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Why Do So Many Girls Get Diagnosed with ASD Later in Life?

By | NESCA Notes 2024

By: Renee Cutiongco Folsom, Ph.D.
Pediatric Neuropsychologist

In the 15 years that I have been doing neuropsychological evaluations, I have made countless diagnoses of Autism Spectrum Disorder (ASD) in females who are already in high school or even in college. Many times, the diagnosis comes as a surprise to the girls and the families alike, because no one has ever suggested it previously and/or their perceptions are colored by the stereotypes created in the media about autistic individuals. However, a discussion about what ASD is and how it manifests in females as opposed to males usually helps my clients and their families understand the nuanced and comprehensive nature of the ASD diagnosis. They often pivot to feelings of relief and gratitude for having a label for what they have been struggling with for a long time. Many of my clients learn to embrace this new diagnosis and use it as a framework for celebrating their strengths and looking for supports to address their vulnerabilities. They often say, “It totally makes sense!”

Autism Spectrum Disorder is a developmental disorder that manifests in challenges with social communication and interaction, and in the presence of repetitive, restricted behaviors that significantly impact functioning. When autism was first introduced by Dr. Leo Kanner in 1943, he described children (boys) who showed little interest in other people, insisted on routines, and displayed unusual body movements, like rocking back-and-forth and flapping their hands. Many of the children could talk but they rarely used their speech to communicate with others, and they had a variety of pervasive learning difficulties. For the most part, this continues to be the image that is conjured when people mention autism. However, with advances in research, especially within the last few decades, we have come to recognize the various manifestations of autism in children and adolescents who are higher functioning, have better communication skills, and have fewer learning issues. Thus, the newer conceptualization of autism as a spectrum with a wide range of capabilities and communication skills. More recently, researchers have also discovered that the presentation of autism varies in boys versus girls. This has made the diagnosis of ASD in girls difficult.

In their book Girls Growing Up on the Autism Spectrum, ASD researchers Shana Nichols, Ph.D., Gina Moravcik, MA, CCC-SLP, and Samara Pulver Tetenbaum, MA, outlined some preliminary findings of differences between males and females on the spectrum. They reported that:

  • The play of boys with ASDs is more restricted in range and more repetitive when compared to girls with ASDs who have stronger pretend-play skills.
  • Girls have stronger communication skills.
  • Sex-related social difficulties emerge over time – boys have more impairments early on (thus leading to earlier diagnoses), whereas for girls, the difficulties appear more in early adolescence.
  • Boys are more easily distracted when compared to girls.
  • Girls with mild difficulties may not be included in research samples.

They added that these differences could impact the assessment and diagnosis of ASD. They wondered if girls with ASD are being missed or overlooked during an evaluation because their presentation does not fit how professionals currently characterize ASD based on a male prototype. Other researchers have suggested that girls with ASD may be better able to compensate for symptoms despite having persistent core deficits associated with ASD, which might contribute to greater social “camouflage” or what is called “masking” (an individual hides or suppresses symptoms, behaviors, or difficulties). Indeed, as I have been learning more and working with girls diagnosed with ASD, I have been keeping in mind these potential sex differences. For example, I often compare my client’s social and communicative abilities to what is considered normative for girls their age and cognitive ability. I have been avoiding comparing my female clients with what has been the prototypical profile of autism in males. I also think about other manifestations of repetitive behaviors and interests in girls with ASD that are more socially acceptable, for example, an obsession on reading or running as opposed to preferred topics of males on the spectrum (e.g., trains, schedules, calendars, etc.).

Researchers have speculated that these differences in the manifestation of ASD in girls versus boys stem from how girls are socialized at an early age to pay attention to social cues/actions as opposed to boys. There is also research that suggests that girls are more able to follow social actions by delayed imitation. They observe and copy other children more effectively than do boys. This could lead to the phenomenon of masking and to milder presentations when compared to boys.

Sources:

Evans, S., et. al. (2019). Sex/gender differences in screening for autism spectrum disorder: Implications for evidence-based assessment. Journal of Clinical Child Adolescent Psychology, 48 (6), 840-854.

Nichols, S., Moravcik, G. & Tetenbaum, S. P. (2009). Girls growing up on the autism spectrum. London: Jessica Kingsley Publishers.

Ozonoff, S., Dawson, G. & McPartland, J. (2002). A parent’s guide to asperger syndrome and high functioning autism. New York: Guilford Press.

 

About the Author

Dr. Renee Cutiongco Folsom, Ph.D. has been working with families in the greater Boston area since 2015. Prior to this, she was on staff at Johns Hopkins University and trained at the University of California, Los Angeles (UCLA). She provides comprehensive neuropsychological evaluations of children, adolescents, and young adults who have learning, behavioral, and socio-emotional challenges. Her areas of expertise include Autism Spectrum Disorder and other conditions that usually co-occur with this diagnosis; Attention-Deficit/Hyperactivity Disorder; Dyslexia and other Specific Learning Disabilities; and Anxiety/Depression. She thinks that the best part of being a pediatric neuropsychologist is helping change the trajectory of children’s lives.

To schedule an appointment with one of NESCA’s pediatric neuropsychologists, please complete our online intake form

NESCA is a pediatric neuropsychology practice and integrative treatment center with offices in Newton, Plainville, and Hingham, Massachusetts; Londonderry, New Hampshire; and the greater Burlington, Vermont region, serving clients from infancy through young adulthood and their families. For more information, please email info@nesca-newton.com or call 617-658-9800.

 

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