by Dr. Allison Kawa
Autism Spectrum Disorder or ASD is an umbrella diagnosis used to encompass a very large range of symptom constellations that include problems with social communication (i.e., the social use of verbal and nonverbal language) in addition to interests that are overly intense or odd, sensory processing problems, and/or behaviors that are stereotyped and repetitive. Current estimates suggest that 1 in 54 individuals is autistic, with boys outnumbering girls by about 4 to 1 by some counts. However, the rate of diagnosis for girls and women is outpacing that of their male counterparts as we begin to understand more about how autism looks different between the sexes.
Special interests, or SPINs, are the deep passions known as circumscribed interests in our diagnostic criteria. They are the topics that autistics like to monologue or infodump about and can be all encompassing in their intensity. Autistic girls and women often have “gender appropriate” SPINs such as animals, nature, anime, fantasy fiction, fashion, make up, and art, that do not necessarily raise red flags the way more prototypically male SPINs (e.g., train schedules, baseball statistics) might. Autistic females may obsess over fan fiction, seashell and eraser collections, or K-Pop bands in ways that are more intense than their peers, but not alarmingly so. On the other hand, there are plenty of autistic females who have little interest in what is popular or fashionable and seem immature, “tomboyish”, or out-of-sync as a result.
About 15% of autistics identify as transgender or nonbinary, and the percentage is higher among people assigned female at birth than those assigned male. Additionally, about 70% of autistics identify as LGBTQIA+ versus 30% of neurotypicals. Research into the relationship between autism and gender identity is just emerging, and there are many theories about why the rates of gender fluidity are higher in autistics. These include decreased conformity to societal norms, the role of sex steroid hormones during prenatal development, and gender role behavior or the connection between one’s interests and gender identity. For example, autistic girls who have traditionally masculine SPINs could identify as gender fluid since they love “boy” things.
Our diagnostic guides tend to emphasize self-stimulatory behaviors, or stims, that are readily apparent in autistic boys. Clinicians are trained to look for jumping, rocking, and hand flapping, but they often miss subtler stims that we see in girls like hair twirling, skin picking, skipping, or dancing about. Play skills during early childhood also differ between the sexes. Autistic boys are more prone to repetitive behaviors (e.g., lining up their toys) or interest in parts of toys while girls often appear to have typical imaginary play. A trained eye might notice, however, that autistic girls tend to set-up elaborate scenes but not actually play with them, or re-enact specific play scenarios rigidly instead of creating an imaginary world and inviting others to join them or add to the ideas. Later in childhood, autistic girls might escape into their imagination or pretend worlds as a way of coping with stressful social demands.
Little Miss Manners
Girls in our culture are socialized to be “ladylike,” follow rules, be quiet and calm, and avoid conflict. This implicit (or explicit) training can lead autistic girls to have functional social behavior, which makes them more likely to blend in with their agemates, especially during childhood. Still, autistic girls tend to be on the fringes of peers groups, flitting between joining play with other girls and solitary play. Social norms and gender stereotypes are much more tolerant of this shyness and reserved behavior in girls versus boys, so it can go unnoticed by teachers and parents. Other differences in social behavior may be biological, although we are still learning about how female brains differ from male ones. Regardless of why girls and boys have different social profiles, it is important that we know how they are different. Many autistic females have subtle problems in their social behavior that are more qualitatively along a rigid spectrum than an odd one. In childhood, they might seem bossy or controlling on one extreme or more like a passive follower on the other. This is in contrast to autistic boys, who are more likely to engage in overtly awkward or unusual social behaviors.
It is not unusual for parents to say that their autistic daughters always seem to have friends, but that they seem to have a new friend every school year. Autistic girls may be possessive of their friends, having trouble if their friend wants to play with other children. These girls can be at a loss when their sole friend is not available, such as if they are absent from school, and may isolate rather than initiate play with a different friend. When these friendships are examined more carefully, it is evident that they are not truly reciprocal or that only those friendships formed at a very young age are maintained over time. Autistic females, and especially those who are undiagnosed, can find it hard to develop new friendships unless they have a peer group that shares their SPINs.
