Autism Diagnoses in Adult Women Are on the Rise. Please read to understand about ASD, though it is a long article.
Autism—a neurological and developmental disorder that impacts communication, learning, and behavior—is being discussed (on podcasts or via neurodivergent influencers or hashtags) and diagnosed more than ever before. Today, 1 in 36 children receive an autism diagnosis, and rates of diagnosis were up 175% between 2011 and 2022, specifically rising in girls and women, according to a recent JAMA study. Females are also more likely than males to be diagnosed at a later age.
SELF spoke with researchers, clinicians, and advocates to understand the uptick in diagnoses of autism in adult women—plus, what everyone needs to know about the often misunderstood condition that more people are seeking a diagnosis for.
First, a few things about autism
The Diagnostic and Statistical Manual of Mental Disorders (DSM)—the standard guidebook of mental health conditions—has defined autism differently throughout the years. While the definition included in the DSM-IV in 1994 listed out five different forms of autism, including one type called Asperger Syndrome, in 2013 the DSM-5 combined these forms into one single term: autism spectrum disorder (ASD), recognizing that autism can vary greatly in terms of severity, presentation, and symptoms.
The diagnostic core of autism comes down to differences in social interaction and communication, James McPartland, PhD, director of the Yale Developmental Disabilities Clinic and the Yale Center for Brain and Mind Health, tells SELF. Autism is also a developmental disorder; to meet a diagnosis, differences have to have “been there from the beginning of the story.” Signs of autism typically appear during infant and toddler years, though some of the subtler differences can be missed at this time. The American Academy of Pediatrics (AAP) recommends that all children be screened for ASD at their 18- and 24-month well-child visits.
There’s no known single cause of autism. Over the years, experts have found that differences in brain structure or function, genetic variations and mutations, and medical complications (e.g. extreme prematurity, oxygen deprivation at birth, and certain maternal health issues) all seem to play a role. The genetic link seems to be particularly strong: For example, research has found that in identical twins, the chance of both babies having autism is 98%; in fraternal twins, the rate is 53%. And there’s a significantly higher chance a child will have autism if an older sibling has it—the numbers range quite a bit, with research suggesting younger siblings have anywhere from an 8- to 30-fold increase in risk. (Numbers are hard to nail down considering having a first child with ASD can influence parents to not have additional children.)
A growing area of research focuses on the interaction of genetic and environmental factors—for example, the combination of a genetic predisposition combined with exposure to a harmful contaminant in the womb. As for a possible link between vaccines and autism? “Much research has ruled out the idea that something in a vaccine could cause autism,” says Dr. McPartland. (Including any shots containing a mercury-based ingredient, according to the National Institute of Environmental Health Sciences.) “There have been strong epidemiological studies that indicate that’s not the case."
Why more women are being diagnosed with autism
Increased diagnostic rates of autism in adult women don’t necessarily reflect changes in how many people are being born with autism; rather the more likely explanation is that more people with autism—adults included—are being detected.
I don’t think there’s an epidemic [of women being diagnosed with autism],” Catherine Lord, PhD, a professor of psychiatry at the David Geffen School of Medicine at UCLA and codeveloper of the assessment tool known as the Autism Diagnostic Observation Schedule (ADOS), tells SELF. “I think we’re just getting better at identifying people, and people are also seeking this diagnosis, which they wouldn’t have 50 years ago.”
Megan Anna Neff, PsyD, a psychologist and founder of the educational platform Neurodivergent Insights, was diagnosed with autism as an adult after seeking a diagnosis for her child; a common path, she says. (It’s a topic that comes up a lot on Reddit.)
With profound autism—severe intellectual disabilities or being non-verbal, for example—girls may be slightly more likely to meet autism criteria, but on the other end of the spectrum there hasn’t been a great understanding of what autism could look like in females. For example, autistic girls tend to be more verbal, Wendy Ross, MD, director of Jefferson’s Center for Autism and Neurodiversity and advisor for the Autism Society, tells SELF. This could ultimately influence whether a young girl fits the diagnosis based on standard screenings for the disorder.
Long before the ADOS-2—the updated version of the ADOS that is often considered the gold standard tool for autism diagnosis—was commercially available in 2001, “the tools that we were using weren’t looking for people that were verbal,” Dr. Ross says. They also weren’t really looking for girls. “Typically boys are more commonly affected by almost all neurodevelopmental disorders,” Dr. Lord says. “People just had this preconception that it didn’t happen in girls.”
Additionally, most medical research in autism has been done in children—specifically white boys, says Dr. Ross, and ASD has generally been shown to be nearly four times more common in boys than girls. Boys also may have more overt, easily identifiable behaviors that point to autism, such as flapping or looking out of the corner of their eye, Dr. Lord says.
Yet missing autistic women may also come down to societal norms and expectations, Maura Sullivan, CEO of The Arc of Massachusetts, a group that works to enhance the lives of people with intellectual and developmental disabilities and autism, tells SELF. “We really teach girls from a young age to mask behavior that isn’t as ‘appropriate.’”
