What Are the Signs of Autism in Girls – Is Asperger’s in Girls Overlooked?
Girls with autism have long been misdiagnosed as their symptoms look quite different from those of their male peers on the spectrum. New research indicates that autism in girls is more common than previously thought as more is learned about the signs of autism in girls.
Are there fewer girls with autism or are they not being diagnosed?
When most people think of autism spectrum disorder (ASD) or high functioning autism, often called Asperger’s syndrome, boys and men often come to mind. An obsessive desire to memorize facts and collect information on a subject they are especially interested in or the inability to have typical social interactions and maintain friendships, or even exceptional intelligence (often confused with savant syndrome) are often considered hallmarks of ASD and Asperger’s syndrome.
Autism has previously been estimated to affect 1 in 68 children in the United States and has been thought to be 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)
A study published in the Journal of Autism and Developmental Disorders describes two trains of thought as to why girls and boys with autism present differently. 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 predispose 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 often portray milder symptoms than their male peers and “referral biases given that they are still more socially adept than boys with and without ASD based on their relative strengths in social skills are caretaking.” (Solomon, Miller, Taylor, Hinshaw, & Carter, 2011)
Signs of autism in girls and how they differ from boys with ASD
Asperger’s in girls presents differently than in their male counterparts. While boys with an 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 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)
This may make the condition harder to recognize and may only become noticeable around puberty when social interactions become more complex, and the pressure to conform is overwhelming.
Young girls with autism might perform at an average to 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)
Robyn Steward compiled the following list for the BBC of typical difficulties that may be faced by someone with Asperger’s syndrome:
- Understanding non-verbal communication, such as body language or tone
- Interpreting the feelings, thoughts or motives of others
- Relating to non-literal uses of language, such as idioms, jokes or irony
- Following social conventions such as respecting another person’s physical space
- Depending on familiar routines and feeling anxious if these are not adhered to
- Experiencing sensory difficulties, for example being overpowered by visual, auditory or tactile stimuli
- Limits to body awareness, for example, walking around obstacles or carrying out fine motor tasks. (Steward, 2014)
Are women and girls with autism being misdiagnosed?
Boys and girls develop differently particularly throughout puberty. Girls are traditionally thought to mature faster, develop social skills and emotional intelligence sooner, and have a greater awareness of the world around them. These differences are often noticeable between neurotypical boys and girls as well as boys with autism and their neurotypical peers of both genders. However, girls with autism frequently present to be less socially adept than their neurotypical female 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 girl or boys with autism.” (Szalavitz, 2016)
This gray area has left many women and girls with autism without a diagnosis that could, in turn, help them gain access to therapies that could help them.
A 2014 study by psychologist Thomas Frazier of the Cleveland Clinic found that girl who had been diagnosed with autism had lower IQs than their neurotypical peers as well as extreme behavior problems. The girls were also less likely to present with 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 may present. Kevin Pelphrey, a researcher at Yale University’s Child Study Center, and father of two with autism, told Szalavitz that current diagnostic tests are derived from studies (almost exclusively) of boys and that he believes this may be why so many girl and women are under diagnosed/misdiagnosed. (Szalavitz, 2016)
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Common co-occurring disorders associated with Asperger’s Syndrome in girls
Women and girls with Asperger’s syndrome often find themselves misdiagnosed or at a higher risk for co-occurring conditions which may be derived as coping skills or entirely 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, 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 and ASD fits in with a co-occurring disorder is crucial to providing the girl or woman with the best therapies and resources available.
Anxiety-based disorders such as generalized anxiety, social anxiety, and obsessive-compulsive disorder have been reported in greater instances in girls with Asperger’s syndrome than their otherwise 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 social anxiety disorder, 22% diagnosed with generalized anxiety disorder, 13% diagnosed with panic disorder, 15% diagnosed with agoraphobia, and 7% diagnosed with obsessive-compulsive disorder. (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 an ASD. Treasure stressed that the majority of women with anorexia nervosa do not have autism, but that 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 extremely 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 and women on the spectrum, especially with current diagnostic models largely representing the male presentation of autism. Many girls with autism retain their diagnosis of ADHD, but in conjunction with an ASD diagnosis have 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 make sense of the world through the unique lens of autism.
