Autism in Girls
- One in 68 children in the U.S. is affected by autism—but new research suggests that current diagnostic methods overlook girls, meaning even more kids may be on the spectrum.
- Behavioral and preliminary neuroimaging findings suggest autism manifests differently in girls. Notably, females with autism may be closer to typically developing males in their social abilities than typical girls or boys with autism.
- Girls with autism may be harder to diagnose for several reasons, including criteria developed specifically around males and overlapping diagnoses such as obsessive-compulsive disorder or anorexia.
When
Frances was an infant, she was late to babble, walk and talk. She was
three before she would respond to her own name. Although there were
hints that something was unusual about her development, the last thing
her parents suspected was autism. “She was very social and a very happy,
easy baby,” says Kevin Pelphrey, Frances's father.
Pelphrey is a leading autism researcher at Yale University's world-renowned Child Study Center. But even he did not recognize the condition in his daughter, who was finally diagnosed at about five years of age. Today Frances is a slender, lightly freckled 12-year-old with her dad's warm brown eyes. Like many girls her age, she is shy but also has strong opinions about what she does and does not want. At lunchtime, she and her little brother, Lowell, engage in some classic sibling squabbling—“Mom, he's kicking me!”
Lowell, seven, received an autism diagnosis much earlier, at 16 months. Their mom, Page, can recall how different the diagnostic process was for her two children. With Lowell, it was a snap. With Frances, she says, they went from doctor to doctor and were told to simply watch and wait—or that there were various physical reasons for her delays, such as not being able to see well because of an eye condition called strabismus that would require surgical treatment at 20 months. “We got a lot of different random little diagnoses,” she recalls. “They kept saying, ‘Oh, you have a girl. It's not autism.’”
In fact, the criteria for diagnosing autism spectrum disorder (ASD)—a developmental condition that is marked by social and communication difficulties and repetitive, inflexible patterns of behavior—are based on data derived almost entirely from studies of boys. These criteria, Pelphrey and other researchers believe, may be missing many girls and adult women because their symptoms look different. Historically the disorder, now estimated to affect one out of every 68 children in the U.S., was thought to be at least four times more common in boys than in girls. Experts also believed that girls with autism were, on average, more seriously affected—with more severe symptoms, such as intellectual disability. Newer research suggests that both these ideas may be wrong.
Many girls may, like Frances, be diagnosed late because autism can have different symptoms in females. Others may go undiagnosed or be given diagnoses such as attention-deficit/hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD) and even, some researchers believe, anorexia. As scientists study how this disorder plays out in girls, they are confronting findings that could overturn their ideas not only about autism but also about sex and how it both biologically and socially affects many aspects of development. They are also beginning to find ways to meet the unique needs of girls and women on the spectrum.
A 2012 study by cognitive neuroscientist Francesca Happé of King's College London and her colleagues compared the occurrence of autism traits and formal diagnoses in a sample of more than 15,000 twins. They found that if boys and girls had a similar level of such traits, the girls needed to have either more behavioral problems or significant intellectual disability, or both, to be diagnosed. This finding suggests that clinicians are missing many girls who are on the less disabling end of the autism spectrum, previously designated Asperger's syndrome.
In 2014 psychologist Thomas Frazier of the Cleveland Clinic and his colleagues assessed 2,418 autistic children, 304 of them girls. They, too, found that girls with the diagnosis were more likely to have low IQs and extreme behavior problems. The girls also had fewer (or perhaps less obvious) signs of “restricted interests”—intense fixations on a particular subject such as dinosaurs or Disney films. These interests are often a key diagnostic factor on the less severe end of the spectrum, but the examples used in diagnosis often involve stereotypically “male” interests, such as train timetables and numbers. In other words, Frazier had found further evidence that girls are being missed. And a 2013 study showed that, like Frances, girls typically receive their autism diagnoses later than boys do.
Pelphrey is among a growing group of researchers who want to understand what biological sex and gender roles can teach us about autism—and vice versa. His interest in autism is both professional and personal. Of his three children, only his middle child is typical. Kenneth, Pelphrey jokes, has classic “middle-child syndrome” and complains that his siblings “get away with murder because they can blame it on their autism.”
Pelphrey is now leading a collaboration with researchers at Harvard University, the University of California, Los Angeles, and the University of Washington to conduct a major study of girls and women with autism, which will follow participants over the course of childhood through early adulthood. The researchers want “every bit of clinical information we can get because we do not know what we ought to be looking for,” Pelphrey says. Consequently, they are also asking participants and family members to suggest areas of investigation because they know firsthand what is most helpful and most problematic.
Girls in the study will be compared with autistic boys, as well as typically developing children of both sexes, using brain scans, genetic testing and other measures. Such comparisons can help researchers tease out which developmental differences are attributable to autism, as opposed to sex, as well as whether autism itself affects sex differences in the brain and how social and biological factors interact in producing gender-typical behaviors.
Already Pelphrey is seeing fascinating differences in autistic girls in his preliminary research. “The most unusual thing we keep finding is that everything we thought we knew in terms of functional brain development is not true,” he says. “Everything we thought was true of autism seems to only be true for boys.” For example, many studies show that the brain of a boy with autism often processes social information such as eye movements and gestures using different brain regions than a typical boy's brain does. “That's been a great finding in autism,” Pelphrey says. But it does not hold up in girls, at least in his group's unpublished data gathered so far.
Pelphrey is discovering that girls with autism are indeed different from other girls in how their brain analyzes social information. But they are not like boys with autism. Each girl's brain instead looks like that of a typical boy of the same age, with reduced activity in regions normally associated with socializing. “They're still reduced relative to typically developing girls,” Pelphrey says, but the brain-activity measures they show would not be considered “autistic” in a boy. “Everything we're looking at, brain-wise, now seems to be following that pattern,” he adds. In short, the brain of a girl with autism may be more like the brain of a typical boy than that of a boy with autism.
A small study by Jane McGillivray and her colleagues at Deakin University in Australia, published in 2014, provides behavioral evidence to support this idea. McGillivray and her colleagues compared 25 autistic boys and 25 autistic girls with a similar number of typically developing children. On a measure of friendship quality and empathy, autistic girls scored as high as typically developing boys the same age—but lower than typically developing girls.
Pelphrey is finding that autism also highlights normal developmental differences between girls and boys. Sex hormones, he says, “affect just about every structure you might be interested in and just about every process you might be interested in.” Although boys generally mature much later than girls do, the differences in brain development appear to be quite big—far larger than the differences in behavior.
But inside, it was very different. Social life did not come at all naturally to her. She used her formidable intelligence to become an excellent mimic and actress, and the effort this took often exhausted her. From the time she started reading at three and throughout her childhood in gifted programs, O'Toole studied people the way others might study math. And then, she copied them—learning what most folks absorb naturally on the playground only through voracious novel reading and the aftermath of embarrassing gaffes.
O'Toole's story reflects the power of an individual to compensate for a developmental disability and hints at another reason females with autism can be easy to miss. Girls may have a greater ability to hide their symptoms. “If you were just judging on the basis of external behavior, you might not really notice that there's anything different about this person,” says University of Cambridge developmental psychopathologist Simon Baron-Cohen. “It relies much more on getting under the surface and listening to the experiences they're having rather than how they present themselves to the world.”
O'Toole's obsessive focus on reading and finding rules and regularities in social life is far more characteristic of girls with autism than boys, clinical experience suggests. Autistic boys sometimes do not care whether they have friends or not. In fact, some diagnostic guidelines specify a disinterest in socializing. Yet autistic girls tend to show a much greater desire to connect.