Without a neurodiversity-affirming diagnosis and support, autistic females might experience social isolation and rejection. The repeated experience of being ostracized by peers often morphs into rejection sensitivity, a neurological phenomenon involving intense, overwhelming emotional responses to real or perceived rejection. This extreme emotional sensitivity leads to low self-esteem and increased social withdrawal. Responses to the overwhelming sense of being purposefully excluded can trigger a range of emotions from intense rage and aggression to irrational fear to frantic people-pleasing. Unfortunately, our diagnostic tests and tools are often not sufficiently calibrated to identify autistic girls and women, which results in delayed diagnosis and misdiagnosis, especially if there is no intellectual or language impairment. In fact, 42% of women with autism are misdiagnosed because they are inadvertently masking the root of their difficulty.
Camouflaging and Masking
There is a common misconception that autistic people lack social interest when in truth, many are quite sociable. Autistic girls and women are often socially-motivated but find the nuances of socializing to be confusing, as though everyone has a copy of a secret rule book that they do not have. To compensate, they consciously and methodically observe other people in their environment, online, and on television or in movies, and then mimic those behaviors to try and fit in. Some autistic girls and teens do their best to imitate the popular girls. In this way, autistic females learn to force eye contact, control the impulse to infodump about their SPINs, and say the polite or “correct” thing. When out in the world, autistic women and girls work hard to suppress their stims and find ways to tolerate clothing that can feel unbearably itchy or tight. They are often aware that they are different from their peers and can be quiet, shy, or socially self-conscious as a result. Understandably, the emotional burden of such conscious efforts to live inauthentically makes autistic girls and women especially vulnerable to stress, mood swings, emotional outbursts, and a host of co-occurring psychiatric problems.
Autistic girls and women who have no cognitive or language impairments seldom come to the attention of professionals until the demands of their environment exceed their ability to compensate. They mask and camouflage in public, but then come home and have age inappropriate meltdowns or shutdowns that parents assume does not warrant a closer look since their daughter does just fine out in the world. This can delay diagnosis even longer, especially among well-meaning professionals who lack adequate training in the subtler presentation of autistic females. Co-occurring difficulties like attention-deficit/hyperactivity disorder (ADHD), anxiety, and depression can overshadow the underlying autism when problems first arise. Families end the evaluation process thinking they have answers, but the true root of the problem remains buried. Without truly understanding the inner experience of the autistic girl, she is inadvertently set up for chronic difficulties throughout her development. It is not unusual for autistic women to be diagnosed with multiple disorders before autism is finally identified. This frequently includes social anxiety disorder, bipolar disorder, borderline personality disorder, ADHD, obsessive-compulsive disorder (OCD), depression, and anxiety. Autistic teens and women are also more likely to have a history of self-injury, be the victim of bullying, and develop substance abuse problems; 20% of anorexics are also autistic. Autistic females are vulnerable to making risky choices in an attempt to curry favor with others, which can expose them to abusive or unsafe situations and relationships.
Helping Our Girls Thrive
It is far too common for autistic females to be diagnosed late in life after receiving a laundry list of other labels. Even as we are getting better at recognizing signs of autism in girls, diagnosis continues to happen much later than for boys. It is important that we prevent autistic girls from slipping through the cracks because then we can avoid the snowballing of negative outcomes and the trauma that comes from years or decades of feeling like one’s authentic self is not good enough or broken in some way. Importantly, many of the diagnostic criteria we have for autism can be positive traits when viewed as such. The flipped side of rigidity is persistence, restricted interests are truly one’s passions, and someone who has a high need for sameness is likely a very organized, predictable person. By ensuring that autistic females have access to neurodiversity-affirming providers and environments, we can nurture and empower them to embrace their differences and channel their strengths and passions into happy, meaningful lives.