How can a diagnosis help a girl with autism?
Just as with their male counterparts, women and girls with autism benefit greatly from being diagnosed at a young age. An early diagnosis can mean earlier access to therapies and resources and more time for the girl and her family to learn how to cope with an ASD diagnosis. Early intervention is key, but a diagnosis later in life is better than no diagnosis at all. 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 girls and woman find relief from receiving their diagnosis. After a diagnosis is given, you or your child can be placed with therapists, occupational therapists, psychiatrists, or other professionals who can answer questions and help you or your child to live a fuller life.
Social skills classes are available to help women and girls with autism learn how to cope with challenging social situations and form interpersonal relationships. Therapists can also help girls manage co-occurring conditions such as anxiety, depression, bipolar disorder, obsessive-compulsive disorder (OCD), or anorexia form positive coping skills and make sense of these other disorders as they pertain to a girl or woman on the autism spectrum.
What is the cost of not knowing?
Seeking testing for ASD, especially for a girl, can be a daunting undertaking. As a parent, you might feel conflicted as to whether a diagnosis is necessary for your daughter. 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 that a trained specialist can help her develop are invaluable. Girls with autism who struggle with setting social boundaries or find challenges in maintaining meaningful relationships are at a higher risk for sexual exploitation and staying in abusive relationships. A study by Baron-Cohen found that “66% 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, speak her truth, and manage her mental health.
What kinds of therapies can benefit girls with autism?
Girls with autism 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. ABA helps to manage challenging behaviors through positive reinforcement, as well as teach social and motor skills. Adolescent girls may benefit greatly from psychotherapy or “talk therapy” with a psychologist who is trained to help girls with autism.
During psychotherapy, the client and therapist will work together to process challenging situations and create plans with manageable steps to address unhealthy thought processes of behaviors. A psychotherapy session is a place where clients are encouraged to ask questions, vent, and seek guidance. Occupational therapy is another option for children who need help establishing routines and carrying out daily tasks. An occupational therapist can help your daughter learn skills that will help her at home, school, or in the workplace.
Girls and women with co-occurring disorders such as obsessive-compulsive disorder, anorexia nervosa, or who are trauma survivors may need additional specialists on their team. As more women and girls are receiving ASD diagnosis, specialists are becoming more aware of the unique way women and girls on the autism spectrum present and are developing new ways to help them thrive. If you are unsure where to begin, your daughter’s pediatrician or primary care doctor will likely be able to connect you with resources in your area.
Bargiela, S., Steward, R., & Mandy, W. (2016, July 25). The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype. Retrieved from https://link.springer.com/article/10.1007/s10803-016-2872-8
(Bargiela, Steward, & Mandy, 2016)
Mazzone, L., Ruta, L., & Reale, L. (2012, June 25). Psychiatric comorbidities in Asperger syndrome and high functioning autism: Diagnostic challenges. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3416662/
(Mazzone, Ruta, & Reale, 2012)
Solomon, M., Miller, M., Taylor, S. L., Hinshaw, S. P., & Carter, C. S. (2011, March 26). Autism Symptoms and Internalizing Psychopathology in Girls and Boys with Autism Spectrum Disorders. Retrieved from https://link.springer.com/article/10.1007/s10803-011-1215-z
(Solomon, Miller, Taylor, Hinshaw, & Carter, 2011)
Steward, R. (2014, August 16). Lesser-known things about Asperger’s syndrome. Retrieved from https://www.bbc.com/news/blogs-ouch-28746359
Szalavitz, M. (2016, March 01). Autism–It’s Different in Girls. Retrieved from https://www.scientificamerican.com/article/autism-it-s-different-in-girls/
Katherine G. Hobbs is a freelance journalist and university student studying English, with an emphasis on journalism, and psychology. She is interested in the impact of having a special needs child on the family dynamic. Katherine is dedicated to bringing awareness of resources to families and providing help to those who love their autistic children. You can find her online at katherineghobbs.com.