Supporting Women and Girls with Missed Autism Diagnoses

The behavioral health field has made great strides in diagnosing autism spectrum disorder (ASD) and providing interventions and supports to help autistic people thrive. But many autistic girls and women are still falling through the cracks. 

Three to four times as many boys as girls are diagnosed with autism spectrum disorder, a longstanding pattern confirmed in a 2023 Autism Research article that argues for sex-balanced studies of autism. The skewed ratio that almost certainly does not reflect the true incidence of autism, says Michael J. Murray, MD, the medical director for autism and developmental disabilities at Sheppard Pratt. “The diagnostic criteria for autism are largely defined by the male presentation. But girls’ brains are different, their biology is different, so it makes sense that autism would present differently,” Murray says. “We’re vastly underdiagnosing autism in women and girls.”

“There are a number of useful assessments that test for ASD, many of which are considered the gold-standard in the field; however, if the prevalence is inaccurate with regard to females then many of these assessments are normed more towards the male presentation of ASD,” says Tom Flis, MS, BCBA, LBA, LCPC clinical director of the Center for Autism at Sheppard Pratt. Many autistic girls and women don’t receive a diagnosis until adolescence or early adulthood. That’s a missed opportunity for providing accommodations that can help them be more successful in school, work, and their communities. And it can lead to a cascade of mental health difficulties. “These women often struggle through their lives without a good understanding of why they’re suffering. They can feel like they’re broken or that something is wrong with them,” Murray says. “But it’s never too late for them to get a better understanding of themselves, find a sense of community, and be able to advocate for the supports that will help them succeed.” 

At the Center for Autism at Sheppard Pratt, a multidisciplinary team of experts provides thorough diagnostic assessments for patients who may be on the spectrum, providing new hope for those who have been overlooked or misdiagnosed.  

Gender Differences in ASD

Autism can present in varied ways. Broadly speaking, though, autistic boys tend to be interested in objects, Murray says. “They may be really focused on trains, or on building blocks — behaviors that are more easily seen by others as being unusual or overly intense,” he explains. Girls more often are interested in people or animals. “They may be fixated on TV shows or movies or watching people from afar to try out their behaviors. That interest in relationships isn’t usually seen as an autistic way of looking at the world,” he says.

Because of that interest in people and relationships, girls tend to develop strategies at a young age that enable them to mask many of their autistic behaviors. They often make good eye contact and have good early language skills. But below the surface, there are signs of ASD. Girls might make too much eye contact or hold a stranger’s gaze too intently. They might be good at introducing themselves to peers but struggle to understand the nuances of inside jokes or tones of voice—especially as they get older and social interactions become more complex. 

Those more subtle behaviors aren’t always obvious in a psychiatrist’s office. “When you’re speaking with a girl who is making good eye contact and speaking in full sentences, ASD might not be readily apparent in the initial evaluation,” Murray says. As a result, many autistic girls are misdiagnosed with other things, including anxiety, depression, or obsessive-compulsive disorder. Because many girls with autism have trouble regulating their emotional response to the environment, it’s not uncommon for them to be incorrectly diagnosed with bipolar disorder or borderline personality disorder. “There’s a lot of instability which arises from being unable to easily and reliably predict the world around them. Parents don’t understand why a trip to the store is fine on a Tuesday, but not on a Thursday. Things start out fine, and then the child just blows up without apparent reason,” Murray says. “That variability in mood and behavior can be misattributed to an emerging bipolar presentation.” 

Such misdiagnoses can interfere with a person’s healthy functioning. “It leads to treatments that are not effective, and a delay in the therapies and supports that are,” he adds. 

Diagnosing ASD in Girls and Women 

When considering whether a patient may have undiagnosed or misdiagnosed ASD, Murray suggests looking for these red flags:

• Multiple diagnoses that shift frequently
• A history of trying multiple medications, and none seem to be working
• Difficulty grasping key therapeutic concepts when in therapy
• Difficulty sustaining peer relationships
• Heightened sensitivity to sensory inputs

Many young autistic women also have co-occurring conditions like anxiety, depression, or OCD, but those conditions can look different in someone on the spectrum and may respond differently to medications like SSRIs, he adds. Interventions like cognitive behavioral therapy can also be useful, but only if they are modified to the needs of the autistic individual. And tragically, autistic women are two to three times more likely than the general population to experience sexual violence, so they may also have a history of trauma that requires treatment. Treating any of those co-occurring disorders is more effective when the provider has a full picture of the person, including an accurate ASD diagnosis, Murray says. 

“While girls and women may be underdiagnosed now with regard to ASD, we also want to avoid rushing out tools that may end up over-diagnosing or misdiagnosing regardless of sex. It will take time to develop updated tools that would more accurately address the differences between males and females,” says Flis. “In the meantime, it’s important to find a clinical team that stays current on the research, takes serious consideration when discussing each of these evaluations, and reviews all results found on the standardized assessments that are used.”

Sheppard Pratt welcomes referrals for comprehensive evaluations with an interdisciplinary team of providers including psychiatrists, occupational therapists, psychologists, speech therapists, social workers, and other experts. “We have all of those experts in-house to consult with one another,” Murray says. “A good evaluation leads to a good understanding of a patient’s needs — and equally if not more important, identifies a person’s strengths and talents.” That comprehensive, interdisciplinary approach allows Sheppard Pratt’s autism experts to consider each patient holistically, and to provide the best combination of services and supports that will allow them to thrive. 

The Sheppard Pratt Solutions program provides consulting services to hospitals and healthcare organizations interested in developing better programming for autistic people of all ages. Meanwhile, the Center for Autism provides a full suite of diagnostic and case management services. “We want to serve as a resource within the local community, the region, and across the country,” Murray says. “There are many women and girls who are suffering and don’t need to be.”