Why You Cannot See My Daughter's Autism

Most of the public's understanding of autism comes from research in boys.

On our fifth and final day of a cross-country move from Maine to Minnesota, my husband, father-in-law, daughter and I walked into a bustling truck stop Denny’s. We were hungry, tired and sore, but my daughter, little trooper that she is, was sitting quietly beside me, already lost in her iPad.

When the waitress approached, we ordered coffee and then I placed an order for my daughter: scrambled eggs, bacon and hot chocolate that needs to actually be lukewarm and also, for the love of God, without whipped cream, please-and-thank-you.

The waitress looked at me, raised an eyebrow, and then looked at my daughter.

“You’re a big girl now,” she said, matter-of-factly. “Your mother shouldn’t have to order for you.”

There was no point in correcting her. I smiled the smile I saved for my worst customers in my own waitressing days, looked her in the eye and reminded her that I needed that coffee.

My daughter is not rude. She’s not a brat. She can do a lot for herself. At 9 years old, she’s animated with those she is comfortable with ― but sensory overload in public settings means she’s probably playing “Minecraft” on her iPhone.

If you want to get her attention, you need to touch her shoulder. Her headphones block out the noises a neurotypical person may not notice, so she can’t hear you call her name.

My daughter has high-functioning autism, which is the diagnostic term doctors now use for what was formerly known as Asperger’s syndrome. Many of the typical behaviors that we associate with this condition, such as hand-flapping and rocking, don’t apply to her.

That’s because most of the public’s understanding of the condition applies primarily to boys and men.

Strangers cannot see my daughter’s autism, but even those in our personal circle sometimes need to be reminded. Once, a friend in Maine was taken aback by my daughter’s less-than-enthusiastic response to a birthday gift, and expressed her feelings in a text message. I replied with a link directing her to traits associated with Asperger’s syndrome. She replied by questioning the diagnosis. After all, my daughter doesn’t “look” autistic, she said. (We haven’t spoken since.)

This kind of doubt isn’t unusual, according to experts who study gender as it relates to the autism spectrum and how girls and boys with autism often present differently.

“Compared to their male counterparts, high-functioning girls on the spectrum are often misdiagnosed with social ‘difficulties’ instead of ‘disabilities,’” said Judith Zenna-Valgento, a clinical psychologist and director of Brightmont Academy in Arizona, a private school that caters to children who need one-on-one instruction, including many with autism.

The author and her 9-year-old daughter, who has high-functioning autism.
Courtesy of Pauline Campos
The author and her 9-year-old daughter, who has high-functioning autism.

“Females on the spectrum can exhibit social skills and strategies at a higher level than male peers. They can also exhibit imaginative play and can appear to have less obsessions than males. For example, a female who is fixated on dogs will be less suspect than a male fixated on the pattern of a ceiling fan or floor tiles.”

Zenna-Valgento is referring to a growing body of autism research that disputes the “extreme male brain” theory ― a theory proposed by Simon Baron-Cohen, director of the Autism Research Center in Cambridge, U.K., that suggests autism is related to overexposure to testosterone while in the womb.

Generally speaking, girls on the higher-functioning end of autism spectrum disorder may attempt to direct their “restricted interest” ― fixations commonly associated with autism thanks to longstanding research based almost entirely on observing white men and boys ― to something less obvious so they can blend in.

Many researchers have acknowledged that current diagnostic criteria based on the male brain misses how autism affects and presents in the female brain. This translates into girls and women being diagnosed less often or later in life.

Girls with autism are often diagnosed with eating disorders, ADHD or anxiety and have been known to harm themselves. Many also report fear of change and a rigid preference for what is already known and comfortable, which was one of the main reasons my husband and I kept pushing for an autism evaluation for our daughter. (This isn’t to say that girls and women with autism cannot or do not present with “typical” symptoms; just that those who don’t present with these symptoms are less likely to be diagnosed.)

Currently, about 1 in 68 children are diagnosed with autism spectrum disorder, according to the Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network, but the actual number of children on the spectrum is likely much higher. When the numbers are broken down by gender, 1 in 42 boys are diagnosed, versus 1 in 189 girls, according to the CDC.

Stephanie Mayberry is a woman with autism and three grown children, including a daughter with a formal diagnosis of autism. It was a challenge to raise her, Mayberry recounts, but empowering her in the face of adversity was instinctive.

Mayberry, who blogs at The Christian Aspie, recounts how her daughter was extremely shy and was often bullied as a result. “She had what I call ‘typical girl autism.’ The emotional stuff. She was really awkward socially,” she said. “People don’t understand ― this isn’t just a boy thing.”

Girls with autism don’t only often differ from boys in terms of their social skills. Boys are also more likely to provide a visual clue that they have the disorder, another “extreme male brain” sign (like the aforementioned flapping and fixations on ceiling fans).

That’s because of gender differences in sensory processing and emotional expression, says pediatric occupational therapist Amy Baez and founder of Playapy, a Miami-based therapy resource for parents.

“Boys tend to have more repetitive and restricted behaviors compared to girls,” said Baez. “My experience shows that girls tend to internalize their feelings and boys externalize. Hence, boys are noticed more because those feelings become more disruptive to others.”

My daughter does not cause a disruption in a busy restaurant because she copes with sensory overload by internalizing her emotions and focusing on one of her self-regulation tools.

The waitress may have dismissed her autism because she could not see it, but my daughter knows that we can see it. She, and other girls like her, deserve our admiration for this difficult work ― yes, it’s work to self-regulate ― and not our misunderstanding.

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