Girls with autism are often misdiagnosed, misunderstood, and lack the essential support they need according to recent studies.
Research by Brown University indicates that autism and Asperger’s syndrome are more common than previously thought and girls are more likely to be diagnosed 1.5 years later than boys.
One of the reasons for this is the symptoms of autism in women and girls can exhibit themselves differently from those of their male peers with Asperger’s syndrome and other forms of autism spectrum disorders.
Statistics about autism in women and girls
What are the rates of autism in girls?
The latest information from the Centers for Disease Control and Prevention (CDC) suggests autism spectrum disorder (ASD) affects 1 in 54 children in the United States across all ethnic groups and is four times as prevalent in boys than in girls.
Girls with autism were considered to be more seriously affected and often also diagnosed with intellectual disabilities. Research now suggests that both these ideas are wrong. (Szalavitz, 2016)
Before we go into depth, about the difference between girls and boys, it is important to note that autism is a spectrum containing different types of autism from high functioning to more severe or low functioning types which are easier to diagnose.
For the purposes of this article, we will discuss more high functioning (HFA) or Asperger’s as it was previously classified under DSM IV.
Depending on the age of the girl, some of the autism symptoms in children at certain developmental milestones can become apparent regardless of whether they are male or female. For example when a child has sensory processing issues, problems with motor skills, or hyperlexia it can be much easier to come to the realization that your daughter is autistic.
However, not everyone with autism has those kinds of symptoms. Women typically develop stronger coping mechanisms for fitting in, particularly when they have a high IQ.
A study published in the Journal of Autism and Developmental Disorders describes two trains of thought about autism in each gender. The first theory is that “being female confers protection against autism traits because of sex differences in neuroendocrine function,” due to higher levels of oxytocin, which “encourage nurturance and affiliation and provide protection in girls against the development of autistic traits.” (Solomon, Miller, Taylor, Hinshaw, & Carter, 2011)
The second theory by Simon Baron-Cohen is that “high levels of fetal testosterone may cause boys to have ‘extreme male brains,’ characterized by phenotypes involving elevated ‘systematizing’ (focus on inanimate systems and details) versus ‘empathizing’ (focus on interpersonal orientation). A diagnosis may be missed because girls typically show milder symptoms than their male peers. Girls are said to have “referral biases because they have better social skills than boys with and without ASD.” (Solomon, Miller, Taylor, Hinshaw, & Carter, 2011).
What are the signs of autism in girls?
One of the more classic symptoms of the autism spectrum can be seen when looking at difficulties involving social interactions. This is much easier to spot in men as girls and women tend to adapt to social situations more naturally than men.
It is inherently easier for autistic girls to mimic the behaviors of others when it comes to certain interactions at least initially.
This can change in the teenage years. During puberty when social interactions become more complex and the requirement to start understanding social cues becomes more important, the social difficulties of girls with Asperger’s syndrome become more obvious.
For example, young girls with Asperger’s might perform at an average to an excellent level at school, even socializing at what appears to be an age-appropriate level. “Some girls with Asperger’s will manage to keep their difficulties under wraps at school, but might have ‘meltdowns’ at home, where they feel safe to relax and release the feelings that they have been squashing down all day.” (Steward, 2014)
Subtle clues such as difficulty maintaining eye contact during social interactions or escaping difficult events through mental processing or daydreaming can provide clues that girls may be autistic.
Special interests and obsessions
Individuals on the autism spectrum often have a tendency to develop special interests and obsessions. The classic stereotypes that are used in society are special interests and obsessions with facts. It can demonstrate itself in memorizing train timetables, plane models, Pokemon categories. It can lead to children and even adults building collections of these special interests such as stamp collecting. These are typically associated with “boy hobbies” which can at times be considered geeky but we don’t always consider obsessions that may be more relevant to girls such interests in animals, art, literature, or music.
Asperger’s syndrome in boys and girls present very differently. While boys with ASD may collect information about topics that hold special meaning to them, girls with Asperger’s tend to align interests with those of their neurotypical peers, but in a “more focused way.” A teenage autistic girl may collect makeup and study its application as done by a favorite makeup artist while a younger girl may learn the history of Barbie dolls or study her American Girl books. (Steward, 2014)
Sensory processing issues
Sensory processing issues include difficulties processing intense lighting, sound, or touch. These are all characteristic symptoms of autism.