In addition, girls and boys with autism play differently. Studies have found that autistic girls exhibit less repetitive behavior than the boys do, and as the 2014 findings from Frazier and his colleagues suggest, girls with autism frequently do not have the same kinds of interests as stereotypical autistic boys. Instead their pastimes and preferences are more similar to those of other girls.
Frances Pelphrey's obsession with Disney characters and American Girl dolls might seem typical, not autistic, for example. O'Toole remembers compulsively arranging her Barbie dolls. Furthermore, although autism is often marked by an absence of pretend play, research finds that this is less true for girls.
Here, too, they can camouflage their symptoms. O'Toole's behavior might have seemed like typical make-believe to her parents because she staged Barbie weddings just like other little girls. But rather than imagining she was the bride, O'Toole was actually setting up static visual scenes, not story lines.
Also, unlike in boys, the difference between typical and autistic development in girls may lie less in the nature of their interests than in its level of intensity. These girls may refuse to talk about anything else or take expected conversational turns. “The words used to describe women on the spectrum come down to the word ‘too,’” O'Toole says. “Too much, too intense, too sensitive, too this, too that.”
She describes how both her sensory differences—she can be overwhelmed by crowds and is bothered by loud noise and certain textures—and her social awkwardness made her stand out. Her life was dominated by anxiety. Speaking broadly of people on the spectrum, 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.”
As she grew up, O'Toole channeled her autistic hyperfocus into another area to which culture frequently directs women: dieting and body image, with a big dollop of perfectionism. “I used to have a spreadsheet of how many calories, how many grams of this, that and the other thing [I could eat],” she says. The resulting anorexia became so severe that she had to be hospitalized when she was 25.
In the mid-2000s researchers led by psychiatrist Janet Treasure of King's College London began to explore the idea that anorexia might be one way that autism manifests itself in females, making them less likely to be identified as autistic. “There are striking similarities in the cognitive profiles,” says Kate Tchanturia, an eating disorder researcher and colleague of Treasure's at King's College London. Both people with autism and those with anorexia tend to be rigid, detail-oriented and distressed by change.
Furthermore, because many people with autism find certain tastes and food textures aversive, they often wind up with severely restricted diets. Some research hints at the connection between anorexia and autism: in 2013 Baron-Cohen and his colleagues gave a group of 1,675 teen girls—66 of whom had anorexia—assessments measuring the degree to which they had various autism traits. The research found that women with anorexia have higher levels of these traits than typical women do.
No one is suggesting that the majority of women with anorexia also have autism. A 2015 meta-analysis by Tchanturia and her colleagues puts the figure at about 23 percent—a rate of ASD far higher than that seen in the general population. What all of this suggests is that some of the “missing girls” on the spectrum may be getting eating disorder diagnoses instead.
Further, because autism and ADHD often occur together—and because people diagnosed with ADHD tend to have higher levels of autism traits than typical people do—girls who seem easily distracted or hyperactive may get this label, even when autism is more appropriate. Obsessive-compulsive behavior, rigidity and fear of change also occur in both people with autism and those with OCD, suggesting that autistic females might also be hidden in this group.
Although Grainne's IQ tests are in the low normal range, the results do not capture either her abilities or her disabilities well. Today the teenager's intense interests are boy bands and musical theater. Despite being extremely shy, she blooms on stage and loves to sing. “The play she's in, when they deliver the script, within a week, she has everybody's part memorized and every song in the score memorized,” Halliday says.
Because of a genetic condition, Grainne is short: 4′7′′—and a half, she insists. And although she is laconic and does not tend to initiate conversation, she is also bubbly and smiles frequently, clearly interested in connecting. She weighs what she does say very carefully. For example, when asked whether she thinks autistic girls are more social than boys with autism, Grainne says, “Some might be,” not wanting to generalize.
Of course, adolescence is difficult for most kids, but it is especially challenging for autistic girls. Many can cope with the far simpler world of elementary school friendships, but they hit a wall with the “mean girls” of junior high and the subtleties of flirting and dating. Moreover, puberty involves unpredictable changes such as breast development, mood swings and periods—and there are few things that autistic people hate more than change that occurs without warning. “She would like to have a boyfriend—that's why she loves the boy bands,” says Halliday, adding that she thinks Grainne may not understand what such a relationship would really mean.
Unfortunately, the autistic tendency to be direct and take things literally can make affected girls and women easy prey for sexual exploitation. O'Toole herself was the victim of an abusive relationship, and she says the problem is “endemic” among women on the spectrum, particularly because so many are acutely aware of their social isolation. “When you feel you're too difficult to love, you'll love for crumbs,” she says.
In this way, autism may be more painful for women. Autistic people who do not seem interested in social life probably do not obsess about what they are missing—but those who want to connect and cannot are tormented by their loneliness. A study published in 2014 by Baron-Cohen and his colleagues found that 66 percent of adults with the milder form of ASD (so-called Asperger's) reported suicidal thoughts, a rate nearly 10 times higher than that seen in the general population. The proportion was 71 percent among women, who made up about one third of the sample.
Until very recently, few resources have been available to help autistic girls through these difficulties. Now researchers and clinicians are starting to fill these gaps. For example, Rene Jamison, an assistant clinical professor at the University of Kansas Medical Center, runs a program in Kansas City called Girls Night Out. Aimed at helping affected girls navigate adolescence, it focuses on specific issues such as hygiene and dress. Although this emphasis might seem trivial or a concession to gender stereotypes, in fact, failing to address such “superficial” concerns can cause serious life problems and restrict independence.
Even many highly intelligent girls on the spectrum have difficulties with washing their hair, wearing deodorant and dressing appropriately, Jamison says. Some of this behavior is linked to sensory issues; other aspects of the problem are related to difficulty following the appropriate sequence of behavior when doing something you think is unimportant. “When Grainne was in seventh grade, I had to tell her it was against the law not to wear a bra,” Halliday says of her daughter, who found bras uncomfortable. Grainne also did not want to wear deodorant—saying, almost certainly accurately, that the boys smelled worse.
The Girls Night Out group does fun activities, ranging from having manicures to playing sports. Typical girls who get school credit for volunteering provide mentoring and talk about boys and other issues the girls might not want to discuss with adults. “One of the things that we really work on is getting them to try new things to figure out what they might like,” Jamison says.
In New York City, Felicity House, which its founders tout as the world's first community center for women on the spectrum, opened in 2015. Funded by the Simons Foundation, it occupies several floors of a spectacular Civil War–era mansion near Gramercy Park and offers classes and social events so autistic women can get to know and support one another. Five of the autistic women who helped to found Felicity House met a few weeks before it opened to talk about life on the spectrum. Only two had been diagnosed as children—one with Asperger's and another with what she said was “ADHD with autistic tendencies.” Of the other three women, two had struggled with depression before their diagnosis as adults.
Emily Brooks, 26, is a writer studying for her master's in disability studies at City University of New York. She identifies as gender queer and believes gender norms cause many problems for people on the spectrum. She noted, to broad agreement, that boys are allowed far greater leeway to deviate from social expectations. “If a guy does something that is considered socially inappropriate … his friends may sometimes encourage some of those behaviors,” she said, adding that “teen girls will shut you down if you do anything that's different.”
Leironica Hawkins, an artist who has created a comic book about Asperger's, also has to contend with social cues about race. “It's not just because I'm a woman on the spectrum. I'm a black woman on the spectrum, and I have to deal with social cues that [other] people can afford to ignore,” she said. She added that she thought women “are probably punished more for not behaving the way we should. I've always heard women are socially aware to the needs of others, and that's not me, most of the time … I feel like I get pressured to be that way.”
