Why Girls are Missed for Diagnosis and Why That’s so Important
In the autism community, the prevailing idea is that boys significantly outnumber girls on the autism spectrum. Common estimates suggest that the boy: girl ratio is 4:1. Recent studies have found that, in fact, there are more girls on the spectrum than previously recognized, with current estimates of the boy:girl ratio ranging from 3:1 to 2:1 (Loomes et al., 2017).
Research suggests that girls frequently aren’t diagnosed with autism even when they have more severe autistic traits than boys. “Gold standard” measures like the ADOS are found to miss girls as well (“Editorial”, 2017). Often, girls aren’t diagnosed until adolescence or even adulthood.
How are so many girls missed?
When researchers and clinicians picture someone on the autism spectrum, they often impose a male bias without even realizing it.
The stereotype is of a “nerdy” boy who uses pedantic speech, has odd interests like train tables, and is inappropriate socially. Women diagnosed later in life report they were told they couldn’t be autistic because they didn’t look like Sheldon on “The Big Bang Theory.”
Autistic girls without intellectual impairment who speak fluently can appear typical. They don’t have the usual symptoms, and to adults, they can appear to be socially engaged because they are around other girls. ‘However, they may not truly be engaged in reciprocal social relationships. These girls might be seen as quirky, but they’re assumed to be “normal.”
According to DSM-V, one diagnostic criterion for autism is repetitive behavior. Girls often don’t have as many (or any) repetitive behaviors. Girls may have trained themselves to avoid unusual behavior like “stimming.” Another kind of repetitive behavior may be an intense interest; autistic girls’ interests can seem unremarkable and gender-appropriate; they are doing things that girls normally do (“Editorial,” 2017). They might be interested in art, reading, animals, or even fashion. Because of this, girls may not meet the criteria for repetitive behavior.
The other DSM-V criteria have to do with a lack of reciprocal social behavior, which usually results in a lack of social relationships. Girls can seem social to the untrained adult eye, although peers usually sense that autistic girls are different. Boys typically engage in large group activities like sports, so an isolated boy is obvious.
Girls’ groups are smaller, and girls move around between groups (Dean et al., 2017). Autistic girls can be among the girls in these groups without actually fitting in or being accepted. An autistic girl might be in the jump rope game, but she might only be allowed by other girls to hold the rope.
Girls often train themselves to mimic social behavior; they may do it without realizing what they’re doing. They may make eye contact, use facial expressions, and have a strategy like telling stories to continue social interactions. They can have friends and are often extremely possessive of one good friend.
Autistic women refer to this mimicry as “masking” or “camouflaging” and report that keeping up a social mask can be exhausting and stressful. They smile whether or not they felt like smiling, engage even when they don’t feel like engaging. Adults often report that they felt that their real selves would be unwanted and rejected. A result of constantly being inauthentic was that they forgot what it felt like to be authentic.
Although the key diagnostic behaviors of autism may look different and not meet diagnostic or research criteria, girls with autism still have many autistic traits. They may experience hypersensitivity or hyposensitivity (Leekam et al., 2007) and have other cognitive characteristics like inflexibility, rigid thinking, a need for sameness, and difficulty with changes.
Like boys, girls with autism are usually detail-oriented and literal thinkers. Each child with autism looks different, so girls can and will look very different from each other. There is no completely “typical” autistic girl; she will usually have some quality that is unexpected and seems to rule out autism.
Why is it important that girls with “high-functioning” autism are diagnosed? Girls whose behaviors aren’t connected to autism are misunderstood, labeled, and blamed. A girl’ssocial challenges may be perceived as “having an attitude” or as rudeness. If an autistic girl is truthful and tells a teacher that an assignment doesn’t make sense, she is seen as oppositional and attention-seeking instead of honest about missing social rules.
If she avoids noisy situations, she can be seen as uncooperative instead of as having auditory overload. If she refuses to put away work on an interesting activity to shift to another subject, she’s seen as defiant and not as having difficulty with transitions. If she’s literal and gets out a book but doesn’t start working in it when the teacher only says “Get out your math books”, she’s seen as inattentive or unmotivated.
If she “melts down” when she’s overstimulated, she might be called manipulative; if she shuts down, she can be called avoidant. Confusion about never being able to fit in and the steady stream of criticism they receive can have a very negative impact on self-esteem. Girls often develop a self-image of being inadequate and rejected.
