Differences in symptom presentation may lead to women and girls being underdiagnosed

Past estimates have shown that boys are four times more likely to be diagnosed with autism spectrum disorder than girls.

Why is that? Are there genetic factors that somehow make one sex more vulnerable to neurodevelopmental disorders?

Perhaps.

But it may also be the differences in how autism symptoms present in girls and women. And this difference may lead to women and girls being underdiagnosed.

“Anyone can be affected by autism — it just affects people differently,” says pediatric psychologist Meagan Adley, PsyD. “The more we learn, the more it seems that people, especially women and girls, may be overlooked, misdiagnosed or diagnosed later, and missing out on the support they need.”

We talked with Dr. Adley about sex and autism spectrum disorder diagnoses.

But before we dive in, let’s get on the same page about the language we’re using.

Some people with autism spectrum disorder prefer to use the term “autistic.” Others don’t. So, we’ll use terms like “autistic girls and women,” as well as “girls and women living with autism spectrum disorder” to reflect both preferences.

Additionally, the research that forms much of our current understanding of our health in general — and autism spectrum disorder in particular — is based on studies of men and women and their sex recorded at birth.

We use terms like girls, women, boys and men in this story to reflect what is currently understood about sex and autism spectrum disorder.

Understanding autism in women and girls

The symptoms of autism spectrum disorder may present differently across sexes. It’s not necessarily that boys and girls have different symptoms. It’s more that symptoms may vary in how they’re expressed. This may lead to healthcare providers, teachers, parents and other caregivers overlooking symptoms in women and girls.

Dr. Adley explains that women and girls, especially those without intellectual impairment, tend to display more subtle symptoms of autism spectrum disorder.

Signs of autism in women and girls

There isn’t a definitive test for autism spectrum disorder. Instead, healthcare providers use specialized evaluations and screenings that consider the ways people interact with others and the world.

Dr. Adley says when behavioral health specialists work to diagnose a child with autism spectrum disorder, they look for certain signs and symptoms, like:

  • Differences in eye contact
  • Trouble using gestures, like pointing and waving
  • Difficulty with communication
  • Strongly adhering to certain routines or having extreme reactions to even small changes in routine
  • Significant aversions to sensory stimulation, like loud noises, certain foods or food textures, or clothing fabric or fit
  • Engagement in repetitive behaviors, like constantly stacking toys
  • Fixation or obsessive interest in particular things at the exclusion of everything else

Why autistic girls can go undiagnosed

Symptoms of autism are more readily apparent in people who require more support than those with milder signs of autism. If a child doesn’t speak, for example, it’s harder to miss, regardless of their sex.

Differences in autism spectrum disorder are more likely to be overlooked when they’re more subtle. And that’s the case with girls with less severe autism. Their symptoms can be less apparent.

The trouble is that autism spectrum disorder screenings were developed largely based on research done on autistic men and boys. And some researchers suggest that those screenings aren’t always sensitive enough to account for the ways autism spectrum disorder manifests in women and girls.

Here are a few reasons why.

The same symptoms can be expressed differently

While boys and girls with autism may have the same symptoms, they may be displayed differently. And that can make a difference in whether they’re diagnosed.

For example, boys are more likely to display stereotypical symptoms associated with autism, such as repeatedly lining up cars. Or being fixated on trains.

While girls can display repetitive behaviors and fixations as well, they may not be as easy to recognize.

A young girl may seem to be playing with dolls. But on a closer look, she may actually be repetitively organizing her dolls and accessories in the doll house. Or reenacting the same play scene repeatedly. And girls’ restricted interests can be more likely to be age-appropriate interests, such as animals, princesses or celebrities, Dr. Adley adds.

In both examples, the child is displaying symptoms of autism spectrum disorder.

The difference is this: The behavior and interests of the little boy may raise a red flag for parents and teachers. The girl’s behavior and interests go unnoticed.

He’s engaged in well-documented, researched and generally recognized fixation and repetitive behavior. She isn’t.

Social camouflaging

As a result of social conditioning and cultural norms, girls may be more likely to engage in what researchers have called social camouflaging or masking. That means they may be more likely to try to blend in so as not to draw attention.

Autistic girls may be more likely to be aware of their social difficulties and work very hard studying how other girls interact to try to fit in.

“This can especially be true for girls with autism who don’t show intellectual impairment,” Dr. Adley says. “Research suggests these girls may show more social interest. And any repetitive behaviors or restrictive interests may be less apparent. It can be more difficult to notice and for healthcare providers to diagnose.”

For example, autistic kids often tend to prefer to play alone, rather than engage in group activities.

But girls in the study were more likely to attempt to “mask” their social challenges. They would still play independently but stayed closer to the group. Or they would “weave” in and out of play.

The boys, on the other hand, would play solo while staying farther from the group. That made it more apparent that they were isolating themselves from the other kids.

Resources for autistic girls and women

Even if girls with autism spectrum disorder are able to “get by” or mask their difficulties in social situations, the diagnosis can still dramatically affect their lives. And they deserve help and support.

Autism spectrum disorder is associated with a range of other medical conditions, including feeding conditions, poor sleep and epilepsy. And without treatment, like behavioral intervention or therapy, autistic people can also be more at risk for mental health conditions, like anxiety, depression or self-injury.

If you’re concerned your child isn’t engaging with others or is having difficulty in social situations, help is available.

  • Talk with your child’s healthcare provider, like their pediatrician. They can help you understand the milestones your child should reach by their age and get support if your child isn’t progressing in a way that should be expected.
  • Seek out specialized care, like a pediatric mental health expert who specializes in autism to pursue screening and start treatment.
  • Get familiar with online resources, like Autism Speaks resource guides and the American Academy of Child and Adolescent Psychiatry’s resource center.
  • Connect with other autistic women and girls by joining online communities, like the ones recommended by Autism Empowerment.

Parents and caregivers know their children best. Trust your gut. And seek help if you have any concerns.