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Wednesday, December 4, 2013

Understanding the Gender Gap: Autistic Women and Girls

From The Autism Women's Network

By Cynthia Kim, AWN Contributing Writer
November 20, 2013

It's common to hear that autism presents atypically in women and girls. This isn't surprising, since the original models for autism and Asperger's syndrome (AS) were largely based on studies of boys. Leo Kanner, the child psychiatrist who coined the term early infantile autism, based his model on a study of eight boys and three girls. Hans Asperger, for whom Asperger's syndrome is named, developed the AS model using case studies of four boys.

The core diagnostic criteria used today are little changed from the original autistic traits identified by Kanner and Asperger. Is it time to update these male-based models to account for how autistic traits typically present in females?

With the latest round of DSM updates just completed, we aren't likely to see a revision to the diagnostic criteria for autism any time soon. However, clinicians are increasingly recognizing that girls and women do present differently, and they're taking it upon themselves to create an ad hoc model in their daily practice.

I got a firsthand view of this when I arrived for my follow-up appointment with the neuropsychologist who diagnosed me. On his computer, he'd cued up a PowerPoint presentation about how autism presents different in females. On his desk he had a stack of books to share with me, including Aspergirls and Pretending to be Normal, both of which are authored by autistic women.

The idea that autism looks different in females wasn't new to me. I remember coming upon Rudy Simone's list of female Asperger's characteristics early in my research. While there was much on the list that I identify with, it appears to be based more on anecdotal observations than empirical research.

For example, there is no hard evidence that 90% of autistic women have gastrointestinal difficulties and I know more than a few autistic women who, counter to Simone's list of traits, are quite "girly" and have close friends in adulthood.

While it can be hard to accurately develop a narrow list of traits like Simone's, recognizing broader trends can be a helpful strategy in diagnosing autistic girls and women more accurately. Some of the most commonly accepted ways in which females differ from the traditional diagnostic model include:

  • Special interests look different in females. Autistic boys tend to have "odd" special interests like outhouses or stop signs. The unusualness of their interests sends up a red flag. In contrast, many girls develop a special interest that is similar to the interests of their peers: dolls, music groups, horses, books. However, the intensity or depth of an autistic girl's interest is different from the way her peers engage with the same subject. An autistic girl may be more interested in collecting or cataloging information about her passion, she may develop an unusual depth of knowledge for her age, or she may spend an unusual amount of time pursuing one interest, to the exclusion of other activities.
  • Girls and women often have active imaginations. There traditional model of autism suggests that autistic children engage in unimaginative play and lack the ability to create imaginative scenarios. While we're learning that this is probably inaccurate for most autistic people, females in particular seem to have richer imaginations than the model suggests. Many autistic girls use imagination as an escape from reality. They may have highly developed inner worlds, enjoy reading and/or writing fiction, and engage in complex imaginative play, sometimes with imaginary friends. They may also act out scripts from literature, movies or television shows, giving the impression of imaginative play to onlookers who are not familiar with the "source" material.
  • Autistic girls may be more verbal or hyperlexic. There is little observed difference in the timing of speech acquisition among autistic girls and boys; however, girls may be more developed linguistically than their male peers. They may also be hyperlexic, learning to read at a very early age and/or becoming fast, voracious readers.
  • Girls and women may be better at faking social interaction through imitation. In general, girls are expected to be more socially skilled than boys. Many autistic females appear to learn masking techniques early in life, imitating social skills in a way that allows them to slip under the radar. They may not be good at social interaction, but they learn how to create the illusion that they are. Some girls become good actresses, learning a set of socially appropriate scripts by copying other girls. Others adopt a quiet demeanor, taking on the role of the good girl who is just a bit shy for her age.
  • Autistic girls and women often have friends. However, those friendships often fit a particular model. Many autistic girls and women have one or two close friends. Often those friends are people who are socially adept and willing to initiate social interaction, providing entree into wider social circles and mentoring the autistic individual in the more complex aspects of social interaction. In childhood, parents may inadvertently mask their autistic daughter's difficulties with making friends by arranging friendships. In adolescence, however, autistic girls are more likely to be victims of bullying than typical girls.
  • Autistic girls and women often enjoy socializing. Contrary to the stereotype, many autistic women seek out and enjoy social interaction, especially one-on-one or in a small group. However, social interaction often comes at a high cost, requiring a long recovery time. Even activities we enjoy can lead to sensory overload or tax our sometimes limited energy resources.
  • The social difficulties of autistic females may be more difficult to spot. Because they seem to be more adept at developing social coping skills, the social deficits that girls and women struggle with may only appear in certain situations. For example, an autistic girl might easily form friendships with older or younger girls but struggle to relate to same-age peers. Or a woman might feel quite comfortable in male-dominated environments but struggle to form friendships with female peers.
  • Coexisting conditions are common in autistic females. Many autistic females also experience depression, anxiety, obsessive compulsive tendencies, eating disorders, and selective mutism at some point in their lives. These coexisting conditions can further cloud the diagnostic process.

In developing his model, Asperger described autism as an "extreme variant of male intelligence." This theory still haunts us nearly seventy years later as researchers pursue concepts like the "extreme male brain theory" to explain the role of gender in autism.

These avenues of research do more to harm than help autistic females. If an individual doesn't fit the extremely logical thought model put forth by these stereotypical constructs, they are less likely to be diagnosed.

Autistic girls and women are better served by clinicians recognizing the very real ways in which autism presents differently in females. Autistic girls learn early in life that they are different in a socially unacceptable way. Ill-equipped to navigate a world that expects females to be naturally socially adept, they set about learning social rules through imitation and channeling their autistic traits into behaviors that make them less visible.

A diagnostic model that encompasses the varied ways in which autistic traits can present across the genders would go a long way toward reducing the invisibility of autistic girls and women.

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