Because of these expectations, there is less tolerance for unusual behavior—and not just in high school. Many of the women report having difficulty keeping—but not getting—jobs, despite excellent qualifications. “You can see that in a faculty meeting even at the high-level academic departments,” Yale's Pelphrey says. “The guys still get away with much, much more.”
As awareness of autism grows, women and girls are already increasingly likely to be diagnosed; this generation clearly has significant advantages over those past. But much more research will need to be done to design better and more gender-appropriate diagnostic tools. Perhaps in the interim, the experiences of women with autism should teach us to be more tolerant of socially inept behavior in women—or less tolerant of it in men. Either way, it is clear that a greater understanding of autism in girls is needed to recognize this condition. And in the process it could illuminate new facets of typical behavior and the way that gender shapes the social world.
In other words, autistic minds may be stronger in areas where male brains, on average, tend to have strengths—and weaker in areas where females, again, speaking broadly, are the superior sex. (When it comes to individuals, of course, these averages do not say anything about a particular man or woman’s ability or capacity—nor do the differences necessarily reflect immutable biology rather than culture.)
Numerous recent studies have supported Baron-Cohen’s idea. In 2010 he and his colleagues found that male fetuses exposed to higher levels of testosterone in amniotic fluid during pregnancy tend to grow up to have more autism traits. A 2013 study he co-authored, led by his Cambridge colleague MengChuan Lai, found that the brain-scan differences seen in children with autism occurred most often in regions that tend to vary by gender in typical children.
In 2015 Baron-Cohen and his colleagues published results of an analysis of a large group of amniotic fluid samples from Denmark that are linked to population registries of mental health. They found that in boys, having an autism diagnosis was linked with higher levels of fetal testosterone and various other hormones, but the first cohort tested had too few girls with autism, so they are analyzing later births to see if the same results will be found. Further evidence came from a large Swedish study, also published last year, that found a 59 percent increased risk of giving birth to a child with autism among women with polycystic ovary syndrome—an endocrine disorder involving elevated levels of male hormones.
Few scientists—including Baron-Cohen—think that the extreme male brain theory is the whole story. A second idea emerges when looking at the typical strengths of women. If having female hormones and a female-type brain structure increases the ability to read the emotions of others and makes social concerns more salient, it might take a greater number of genetic or environmental “hits” to alter this capacity to the level where autism would be diagnosed. This idea is known as the “female protective” hypothesis.
Along these lines, several studies have shown that in families with affected daughters, there are higher numbers of mutations known as copy-number variations than there are in families where only boys are affected. A 2014 study by geneticist Sébastien Jacquemont of the University of Lausanne in Switzerland and his colleagues found that there was a 300 percent increase in harmful copy-number variants in females with autism, compared with males.
If either—or both—of these hypotheses is correct, then there will always be more boys than girls on the spectrum. “I imagine that once we’re very good at recognizing autism in females, there will still be a male bias,” Baron-Cohen says. “It just won’t be as marked as four to one. It might be more like two to one.” —M.S.
Pelphrey is a leading autism researcher at Yale University's world-renowned Child Study Center. But even he did not recognize the condition in his daughter, who was finally diagnosed at about five years of age. Today Frances is a slender, lightly freckled 12-year-old with her dad's warm brown eyes. Like many girls her age, she is shy but also has strong opinions about what she does and does not want. At lunchtime, she and her little brother, Lowell, engage in some classic sibling squabbling—“Mom, he's kicking me!”
Lowell, seven, received an autism diagnosis much earlier, at 16 months. Their mom, Page, can recall how different the diagnostic process was for her two children. With Lowell, it was a snap. With Frances, she says, they went from doctor to doctor and were told to simply watch and wait—or that there were various physical reasons for her delays, such as not being able to see well because of an eye condition called strabismus that would require surgical treatment at 20 months. “We got a lot of different random little diagnoses,” she recalls. “They kept saying, ‘Oh, you have a girl. It's not autism.’”
In fact, the criteria for diagnosing autism spectrum disorder (ASD)—a developmental condition that is marked by social and communication difficulties and repetitive, inflexible patterns of behavior—are based on data derived almost entirely from studies of boys. These criteria, Pelphrey and other researchers believe, may be missing many girls and adult women because their symptoms look different. Historically the disorder, now estimated to affect one out of every 68 children in the U.S., was thought to be at least four times more common in boys than in girls. Experts also believed that girls with autism were, on average, more seriously affected—with more severe symptoms, such as intellectual disability. Newer research suggests that both these ideas may be wrong.
Many girls may, like Frances, be diagnosed late because autism can have different symptoms in females. Others may go undiagnosed or be given diagnoses such as attention-deficit/hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD) and even, some researchers believe, anorexia. As scientists study how this disorder plays out in girls, they are confronting findings that could overturn their ideas not only about autism but also about sex and how it both biologically and socially affects many aspects of development. They are also beginning to find ways to meet the unique needs of girls and women on the spectrum.
It's Different for Girls
Scientists in recent years have investigated several explanations for autism's skewed gender ratio. In the process, they have uncovered social and personal factors that may help females mask or compensate for the symptoms of ASD better than males do, as well as biological factors that may prevent the condition from developing in the first place [see “The Protected Sex” below]. Research has also revealed bias in the way the disorder is diagnosed.A 2012 study by cognitive neuroscientist Francesca Happé of King's College London and her colleagues compared the occurrence of autism traits and formal diagnoses in a sample of more than 15,000 twins. They found that if boys and girls had a similar level of such traits, the girls needed to have either more behavioral problems or significant intellectual disability, or both, to be diagnosed. This finding suggests that clinicians are missing many girls who are on the less disabling end of the autism spectrum, previously designated Asperger's syndrome.
In 2014 psychologist Thomas Frazier of the Cleveland Clinic and his colleagues assessed 2,418 autistic children, 304 of them girls. They, too, found that girls with the diagnosis were more likely to have low IQs and extreme behavior problems. The girls also had fewer (or perhaps less obvious) signs of “restricted interests”—intense fixations on a particular subject such as dinosaurs or Disney films. These interests are often a key diagnostic factor on the less severe end of the spectrum, but the examples used in diagnosis often involve stereotypically “male” interests, such as train timetables and numbers. In other words, Frazier had found further evidence that girls are being missed. And a 2013 study showed that, like Frances, girls typically receive their autism diagnoses later than boys do.
Pelphrey is among a growing group of researchers who want to understand what biological sex and gender roles can teach us about autism—and vice versa. His interest in autism is both professional and personal. Of his three children, only his middle child is typical. Kenneth, Pelphrey jokes, has classic “middle-child syndrome” and complains that his siblings “get away with murder because they can blame it on their autism.”
Pelphrey is now leading a collaboration with researchers at Harvard University, the University of California, Los Angeles, and the University of Washington to conduct a major study of girls and women with autism, which will follow participants over the course of childhood through early adulthood. The researchers want “every bit of clinical information we can get because we do not know what we ought to be looking for,” Pelphrey says. Consequently, they are also asking participants and family members to suggest areas of investigation because they know firsthand what is most helpful and most problematic.
Girls in the study will be compared with autistic boys, as well as typically developing children of both sexes, using brain scans, genetic testing and other measures. Such comparisons can help researchers tease out which developmental differences are attributable to autism, as opposed to sex, as well as whether autism itself affects sex differences in the brain and how social and biological factors interact in producing gender-typical behaviors.
Already Pelphrey is seeing fascinating differences in autistic girls in his preliminary research. “The most unusual thing we keep finding is that everything we thought we knew in terms of functional brain development is not true,” he says. “Everything we thought was true of autism seems to only be true for boys.” For example, many studies show that the brain of a boy with autism often processes social information such as eye movements and gestures using different brain regions than a typical boy's brain does. “That's been a great finding in autism,” Pelphrey says. But it does not hold up in girls, at least in his group's unpublished data gathered so far.
Pelphrey is discovering that girls with autism are indeed different from other girls in how their brain analyzes social information. But they are not like boys with autism. Each girl's brain instead looks like that of a typical boy of the same age, with reduced activity in regions normally associated with socializing. “They're still reduced relative to typically developing girls,” Pelphrey says, but the brain-activity measures they show would not be considered “autistic” in a boy. “Everything we're looking at, brain-wise, now seems to be following that pattern,” he adds. In short, the brain of a girl with autism may be more like the brain of a typical boy than that of a boy with autism.
A small study by Jane McGillivray and her colleagues at Deakin University in Australia, published in 2014, provides behavioral evidence to support this idea. McGillivray and her colleagues compared 25 autistic boys and 25 autistic girls with a similar number of typically developing children. On a measure of friendship quality and empathy, autistic girls scored as high as typically developing boys the same age—but lower than typically developing girls.
Pelphrey is finding that autism also highlights normal developmental differences between girls and boys. Sex hormones, he says, “affect just about every structure you might be interested in and just about every process you might be interested in.” Although boys generally mature much later than girls do, the differences in brain development appear to be quite big—far larger than the differences in behavior.
Masking Autism
Jennifer O'Toole, an author and founder of the Asperkids Web site and company, was not diagnosed until after her husband, daughter and sons were found to be on the spectrum. On the outside, she looked pretty much the opposite of autistic. At Brown University, she was a cheerleader and sorority girl whose boyfriend was the president of his fraternity.But inside, it was very different. Social life did not come at all naturally to her. She used her formidable intelligence to become an excellent mimic and actress, and the effort this took often exhausted her. From the time she started reading at three and throughout her childhood in gifted programs, O'Toole studied people the way others might study math. And then, she copied them—learning what most folks absorb naturally on the playground only through voracious novel reading and the aftermath of embarrassing gaffes.
O'Toole's story reflects the power of an individual to compensate for a developmental disability and hints at another reason females with autism can be easy to miss. Girls may have a greater ability to hide their symptoms. “If you were just judging on the basis of external behavior, you might not really notice that there's anything different about this person,” says University of Cambridge developmental psychopathologist Simon Baron-Cohen. “It relies much more on getting under the surface and listening to the experiences they're having rather than how they present themselves to the world.”
O'Toole's obsessive focus on reading and finding rules and regularities in social life is far more characteristic of girls with autism than boys, clinical experience suggests. Autistic boys sometimes do not care whether they have friends or not. In fact, some diagnostic guidelines specify a disinterest in socializing. Yet autistic girls tend to show a much greater desire to connect.
In addition, girls and boys with autism play differently. Studies have found that autistic girls exhibit less repetitive behavior than the boys do, and as the 2014 findings from Frazier and his colleagues suggest, girls with autism frequently do not have the same kinds of interests as stereotypical autistic boys. Instead their pastimes and preferences are more similar to those of other girls.
Frances Pelphrey's obsession with Disney characters and American Girl dolls might seem typical, not autistic, for example. O'Toole remembers compulsively arranging her Barbie dolls. Furthermore, although autism is often marked by an absence of pretend play, research finds that this is less true for girls.
Here, too, they can camouflage their symptoms. O'Toole's behavior might have seemed like typical make-believe to her parents because she staged Barbie weddings just like other little girls. But rather than imagining she was the bride, O'Toole was actually setting up static visual scenes, not story lines.
Also, unlike in boys, the difference between typical and autistic development in girls may lie less in the nature of their interests than in its level of intensity. These girls may refuse to talk about anything else or take expected conversational turns. “The words used to describe women on the spectrum come down to the word ‘too,’” O'Toole says. “Too much, too intense, too sensitive, too this, too that.”
She describes how both her sensory differences—she can be overwhelmed by crowds and is bothered by loud noise and certain textures—and her social awkwardness made her stand out. Her life was dominated by anxiety. Speaking broadly of people on the spectrum, 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.”
As she grew up, O'Toole channeled her autistic hyperfocus into another area to which culture frequently directs women: dieting and body image, with a big dollop of perfectionism. “I used to have a spreadsheet of how many calories, how many grams of this, that and the other thing [I could eat],” she says. The resulting anorexia became so severe that she had to be hospitalized when she was 25.
In the mid-2000s researchers led by psychiatrist Janet Treasure of King's College London began to explore the idea that anorexia might be one way that autism manifests itself in females, making them less likely to be identified as autistic. “There are striking similarities in the cognitive profiles,” says Kate Tchanturia, an eating disorder researcher and colleague of Treasure's at King's College London. Both people with autism and those with anorexia tend to be rigid, detail-oriented and distressed by change.
Furthermore, because many people with autism find certain tastes and food textures aversive, they often wind up with severely restricted diets. Some research hints at the connection between anorexia and autism: in 2013 Baron-Cohen and his colleagues gave a group of 1,675 teen girls—66 of whom had anorexia—assessments measuring the degree to which they had various autism traits. The research found that women with anorexia have higher levels of these traits than typical women do.
No one is suggesting that the majority of women with anorexia also have autism. A 2015 meta-analysis by Tchanturia and her colleagues puts the figure at about 23 percent—a rate of ASD far higher than that seen in the general population. What all of this suggests is that some of the “missing girls” on the spectrum may be getting eating disorder diagnoses instead.
Further, because autism and ADHD often occur together—and because people diagnosed with ADHD tend to have higher levels of autism traits than typical people do—girls who seem easily distracted or hyperactive may get this label, even when autism is more appropriate. Obsessive-compulsive behavior, rigidity and fear of change also occur in both people with autism and those with OCD, suggesting that autistic females might also be hidden in this group.
Double Standards
Even when young women are comparatively “easy” to diagnose, they still face many challenges in the course of development—particularly social ones. This was the case for Grainne. Her mother, Maggie Halliday, had grown up in a large Irish family and could see early on that her third child, Grainne, was different. “I knew from when she was a couple of months old that there was something not right,” Halliday says. “She didn't like to be held or cuddled. She could make herself a dead weight and just—you couldn't pick her up.”Although Grainne's IQ tests are in the low normal range, the results do not capture either her abilities or her disabilities well. Today the teenager's intense interests are boy bands and musical theater. Despite being extremely shy, she blooms on stage and loves to sing. “The play she's in, when they deliver the script, within a week, she has everybody's part memorized and every song in the score memorized,” Halliday says.
Because of a genetic condition, Grainne is short: 4′7′′—and a half, she insists. And although she is laconic and does not tend to initiate conversation, she is also bubbly and smiles frequently, clearly interested in connecting. She weighs what she does say very carefully. For example, when asked whether she thinks autistic girls are more social than boys with autism, Grainne says, “Some might be,” not wanting to generalize.
Of course, adolescence is difficult for most kids, but it is especially challenging for autistic girls. Many can cope with the far simpler world of elementary school friendships, but they hit a wall with the “mean girls” of junior high and the subtleties of flirting and dating. Moreover, puberty involves unpredictable changes such as breast development, mood swings and periods—and there are few things that autistic people hate more than change that occurs without warning. “She would like to have a boyfriend—that's why she loves the boy bands,” says Halliday, adding that she thinks Grainne may not understand what such a relationship would really mean.
Unfortunately, the autistic tendency to be direct and take things literally can make affected girls and women easy prey for sexual exploitation. O'Toole herself was the victim of an abusive relationship, and she says the problem is “endemic” among women on the spectrum, particularly because so many are acutely aware of their social isolation. “When you feel you're too difficult to love, you'll love for crumbs,” she says.
In this way, autism may be more painful for women. Autistic people who do not seem interested in social life probably do not obsess about what they are missing—but those who want to connect and cannot are tormented by their loneliness. A study published in 2014 by Baron-Cohen and his colleagues found that 66 percent of adults with the milder form of ASD (so-called Asperger's) reported suicidal thoughts, a rate nearly 10 times higher than that seen in the general population. The proportion was 71 percent among women, who made up about one third of the sample.
Until very recently, few resources have been available to help autistic girls through these difficulties. Now researchers and clinicians are starting to fill these gaps. For example, Rene Jamison, an assistant clinical professor at the University of Kansas Medical Center, runs a program in Kansas City called Girls Night Out. Aimed at helping affected girls navigate adolescence, it focuses on specific issues such as hygiene and dress. Although this emphasis might seem trivial or a concession to gender stereotypes, in fact, failing to address such “superficial” concerns can cause serious life problems and restrict independence.
Even many highly intelligent girls on the spectrum have difficulties with washing their hair, wearing deodorant and dressing appropriately, Jamison says. Some of this behavior is linked to sensory issues; other aspects of the problem are related to difficulty following the appropriate sequence of behavior when doing something you think is unimportant. “When Grainne was in seventh grade, I had to tell her it was against the law not to wear a bra,” Halliday says of her daughter, who found bras uncomfortable. Grainne also did not want to wear deodorant—saying, almost certainly accurately, that the boys smelled worse.
The Girls Night Out group does fun activities, ranging from having manicures to playing sports. Typical girls who get school credit for volunteering provide mentoring and talk about boys and other issues the girls might not want to discuss with adults. “One of the things that we really work on is getting them to try new things to figure out what they might like,” Jamison says.
In New York City, Felicity House, which its founders tout as the world's first community center for women on the spectrum, opened in 2015. Funded by the Simons Foundation, it occupies several floors of a spectacular Civil War–era mansion near Gramercy Park and offers classes and social events so autistic women can get to know and support one another. Five of the autistic women who helped to found Felicity House met a few weeks before it opened to talk about life on the spectrum. Only two had been diagnosed as children—one with Asperger's and another with what she said was “ADHD with autistic tendencies.” Of the other three women, two had struggled with depression before their diagnosis as adults.
Emily Brooks, 26, is a writer studying for her master's in disability studies at City University of New York. She identifies as gender queer and believes gender norms cause many problems for people on the spectrum. She noted, to broad agreement, that boys are allowed far greater leeway to deviate from social expectations. “If a guy does something that is considered socially inappropriate … his friends may sometimes encourage some of those behaviors,” she said, adding that “teen girls will shut you down if you do anything that's different.”
Leironica Hawkins, an artist who has created a comic book about Asperger's, also has to contend with social cues about race. “It's not just because I'm a woman on the spectrum. I'm a black woman on the spectrum, and I have to deal with social cues that [other] people can afford to ignore,” she said. She added that she thought women “are probably punished more for not behaving the way we should. I've always heard women are socially aware to the needs of others, and that's not me, most of the time … I feel like I get pressured to be that way.”
Because of these expectations, there is less tolerance for unusual behavior—and not just in high school. Many of the women report having difficulty keeping—but not getting—jobs, despite excellent qualifications. “You can see that in a faculty meeting even at the high-level academic departments,” Yale's Pelphrey says. “The guys still get away with much, much more.”
As awareness of autism grows, women and girls are already increasingly likely to be diagnosed; this generation clearly has significant advantages over those past. But much more research will need to be done to design better and more gender-appropriate diagnostic tools. Perhaps in the interim, the experiences of women with autism should teach us to be more tolerant of socially inept behavior in women—or less tolerant of it in men. Either way, it is clear that a greater understanding of autism in girls is needed to recognize this condition. And in the process it could illuminate new facets of typical behavior and the way that gender shapes the social world.
The Protected Sex
Simon Baron-Cohen, a professor of developmental psychopathology and director of the University of Cambridge’s Autism Research Center, has helped develop several of the major theories that are guiding current thinking about autism. One of these hypotheses, which he is continuing to test, is the “extreme male brain” theory, which first appeared in the literature in 2002. The idea is that autism is caused by fetal exposure to higher than normal levels of male hormones, such as testosterone. This occurrence shapes a mind that is more focused on “systemizing” (understanding and categorizing objects and ideas) than “empathizing” (considering social interactions and other people’s perspectives).In other words, autistic minds may be stronger in areas where male brains, on average, tend to have strengths—and weaker in areas where females, again, speaking broadly, are the superior sex. (When it comes to individuals, of course, these averages do not say anything about a particular man or woman’s ability or capacity—nor do the differences necessarily reflect immutable biology rather than culture.)
Numerous recent studies have supported Baron-Cohen’s idea. In 2010 he and his colleagues found that male fetuses exposed to higher levels of testosterone in amniotic fluid during pregnancy tend to grow up to have more autism traits. A 2013 study he co-authored, led by his Cambridge colleague MengChuan Lai, found that the brain-scan differences seen in children with autism occurred most often in regions that tend to vary by gender in typical children.
In 2015 Baron-Cohen and his colleagues published results of an analysis of a large group of amniotic fluid samples from Denmark that are linked to population registries of mental health. They found that in boys, having an autism diagnosis was linked with higher levels of fetal testosterone and various other hormones, but the first cohort tested had too few girls with autism, so they are analyzing later births to see if the same results will be found. Further evidence came from a large Swedish study, also published last year, that found a 59 percent increased risk of giving birth to a child with autism among women with polycystic ovary syndrome—an endocrine disorder involving elevated levels of male hormones.
Few scientists—including Baron-Cohen—think that the extreme male brain theory is the whole story. A second idea emerges when looking at the typical strengths of women. If having female hormones and a female-type brain structure increases the ability to read the emotions of others and makes social concerns more salient, it might take a greater number of genetic or environmental “hits” to alter this capacity to the level where autism would be diagnosed. This idea is known as the “female protective” hypothesis.
Along these lines, several studies have shown that in families with affected daughters, there are higher numbers of mutations known as copy-number variations than there are in families where only boys are affected. A 2014 study by geneticist Sébastien Jacquemont of the University of Lausanne in Switzerland and his colleagues found that there was a 300 percent increase in harmful copy-number variants in females with autism, compared with males.
If either—or both—of these hypotheses is correct, then there will always be more boys than girls on the spectrum. “I imagine that once we’re very good at recognizing autism in females, there will still be a male bias,” Baron-Cohen says. “It just won’t be as marked as four to one. It might be more like two to one.” —M.S.
Autism spectrum disorder
Autism
spectrum disorder (ASD) is a developmental disorder. It often appears in
the first 3 years of life. ASD affects the brain's ability to develop
normal social and communication skills.
Causes
The
exact cause of ASD isn't known. It's likely a number of factors that
lead to ASD. Research shows that genes may be involved since ASD runs in
some families. Certain medicines taken during pregnancy may also lead
to ASD in the child.
Other causes have been suspected, but not proven. Some scientists believe that damage to a part of the brain, called the amygdala, may be involved. Others are looking at whether a virus may trigger symptoms.
Some parents have heard that vaccines may cause ASD. But studies have found no link between vaccines and ASD. All expert medical and government groups state that there is no link between vaccines and ASD.
