Diagnosing Asperger’s In Women: The Invisible Dilemma

For a variety of reasons, women with Asperger’s often do not receive an accurate diagnosis.

Studies show that women with Asperger’s are diagnosed less frequently than men and thus less likely to get the help they need. They require more severe symptoms, greater behavioral problems, and more overall evidence of Asperger’s than men, even though the diagnostic criteria for both sexes are the same.

Why is this? It’s possible there are actually two forms of Asperger’s, one specific to men, the other to women. As of yet, however, this hypothesis has not been confirmed. Women are also more motivated to engage socially and have a greater capacity for friendships, both of which are in conflict with the standard notion of Asperger’s. They are less likely to have the typical kinds of behaviors associated with this condition such as hyperactivity, impulsivity, and reduced concern for others. And they more vulnerable to anxiety, depression and eating disorders, conditions that are not considered diagnostic features of Asperger’s.

Themes of Asperger’s in Women

Several themes are common among women who seek a professional evaluation for Asperger’s. Some are told they don’t have it even when the evidence suggests otherwise. Their concerns are minimized or dismissed because of an inherent reluctance among professionals to diagnosis women who have average social skills. Quiet, compliant behavior in women is seen as socially acceptable and thus not within the parameters of Asperger’s.

Many women on the autistic spectrum grow up learning strategies to cope with being seen as “different,” one strategy being an attempt to mask their differences and instead appear normal. They learn to mimic what is successful in social situations, studying people’s behavior and adopting them as their own.

For some women, adopting social gender stereotypes of sociability, such as peer friendships, engagement in face-to-face relationships, passive behavior, sacrificing individual identity for group acceptance, is not desirable. Instead of following common social norms, they define themselves in ways consistent with their personal, individual interests.

Social Challenges

The challenges of being a woman with Asperger’s don’t necessarily come from their specific Asperger’s features but from how those features play out in a society that has specific expectations for females. They experience a conflict between their desire to accept who they are as someone with Asperger’s and pressure to fulfil traditional gender roles. For example, some find their desire to live as a woman with Asperger’s incompatible with expectations that they adopt the roles of wife, mother, caretaker, and/or girlfriend. The challenges they face are societal rather than those specific to Asperger’s. Some turn away from identifying with their assigned gender or from a binary gender identity, preferring instead to accept alternative identities more in line with who they see themselves to be.

The Challenges of a Diagnostic Evaluation

Asperger’s in women is more likely to be identified late, misdiagnosed, or not diagnosed at all. Those women who are especially invested in and skilled at masking their Asperger’s are at greater risk of having their condition undetected, even by experienced, skilled professionals.

Women who tend to turn their challenges inward (anxiety, depression) rather than outward (hyperactivity, misbehavior, oppositionality) are also at risk for being misdiagnosed.

Many professionals have a bias, conscious or unconscious, that women can’t have Asperger’s. This is a significant source of diagnostic error. Some diagnosticians see Asperger’s as not encompassing more subtle, female-typical presentations. The same is common among people who are not specialists in Asperger’s but are nevertheless influential in directing women towards obtaining an Asperger’s diagnosis and services.

The overall picture is one where women often do not receive accurate diagnoses and the corresponding help and services they deserve. More attention must be paid to ensuring that both accuracy and care are provided for those deserving of knowing whether or not they have Asperger’s.

Dr. Kenneth Roberson is an Asperger’s psychologist in San Francisco with over 30 years of experience. To ask a question or schedule an appointment, please call 415-922-1122.