Mental health professionals make the same mistakes. These girls collect diagnoses like ADHD (which may actually be a comorbid diagnosis, or simply inattention to topics that aren’t of interest), ODD, OCD, anxiety disorder or depression (not uncommon co-morbid diagnoses with autism, but the anxiety or depression can be secondary to being misunderstood, criticized and judged) and even borderline personality disorder (for black and white thinking and emotional meltdowns when overloaded).
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Girls are expected to want to please others to a much greater extent than boys; autistic girls who don’t conform to this gender stereotype are especially vulnerable to judgment by schools and families.
They may be accused of lacking empathy or sensitivity when in fact they are much more empathic, sensitive and deeply distressed by negative events or situations than neurotypical children. They can be emotionally overwhelmed, which can lead them to withdraw or to escape into a preferred activity or daydream.
The typical autistic child’s naivety and truthfulness make it difficult for girls to understand manipulation, disloyalty, and insincerity, which are unfortunately hallmarks of girls’ groups at a certain age. These autistic girls can be manipulated and conned.
Their lack of social understanding can leave them the target of bullying in the same way boys are, and bullying by girls can be more subtle but equally devastating to a sense of self-worth. Girls may be blamed for being bullied because of their failure to follow “appropriate” behavior.
As girls become adolescents, normal sexual development can be confusing and even overwhelming. They may not understand or accept the changes in their bodies and the changes in hygiene required as a result. Girls are usually educated about behavior such as flirting and sexual behavior in peer relationships, so autistic girls may miss information about sexual norms and safety.
Their desire for acceptance and friends can leave them vulnerable to sexual abuse and manipulation, so education about sexual behavior is critical. Autistic adolescent girls might not conform to notions of femininity and feel defeated at fitting in with other girls. Experiencing themselves as unfeminine, girls may question their sexual identity and express gender confusion (Ballan & Freyer, 2017).
A word about “high-functioning:” the idea that these girls look normal and may have normal or better levels of achievement can lead others to think that they have “autism-lite” and don’t need support. Their autistic traits can be as severe as those experienced by boys.
The impact of sensory, cognitive, behavioral, and social demands can be overwhelming, leading to anxiety and depression. As with any child with autism, these girls need necessary accommodations for sensory issues, difficulty transitioning, and literal understanding so that it is less stressful to navigate daily life.
A parent who realizes a daughter might be autistic can make an enormous difference by understanding her behavior and providing a safe, accepting environment. Advocating for understanding in school can be challenging since the daughter is performing adequately in her academics while her behavior is being blamed on her attitude and motivation.
It can be challenging to find a mental health professional who recognizes autism in these girls for the reasons I’ve described. The Aspergers Autism Network (AANE.org) is an excellent resource for finding clinicians and for excellent helpful webinars.
Autistic girls have qualities that will be incredible strengths in life. They tend to be deep thinkers, seeing things at multiple levels. Their interests and perseverance will lead them to develop high levels of skills; their ability to observe details will lead them to have insights others miss.
They will be more successful and self-confident if their behavior and confusion are understood. Alleviating constant judgment and criticism is essential to their well-being. Masking in some situations for desired outcomes can be appropriate, but it can be devastating to feel they have to constantly be inauthentic and “pretend.” They can understand, value, and accept themselves when they are understood and valued and loved.
American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders: Fifth Edition. (2013). Washington, DC: American Psychiatric Association.
Ballan, M. & Freyer, M (2017) Autism Spectrum Disorder, Adolescence, and Sexuality Education: Suggested Interventions for Mental Health Professionals Sex Disabilities 35:261-273
Dean, M., Harwood, R. & Kasari, C. (2017) The Art of Camouflage: Gender Differences in the Social Behaviors of Girls and Boys with Autism Spectrum disorder Autism, 21(6), 678-689
Editorial (2017) Towards Sex- And Gender-Informed Autism Research Autism 2 (6), 643-645
Leekam, S., Nieto, C., Libby, S., Wing, L. & Gould, J. (2007) Describing the Sensory Abnormalities of Children and Adults with Autism Journal of Autism Developmental Disorders 37, 894-910
Loomes R., Hull L. & Mandy W. (2017) What is the Male-to-Female Ratio in Autism Spectrum Disorder? A systematic Review and Meta-Analysis. Journal of American Academy of Child and Adolescent Psychiatry 56(6), 466-474. doi: 10.1016/j.jaac.2017.03.013.
This article was featured in Issue 103 – Supporting Emotional Needs