The increase in children with ASD may be due to better diagnosis and newer definitions of ASD. Autism spectrum disorder now includes syndromes that used to be regarded as separate disorders:
Other causes have been suspected, but not proven. Some scientists believe that damage to a part of the brain, called the amygdala, may be involved. Others are looking at whether a virus may trigger symptoms.
Some parents have heard that vaccines may cause ASD. But studies have found no link between vaccines and ASD. All expert medical and government groups state that there is no link between vaccines and ASD.
The increase in children with ASD may be due to better diagnosis and newer definitions of ASD. Autism spectrum disorder now includes syndromes that used to be regarded as separate disorders:
- Autistic disorder
- Asperger syndrome
- Childhood disintegrative disorder
- Pervasive developmental disorder
Symptoms
Most
parents of ASD children suspect that something is wrong by the time the
child is 18 months old. Children with ASD often have problems with:
Symptoms can vary from moderate to severe.
A person with autism may:
- Pretend play
- Social interactions
- Verbal and nonverbal communication
Symptoms can vary from moderate to severe.
A person with autism may:
- Be very sensitive in sight, hearing, touch, smell, or taste (for example, they refuse to wear "itchy" clothes and get upset if they're forced to wear the clothes)
- Be very upset when routines are changed
- Repeat body movements over and over
- Be unusually attached to things
- Can't start or maintain a conversation
- Uses gestures instead of words
- Develops language slowly or not at all
- Doesn't adjust gaze to look at objects that others are looking at
- Doesn't refer to self the right way (for example, says "you want water" when the child means "I want water")
- Doesn't point to show other people objects (normally occurs in the first 14 months of life)
- Repeats words or memorized passages, such as commercials
- Doesn't make friends
- Doesn't play interactive games
- Is withdrawn
- May not respond to eye contact or smiles, or may avoid eye contact
- May treat others as objects
- Prefers to be alone rather than with others
- Isn't able to show empathy
- Doesn't startle at loud noises
- Has very high or very low senses of sight, hearing, touch, smell, or taste
- May find normal noises painful and hold their hands over their ears
- May withdraw from physical contact because it's too stimulating or overwhelming
- Rubs surfaces, mouths or licks objects
- May have a very high or very low response to pain
- Doesn't imitate the actions of others
- Prefers solitary or ritualistic play
- Shows little pretend or imaginative play
- Acts out with intense tantrums
- Gets stuck on a single topic or task
- Has a short attention span
- Has very narrow interests
- Is overactive or very passive
- Is aggressive toward others or self
- Shows a strong need for things being the same
- Repeats body movements
Exams and Tests
All
children should have routine exams done by their pediatrician. More
tests may be needed if the doctor or parents are concerned. This is true
if a child doesn't meet any of these language milestones:
A health care provider experienced in diagnosing and treating ASD should see the child to make the actual diagnosis. Because there isn't a blood test for ASD, diagnosis is often based on guidelines from a medical book titled Diagnostic and Statistical Manual of Mental Disorders (DSM-V).
An evaluation of ASD often includes a complete physical and nervous system (neurologic) exam. Tests may be done to see if there is a problem with genes or the body's metabolism. Metabolism is the body's physical and chemical processes.
ASD includes a broad spectrum of symptoms. So, a single, brief evaluation can't tell a child's true abilities. It's best to have a team of specialists to evaluate the child. They might evaluate:
- Babbling by 12 months
- Gesturing (pointing, waving bye-bye) by 12 months
- Saying single words by 16 months
- Saying two-word spontaneous phrases by 24 months (not just echoing)
- Losing any language or social skills at any age
A health care provider experienced in diagnosing and treating ASD should see the child to make the actual diagnosis. Because there isn't a blood test for ASD, diagnosis is often based on guidelines from a medical book titled Diagnostic and Statistical Manual of Mental Disorders (DSM-V).
An evaluation of ASD often includes a complete physical and nervous system (neurologic) exam. Tests may be done to see if there is a problem with genes or the body's metabolism. Metabolism is the body's physical and chemical processes.
ASD includes a broad spectrum of symptoms. So, a single, brief evaluation can't tell a child's true abilities. It's best to have a team of specialists to evaluate the child. They might evaluate:
- Communication
- Language
- Motor skills
- Speech
- Success at school
- Thinking abilities
Treatment
At
this time, there is no cure for ASD. A treatment program will greatly
improve the outlook for most young children. Most programs build on the
interests of the child in a highly structured schedule of constructive
activities.
Treatment plans may combine techniques, including:
This program is for younger children. It helps in some cases. ABA uses one-on-one teaching that reinforces various skills. The goal is to get the child close to normal functioning for their age.
An ABA program is often done in a child's home. A behavioral psychologist oversees the program. ABA programs can be very expensive and aren't widely used by school systems. Parents often have to find funding and staffing from other sources, which aren't available in many communities.
TEACCH
Another program is called the Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH). It uses picture schedules and other visual cues. These help children work on their own and organize and structure their environments.
Though TEACCH tries to improve a child's skills and ability to adapt, it also accepts the problems associated with ASD. Unlike ABA programs, TEACCH doesn't expect children to achieve typical development with treatment.
MEDICINES
There is no medicine that treats ASD itself. But medicines are often used to treat behavior or emotional problems that people with ASD may have. These include:
DIET
Some children with ASD seem to do well on a gluten-free or casein-free diet. Gluten is in foods containing wheat, rye, and barley. Casein is in milk, cheese, and other dairy products. Not all experts agree that changes in diet make a difference. And not all studies have shown positive results.
If you're thinking about these or other diet changes, talk to both a doctor and a registered dietitian. You want to be sure that your child is still getting enough calories and the right nutrients.
OTHER APPROACHES
Beware of widely publicized treatments for ASD that don't have scientific support, and reports of miracle cures. If your child has ASD, talk with other parents. Also discuss your concerns with ASD specialists. Follow the progress of ASD research, which is rapidly developing.
Treatment plans may combine techniques, including:
- Applied behavior analysis (ABA)
- Medicines, if needed
- Occupational therapy
- Physical therapy
- Speech-language therapy
This program is for younger children. It helps in some cases. ABA uses one-on-one teaching that reinforces various skills. The goal is to get the child close to normal functioning for their age.
An ABA program is often done in a child's home. A behavioral psychologist oversees the program. ABA programs can be very expensive and aren't widely used by school systems. Parents often have to find funding and staffing from other sources, which aren't available in many communities.
TEACCH
Another program is called the Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH). It uses picture schedules and other visual cues. These help children work on their own and organize and structure their environments.
Though TEACCH tries to improve a child's skills and ability to adapt, it also accepts the problems associated with ASD. Unlike ABA programs, TEACCH doesn't expect children to achieve typical development with treatment.
MEDICINES
There is no medicine that treats ASD itself. But medicines are often used to treat behavior or emotional problems that people with ASD may have. These include:
- Aggression
- Anxiety
- Attention problems
- Extreme compulsions that the child cannot stop
- Hyperactivity
- Impulsiveness
- Irritability
- Mood swings
- Outbursts
- Sleep difficulty
- Tantrums
DIET
Some children with ASD seem to do well on a gluten-free or casein-free diet. Gluten is in foods containing wheat, rye, and barley. Casein is in milk, cheese, and other dairy products. Not all experts agree that changes in diet make a difference. And not all studies have shown positive results.
If you're thinking about these or other diet changes, talk to both a doctor and a registered dietitian. You want to be sure that your child is still getting enough calories and the right nutrients.
OTHER APPROACHES
Beware of widely publicized treatments for ASD that don't have scientific support, and reports of miracle cures. If your child has ASD, talk with other parents. Also discuss your concerns with ASD specialists. Follow the progress of ASD research, which is rapidly developing.