It is common for many people to be triggered by the sound of a person scratching his/her fingernails down a blackboard, but for someone with an ASD, there are often very similar sounds that will result in an increased need for self-regulation through stimming, meltdowns or in more extreme cases self-injurious behaviors.
Visual thinking relates to the concept that individuals with ASD think more in terms of pictures than natural language. It enables people to conceptualize patterns in their minds and solve complex problems.
People often think of boys with autism playing with Lego blocks or Minecraft and creating elaborate designs. In adult men, this often leads to the stereotypical autistic roles of the NASA scientist, engineer, or computer programmer. While it is true, those particular job roles are traditionally dominated by men, there are also many females with autism who are drawn to those professions.
These are not the only examples though.
One of the most famous women with autism, Temple Grandin, PhD, was nonverbal for the first three and a half years of her life. She developed social skills and went on to attain a doctoral degree in animal science where she began to pioneer revolutionary concepts due to her ability to think in pictures. In the video below, Temple discusses those traits and we can also consider them to be symptoms of autism.
We can also, see the same traits of visual thinking played out in areas such as the design of clothes, jewelry, or even the architecture of entire buildings for the smart, but socially awkward sections of society.
Are women and girls with autism being misdiagnosed?
Boys and girls develop differently particularly throughout puberty. Girls are said to mature faster and develop social skills and emotional intelligence sooner. They also have a greater awareness of the world around them. This often means that they are diagnosed much later than boys.
Girls with autism are less social than their neurotypical peers but do not seem to struggle as much as boys of the same age with autism. According to Maia Szalavitz, “females with autism may be closer to typically developing males in their social abilities than typical girls or boys with autism.” (Szalavitz, 2016) This gray area has left many women and girls with autism undiagnosed and unable to seek treatment.
A 2014 study by psychologist Thomas Frazier of the Cleveland Clinic found that girls who were diagnosed with autism had lower IQs than their neurotypical peers as well as extreme behavior problems. The girls were also less likely to show signs of restricted interests (usually a diagnostic factor for Asperger’s syndrome). Current diagnostic tests typically focus on “male” interests and are not inclusive of restrictive interests with which a young girl or woman might have.
Kevin Pelphrey, a researcher at Yale University’s Child Study Center, and father of two with autism told Szalavitz that current diagnostic tests are from studies (almost exclusively) of boys and that he believes this may be why so many girls and women are misdiagnosed. (Szalavitz, 2016)
Women and girls with Asperger’s syndrome often find themselves misdiagnosed. As a result, they are at a higher risk for co-occurring conditions which may be derived as coping skills or separate issues. According to a study published online on the US National Library of Medicine National Institute of Health website, women and girls with Asperger’s syndrome are likely to have higher instances of depression, bipolar disorder, anxiety, obsessive-compulsive disorder (OCD), and attention deficit hyperactivity disorder (ADHD).
While these issues may be co-occurring, they are often diagnosed as the only explanation for the symptoms presented by a girl with Asperger’s syndrome. Seeing the larger picture of how ASD fits with co-occurring disorders is useful to give autistic girls the treatment they need.
Anxiety-based disorders such as generalized anxiety, social anxiety, and OCD are reportedly seen in girls with Asperger’s syndrome than their neurotypical peers. According to the study mentioned above, 56% of people with Asperger’s syndrome meet the criteria of a diagnosis of anxiety with 22% diagnosed with anxiety disorder, 22% diagnosed with generalized anxiety disorder, 13% diagnosed with panic disorder, 15% diagnosed with agoraphobia, and 7% diagnosed with OCD. (Mazzone, Ruta, & Reale, 2012)
Researchers are also finding that women and girls with autism have “striking similarities in the cognitive profiles” to women with anorexia nervosa, according to psychiatrist Janet Treasure of King’s College London. Treasure says that “both people with autism and those with anorexia tend to be rigid, detail-oriented and distressed by change[s].” A diagnosis of anorexia nervosa may explain away symptoms and therefore prevent girls from being diagnosed as having ASD.
