Photography by Ardea Photo

Most fit in better with boys, as boys’ play is more functional and communication less confusing. Their affinities and interests are usually with animals, a specific book series, and collectibles (My Little Pony, Littlest Pet Shop, Ever After High, and more)—in fact, these often pose as their best friends. And, they are hard-wired to defend their position on topics with staunch conviction. They are our girls on the autism spectrum—amazing in all of the ways they are not typical. But overlooked at a high price that is nothing less than disheartening.

Why Are Our Girls Overlooked?

While current estimates show that autism appears in about 1 of 68 children in the U.S., only 1 in 4 of those children diagnosed are girls. Few argue these stats, but researcher Janet Lintala says that if diagnostic criteria were established that could quantify female autistic behaviors separate from male autistic behaviors, the ratio may more accurately reflect 1 girl to every 2 boys.

Currently, some girls who have autism are being misdiagnosed with attention-deficit/hyperactivity disorder, obsessive-compulsive disorder, eating disorders, and anxiety disorders. And those girls actually getting an autism diagnosis are getting that diagnosis significantly later than for boys, limiting opportunities to receive early intervention in the form of treatment and therapies.

Because girls were often left out of earlier autism studies, diagnostic behaviors are heavily skewed to indicators that present more typically in males. While my daughter, Hannah, happened to mirror behaviors typical in males with autism, doctors still did not go down that path because of her gender. We began to realize the need to explore a diagnosis because her developmental milestones were delayed.

As reported in Scientific American, a 2012 study by cognitive neuroscientist Francesca Happé found that if boys and girls have similar levels of autistic traits, the girls needed to have either more behavioral problems or significant intellectual disability—or both—to be diagnosed. Consequently, this finding suggests that professionals are missing many girls who are on the less disabling end of the autism spectrum. Previously, this category was labeled Asperger’s syndrome.

Girls with autism silently develop their own coping mechanisms to mask their challenges. They listen to others’ language in social situations and then copy it in other conversations. Unfortunately, this backfires when the context of the new situation doesn’t warrant the language previously utilized. Obviously, lack of receptive and expressive language serves as the culprit.

Girls on the spectrum also continually apologize for their social faux pas in order to avoid attention. In group situations, these girls naturally gravitate toward others that may also be socially different. This, in return, makes them feel more normal.

What Are Some Behaviors of Girls on the Spectrum?

Girls do share three of the paramount characteristics of autism that appear in boys: difficulty with social pragmatics, trouble with verbal and nonverbal communication, and limited interests in activities and play. Hannah didn’t start speaking until around the age of three-and-a-half. She had to be taught the subtleties of engaging in conversation, such as, “Hi! My name is Hannah. What is your name?” Facial expressions were something she had to memorize—not something picked up by watching others. She also perseverated on numbers, colors, and shapes.

Bestselling author Jennifer O’Toole, a female with autism, says the word best used to describe girls on the spectrum comes down to “too.”

“Too much, too intense, too sensitive, too this, too that,” O’Toole says. “There is really not a time when we’re not feeling some level of anxiety, generally stemming from either sensory or social issues.” Hannah’s intensity to play every note on the piano or violin correctly is too much. Her sensitivity to the texture of food is too heightened. And, her tenacity to prove her point-of-view correct remains steadfast—some might say too intense.

What Price Could be Paid if Autism is Overlooked?

Masking autism while not feeling comfortable in their own skin is simply exhausting for our girls. Unless they are empowered to understand the beauty in their differences, low self-esteem and a feeling of worthlessness are inevitable.

Of course, adolescence is difficult for most kids, but it’s especially challenging for girls with autism. Many can cope with the far simpler world of elementary school friendships, but they hit a wall with the mean girls of middle school—their naivete leaves them helpless. They may even be years behind their peers when it comes to maturity.

Emotional immaturity results in apathy toward personal hygiene. Many highly intelligent girls on the spectrum have difficulties washing their hair, wearing deodorant, and dressing appropriately. Some of the challenge lies in motor planning, proprioception issues, low muscle tone, and mind-blindness. Some won’t bother trying; others try, but struggle. And when they neglect personal hygiene at critical stages, friendships suffer.

What Can Parents Do to Aid Their Girls on the Spectrum?

Parents are best positioned to help their girls on the spectrum. First of all, be aware of the overarching indicators for autism. Don’t be afraid to ask trusted medical professionals or your school corporation’s autism consultant about performing an evaluation.

Whatever the result of the evaluation, get your daughter the help she needs. Social play groups were extremely helpful for Hannah. Scripted conversation along with social stories helped transform her language and enabled her to understand the unwritten rules of the world around her.

Jennifer O’Toole’s book, Sisterhood of the Spectrum, gave Hannah concrete pitfalls (social gaffes) to avoid while embracing the awesomeness of her true self. Jennifer O’Toole assures girls, “We often mistake our most immeasurable gifts for shameful flaws. You are lovable. Right now. Without changing a thing.” True acceptance of our children with autism means not trying to change who they are, and that helps the girls themselves begin to accept—even embrace—who they are. Even though autism is not something that can be shed or cured, we must work to help our children become as independent and positive as possible.

Our girls also need to learn the skill of self-advocacy. Self-advocacy is teaching our girls to expect other people to treat them with dignity and respect—they learn to ask for what they believe they need to succeed and accept nothing less.

This generation of children with autism clearly has significant advantages over those of the past. But much more research will need to be done to design better and more gender-appropriate diagnostic tools.

Perhaps in the meantime, the experiences of girls with autism should teach us to be more tolerant of socially inappropriate behavior in girls.

I welcome any questions and/or comments—just drop them in the comments below.

Now go empower a girl you’ve always believed to be a little bit different!

Take care,

Lori

 

One thought on “Girls on the Spectrum: Reflections on Being Overlooked

Leave a Reply

Your email address will not be published. Required fields are marked *