‘She masked, she masked, she masked’: Unseen autism and its toll on young girls

Ruby Hobbs-Leffler felt things with an intensity that even a smart little girl with a big vocabulary couldn’t put into words.

Life was an onslaught of bright lights, loud noises, intolerable textures and tastes. Feelings bubbled up uncontrollably: inconsolable howls in infancy, classroom meltdowns in childhood, rages in adolescence.

Most children did not understand her. Neither did many adults. She was articulate and insightful in so many ways — why wouldn’t she just behave? No one seemed to understand the world was sometimes too much for Ruby. What she absorbed instead, her mother, Jessica Leffler, said, was that she was too much: too dramatic, difficult, strange.

Her diagnosis with autism at age 14 was, to Ruby, a relief. There were reasons for the way she perceived things, words for the sensory experiences that set her apart from peers.

Leffler was angry. Why did Ruby have to go so many years without the support she needed? Why did none of the professionals the family asked for help identify her needs? Why did she spend the formative years of her life being treated by teachers and peers like a failure, instead of a person navigating a world designed for a different way of thinking?

And today, after Ruby’s 2024 death from suicide at age 15, she wants to know: Why are so many autistic girls with gifts and challenges like Ruby being overlooked?

Leffler holds her daughter’s sketchbook.

Autistic children are significantly more likely than their neurotypical peers to have co-occurring mental health conditions like depression and anxiety, and to think about and die by suicide.

For girls, however, there is an additional complicating layer.

Autistic girls without co-occurring intellectual disabilities tend to be diagnosed significantly later than their male counterparts, often not until adolescence or later. As a result, they miss out on early interventions that can help neurodivergent children navigate challenging environments. They are more likely to be diagnosed with psychiatric disorders like depression or anxiety before their autism is identified, and often feel little relief from interventions designed for neurotypical people.

Many cope by masking or camouflaging — suppressing autistic traits in order to fit in. Without the right support, what starts as unconscious mimicry of peers’ behavior in childhood can exact a painful toll as time goes on.

There is no single reason why anyone dies by suicide, no way of knowing if any alternative step would have led to a different outcome. But Leffler feels strongly that being understood sooner might have buoyed Ruby during her lowest points.

Leffler looks through Ruby‘s sketchbooks with her cat Pudding. The cat appeared outside Ruby’s bedroom window on what would have been her 16th birthday.

“It is so incredibly hard to live life the way that Ruby lived life,” Leffler said recently at her dining table in Princeton, Kan. It was strewn with photos of Ruby cuddling cats and grinning at the camera, notebooks full of her drawings and color-coded homework.

“She masked, she masked, she masked,” Leffler said. “And that’s exhausting.”

Boys and girls are diagnosed with autism at roughly equal rates until about age 3. These youngest children typically have major language or developmental delays that are easier for parents and doctors to spot.

In the elementary school years, their trajectories diverge. Boys are diagnosed with the neurodevelopmental condition at more than three times the rate of girls, and at younger ages.

Boys are more likely to receive their autism diagnosis between the ages of 3 and 11, one 2024 review of electronic health records found. Girls are typically diagnosed before age 3 or after age 11.

Researchers say that skewed ratio may be self-perpetuating: Because more boys are thought to have autism, diagnostic tools are biased toward boys’ autistic traits.

“Girl autism really does not check the behavioral boxes that we, as clinicians and researchers, have been taught to look for,” said Lauren Kenworthy, chief of neuropsychology and director of the Center for Autism Spectrum Disorders at Children’s National in Washington, D.C.

Boys are more likely than girls to display autistic traits like lack of eye contact and repetitive motions such as rocking or hand-flapping. They tend to play alone more often than their female peers.

Girls tend to be more adept at mimicking social responses like eye contact and reciprocal play. They have deep, all-consuming special interests just like autistic boys, but their preferred subjects are often socially mainstream: unicorns, a particular type of doll.

When they have intense reactions to changes in routine, uncomfortable situations or overwhelming stimuli — a response known as an autistic meltdown — parents, teachers and professionals may assume they are an unusually emotional neurotypical kid.

Leffler shows tattoos that honor Ruby’s memory.

Ruby saw therapists for sleep and behavioral issues starting at age 9. Though she showed many classic early childhood indicators — sensitivity to noise, extremely limited food preferences, rigid adherence to routine and difficulties understanding social nuances — no one suggested she was autistic.

“I assumed, very incorrectly, that they would tell me what I needed to know,” Leffler said.

Autistic kids often have “spiky” cognitive profiles, meaning that exceptional ability or maturity in some areas — verbal skills, for example, or reasoning — live alongside significant delays in areas like executive functioning and impulse control. Without that piece of information, adults and kids alike may not understand why a child who excels academically struggles with seemingly simpler tasks.

Girls’ coping strategies often work until early adolescence. At that point, when female social relationships become exponentially more complicated and masking becomes more difficult, their mental health outcomes split sharply from those of their male peers.

