Autism in girls, why are so many females misdiagnosed?

BATON ROUGE, La. (BRPROUD) – Rebecca Dingwell, a writer and reporter for a news outlet, says she was on the job and suddenly thrown into a social situation that required her to speak to a crowd of strangers.

But all of a sudden, this trained reporter froze up and literally lost her voice.

She described the awkward situation, saying, “Every time I tried to talk to someone, I found myself entirely unable to speak.”

Why did this happen to Dingwell?

She shared the answer with Insider magazine, “Looking back, I now recognize this entire experience as an example of an autistic shutdown.”

Dingwell came to realize she’d displayed many of the characteristics associated with autism since childhood, but it wasn’t until she was an adult that she was diagnosed.

Why did her diagnosis take so long?

This article will delve into the possible reasons why.

Eventually, it occurred to me that I could be autistic when I started to learn about autism beyond the stereotypes
Rebecca Dingwell, freelance journalist with ASD

In recent years, an increasing number of television shows, movies, and documentaries have broached the topic of autism by attempting to shed light on the lives of people who’ve been diagnosed with Autism Spectrum Disorder (ASD).

Many of the individuals featured in these films are male, and some statistics state that “boys are four times more likely to be diagnosed with autism than girls.”

But could it be that girls and women with ASD are being overlooked? Is it possible that there are differences in the way ASD characteristics present in males and females?

As we investigate what some health experts have to say on this topic, we might begin by defining ASD.

Defining Autism Spectrum Disorder

Lately, terms like ‘neurotypical’ and ‘neurodivergent’ have been used in connection with ASD. What do these words mean?

Research indicates that people labeled as ‘neurotypical’ or ‘non-neurodivergent’ are believed to think and function in a way that is similar to most of their peers.

In contrast, are the individuals who are referred to as ‘neurodivergent.’

This non-medical term includes people with ADHD, Dyslexia, Dyspraxia, and ASD because they are believed to think and function in a way that is unique.

According to the U.S. Centers for Disease Control and Prevention (CDC), approximately 1 in 44 children have been identified with ASD.

Though the definition of ASD may evolve as research continues, at this time, ASD is commonly defined as a developmental disability characterized by challenges with social skills, speech, non-verbal communication, and repetitive behavior.

Experts say there is often nothing immediately evident physically that differentiates people with ASD from anyone else.

But many people with ASD learn, interact, behave, and communicate in ways that are quite different from people who are neurotypical.

Researchers use the word ‘spectrum’ in connection with autism because the characteristics associated with autism are experienced differently and to varying degrees by every person diagnosed with ASD.

In other words, some people with ASD may require more assistance than others.

Common characteristics of ASD

The U.S. Department of Health and Human Services says, “most children with autism are not diagnosed until after age three, even though health care providers can often see developmental problems before that age.”

Many children with ASD display the following characteristics:

not responding to their name by the time they are 12 months old
preferring not to be held or cuddled
having difficulty following instructions
not looking at something when another person points to it
losing certain skills, such as no longer saying a word they could use before
having difficulty explaining what they want or need
having difficulty understanding how other people are feeling
avoiding eye contact

Why girls are often misdiagnosed

But do most healthcare providers recognize ASD characteristics in girls as often as they do in boys?

Experts such as Claire Jack Ph.D. say the answer to this question is no.

Dr. Jack’s article in Psychology Today, states that, “Gender differences in autism have likely contributed to the misdiagnosis and under-diagnosis of autism in women.”

Why does this happen so frequently?

Jack suggests it has to do with a gender difference between girls and boys when it comes to handling social situations.

She says girls with autism often have a strong desire to ‘fit in’ socially, and this emotional need for social acceptance does not typically present itself to the same degree in boys with autism.

This doesn’t mean boys lack social skills and have no desire for social acceptance .

Instead, Jack’s research indicates that “girls, as a group, tend to appear to be more socially oriented than boys. From birth, girls tend to be more interested in human faces and appear to behave more prosocically than boys.”

So, how might a young girl with ASD balance her strong desire to fit in with peers and her natural neurodivergent characteristics?

Many researchers say girls and women with ASD are so self-aware that they use a coping mechanism called ‘masking’ or ‘camouflaging.’

This involves comparing their mannerisms with the behaviors displayed by their peers, pinpointing ‘quirky’ characteristics that aren’t sociably acceptable, and then working desperately to hide them.

In other words, girls often hide their neurodivergent characteristics behind a mask of more sociably accepted behavior.

This means they’ll stop doing things that draw negative comments and even begin mimicking the mannerisms of other girls who appear to get along well socially.

One article on the subject says, “girls are so good at autism masking that they even hid their symptoms from researchers.”

Common traits of girls with ASD

Considering how naturally skilled many girls become at camouflaging their ASD characteristics, how can they be diagnosed?

Experts say girls and women with ASD often display and experience the following behaviors and emotions:

Pays keen attention to specific interests: She feels different from other females her age because she doesn’t share their interests. Instead, she has a deep appreciation for specific interests, which she focuses on to a high degree.
A bit of a loner: She prefers having only one or two friends, or to play in solitude.
Struggles with exhaustion: She might be exhausted from the work of masking, trying to figure out social rules, or from imitating those around her to hide her differences.
Extreme anxiety when ‘put on the spot:’ She might be anxious in settings where she’s asked to perform in social situations. This could lead to mutism, escapism, or a focus on routines and rituals.
Depression/Anxiety: Women with ASD can experience co-occurring mood disorders and often internalize feelings of frustration and failure.
Eating Disorders: Experts say studies reveal an overlap between autism and eating disorders such as anorexia.

A number of girls with ASD report extreme feelings of loneliness and isolation.

Dingwell, mentioned earlier in this article touched on this, saying, “When I look back on my childhood and teenage years, I mostly remember loneliness.”

It was like everyone existed on the other side of a glass wall. I could see them, but I couldn’t fully understand the life they experienced on their side of the wall. From where I stood, it seemed to be a little bit easier for them. They had their own challenges, I’m sure, but life seemed to make sense to them in a way it never had for me.
Rebecca Dingwell, freelance journalist with ASD

Additionally, experts note that girls may be more likely to display the following behaviors at home or in environments where they feel safe enough to remove the ‘mask’ and be who they are:

Too much or too little eye contact
Hand flapping
Experiencing meltdowns due to changes to their routine

Medical News Today points to yet another reason why girls with autism are often misdiagnosed, saying, “Stereotypes about typical male and female behaviors may cause some people to miss symptoms. Many people think of girls as naturally quieter or more content to play alone than boys. However, speaking less and preferring to spend time alone can both be symptoms of autism.”

Continued research may lead to equality

The research listed above may lead some to wonder what it will take for the healthcare system to treat girls with ASD with the same consideration as their male peers.

Many experts believe the more ASD is researched in both girls and boys, the more progress will be made in this regard.

For example, Dr. Jack concludes her perspective on the issue by saying, “As we begin to learn more about how women experience autism, hopefully, it will be easier for girls and women to be correctly diagnosed as we move to a more encompassing definition of what autism is.”

A number of girls and women who receive an ASD diagnosis report feeling a sense of relief as the reason for their feelings becomes clear.

In this regard, Dingwell said, “Getting diagnosed was expensive and difficult, but I felt like I could finally breathe… my diagnosis made me feel more human than ever.”

Anyone interested in learning more about how to receive an ASD diagnosis might consider asking their primary physician for a referral to an autism specialist.

There are also agencies in the capital area that may be able to offer assistance and answer questions related to ASD.

These include: