Many women don’t consider an autism diagnosis for themselves until their children are diagnosed with autism and they begin to learn more about it. What they learn begins to resonate with their own struggles with similar challenges in their own childhood.
Happy Autism Acceptance Month! Did you know that many people’s idea of autism is that it only occurs in boys—who don’t make eye contact, who are obsessed with cars or trains, and who have superior intelligence? While that does describe some autistic people, it leaves out the wide range of experiences in the autism continuum. In this episode, Dr. Nanika Coor talks about the regularity with which autism goes undetected in girls until adulthood.
Project Parenthood is hosted by Dr. Nanika Coor. A transcript is available at Simplecast.
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Happy Autism Acceptance Month! This is a time to a time to uplift, affirm, and validate autistic voices, celebrate autism as a normal part of human diversity, reduce stigma, and promote more community inclusivity and accessibility to support all autistic people.
Did you know that many people’s idea of autism is that it only occurs in boys and men—white boys and men in particular—who don’t make eye contact, who are obsessed with cars or trains, and who have superior intelligence? While that might describe some autistic people, it leaves out the wide range of experiences in the autism continuum. In this episode, I’m talking about girls and women and autism, and how less likely they are to be diagnosed in childhood—often only learning of their diagnosis in adulthood. But being less likely to be diagnosed with autism isn’t the same as being less likely to be autistic.
Welcome back to Project Parenthood! I'm your host, Dr. Nanika Coor—clinical psychologist and respectful parenting therapist. Each week, I’ll help you repair and deepen your parent-child connection, increase self-compassion and cooperation from your kids, and cultivate joy, peace, and resilience in your relationship with them.
Many women don’t consider an autism diagnosis for themselves until their children are diagnosed with autism and they begin to learn more about it. What they learn begins to resonate with their own struggles with similar challenges in their own childhood.
Autism Spectrum Disorder (ASD) is a lifelong neurodevelopmental disability that involves, among many other symptoms, challenges in social communication, emotional awareness, restricted interests, repetitive and rigid behaviors, and sometimes sensory issues as well.
Autism can manifest in a variety of ways—hence the term “spectrum.” Autistic people and autistic characteristics range from individuals with unusually high intelligence and what might be called “eccentric” personalities (previously known as Asperger's Syndrome) to individuals who are non-speaking, and who might need intense therapeutic interventions, constant supervision, and lifelong personal care. Autism isn’t a disease—so it can’t be cured. But it is a situation in which social expectations for neurotypical behavior outweigh the person’s ability to perform those behaviors.
According to autistic blogger and educator, Samantha Craft, autistic traits in girls and women can look like being particularly naive, compassionate, and trusting. They might also engage in socially acceptable “stimming”—or repetitive movements that help a person regulate their bodies/emotions—like nail biting; and they tend to escape discomfort through imagination and daydreaming, being analytical, inquisitive, and having special interests.
Autistic girls may have heightened emotions, make too much eye contact, or have “high affective empathy,” which means it’s easy for them to form emotional connections. Also, their special interests may be more socially accepted than boys’ are.
Autistic girls also might be more likely to train themselves in social interaction by studying other people. Rather than preferring to play alone, as many autistic elementary-aged boys might—autistic girls tend to try to join in with non-autistic girls. They may stay close to the action and appear to be participating without actually participating.
Even though ASD girls/women may be good at mirroring behavior, internally they may be feeling frustration and grief that social interactions feel challenging or that they’re not able to easily communicate their emotions to others, or even about becoming overwhelmed over seemingly small and everyday tasks like washing dishes.
In the U.S., for every girl who is diagnosed with autism, there are four boys who are diagnosed. Males who show even mild symptoms of autism are diagnosed, on average, 2 years earlier than girls with the same symptoms—even though parents express concerns to medical providers about their child’s development at roughly the same time as males.
These differences are due to the way that autism has historically been studied, defined, and assessed. The tests used to diagnose autism are still primarily based on studies of white autistic boys, so it makes sense that girls and women—along with non-white children and adults—are underdiagnosed or go undiagnosed.
Out of fear of not fitting in and potentially being ostracized, autistic girls may hide their autistic traits and try to build friendships and social lives by artificially performing socially acceptable behavior—a coping strategy involving both conscious and unconscious practices called “masking.” An autistic youngster might use masking to avoid bullying or other negative social consequences. This might make it harder for physicians and psychologists to identify girls as autistic. Research shows that masking can cause anxiety, isolation, and burnout. It’s both lonely and exhausting pretending to be someone that you’re not.
Girls with co-occurring intellectual disabilities are significantly more likely to be given an autism diagnosis than autistic girls with typical cognitive abilities. In fact, when girls have a high verbal IQ, it delays diagnosis even further, more so than with boys. High IQ plus Western female socialization pressures plus autism may lead these girls, despite their disability, to be more skilled at using compensatory behaviors like masking to adapt to social situations—and thus go undetected more often.
And then, there’s the double empathy problem. This refers to the fact that neurotypical people and autistic people communicate equally well with other neurotypical and autistic people, respectively. But the two groups communicate very differently and have difficulty communicating with each other—hence, the double empathy problem.