Support Groups
Many organizations provide additional information and help on ASD.
Outlook (Prognosis)
With
the right treatment, many ASD symptoms can be improved. Most people
with ASD have some symptoms throughout their lives. But, they're able to
live with their families or in the community.
Possible Complications
ASD can be linked with other brain disorders, such as:
The stress of dealing with autism can lead to social and emotional problems for families and caregivers, and for the person with autism.
- Fragile X syndrome
- Intellectual disability
- Tuberous sclerosis
The stress of dealing with autism can lead to social and emotional problems for families and caregivers, and for the person with autism.
When to Contact a Medical Professional
Parents
usually suspect that there is a developmental problem long before a
diagnosis is made. Call your provider if you think that your child is
not developing normally.
Alternative Names
Autism; Autistic disorder; Asperger syndrome; Childhood disintegrative disorder; Pervasive developmental disorder
Great question! Many children with autism take longer than is typical to learn how to use the toilet. This delay can stem from a variety of reasons.
* Many children with autism have a general developmental delay. That is, they simply learn new skills more slowly than other children do.
* Many children who have autism have great difficulty breaking long-established routines – in this case using a diaper. Plus, there are relatively few opportunities to practice toileting during the day, as there are only so many times a child genuinely needs “to go.”
* Communication challenges – such as your son’s limited verbal abilities – clearly add to the challenge for many children on the autism spectrum.
* It’s also common for children with autism to develop anxiety around toileting.
For example, some children with communication challenges won’t understand the question – “Do you need to you use the bathroom now?” Or they may not know how to respond to it or otherwise signal that they need to use the toilet.
Even nonverbal communication can be a challenge among children with autism. In our practices, many parents tell us that their children don’t show the usual signs of an impending accident. For example, crossing their legs, grabbing themselves or even the classic “potty dance.” In other words, these children seem to “go without warning,” making it more difficult for the caregiver to get the child to the toilet in time.
#1. When it comes to communication: less is more! Use clear and simple pictures or visual prompts such as the visual support below from the Autism Speaks tool kit.
Use the visual prompt with simple and direct language to help your child understand what is expected. For example, say “Time for potty” instead of asking “Do you need to use the potty now?”
We’ve found it most effective when parents simultaneously present the verbal direction with the visual support while immediately guiding the child to the toilet with little or no additional discussion.
#2. Don’t delay the underwear! Move your child into underwear as soon as possible. We realize that this seems an intimidating step for many parents. But we’ve found it’s really important. Let’s face it, modern diapers and pull-ups can be too good at whisking away the pee. As a result, your child may not even realize that he has urinated. Putting your child in underwear helps him associate accidents with the discomfort of wetness on his skin.
#3. Don’t fuss over accidents. When your child does have an accident, minimize discussing, cajoling, pleading, teasing or other fussing that can have the unintended result of reinforcing the accident behavior. Instead, provide a brief reminder that you expect your child to use the toilet next time he needs to go. Then complete the cleanup with as little fanfare and discussion as possible. Save your attention for when your child is using – or attempting to use – the toilet.
#4. Reward the desired behaviors. Identify some activities, toys or small treats that will motivate your child. Reserve these for rewarding your child’s toileting successes, and only for rewarding toileting success. Chances are your child will work harder at achieving success if he can’t get these items any other way.
Importantly, deliver the rewards as soon as possible after your child uses the toilet to pee or poop. Don’t wait! We’ve found that quick delivery of the reward tends to speed skill acquisition.
And remember those visual supports. For example, you can incorporate a picture of the reward in your child’s toileting visual schedule. OR use a “First-Then” board to illustrate “First use the toilet, and then get your reward.” (See example below.)
Image courtesy Time for a Future: Centre for Child Development
In the early stages of training, reward each small success – even a small dribble of urine. These are important behaviors that you can build upon during subsequent bathroom trips.
#5 Use rewards to communicate. Sometimes, rewards can help you communicate your expectations to your child. This is especially important for children who have difficulty understanding “if, then” rules.
For example, your child may not understand, “If you pee in the potty, you can have 5 minutes of iPad.” He may do better if you increase the opportunities for success and reward. How? Try the following:
1. On a day you are both at home, increase the fluids he drinks. This will give you more chances to take him to the bathroom for a successful pee. Reward each tinkle!
2. Look for patterns in when your child has accidents. It can help to write down the time and place of each accident for several days. You may start to see a pattern emerge. For example, you may find that he often urinates around 30 minutes after drinking a glass of water, milk or other beverage. Use this information to schedule his bathroom trips around times he seems most likely to pee.
3. Remember to make those rewards immediate and consistent. This increases the chances that your child makes the connection between peeing and receiving his reward.
#6. Empower your child to communicate. It’s especially important to help children with limited verbal abilities to signal their need to use the toilet. Once your child is consistently using the toilet when you bring him to the bathroom, it’s time to teach him a simple way to tell you he needs “to go.”
Consider encouraging him to use a visual support such as a picture of a toilet. Consider clipping it to his belt loop or shirt button hole so he can easily point to it. Or, if your child uses an assisted communication device, you can incorporate a picture of a toilet that he can press to give you an audible cue.
Ideally, you want him to use these cues when he feels his bladder is full. It can help to slowly stretch out how often you take him to the bathroom unprompted. In other words, you need to give him the chance to recognize what a full bladder feels like – and then experience the relief of peeing in the toilet. As we all know, that relieved feeling can be its own “natural” reward for using the toilet.
As your child becomes increasingly attuned to when his bladder and bowel is full, he may begin to show more obvious signs of a full bladder. You may start to see an increase in rocking, holding oneself, more vocalizations or other signs that he’s ready for a trip to the bathroom.
Sometimes a child may simply look intently at you – or toward the bathroom – when he or she needs to go. It’s particularly helpful for parents, teachers and other caregivers to become sensitive to these “tells” and immediately encourage the child to use the chosen communication method. This can be with whatever method works best – e.g., handing you the toilet picture or pressing the toilet button on a speech device.
Definitely reward your child for any effort to communicate.
7. If needed, get professional help. As parents, we often benefit from an expert eye and fresh perspective in what can be a challenging experience for many.
A diagnosis of ASD now includes several conditions that used to be diagnosed separately: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. These conditions are now all called autism spectrum disorder.
Children or adults with ASD might:
Seven toilet training tips that help nonverbal kids with autism
Today’s “Got Questions?” answer is by psychologists Courtney Aponte and Daniel Mruzek, of the University of Rochester Medical Center, one of 14 sites in the Autism Speaks Autism Treatment Network.
Great question! Many children with autism take longer than is typical to learn how to use the toilet. This delay can stem from a variety of reasons.
* Many children with autism have a general developmental delay. That is, they simply learn new skills more slowly than other children do.
* Many children who have autism have great difficulty breaking long-established routines – in this case using a diaper. Plus, there are relatively few opportunities to practice toileting during the day, as there are only so many times a child genuinely needs “to go.”
* Communication challenges – such as your son’s limited verbal abilities – clearly add to the challenge for many children on the autism spectrum.
* It’s also common for children with autism to develop anxiety around toileting.
For example, some children with communication challenges won’t understand the question – “Do you need to you use the bathroom now?” Or they may not know how to respond to it or otherwise signal that they need to use the toilet.
Even nonverbal communication can be a challenge among children with autism. In our practices, many parents tell us that their children don’t show the usual signs of an impending accident. For example, crossing their legs, grabbing themselves or even the classic “potty dance.” In other words, these children seem to “go without warning,” making it more difficult for the caregiver to get the child to the toilet in time.
