Why Are Girls Diagnosed With Autism Later Than Boys?

Swedish author Clara Törnvall wasn’t diagnosed with autism until she was 42. In this excerpt from ‘The Autists,’ she wonders whether the answer lies in psychiatrists’ gendered notions of what constitutes as a "special interest."

I joined a Facebook group for women with autism and posted a question about the special interests of its roughly 2,000 members. The answers came flooding in, and two different categories crystallized immediately: animals and creativity. The women in the group painted, crocheted, made jewelry, wrote, dedicated all their time to bunnies, and worked as dog psychologists or with Icelandic horses.

The child psychiatrist Svenny Kopp noticed early on in her research that the interests of autistic girls differed from those of boys. “No girl was interested in explosives or airplanes,” she said. “But they had other interests. Often, there was a social connection. It could be animals or famous people. A great many of them painted and made things. There was a lot of arts and crafts.”

Which was one reason girls weren’t diagnosed with autism as often as boys—they were thought to lack special interests. Rather, for a long time, psychologists didn’t consider girls’ special interests to be “real,” which contributed to their inability to diagnose their autism. “If a girl collected My Little Ponies and had 75 of them, this wasn’t seen as a special interest,” said Dr. Kopp. “The male doctors didn’t ask about My Little Pony. They were looking for special interests they could identify with.”

Dr. Kopp believes girls have not been valued as highly as boys. “It’s been a taboo to recognize that [boys and girls] are different, that we have different interests and don’t quite function the same way,” she explains.

To wit: On February 9, 2020, journalist Kristofer Ahlström wrote about his newfound obsession with strength training in Dagens Nyheter, one of Sweden’s biggest daily newspapers. He wondered, Why is it only men who allow themselves to be utterly absorbed by their interests beyond all sense and reason? “Why is it not as common for women to go all in for some narrow interest?” 

He used his friends and his life as points of reference. Armed with the insights of a few “masculinity experts,” he concluded that women earned less and couldn’t afford to buy expensive outdoor barbecue equipment and nutritional supplements, nor did they have the time, since they were still busy running the home. To these masculinity experts, “special interests” were synonymous with men’s hobbies. In other words, if you didn’t like pastimes that involved expensive equipment, you didn’t have any interests.

As it happened, on the same day that Dagens Nyheter published Ahlström’s article, a story appeared in the evening paper, Expressen about 12-year-old Märta Evertsson, who loves and makes hobby horses. She has sewn so many that she no longer has room for them at home. More than 10,000 people in Sweden engage in hobby-horse-making, the majority of whom are girls between the ages of 10 and 18.

Sometimes the interests are with movie stars: Carolina Alexandrou, 31, has a tattoo of Marilyn Monroe’s face on her upper arm. “I’ve always felt drawn to her. She has been my special interest,” she explained. “Sure, she’s beautiful and all that. But the things I read about her story—about the things she went through—that was more important. I could relate to so much and identify with the way she felt. She wasn’t doing very well mentally. And she wasn’t accepted and appreciated for who she really was.” Carolina’s boyfriend, Roberto, planned to take Carolina to see a big “Marilyn” exhibit in Örebro, a town several hours away, for her birthday.

As a child, Carolina always felt different. She began to experience anxiety around age 11. It took root in her and never went away. “There was something about me that I couldn’t grasp,” she said, explaining that she didn’t fit in among the other girls her own age. She didn’t have the same interests, and couldn’t understand the unwritten social rules. In upper primary school (middle school), Carolina preferred to stay home reading books and didn’t bother trying to make friends. She didn’t feel at home in the suburbs where she grew up and felt as though she didn’t belong in her own family. Her parents could see that something was wrong, but didn’t know how to help her. Visits to the psychiatric services as well as the school counselor led nowhere.

In lower secondary school (high school), Carolina chose a combined ice hockey and arts program, dedicating herself to her big interest: dance. She trained extremely hard and, she said, “I ate very little and was scared of getting fat. If it was meatballs for lunch, I’d tell myself that I could have two, max.” So Carolina lost weight, but none of the adults around her noticed. In school, she suffered from the ruckus and elevated noise level. “A classroom full of hockey boys — you can imagine. It was a nightmare. I remember trying to get to know new classmates, but afterwards I learned that they only hung out with me out of pity. I didn’t speak like them, didn’t use the same slang. They thought of me as immature and childish. I was like a child all the way up until the age of 16. I wasn’t the least bit interested in boys until I turned 18, perhaps. I was a Harry Potter fan who stayed home reading.”

Her peers didn’t read. Carolina liked letters but struggled with numbers—she didn’t pass math. She had to do a year of preparatory studies before upper secondary school. It wasn’t until she went to a school for the dramatic arts with a focus on music that Carolina found a friend who took her under wing and taught her how to become more social.

“She trained me. I was very reticent, but she made me open up. I didn’t know how to speak to people—what I could and was allowed to say. I had a really hard time with jokes.”

***

 

Linn Sundberg is an artist with a special interest in Nordic folklore. Throughout her dusky apartment hang illustrations by John Bauer on the walls, and groups of trolls, creatures of the forest, and sprites in felted wool perched on the tables. In her bookcase, I spotted the fairytale anthology series Among Gnomes and Trolls. Linn said she feels more at home in the woods than anywhere else. “I’ve never identified much with other people, I’ve always felt different and like a bit of an alien. I feel more at home among spirits than in society the way it looks today.”

She said the color green calms her; it is a common thread throughout her art. Linn has tried using other colors, but always returned to green. Linn told me her artistic work helps her regulate her energy and dampens her anxiety and overthinking. “It’s a bit like walking out into the forest and sitting there.” Linn’s explained that her method is called “acrylic pouring,” where she mixes acrylic paint with varnish glue, then uses silicone oil to achieve different effects as the paint bleeds. The paintings appear as though round cells are opening up. She also has painted with watercolors to create pictures of little nodules that look like roots. One root was an autist, with a hood pulled up and headphones.

Linn’s brain works fast, but she needs help reining herself in. “I have so many good ideas, but you can’t do everything. It can be very stressful having so many thoughts. I have a hard time focusing on things.” But when she does, the results can be extraordinary. 

When we met, Linn was doing an internship at an art gallery in town. She partook in “daily activities for people with neuropsychiatric diagnoses,” a type of legally regulated, unpaid daytime activity meant to offer stimulation and promote equal living conditions as well as full participation in society. But Linn did not have a job. Instead, she has been receiving a habilitation allowance from the National Board of Health and Welfare to be able to work at the gallery, which is run by a non-profit. The municipality pays the gallery’s rent and provides a small operating grant.

In the past, she used to receive something called activity compensation, which is offered to people under the age of 30. Now, at 31, she is on “sickness benefits in special cases.” It’s available as an option for those who haven’t learned whether they are able to enter the job market and still need support.

“Do you know any tales about changelings?” Linn asked me as we stood in front of her collection of Among Gnomes and Trolls books. 

I do. 

She continued. “They were children who were thought to have been switched out by trolls. A child behaves ‘normally’ when it’s young. But as it grows older, it starts acting a little strange—and then it’s the trolls who’ve exchanged it for a troll child. Have you ever thought about that in relation to autism?”

In the book Trolls and Men, folklorist Ebbe Schön wrote that the tales about changelings in old Swedish folklore allowed people to explain children who were different. It offered a magical explanation, through which parents could understand and process why some children didn’t develop like others and how they could be cured.

Trolls were thought to live in a kind of parallel world, and were used as scapegoats and evil reflections. Out in the woods, you could smell food from their dwellings and hear them call and shout. They were thought to have a troubled and messy family life.

Because trolls could take on human form, there was reason to suspect that strangers one encountered might actually be trolls. According to tradition, the difference between troll and human was revealed in the way they spoke. There were words that supernatural creatures were thought to shy away from. For this reason, you were meant to pay attention to the speech of strangers. People who were creative with language aroused suspicion. In our time, linguistic ingenuity and an ability to make up new words and metaphors is often associated with a neuropsychiatric diagnosis.

One of the most terrible things that trolls could do to people was to steal their newborn baby and replace them with their own child. Often, they would strike before the child was baptized, while it was not yet under Christian protection. The parents didn’t notice what had happened until much later, when their child didn’t seem able to learn how to either think or speak (or otherwise develop in a typical manner). Like a cuckoo chick, the changeling would eat the humans out of house and home. The tales describe the little one lying in bed drooling or stirring up trouble in the household. 

There were also stories about the incredible physical strength of changelings and how they could prove to be of unexpected help in heavy labor. The young trolls were older than the human children they replaced and sometimes a changeling might accidentally say too much, revealing its true age. In other words, children who were different could be perceived as being older than they really were.

Trial records from, for example, the Swedish island of Gotland in the 17th century revealed that parents would sometimes abuse their children if they were thought to be changelings. This treatment was sanctioned by custom, which led parents to believe that they were curing their child by beating them.

In the short story “The Changeling,” the Nobel Prize–winning Swedish author Selma Lagerlöf turned the myth into a cautionary tale: A farmer and his wife encountered a troll in the woods who stole their child and left her own by the side of the road. Even though the farmer’s wife knew that the troll baby was not hers, she brought the child home. The neighbors in the area advised her to flog the changeling with a cane, believing that beating it will swiftly make the troll mother return and switch the children back. But the farmer’s wife could not bring herself to strike the innocent child. She protected the troll baby from her husband, feeding it frogs and spiders—food that it liked. The farmer and their servants hated the changeling. As the years went by, their entire community turned against the wife, who stuck by the young troll. Not even when the changeling accidentally burned down the farm and her husband abandoned her did she stray from its side.

Then one day, the farmer met his real son out in the woods, and learned that his son’s life with the trolls had been mirrored by the way the young troll was treated on the farm. Every time the farmer treated the troll badly, his son was treated badly by the trolls. It worked both ways: When the farmer’s wife showed tenderness toward the changeling, the human child was treated well, too. The farmer realized that his wife’s kindness toward the changeling saved their son. Because of her ultimate sacrifice—when she renounced her husband for the sake of the young troll—the trolls could free the human child and the changeling could return home. The farmer had his wife to thank for getting their child back. Yet the happy ending to the story also suggested that the farmer’s wife would miss the changeling after he disappeared from their lives.

