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Why Autistic Girls Go Undiagnosed for So Long

 
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How Autism Differs in Females

Boys are four times more likely to have autism than girls, but recent research suggests that women have been masking their autistic traits, making it harder to diagnose them.1

Studies on autism have historically been done based on male brains. Because of this, many girls and women go the majority of their life undiagnosed and not receiving help or answers to better their lives and understand themselves.

Paige Layle is a nineteen-year-old TikToker educating followers about autism in girls. She told Buzzfeed News “I get a lot that because I'm good-looking, nothing can be wrong with me — so I want to show that mental illness is diverse.”2

Layle is a prime example of how and why autism goes unnoticed, specifically in females. She explains that autism is so heavily stereotyped, oftentimes causing people to accuse her of lying about her autism or not being “that autistic.” Her videos illustrate a talented, intelligent and social young woman eager to share her musical talents with others and genuinely connect with them.

Layle’s educational videos specific to autism explain many misconceptions regarding autistic individuals, one of the common misconceptions being that they avoid eye contact. She says this while blinking widely at the camera, holding her stare, and explaining how for some autistic people, it’s actually the opposite. Layle explains how autism is less of a scale, and more of a color wheel. There are several various symptoms or traits of autism, and people can have traits from anywhere on that wheel.

Layle shared that while autism is considered a mental illness, it’s unique in that a “depressed person” is more properly described as “a person with symptoms of depression.” It is correct to say “a person with symptoms of autism” or “an autistic person,” because an autistic person never stops being autistic. Layle said that she can experience symptoms of depression, but when she isn’t experiencing those symptoms, she continues to be autistic.

In an article published by Scientific American, it is revealed that behavioral and preliminary neuroimaging findings suggest females with autism may be closer to typically developing males in their social abilities than typical girls or boys with autism. 3 All of these findings may stem from how autistic females have gone and continue to go undiagnosed; through a term called “masking.”

“Masking” is when a person observes the social behaviors of the people around them, and follows suit. When masking, an autistic woman gauges social norms through these observations and hides her autistic traits. Layle shares in her Tik Tok videos that masking is exhausting for her, because it hides the true parts of an autistic person’s personality.

Author and founder of the company AsperKids, Jennifer O’Toole, was not diagnosed until after her husband and children were diagnosed on the autism spectrum (ASP). While once a popular cheerleader in a sorority whose college boyfriend at Brown University was the president of his fraternity, O’Toole was a master of masking. In Scientific American’s article, they said O’Toole “...used her formidable intelligence to become an excellent mimic and actress, and the effort this took often exhausted her.”

Because symptoms of other mental disorders overlap with autism, oftentimes autistic females are treated for those illnesses instead of autism, such as obsessive compulsive disorder and anorexia.

The link between autism and anorexia may stem from the trait of hyperfixation in autistic people. Studies do not suggest that anorexic women are autisic; rather, anorexia may be one of the many symptoms of autism in women.

Autism may be more painful for autistic girls in many ways due to social norms and beauty standards. While adolescent boys tend to encourage negative or out of the ordinary behavior in each other, adolescent girls are less likely to tolerate it. Additionally, in general, men “get away” with more; at work, at school, in relationships, etc. An autistic woman with sensory issues regarding deodorant or shampoo has to navigate this struggle differently compared to men, for example. 3

Kevin Pelphrey, a leading autism researcher at Yale University’s world-renowned Child Study Center and father of several autistic children is interested in how autism affects girls due to gender roles and biological sex. While his son was diagnosed at 16 months, his older daughter was diagnosed much later, as multiple doctors told him and his wife to just wait and watch before officially diagnosing her.

Currently, Pelphrey is undergoing a major study following autistic children through adulthood. In 2016 he said he is already seeing “fascinating differences” in his preliminary research, one being “everything we thought we knew in terms of functional brain development is not true. Everything we thought was true of autism seems to only be true for boys.”

An example Pelphrey gives is that the brain of a boy with autism tends to process social information using different brain regions than a typical boy's brain does; Pelphrey said this detail does not hold up in girls (according to his unpublished data so far).3

The differences do not stop there. Historically, a symptom of ASP in autistic children is the absence of pretend play. However, research is finding this is less true for girls. O’Toole, for example, was obsessed with her dolls growing up, seemingly typical behavior for a little girl. However, O’Toole was less concerned with the storylines of her “characters” and more interested in the artistic side of setting up visual scenes with her dolls.

“The words used to describe women on the spectrum come down to the word ‘too,’” O'Toole says. “Too much, too intense, too sensitive, too this, too that.”

Ultimately, studies continue to reveal that autistic people desire human connection despite stereotypes. Stereotyping mental illness is common and hurtful, shaming those who could seek help to better navigate the world instead of hiding their true selves and hiding unique traits that the world is missing out on.

To learn more about autism in women and in general, check out the following resources:

National Autism Association
Spectrum News
National Autistic Society

1. National Autism Association, About Autism, https://nationalautismassociation.org/resources/autism-fact-sheet/ 

2. Buzzfeed, This 19-year-old TikToker is Teaching Really Important Lessons About How Autism Presents in Women, https://www.buzzfeed.com/daniellaemanuel/girl-tiktok-autism

3. Scientific American Mind, Autism - It's Different in Girls, https://www.scientificamerican.com/article/autism-it-s-different-in-girls/

Add a Comment1 Comments

HERWriter Guide

Great article, thank you! 

An obvious reason to those of us who are in healthcare or who write about it,  is bias in medicine that still continues. Autism and heart attacks seems to be for males, with most studies (certainly before 2000) focused on males. Meanwhile the biggest killer of women is heart disease. The more we talk about it, the better the awareness will be. 

Best,

Susan

April 30, 2020 - 1:07pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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