Please note: In this post I use the term “female” to reference and respect the inclusion of individuals socialized or identifying as girls/women regardless of their assigned gender at birth.
Gender biases in autism diagnosis
Autism is a developmental disorder that is marked by two kinds of behaviors: deficits in communication and social skills, and restricted or repetitive behaviors. Children with autism also often have sensory processing issues. However, gender stereotypes may get in the way of recognizing patterns of behaviors that fit the diagnosis. For example, boys may focus on sports statistics or equipment. Meanwhile girls might have excessive interest in horses or unicorns, which is more gender-conforming for girls. It’s the level of the interest that might be missed and may not be quite as obvious to an untrained eye. What may also be missing in the diagnostic process is an important subjective dimension – the lived experiences of our clients that informs how they are to be treated. Professionals have also come to realize that many “higher functioning” autistic girls are overlooked or diagnosed late because they don’t fit the stereotypes, or their symptoms are misinterpreted as something else. In fact, according to a 2005 study at Stanford University, autistic girls exhibit less repetitive and restricted behavior than boys do. The study also found brain differences between autistic boys and girls help explain this discrepancy.
Is it a hobby or is it a restricted interest?
These interests are qualitatively different from a hobby in several ways. First, restricted interests may be used to make sense of the social world more than hobbies. For example, by repeatedly watching a specific TV show, studying the characters and how they behave with each other can be part of learning about real-life social interactions. In other words, there can be a significant difference in purpose between restricted interests and hobbies. There can also be significant difficulty disengaging or transitioning away from these preferred interests, compared to hobbies.
Sometimes coping skills get in the way.
Another reason diagnosis can be difficult is that many autistic people, especially females, learn to cope with their neurology. Autistic females appear to be more socially able and more socially motivated than autistic males. Because of this, they tend to study and copy social interactions, learn how to fit in, and camouflage more typically autistic behaviors in many situations. Because these women are essentially faking neurotypicality, it can be very draining and lead to feelings of anxiousness and depression.
The role of “theory of mind” in diagnosis
The concept of “theory of mind” (i.e., understanding that others can have different perspectives than one’s own) and the role that it plays in diagnosis has evolved. Newer research has shown that autistic children do have theory of mind. However, they may not recognize that they need to use information they have about someone’s perspective. Or, the perspective-taking skill may develop later in life. Because autistic females are socially motivated, they tend to have very good perspective-taking skills. Autistic females may actually overcompensate, have a superior theory of mind, and develop intuition to protect themselves from repeated social rejection.
The potential for misdiagnoses
Because of the impact of the mental juggling and related academic and social difficulties, autistic individuals can demonstrate periods of extreme moodiness. The “all or nothing” or “black and white” thinking that is characteristic of Autism often plays out in the social relationships of females. They can range between intense interest and focus to social withdrawal. Specifically, autistic women are often misdiagnosed with Bipolar Disorder or Borderline Personality Disorder, in part because of the intensity of the mood changes. The desire for routines and sameness can be misdiagnosed as Obsessive Compulsive Disorder (OCD). In addition, autistic people may have significant difficulty with executive functioning and avoiding non-preferred topics or tasks. Children often get a preliminary diagnosis of Attention Deficit/Hyperactivity Disorder (ADHD) only. Several of these diagnoses can co-occur with an Autism diagnosis or they can be distinct conditions. Accurate identification can be the game-changer from feeling “defective” to viewing themselves as quirky and sensitive people.
Missed opportunities for intervention
Depression, anxiety and loss of self-esteem are just a few of the heavy costs of a late or missed diagnosis. Early efforts at skill-building or behavior therapy is another loss along with missed opportunities during peak periods of brain development to get academic, functional, and social support in school.