***

The British children’s author Beatrix Potter was deeply fascinated by mushrooms. She collected, studied, and illustrated them tirelessly. With microscopic richness of detail, she painted the spores of different kinds of mushrooms and developed her own theory about the way they reproduced. She wrote down her conclusions in an essay and sent it to the Linnean Society of London, who denied her admission for being a woman. Her hopes of dedicating herself to the science of mycology were dashed, but her strong interest in animals and nature stayed with her throughout life. She collected fossils and kept mice, frogs, hedgehogs, and a stuffed, mounted bat in her home.

From the age of 14, she kept a diary written in a secret code she had created. As an adult, she wrote and illustrated stories like The Tale of Peter Rabbit, cast with her own pets as the main characters. That one was based on her own rabbit, Peter Piper.

Visitors described her home at Hill Top farm as an outright menagerie. She’d been described by the people around her as withdrawn and eccentric, a person who took no interest in social intercourse. When a publisher suggested changes to The Tale of Peter Rabbit, Potter had the book printed by her own press.

Potter was perceived to be grouchy, and didn’t like children. There’s a story about how a 6-year-old Roald Dahl went to visit the 56-year-old Potter, to meet his idol.

“What do you want?’” she asked. 

“I’ve come to meet Beatrix Potter,” said the young Dahl. 

“Well, you’ve seen her. Now, buzz off !” 

Was Beatrix Potter autistic? The psychiatrist Michael Fitzgerald thought so.

***

In the middle of the 18th century, an ideal developed in French painting that centered on depictions of frozen moments of absolute concentration. Artists such as Jean-Baptiste Greuze and Jean-Baptiste-Siméon Chardin painted men, women, children, and elderly individuals deeply engrossed in various activities. The people in the paintings could be reading, listening, painting, writing, thinking, sleeping, studying, or praying—sometimes with their back to the observer. They were utterly and completely absorbed.

The women’s role in the paintings was often to listen to a man. Sometimes she was sewing or lost in her own reflection.

In the painting La Lecture de la Bible (‘Un père de famille qui lit la Bible à ses enfants’) from 1755, Jean-Baptise Greuze depicts a father reading from the Bible to his devoutly attentive wife and daughters. The father has stopped to contemplate the words he has just spoken; his gaze is turned inward, his eyes glassy.

Jean-Baptiste-Siméon Chardin’s philosopher in the painting Un Philosophe occupé de sa lecture (1753) has also paused to think. Chardin captures the facial expression of a reader contemplating with intensity the meaning of the words he has just read. As an observer, you feel that the philosopher has forgotten both himself and his surroundings. He doesn’t notice that we are watching him.

Why did 18th-century French artists want to depict people lost in thought? In his book Absorption and Theatricality, the American art historian and critic Michael Fried posited that it was a reaction to the exquisitely decorative and theatrical rococo movement. They wanted to return to serious, moral themes in their art and to the aesthetic ideals of previous eras. There was a longing for a more authentic expression.

The French artists of the 18th century were not the first to paint people in contemplation, but they were consciously consistent, and refined the expression. Most of all, they secularized concentration and fulfillment, which came to be about something other than religious devotion. This new French artistic ideal was also tied to the emergence of a middle-class audience who wanted to see moral, narrative motifs in art, preferably in environments they could recognize from their own lives. Introspection was rated highly, and elevated attention was a virtue, something good in and of itself.

But most of all, this development marked a shift in the view of the relationship between a work of art and its observer. Through the faraway-looking, occupied figures in the artworks—who refused to meet the observer’s gaze, or sometimes appeared to be staring right through them—they denied the observer’s existence. The observer was supposed to be absent. For the artists, it was important to avoid the impression that the figures depicted were actors on a stage, putting on a show for the audience.

The artists were creating scenes that neutralized the observer, who was left out. And the audience of the time loved to be ignored. Greuze’s and Chardin’s artworks were praised to the skies by art critics.

But what lay behind these artists’ conscious exclusion of the observer? Was it elitism? No. Paradoxically enough, the intention was the exact opposite—to invite in as many as possible. The idea was for these deeply absorbed figures to inspire the audience to pause, take in the picture, and become lost in it themselves. For the feeling in the painting to rub off.

You might call it a clever trick, like a trompe l’oeil or hypnotic effect, a manipulation to draw the observer into the painting. A bit like when parents of young children read bedtime stories about drowsy animals to put their kids to sleep, in the hope that the yawning rabbit in the story will make the little listener sleepy, too. But there was also a deeper philosophical background to the figures lost in thought in French 18th-century paintings.

Their lack of awareness also makes them lonely. Perhaps it was exactly this effect that captivated the observer, Michael Fried suggests, since that lonely feeling is familiar to almost everyone. But the sight of figures intensely engrossed can also elicit joyful recognition — at least in an autistic observer.

 

Adapted with permission of the publisher from The Autists: Women on the Spectrum, written by Clara Törnvall and translated by Alice E. Olsson. Published by Scribe Publications in November 2023. Available wherever books are sold.