#1. When it comes to communication: less is more! Use clear and simple pictures or visual prompts such as the visual support below from the Autism Speaks tool kit.
Use the visual prompt with simple and direct language to help your child understand what is expected. For example, say “Time for potty” instead of asking “Do you need to use the potty now?”
We’ve found it most effective when parents simultaneously present the verbal direction with the visual support while immediately guiding the child to the toilet with little or no additional discussion.
#2. Don’t delay the underwear! Move your child into underwear as soon as possible. We realize that this seems an intimidating step for many parents. But we’ve found it’s really important. Let’s face it, modern diapers and pull-ups can be too good at whisking away the pee. As a result, your child may not even realize that he has urinated. Putting your child in underwear helps him associate accidents with the discomfort of wetness on his skin.
#3. Don’t fuss over accidents. When your child does have an accident, minimize discussing, cajoling, pleading, teasing or other fussing that can have the unintended result of reinforcing the accident behavior. Instead, provide a brief reminder that you expect your child to use the toilet next time he needs to go. Then complete the cleanup with as little fanfare and discussion as possible. Save your attention for when your child is using – or attempting to use – the toilet.
#4. Reward the desired behaviors. Identify some activities, toys or small treats that will motivate your child. Reserve these for rewarding your child’s toileting successes, and only for rewarding toileting success. Chances are your child will work harder at achieving success if he can’t get these items any other way.
Importantly, deliver the rewards as soon as possible after your child uses the toilet to pee or poop. Don’t wait! We’ve found that quick delivery of the reward tends to speed skill acquisition.
And remember those visual supports. For example, you can incorporate a picture of the reward in your child’s toileting visual schedule. OR use a “First-Then” board to illustrate “First use the toilet, and then get your reward.” (See example below.)
Image courtesy Time for a Future: Centre for Child DevelopmentIn the early stages of training, reward each small success – even a small dribble of urine. These are important behaviors that you can build upon during subsequent bathroom trips.
#5 Use rewards to communicate. Sometimes, rewards can help you communicate your expectations to your child. This is especially important for children who have difficulty understanding “if, then” rules.
For example, your child may not understand, “If you pee in the potty, you can have 5 minutes of iPad.” He may do better if you increase the opportunities for success and reward. How? Try the following:
1. On a day you are both at home, increase the fluids he drinks. This will give you more chances to take him to the bathroom for a successful pee. Reward each tinkle!
2. Look for patterns in when your child has accidents. It can help to write down the time and place of each accident for several days. You may start to see a pattern emerge. For example, you may find that he often urinates around 30 minutes after drinking a glass of water, milk or other beverage. Use this information to schedule his bathroom trips around times he seems most likely to pee.
3. Remember to make those rewards immediate and consistent. This increases the chances that your child makes the connection between peeing and receiving his reward.
#6. Empower your child to communicate. It’s especially important to help children with limited verbal abilities to signal their need to use the toilet. Once your child is consistently using the toilet when you bring him to the bathroom, it’s time to teach him a simple way to tell you he needs “to go.”
Consider encouraging him to use a visual support such as a picture of a toilet. Consider clipping it to his belt loop or shirt button hole so he can easily point to it. Or, if your child uses an assisted communication device, you can incorporate a picture of a toilet that he can press to give you an audible cue.
Ideally, you want him to use these cues when he feels his bladder is full. It can help to slowly stretch out how often you take him to the bathroom unprompted. In other words, you need to give him the chance to recognize what a full bladder feels like – and then experience the relief of peeing in the toilet. As we all know, that relieved feeling can be its own “natural” reward for using the toilet.
As your child becomes increasingly attuned to when his bladder and bowel is full, he may begin to show more obvious signs of a full bladder. You may start to see an increase in rocking, holding oneself, more vocalizations or other signs that he’s ready for a trip to the bathroom.
Sometimes a child may simply look intently at you – or toward the bathroom – when he or she needs to go. It’s particularly helpful for parents, teachers and other caregivers to become sensitive to these “tells” and immediately encourage the child to use the chosen communication method. This can be with whatever method works best – e.g., handing you the toilet picture or pressing the toilet button on a speech device.
Definitely reward your child for any effort to communicate.
7. If needed, get professional help. As parents, we often benefit from an expert eye and fresh perspective in what can be a challenging experience for many.
Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges. CDC is committed to continuing to provide essential data on ASD, search for factors that put children at risk for ASD and possible causes, and develop resources that help identify children with ASD as early as possible.
Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.
A diagnosis of ASD now includes several conditions that used to be diagnosed separately: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. These conditions are now all called autism spectrum disorder.
Signs and Symptoms
People with ASD often have problems with social, emotional, and communication skills. They might repeat certain behaviors and might not want change in their daily activities. Many people with ASD also have different ways of learning, paying attention, or reacting to things. Signs of ASD begin during early childhood and typically last throughout a person’s life.Children or adults with ASD might:
- not point at objects to show interest (for example, not point at an airplane flying over)
- not look at objects when another person points at them
- have trouble relating to others or not have an interest in other people at all
- avoid eye contact and want to be alone
- have trouble understanding other people’s feelings or talking about their own feelings
- prefer not to be held or cuddled, or might cuddle only when they want to
- appear to be unaware when people talk to them, but respond to other sounds
- be very interested in people, but not know how to talk, play, or relate to them
- repeat or echo words or phrases said to them, or repeat words or phrases in place of normal language
- have trouble expressing their needs using typical words or motions
- not play “pretend” games (for example, not pretend to “feed” a doll)
- repeat actions over and over again
- have trouble adapting when a routine changes
- have unusual reactions to the way things smell, taste, look, feel, or sound
- lose skills they once had (for example, stop saying words they were using)
Diagnosis
Diagnosing ASD can be difficult since there is no medical test, like a blood test, to diagnose the disorders. Doctors look at the child’s behavior and development to make a diagnosis.
ASD can sometimes be detected at 18 months or younger. By age 2, a diagnosis by an experienced professional can be considered very reliable.1 However, many children do not receive a final diagnosis until much older. This delay means that children with ASD might not get the early help they need.
Treatment
There is currently no cure for ASD. However, research shows that early intervention treatment services can improve a child’s development.2, 3 Early intervention services help children from birth to 3 years old (36 months) learn important skills. Services can include therapy to help the child talk, walk, and interact with others. Therefore, it is important to talk to your child’s doctor as soon as possible if you think your child has ASD or other developmental problem.
Even if your child has not been diagnosed with an ASD, he or she may be eligible for early intervention treatment services. The Individuals with Disabilities Education Act (IDEA) says that children under the age of 3 years (36 months) who are at risk of having developmental delays may be eligible for services. These services are provided through an early intervention system in your state. Through this system, you can ask for an evaluation.
In addition, treatment for particular symptoms, such as speech therapy for language delays, often does not need to wait for a formal ASD diagnosis.
Causes and Risk Factors
We do not know all of the causes of ASD. However, we have learned that there are likely many causes for multiple types of ASD. There may be many different factors that make a child more likely to have an ASD, including environmental, biologic and genetic factors.
- Most scientists agree that genes are one of the risk factors that can make a person more likely to develop ASD.4
- Children who have a sibling with ASD are at a higher risk of also having ASD. 5-10
- ASD tends to occur more often in people who have certain genetic or chromosomal conditions, such as fragile X syndrome or tuberous sclerosis.11-14
- When taken during pregnancy, the prescription drugs valproic acid and thalidomide have been linked with a higher risk of ASD.15-16
- There is some evidence that the critical period for developing ASD occurs before, during, and immediately after birth. 17
- Children born to older parents are at greater risk for having ASD.18
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