It’s well-reported that girls with autism—specifically those without severe intellectual disabilities and with high verbal skills, are more likely to have learned to “mask”—or watch a situation and almost role-play or adopt the behaviors of others—and perhaps be missed by diagnosticians because of it. Because of masking, theory of mind, or innately taking the perspectives of others—often impaired in people with autism—can also be easier to miss in girls, Dr. Ross says. (Struggling with theory of mind might look like not easily understanding that something you said hurt someone else’s feelings, but understanding it if the person explained to you exactly what happened.)
Other reasons girls may have been missed over time: Females are more likely than males to experience mental health conditions such as anxiety or depression, and people who have autism and a co-occurring condition such as anxiety or ADHD might be more likely to get that latter diagnosis versus an autism one, simply because those conditions are more widely understood.
Of course, increased awareness has also led to more autism evaluations and more diagnoses of autism in adult women, and while there are always exceptions, females also generally seek health care diagnoses and support more than men. While an autism diagnosis can present challenges, it is also arguably less stigmatized today, with many groups providing community and resources. The mere fact that people feel more comfortable seeking out and sharing a neurodivergent diagnosis could also contribute to the uptick in numbers.
What it looks like to be undiagnosed with autism in adulthood
While autism presents in all different kinds of ways, ranging from severe to differences that may go undiagnosed, Dr. Neff says there are many common threads in the experiences of autistic women. Going undiagnosed for so long can cause decades of confusion and difficulty for many people with ASD who don’t have this diagnosis as context for their behavioral tendencies and social interactions.
For one, many adult women with autism rely on sameness and routine for safety. “We can experience what feels like irrational irritability when plans change,” she says. “I might suppress that or if it shows up, it might be called rigid or rude.” Many women with autism also have a “confusing lifelong history around friendships,” she adds—friendships that have imploded with little understanding as to why, or a world where you may have just one friend at a time.
Dr. Neff says that before her own diagnosis, she didn’t know what to make of sensory sensitivities, which are common in autism. She says she’d always go to the grocery store at 7 a.m. right when it opened, to avoid crowds, only fully understanding the impact the sensory overload had on her after her diagnosis.
Dr. Neff explains that masking, scripting conversations in your head, and studying how people move through social spaces, and copying things is taxing. “It takes a lot of effort and feels very performative.”
Without a diagnosis, she says these differences can feel like character-based labels. “Until we have the right lens to see ourselves, it’s really hard to shed a lot of those.” To this extent, autistic women often face unique challenges in health care, including higher rates of anxiety, depression, eating disorders, and even suicide, delayed diagnosis, and a lack of understanding of their needs. These barriers contribute to health disparities, including inadequate care and untreated health conditions.
The path to an autism diagnosis
It’s clear that autism may be underdiagnosed in females and that the condition can present differently, but there’s no medical standardization like a blood test to diagnose it, so the path is not always straightforward—particularly for an adult. Dr. Lord notes that although the ADOS-2 has been adapted for usage in adults, it was never intended for an adult seeking a first-time diagnosis.
Also, there’s a lot of misinformation out there: For example, although the hashtag #autism has about 11.5 billion views on TikTok, only about a quarter of the information shared with it is accurate, according to a study published in The Journal of Autism and Developmental Disorders.
“There’s different kinds of expertise in diagnosing autism and there are different kinds of instruments that one could use,” Dr. McPartland adds. He says the loosest criteria might be going to a clinical office and being diagnosed; the most stringent might include a standardized clinical interview, a caregiver interview, and more. “All of these things are designed to be in alignment with the DSM-V.” But that variability can mean that perhaps ASD is being overdiagnosed or misdiagnosed in some situations and underdiagnosed in others. One study published last year found that about half of kids who were diagnosed with autism in a community setting (like a doctor’s office) didn’t meet autism diagnosis criteria according to an expert consensus. It’s an important datapoint because it suggests the disconnect in some of the ways that autism is being diagnosed in the community versus “by the book,” Dr. McPartland says, “acknowledging that some of these ‘by the book’ tools may reflect some of the sex biases described in the literature.”
All in all, Dr. McPartland says there’s “been a recognition that we have to look in different ways to recognize autism in girls” and that autism should not be diagnosed “in a vacuum,” meaning sex differences, environment, things like a caregiver interview or past history, as well as a clinician with deep understanding of child development and autism all matter.
Dr. Ross says she supplements autism screenings with her own clinical experience and the experiences of autistic women. “It’s only with experience and time that I’m better [at diagnosing girls],” she says. “I am sure, looking back, that there are girls I initially missed because the tools we were given were tested and normed on boys.”
A psychiatrist, psychologist, or neuropsychologist specializing in ASD usually makes an autism diagnosis, but if you’re seeking an evaluation and don’t know where to start, talk to your primary care provider, who can then refer you to one of these specialists. Dr. McPartland also suggests turning to an autism research center for a diagnosis. This will give you access to doctors who specialize in ASD and child development and who understand how autism’s characteristics might manifest differently between the sexes.
It’s all important—especially considering a proper diagnosis can also help a person prioritize their needs, learn their energy limits, provide context for past struggles, and ultimately help them better understand themselves, Dr. Neff says. “For me, getting a diagnosis of autism is what finally unlocked self-compassion.”
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