 4:1 male-to-female ratio (Baio et al., 2018).
  • Smaller ratios of 3.8:1 and 2.9:1 have been estimated using data from the National Survey of Children’s Health and the National Health Interview Survey, respectively (Kogan et al., 2018; Zablotsky et al., 2017).
  • Despite differences in prevalence for boys and girls, the most recent Centers for Disease Control and Prevention (CDC) report found no significant gender difference in the median age of first diagnosis (Baio et al., 2018).

Article by Ginger Scott-Eiden
Photos by Stephen G. Dreiseszun/Viewpoint Photographers