In a study Kenworthy led earlier this year, researchers tracked 313 autistic youth ages 2 to 25. They noted higher rates of anxiety, depression and executive functioning challenges compared to non-autistic peers in both boys and girls throughout childhood. But in the teenage years, the girls’ anxiety increased significantly over the boys’, and remained elevated into adulthood.

The girls in Kenworthy’s study already had autism diagnoses. For those who have not been identified, negative feedback from adults and peers can further depress self-esteem.

“Often, the longer a girl goes without knowing she has autism, the more deeply entrenched are her own negative attributions about her failings,” Kenworthy said.

A 2024 review of Duke University hospital records found that girls diagnosed later with autism were also likely to have first received a diagnosis of depression or anxiety in the previous two years.

“When you are receiving these anxiety and mood diagnoses … that’s going to delay your [autism] diagnosis,” said study author Dr. Matthew Engelhard, a Duke biostatistician.

Those challenges often persist into adulthood. Autistic people of all genders often struggle with nuances of social communication like decoding nonverbal cues, identifying shifts in tone or asking reciprocal questions. Women, however, often face higher social penalties if they don’t hit those marks.

“There are different social standards for women, and this is why women mask harder,” said Storee Powell, 38, a disability advocate in Smithfield, Utah.

Masking is not unique to autism and is not always harmful, Kenworthy pointed out. People often act more formally in job interviews than they do with friends, for example. But for many autistic women, masking is a relentless pressure that is associated with suicidal behavior over the long term.

In the general population, men die from suicide at significantly higher rates than women. Autistic women, however, die from suicide at about the same rates as autistic men, and at significantly higher rates than non-autistic women.

After her daughter Maisa, 13, attempted suicide in May 2023, Samia McCall began reading about neurodiversity. She was stunned how closely autism’s description fit her creative, sensitive girl — her strong need for routine, social anxiety, challenges with communication and sensory processing.

She brought her findings to Maisa’s doctor and therapist in Boise. They brushed off her concerns, she said, citing Maisa’s good grades, verbal sophistication and empathy as evidence that she couldn’t be autistic.

Samia and Maisa McCall at Crater Lake in Oregon when Maisa was 11.

(Samia McCall)

Maisa was on a six-month waitlist for a formal diagnosis when she died from suicide in November 2023 at age 14. While it’s impossible to know what effect an evaluation would have had, McCall said, she believes her daughter would have benefited from earlier diagnosis.

“I think it could have made a huge difference in her self-esteem. I think she was internalizing a lot of things as a personal failure when just her brain was working differently,” she said.

After connecting online last year, McCall, Leffler and a third grieving mother named Deborah Royal launched the Seen Movement, a suicide prevention organization advocating for change in systems’ response to people in crisis.

“By the time you get to where someone’s suicidal, it’s like Stage IV cancer. You need an intervention early,” McCall said. “Because if you identify and support someone who’s autistic or neurodivergent early in life, then they’re never going to develop this idea that something’s wrong with them.”

A childhood diagnosis doesn’t guarantee that an autistic person will never grapple with depression, self-doubt or suicidal thoughts. But there is some evidence that the earlier a girl understands herself, the sooner she can design a life that works with her strengths and needs.

Anne Kirby, an assistant professor at Trinity College Dublin, has conducted extensive interviews with autistic adults in her research on autism and suicide. Multiple women diagnosed later in life told her the diagnosis alleviated some of the shame and confusion they felt about their differences. Once they understood why they found certain situations challenging, it was easier to give themselves permission for things like rest and breaks from sensory stimulation.

“A common experience of late-diagnosed people is that they generally feel that they hadn’t received support for things that they were struggling with throughout their lives,” Kirby said. “After diagnosis, they often were able to give themselves more freedom to live life differently.”

Leffler walks to Ruby’s memorial garden at her farm in rural Kansas.

Ruby thrived after her diagnosis. She excelled at online learning, which she could do quietly from a corner in Leffler’s office, and was well-liked at the grocery store and donut shop where she worked. She planned to pursue a career in finance and marry a man who would agree to live at her mother’s house forever, Leffler recalled with a laugh.

Then a complicated storm of medical, mental and personal crises struck in early 2024. As loved ones rallied to her side, she suffered increasingly serious mood swings, disordered eating and suicidal thoughts. Mental health providers dismissed her autism diagnosis as an irrelevant detail. She died on July 11, 2024, after a sudden, impulsive moment on an otherwise normal day.

Much later, Leffler found a tattoo artist with dimples like her daughter’s and a studio painted Ruby’s favorite shade of pink. Her arms today are as colorful as Ruby’s notebooks: a collage of her favorite animals and objects, reproductions of her drawings, flowers in the shape of her handprint.

Ruby was perfect just the way she was, Leffler said. She doesn’t want any other girl like her daughter to doubt that about herself.

“She was a bright, cuddly, sparkly person,” Leffler said. “She deserves to be loved and missed.”