Hiding in Plain Sight: Diagnosis Barriers for Autistic Women and Girls
Boys are five times more likely to be diagnosed on the autism spectrum than girls. It’s easy to look at that statistic and assume that autism is more prevalent in males. But what if it’s simply diagnosed more often? The high frequency of late-diagnosed autism in adult women suggests that it’s more common in females than the childhood diagnosis rates imply.
Many autistic women don’t receive a diagnosis until they reach middle age. Those of us who are being diagnosed today in mid-life grew up during a time when Asperger’s was not yet an available diagnosis in the DSM. By the time we reached adulthood, we’d often mastered basic social skills, masking many of our autistic traits. It’s not until we learn about autism–often by chance, sometimes as part of researching a son or daughter’s diagnosis–that we have an aha! moment. Armed with our research, we set out on the road to confirming our suspicions, and eventually join the ranks of the late-diagnosed. That was my experience and I think it’s become the apocryphal late-diagnosis story.
Surprisingly, though, I’ve discovered that young women in their teens and twenties are often no better served than their mother’s generation when it comes to getting diagnosed. A system that is supposedly much better equipped to screen for autism than it was decades ago is still overlooking autistic girls.
Ellie, who was recently diagnosed at 19, first recognized autistic traits in herself at age 16:
“It took a considerable amount of work on my part to first get my parents agree to let me be diagnosed and second find a professional that worked with autistic people other than children.”
She finally obtained a diagnosis from a child-specialist who agreed to make an exception to the practice’s age cap of 18.
Other young women are less fortunate. Emily relates a string of missed opportunities that have resulted in her being without an official diagnosis at 26:
“As a kid, my first child psychologist was a barrier to diagnosis, as she felt that only boys got ASD and refused to refer me to a developmental psychologist. I was screened for ASD every year in my schooling and referred by the school for further testing every single year–referrals my parents blocked.”
Now, as an adult, the primary barrier to diagnosis is the high cost of a private evaluation.
In fact, one of the most commonly cited reasons for not getting diagnosed as an adult is the prohibitive cost of an autism evaluation, which can range from $1500 to $3000 or more in the US. While some women are successful in obtaining a formal or informal ASD diagnosis in the course of therapy, others eventually give up in frustration, often losing faith in the mental health system in the process.
Missed Diagnosis or Intentionally Shut Out?
There is a widely held belief that many women are simply “missed” by the mental health system because they’re more likely to develop compensatory strategies early in life. Ellie recalls how she was:
“constantly corrected from a young age–usually in terms of it not being ‘lady-like’ or being too aggressive or not being nice or polite enough.”
As a result, she says she started mapping out:
“correct” behavior early and in detail. “The types of behavior demanded were often that I be unnoticeable or compliant and this led to me learning how to downplay my autistic personality traits well.”
She attributes years spent in Summer Theater programs for her ability to project a persona in social situations, whereby further masking her autistic characteristics.
Many women have similar memories of childhood–either of being explicitly taught social rules or of learning to model the social behaviors of peers. Growing into adulthood, we often learn to hide in plain sight, suppressing our more obvious autistic traits while going through our days feeling as if we’re faking social interactions.
Often, women seek a diagnosis because they can’t escape the feeling that something is fundamentally wrong. Society expects women to have strong intuitive social skills. Many autistic women talk of their belief that one day they would “mature” or simply “get it.” When they reach adulthood or midlife and that still hasn’t happened, they begin looking for another explanation.
Unfortunately, by that point, many women have become so adept at passing that mental health professionals refuse to believe they’re autistic. Some clinicians still hold damaging stereotypes of autism when it comes to women and adults in general. Women who suspect they may be autistic are told by professionals that they simply can’t be on the spectrum because they are too social, make eye contact, have a sense of humor, are married, have children or are empathetic and caring.
In listening to the stories of other women, I’ve heard two common narratives. The one that fits my diagnosis experience is the story told by women who sought out or happened upon a clinician experienced in diagnosing autism in girls and women. In my case, I went to a practice that saw a large number of adults and was fortunate to be seen by a doctor who was familiar with how Asperger’s Syndrome (AS) presents in women.
Jo, who was diagnosed with Asperger’s at 48, took a more direct approach:
“Through the fabulous internet I found a female medical doctor, who is also on the spectrum, and went directly to her for a professional diagnosis, avoiding the [New Zealand] public health system.”
If anything, Jo says, her doctor’s bias was positive because she had extensive experience working with autistic girls and women.
Of the nineteen women I talked to for this story, six described positive experiences with seeking a diagnosis and five of them have been professionally diagnosed. The remaining thirteen women spoke of a variety of barriers to diagnosis, including gender bias. Even Jo, who was happy with her diagnosis experience later in life, recalled that when she first raised the possibility that she might have Asperger’s with a college lecturer who specialized in AS research:
“I was told a flat ‘no’. I was also told people [on the spectrum] avoided eye contact, whereas I am one of the (inappropriate staring) watchers, so I thought I must be wrong.”
Thirty-one years elapsed between Jo’s initial recognition of autistic traits in herself at 17 and her eventual diagnosis at 48.
Other women recounted similar stories. Lucy, who suspects she is on the spectrum, once raised the possibility with a psychologist, only to be told she was intentionally exhibiting autistic behaviors–that she was faking it. Discouraged and distrustful of doctors, she hasn’t sought a formal diagnosis.
Looking back, Nattily, who was diagnosed at 25, believes her autistic traits should have“sent up red flags” when she was 14. At the time, her psychiatrist diagnosed her with major depression, dismissing signs of autism as attention-seeking behavior.
The frequency with which professionals downplay or outright deny the possibility that female patients may be autistic is concerning. It suggests more than simply a case of missed diagnoses and raises the question of systemic bias against diagnosing autism in women and girls.
Why Diagnosis is Important
Some people–including some misguided mental health professionals–suggest that diagnosing adults is pointless. If autism is incurable and you’ve survived decades without a diagnosis, what’s the point of labeling something that you’ve always had and can’t do anything about?
This attitude overlooks the importance of identity, as well as the more practical benefits that a correct diagnosis can bring. Personally, the most important outcome of being diagnosed AS was finally getting an answer to the lifelong question of “why am I different?” Autistic has become an important part of my identity, giving me a starting point for understanding the unique way I experience the world.
In more practical terms, a diagnosis can open the door to supports and accommodations at work or school. It can prevent us from pursuing courses of treatment for conditions that we may not have or create a foundation for therapy or coaching, using strategies that work for autistic adults.
The earlier a person receives an autism diagnosis, the sooner they can begin accurately assessing their needs and taking steps to reduce the challenges they face in daily life. This can be especially important during transition periods like adolescence, early adulthood, and menopause, when some autistic traits often become harder to manage.
With the network of autism screening and early intervention programs in the US today, it’s easy to assume that the next generation of girls will be accurately diagnosed in childhood, but that may not be the case. The average age of diagnosis for children today is 4.5-years-old. However, in response to my question about possible gender bias, Christa mentioned that her 10-year-old daughter wasn’t diagnosed until age 7, “because she didn’t have the typical boy symptoms.”
It’s certainly an improvement when late diagnosis refers to a seven-year-old rather than a forty-year-old, but clearly we still have a long way to go in recognizing autism in girls and women.
About the author, Cynthia Kim.