“What’s next?” I said to my 4-year-old daughter, pointing to an image of a girl holding a toothbrush. We have a visual schedule printed out for her bedtime routine — seeing an image of each step, we’ve found, makes it easier for her to remember what to do next.
“Brush teeth,” she said with a smile and ran off to the bathroom.
A few minutes later, I found her standing on a stool in front of the sink. She was staring into the mirror with a blank expression. She put her Dora and Friends cup in the puddle of water that had accumulated on the vanity top.
“What happened?” I asked in the calmest voice I could manage. I gave her a hand towel from the towel rack, and she started wiping up the water.
“I wanted a drink,” she said, her eyes looking down at the water dripping onto the floor.
“Did you brush your teeth?” I asked.
“No, not yet,” she said and grabbed her toothbrush.
This is a typical scenario in my house. My autistic daughter has a larger English and Spanish vocabulary than most of her peers, can put together complex jigsaw puzzles using her excellent pattern recognition, and remembers minute details of events that happened years ago — but following a bedtime routine and taking care of basic daily living tasks like hygiene are still a challenge for her.
That’s because the ability to focus on the sequence of steps involved in a bedtime routine involves executive functioning, something she struggles with. Executive functioning, which develops over the first 30 years of life, is a complex network in the brain that gives us the mental skills needed to organize information and make decisions. It’s not about intelligence, but about “how you manage more complex demands, unfamiliar demands, unexpected demands, and less structured demands,” says Lauren Kenworthy, a professor of neurology, pediatrics, and psychiatry at the George Washington University School of Medicine.
A related challenge for my daughter is adaptive behavior, the ability to successfully carry out basic day-to-day living tasks like giving someone directions, managing money, using public transportation, and, yes, brushing your teeth. Adaptive behavior often determines the extent to which an autistic person can function independently. For example, “I’m not particularly bothered by the fact that I can’t make eye contact, but the fact that I can’t make myself dinner or get myself to bed has a big impact on my daily life,” says Julia Bascom, the executive director of the Autistic Self-Advocacy Network, a nonprofit organization run by and for autistic people.
Kenworthy and Bascom recently co-authored the largest autism study to date on the gender differences in executive functioning and adaptive behavior. Together with their colleagues, they interviewed the parents of autistic children and young adults aged 7 to 18, 79 girls and 158 boys, to collect real-world data about their everyday functioning. (Kenworthy told me that they used parent-reported data because what autistic people say they can do in a lab may be very different from what they actually do in the real world.) The results of the study, published in the journal Autism Research, show that autistic females have more weaknesses than autistic males with both executive functioning and adaptive behavior.
It’s one more step toward understanding a group that’s often overlooked. The Centers for Disease Control and Prevention estimate that 1 in 68 American children has been diagnosed with autism spectrum disorder (ASD), with a ratio of 1 girl for every 4.5 boys — but the skewed gender ratio is likely due at least in part to gender-based biases in the diagnostic process, similar to what we have historically seen in other fields of medicine. “We for decades missed heart attacks in women,” Kenworthy explains: Doctors were more attuned to traditionally male symptoms, which meant “sending women home from the ER because we didn’t recognize their symptoms.”
Similarly, while “we had to start somewhere” to develop diagnostic tests for autism, Kenworthy says, the research tends to focus on young boys, without taking into account “everybody else on the gender and age spectrum.”
This new study also treads neglected territory in another way, too: A lot of autism studies focus on social deficits and overlook “nonsocial executive cognitive abilities,” Kenworthy says, which is one of the main reasons why she wanted to focus on this research area.
And social communication problems — the issues that are most visible to the outside world — are just the tip of the iceberg for many people with autism, Bascom explains. Much of the internal experience of autism falls into the more hidden category of “core cognitive differences,” such as sensory processing, executive functioning, and motor skills, she says, which are not readily apparent to anyone other than the person experiencing them.
“Autistic people always have at least twice as many jobs as everyone around them,” Bascom says: during a typical conversation, they have to focus on making eye contact, filtering out sensory information, moving the muscles in the face, figuring out the rhythm of the conversation, and determining when to respond. “Ultimately, we have too much going on,” she concludes, “and the demands on us cognitively exceed our capacity to meet them.”
I can relate all too well. I wasn’t diagnosed with ASD until my late 30s; up until that point, I’d unknowingly masked my autism by using scripted language and imitating social skills, and I’d also developed some coping mechanisms for my sensory sensitivities. But I’ve always had a lot of trouble with executive functioning, and that’s especially true now, with the increasing responsibilities I have as a wife and a working mother. I delayed going up for tenure and a promotion in my job as a professor because I couldn’t handle all of the paperwork required for my application. I also struggle with day-to-day living tasks like grocery shopping, so I rely on my husband to buy most of the food for our family of five.
But there are ways to help people who struggle with the same things I do. Kenworthy and her colleagues at Children’s National Health System, where she’s the director of the Center for Autism Spectrum Disorders, have developed a cognitive behavioral intervention program called Unstuck and on Target, which is designed to teach autistic kids flexibility, goal setting, and planning. Two research trials have already demonstrated that this program is helpful for elementary-school-aged children on the spectrum, and some of Kenworthy’s colleagues are currently testing its effectiveness for middle- and high-school-aged kids who have greater executive challenges.
Part of the challenge of working with kids with autism, Kenworthy says, is “distinguish[ing] between the can’ts and the won’ts” to determine if they aren’t doing a task because they have a “cognitive blockage” that renders them unable to complete it, or if they’re simply choosing not to do it.
She points out that autistic adults normally need to know their own strengths and weaknesses, so they can advocate for their own accommodations. Young children on the spectrum — especially girls — often have good social communication skills that allow them to mask their weaknesses, making it difficult to know what type of support and interventions they need.
To a certain extent, I see these gender differences play out with my kids, two of whom are mild to moderate on the spectrum, depending on the situation. My 2-year-old son, who also uses a visual schedule for his bedtime routine, has less trouble than my 4-year-old daughter with following sequences and taking care of his personal hygiene. He may not be able to maintain eye contact as well as his sister, but he is beginning to develop the executive functioning and adaptive behavior skills needed to function independently.
My daughter is gradually improving these skills, though, with the help of applied behavior analysis therapy. She can already meet social expectations like making eye contact — but by learning the mental skills necessary to organize information and be flexible, she’ll be able to function more independently in her day-to-day life, which is far more important.
Jennifer Malia, who runs the Facebook page Mom With Autism, is an English professor at Norfolk State University. She is currently working on a book about autism and gender.