Girls living with an autism spectrum disorder throughout the United States of America are being overlooked and misdiagnosed. Autism has historically focused exclusively on young white boys. This inadequate research and testing leave girls and girls of colour in particular feeling misunderstood without proper support and diagnosis.
Defining autism spectrum disorder (ASD)
According to the World Health Organization (WHO), autism spectrum disorder (also called autism) is a diverse group of neurological conditions characterized by a degree of difficulty with social interaction and communication (WHO, 2023). Children living with autism have varying abilities, with some requiring high levels of support while others need little assistance.
The rights of children living with autism
Article 23 of the Convention on the Rights of the Child makes special provisions for children living with mental or physical disabilities (Convention, 1989). Article 23 states that governments must provide the necessary assistance to ensure that every child with a disability has effective access to education, training, health care, rehabilitation services, preparation for employment and recreational activities, in a manner that is conducive to achieving the fullest possible social integration.
How autism differs in girls and boys
Due to several factors, girls living with autism often get misdiagnosed and grow up in a society without the proper support and care. The main reason for this is that the criteria for autism are biased and based on the typical presentation of autism disorders in boys.
Symptoms and abilities in autistic girls
Studies around the globe have demonstrated that girls living with autism experience different symptoms and characteristics than boys living with autism (Bennie, 2022). For example, autistic children develop fine motor skills differently than their neurotypical counterparts. A 2019 study assessed children living with autism between the ages of 12 and 60 months and found that boys present lower in motor skills (such as dexterity and balance) than girls at a preschool age (Mohd, 2021). However, girls may present motor skills difficulties at a later age, leading boys to receive an earlier diagnosis.
Studies conducted in the USA and internationally in 2009, 2015 and 2016 highlight that autistic females use more developmentally appropriate vocabulary and core language skills than their male counterparts (Ratto, 2018). However, girls experience higher rates of sensory and attention difficulties and are at a higher risk of having anxiety and depression (Saxe, 2017). Psychiatric problems can also obscure the underlying autism and lead to misdiagnoses.
The challenge of “masking”
Evidence shows that girls living with autism, whether consciously or unconsciously, will suppress natural autistic responses and mimic social cues to fit in. As they grow up, some girls learn scripts to use in social situations, and develop a passive way of behaving with others that focuses on making the other person feel comfortable.
Many autistic girls and women engage in this kind of social camouflaging called “masking” constantly in order to seem acceptable to others. This response can lead girls to feelings of isolation and exhaustion. The act of masking has not been found as prevalent amongst boys living with autism.
Autism within the USA
In 2023, the Centers for Disease Control and Prevention found that in the United States 1 in 36 children in the U.S. have autism (Moore, 2023). Their research also highlighted that boys are four times more likely to be diagnosed with autism than girls. While this statistic may seem to indicate that there are more boys living with autism than girls, that is not the case. On average, girls also receive a diagnosis almost a year later than boys (at age 5.6 for girls versus 4.8 for boys) (Autism Speaks, 2024).
Bias in autism research
In the USA, male-centric research and education on autism have led to the underdiagnosis and misdiagnosis of girls living with autism. Historically, research on autism and other cognitive and neurological disabilities has overwhelmingly focused on white male participants. To date, girls and non-binary children are seriously underrepresented in such research.
In North America, autism is most commonly associated with “stereotypes of whiteness, high socioeconomic status, and masculinity” (Cascio, 2020). The majority of autism research studies have enrolled small samples of girls and females or excluded them altogether (D’Mello, 2022). This exclusion has led to a misunderstanding of autism in girls which hinders the support they require.
How autism tests in the USA overlook girls
There is no single test to diagnose a child with autism. While there may be some differences in how autism is diagnosed, paediatricians and autism experts regularly rely on standardized measures and testing to diagnose their patients. These measures do not consider the unique symptoms and experiences of girls living with autism in the USA (Moore, 2018). Because of the lack of girls in autism research, professionals are not as well informed on the traits and characteristics unique to girls.
Standardized tests do not consider differences between behavioural patterns and presentation of symptoms in girls and boys living with autism (Ratto, 2018). In addition to frequent misdiagnosis or lack thereof, girls and women are more likely to be diagnosed later in life due to the bias and misunderstanding of their symptoms.
Neglecting intersecting identities
The white, male-centric nature of autism research highlights access to diagnosis inequalities by race and gender disparities. While little research has been conducted on girls, an even smaller fraction has been conducted on girls of colour with a form of cognitive disability. American studies have highlighted how autism was more prevalent amongst white children compared to Black and Hispanic children (Collins, 2023). Similar to the statistics on girls, the results from these studies must be put into context.
Due to the underdiagnosis of girls and the lack of support for Black, Indigenous, and People of Colour (“BIPOC”) patients, girls of colour living with autism are less likely to be diagnosed than Caucasian individuals living with autism. The lack of proper diagnostics leads to a lack of support resulting in more severe symptoms and, in some instances, a lower quality of life. Acknowledging intersecting oppressed identities is key for all children to receive health care they have a right to.
Challenges in education faced by girls with autism in the USA
A significant percentage of autistic students in the USA, 8%, do not complete high school, compared to 5% of all students (Autism Speaks, 2024). For girls, the support provided by schools might not be enough to get them through graduation. Even when girls are diagnosed correctly their unique presentation of autism by masking can make it difficult for teachers and educators to address their challenges (Bennie, 2022).
Societal expectations of how girls should behave in school with their classmates put an additional pressure on autistic girls to conform, which can be exhausting and affect their self-esteem. This also can contribute to increased stress, anxiety, depressions and eating disorders. Many educational systems lack tailored support for autistic girls. Programs and interventions are often designed with boys in mind, leading to a mismatch in addressing the specific needs of girls.
Towards a more inclusive future
The exclusion of girls, women and people of colour in autism research is a major ethical concern that places them at a disadvantage in society. Autism research must include a representative demographic of BIPOC girls and children. Educational institutions must provide the proper support for the various challenges faced by girls living with autism such as individualized mental health and learning assistance.
In addition, girls living with autism should be supported outside of school to promote their mental health through government funded services aimed at addressing girls’ individual challenges. Lastly, health professionals must be educated to understand and identify the presentation of autism in girls.
By including a more diverse demographic of individuals living with autism in research, providing them with the proper individualized support, and promoting neurodiversity, all children living with autism can have their needs met. At Humanium, we advocate for every child’s right to health and wellbeing. If you share our vision and wish to contribute, you can support us through donations, volunteering, or becoming a member. Together, we can make a lasting difference in the lives of children worldwide.
Written by Kathleen Tereposky
Bibliography:
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