Treasure stressed that the majority of women with anorexia nervosa do not have autism, but women with anorexia have higher levels of autistic traits than typical women. (Szalavitz, 2016) Some women with autism who receive a diagnosis of anorexia nervosa may be eating restricted diets due to sensory issues surrounding food texture and other preferences, while other’s eating disorders may be triggered by the more typical stressors and pressure associated with anorexia nervosa. An estimated 23% of women diagnosed with anorexia nervosa also have an ASD. (Szalavitz, 2016)
ADHD may be the most common diagnosis girls receive before, or in some cases instead of, Asperger’s syndrome. The overlap of symptoms can make it difficult to diagnose girls on the spectrum, especially with current diagnostic models focus on males. Many girls with autism keep their diagnosis of ADHD, but in conjunction with an ASD diagnosis.
This gives them a greater explanation for their experiences and access to more resources to help them. Acknowledging this fuller picture is crucial to helping not only girls with Asperger’s syndrome but their families.
How can a diagnosis help a girl with autism?
Just as with their male counterparts, women and girls with autism benefit from early intervention. An early diagnosis can mean earlier access to therapies and resources. It can also mean more time for the girl and her family to learn how to manage an ASD diagnosis. Early intervention is key, but a diagnosis later in life is better than no diagnosis at all.
According to Dr. Susan F. Epstein, a clinical neuropsychologist, girls with autism can often end up wondering what’s wrong with them and suffer from poor self-esteem, depression and can become vulnerable to bullying.
Young and adult women who are diagnosed with autism might have to play catch-up on social skills and coping mechanisms. But after an adjustment period, most women and girls find relief from receiving their diagnosis. After a diagnosis, you and/or your child can meet with therapists, occupational therapists, psychiatrists, or other professionals who can answer questions and help long-term.
Girls on the spectrum can take social skills classes. Here, autistic girls learn to cope with different challenging social situations and form interpersonal relationships. Therapists can also help girls manage co-occurring conditions with autism such as anxiety, depression, bipolar disorder, OCD, and anorexia.
What is the cost of girls not getting an official diagnosis?
Seeking testing for autism, especially for a girl, can be a daunting undertaking. As a parent, you might feel conflicted about whether a diagnosis is necessary for your daughter.
Your local doctor should be the starting point for an official autism diagnosis but if this is not possible for you, you can also take this free online Asperger’s test where you can get an indicative result in about 10 minutes.
It is important to keep in mind that people with autism can live fulfilling and beautiful lives. A diagnosis will open the door to further therapies and resources for you and your child. Even if your daughter is already well into adolescence, the skills she can develop through therapy are invaluable. Girls with autism who struggle with setting social boundaries or finding/maintaining meaningful relationships are at a higher risk for sexual exploitation and mental health issues. Autistic girls are also more likely to stay in abusive relationships.
A study by Baron-Cohen found that “Sixty-six percent of adults with the milder form of ASD (Asperger’s) reported suicidal thoughts, at a rate nearly 10 times higher than seen in the general population. The proportion was 71% among women, who made up the sample.” (Szalavitz, 2016). Girls with autism are also at a higher risk for affective (mood) disorders such as depression, anxiety, and bipolar disorder. (Solomon, Miller, Taylor, Hinshaw, & Carter, 2011).
Finding a specialist who understands autism in girls and women is crucial to helping your daughter learn how to set boundaries and manage mental health.
What kinds of therapies can benefit autism in girls?
Girls with autism spectrum disorder have a variety of options for therapies. Applied Behavioral Analysis (ABA) is particularly helpful for young girls (under the age of five), but older girls can benefit as well. A method called talk therapy is said to help autistic girls. During psychotherapy, the therapist will present problems to the child, and they both work together to come up with solutions.
A psychotherapy session is a place where clients are encouraged to ask questions, vent, and seek guidance. Occupational therapy (OT) is another option for children who need help establishing routines and carrying out daily tasks. An occupational therapist can help autistic girls learn skills that will help her at home, school, or in the workplace.
Females with co-occurring disorders such as OCD, anorexia, or who are trauma survivors may need more specialists on their team. As more women and girls are receiving an ASD diagnosis, specialists are becoming more aware of the unique way females on the autism spectrum present and are developing new ways to help them thrive. Recognizing signs of autism in girls can happen earlier when parents are aware. If you are unsure where to begin, your daughter’s pediatrician or primary care doctor can connect you with autism resources in your area.