Autism spectrum disorder (ASD) is a diagnosis that affects around 2.2% of adults in America, according to CNN. The number seems small, but when put into perspective, that’s around 5.4 million people ages 18 and older who struggle with autism.
One in 45 people in America are diagnosed with autism, but how do women play into this number? John Hopkins Bloomberg School of Public Health offers another statistic: in Maryland, 2016, 1 in 33 boys had autism, while 1 in 128 girls had autism. An almost 100-child gap between the two.
Even the credible source Centers for Disease Control and Prevention (CDC) states that ASD is four times more common among boys than girls. This statistic does not take into account the vast amount of women that go undiagnosed or misdiagnosed for a majority of their lives. Many sources such as Psychology Today and the Organization for Autism Research bring into play the fact that women often go misdiagnosed, some for their whole lives.
There are many factors that play into the missing diagnoses of autism in women who struggle with it. The main cause: gender disparities in the healthcare system.
Aine Kelly-Costello at the Newshub wrote in 2018 about two women with autism; one went by the name of Joanne Dacombe who was not diagnosed until the age of 48. It wasn’t until what is known as “autism burnout” heavily impacted her that she finally received a diagnosis.
In the same article, Doctor Ava Ruth Baker advocates for the two women and notes how one was even told that “girls do not get autism” and that autism is “too complex” to assess in women.
Autistic burnout, defined by Spectrum (an online newspaper dedicated to autism awareness) is “the intense physical, mental or emotional exhaustion, often accompanied by a loss of skills, that some adults with autism experience.” Some signs of autistic burnout include chronic exhaustion, a lower tolerance for stimuli, emotional dysregulation, irritability, and overall low motivation—all according to PsychCentral.
The New York Times states how regular burnout is already a battle in itself, but topping it with autistic burnout makes adults with autism struggle to complete daily tasks and even battle short-term memory loss. One speaker compares it to a “dead battery.”
Women are more likely to be diagnosed with personality or anxiety disorders such as bipolar one or generalized anxiety disorder (GAD) than autism. Medical News Today states that oftentimes, doctors mix up bipolar and autism due to their overlapping symptoms. Some shared symptoms the two diagnoses have include distractibility, changes in mood, aggression, excessive talking, and repetitive actions; the similarities are not limited to just these.
In an interview with Women’s Health, Hannah Molesworth talks about her journey as she jumped from diagnosis to diagnosis. At one point she was diagnosed with anxiety, depression and anorexia all at the same time. It wasn’t until age 17 when her driving instructor recommended she get tested for autism that she began to study the diagnosis, and eventually her theories were confirmed at age 23 when she was diagnosed with autism.
The number one factor that experts say is the “make-it or break-it” for an autism diagnosis in women is the concept of “masking.” Both Molesworth and previously mentioned Kelly-Costello had picked up this habit, which they feel led to the delay in receiving attention from physicians. “Masking” is also known as camouflage strategies, where people with autism mimic or act like their peers to fit in, according to Open Doors Therapy—an organization dedicated to empowering neurodivergent people through group therapy.
Many people with autism imitate how their peers act in order to shield themselves from bullying. Some behaviors associated with autism are often seen as “disruptive” or just plain odd, so to not be seen in a negative light, people with autism often swallow down feelings of discomfort. This, in the end, leads to extreme autistic burnout; pretending to be someone they aren’t is tiring for people with autism and leads to identity problems and self-esteem issues.
In the same article by Open Doors Therapy, Doctor Tasha Oswald mentions how symptoms of autism are different in men and women. Girls with autism are quieter and are often perceived as shy—this behavior carries on into adulthood. Doctor Oswald also brings into mind the gender roles ever-present in our society: how women are expected to be quiet, polite and have good manners.
Women with autism are often taught at a very young age to hide their “disruptive” behavior and trained to be obedient and introverted. Learned behavior is difficult to shake. When women carry this behavior into adulthood, it leads to a late diagnosis and negative impacts on their life that eventually pile up.
The disparities in the health system continue to impact women, delaying diagnoses and allowing doctors to dismiss the concerns of women who seek help. Many women often go their entire lives fighting against symptoms of autism and never receive the help they need. There is no need to learn to live with autism alone, yet most women are left to do so.
Creating organizations that are dedicated to autism awareness is the first step to changing doctor’s offices and diagnostic clinics, and still some organizations are not trustworthy or reliable. This leaves many to wonder what truly is the first step towards change.