So, as we’ve named—clinicians might not be looking for autism traits in non-male, non-white kids; ASD may present very differently in girls, and girls may be more prone to masking as a social coping mechanism, making them harder to detect. And the double empathy problem means that neurotypical clinicians may have difficulty communicating with autistic female patients and vice versa.
In families of color, greater social stigma might hinder people from even seeking a diagnosis in the first place. There’s this taken-for-granted notion that there’s such a thing as “normal” and that “normal” is the best thing to be. Since the stereotypes about autistic people are often negative, there can be a fear of negative judgments from family, peers, and the larger community.
For non-white folks, a variety of other reasons may result in fewer autism diagnoses as well. There may be less access to quality health care and/or racial bias in medical settings along with a historically- and contemporarily-informed fear and mistrust of medical providers. BIPOC families can have less access to well-resourced quality schooling. There might be less parental involvement because financial stressors necessitate parents working more than one job or a job that won’t allow them to take time off for parent-teacher meetings.
Because of ideas about what autism “should” look like, Black children are often diagnosed with autism 2 years later than white children—even though parents from all racial and ethnic backgrounds generally report concerns around 12 months of age. This is impactful because access to appropriate early intervention services requires a diagnosis.
In the Black and female autistic population, there is an increased rate of co-occurring intellectual disability, which is thought to be related to their overt symptoms and school performance more often leading to evaluation. Black female autistics with typical intellectual abilities likely fly under the radar or are misdiagnosed.
In general, autistic girls are often misdiagnosed with language, sensory, or anxiety disorders. In particular, Black autistic girls—even those that meet the full criteria for autism—are more likely to be misdiagnosed with severe behavioral conditions like conduct disorder or oppositional defiant disorder. These are disorders that are more likely to be criminalized or stigmatized and for which there is less school-based intervention than for autism.
Lack of early intervention due to delays in diagnosis can lead to higher amounts of stress for mothers of Black autistic girls due to having to teach difficult concepts like facial expressions and toilet training. And Black autistic girls are particularly vulnerable to non-consensual sexual encounters. Unfortunately, very little is known about Black autistic girls and women as they are almost entirely absent from the entire body of autism research.
Autism Acceptance Month is a time to remember that autistic folks aren’t failed neurotypical people—because autism is a part of the range of natural variation in human neurological development. Autism is a different way of thinking, and accepting that difference allows autistic people to have more genuine and authentic relationships.
If you suspect that you or your child may have ASD, seek a diagnosis so you can begin to understand yourselves, your experiences, and your brains in a new way. Remember that the more women and girls from all racial and ethnic backgrounds are diagnosed, the more research will be done regarding the differences in how autism is expressed along the gender continuum.
The more people are not only aware of but also accepting of autism, the more autistic people can unmask and be their authentic selves and show who they truly are.
Centers for Disease Control and Prevention. (2012). CDC’s autism and developmental disabilities monitoring (ADDM) network. Recuperado de http://www. cdc. gov/ncbddd/autism/states/addm_ fact_sheet_2012. Pdf.
Diemer, M. C., Gerstein, E. D., & Regester, A. (2022). Autism presentation in female and Black populations: Examining the roles of identity, theory, and systemic inequalities. Autism, 26(8), 1931–1946.
Houting, J. D. (n.d.). Why everything you know about autism is wrong | Jac den Houting | TEDxMacquarieUniversity [Video]. TED Talks. https://www.ted.com/talks/jac_den_houting_why_everything_you_know_about_autism_is_wrong?language=en
Matthews, M. S. (2019). Why Sheldon Cooper Can’t Be Black. Journal of Literary and Cultural Disability Studies, 13(1), 57–74. https://doi.org/10.3828/jlcds.2019.4
Samantha Craft’s Autistic Traits Checklist - My Spectrum Suite. (n.d.). My Spectrum Suite. http://www.myspectrumsuite.com/samantha-crafts-autistic-traits-checklist/
TEDx Talks. (2022, July 13). Unmasking the Stigma Behind Autism in Females | Emmy Peach | TEDxUGA [Video]. YouTube. https://www.youtube.com/watch?v=7KPK5sMar5w
TEDx Talks. (2021, November 1). Behind the Mask: Autism for Women and Girls | Kate Kahle | TEDxAustinCollege [Video]. YouTube. https://www.youtube.com/watch?v=Tbes1mm2VgM
TEDx Talks. (2021b, November 1). Behind the Mask: Autism for Women and Girls | Kate Kahle | TEDxAustinCollege [Video]. YouTube. https://www.youtube.com/watch?v=Tbes1mm2VgM
Houting, J. D. (n.d.). Why everything you know about autism is wrong | Jac den Houting | TEDxMacquarieUniversity [Video]. TED Talks. https://www.ted.com/talks/jac_den_houting_why_everything_you_know_about_autism_is_wrong?language=en
Samantha Craft’s Autistic Traits Checklist - My Spectrum Suite. (n.d.). My Spectrum Suite. http://www.myspectrumsuite.com/samantha-crafts-autistic-traits-checklist/