Whether in the Oscar-winning drama Rain Man or Emmy-winning sitcom The Big Bang Theory, chances are you’ve seen autism depicted in a movie or TV show. Chances are, too, that you know someone — or someone’s family member — who falls on the autism spectrum.
And chances are that if I asked you to name the first person with autism who pops into your head, fictional or real, that person would be a male.
That’s because autism, or Autism Spectrum Disorder (ASD), is significantly more common in males than in females – at least, according to traditional diagnosis criteria. Historically, the sex ratio in autism has been cited as four boys to every one girl (4:1), an estimate that has remained fairly constant since the condition was first described in 1943.
Did you know that autism was first identified in 1943 by Leo Kanner, MD, a psychiatrist at Johns Hopkins University after he encountered a five-year-old boy whom he described as being “withdrawn and living within himself.”? https://t.co/DxZ2hpjju4 #autism pic.twitter.com/1I925r9LZ9
— Disconnected Kids (@KidDisconnected) May 23, 2018
For just as long, researchers have tried to explain autism’s male-skewed prevalence by looking to genetic and hormonal factors that differ between the sexes – biological features that might have a protective effect in women. But more recently, a comprehensive analysis of worldwide prevalence data has revealed a lower sex ratio than previously thought.
Per the research findings, the male-to-female ratio in autism fell closer to 3-to-1 when study investigators actively evaluated participants for ASD, instead of simply relying on parent interviews or on school and medical records. In describing the new prevalence estimate based on this more rigorous analysis, the authors concluded that “girls with autism are at greater risk than boys at having their ASD overlooked, misdiagnosed, or identified late.”
Why the heavy diagnostic bias in autism in favor of biological males? According to the new evidence, it’s not that girls and women are less likely to have autism – it’s just that autism in females presents differently than it does in males. And since the screening criteria for autism was developed based on studies that severely underrepresented female participants – as much scientific research has done in the past – many girls and women on the spectrum are still falling through the cracks.
“Because boys were the exclusive focus of early autism studies, our knowledge and the conceptualization and criteria of autism were based only on male presentations of the condition,” explains Julie Landry, Psy.D., A.B.P.P., a clinical psychologist who specializes in adult autism evaluation. “As a result, we ended up with a diagnostic self-fulfilling prophecy that has perpetuated autism as a male only condition.”
If female-presenting autism looks nothing like it does in savant-esque Raymond Babbitt or quirky Sheldon Cooper, what does it look like? How can you recognize it in yourself or a female loved one? Here, Landry helps us break down the ABCs of autism in women, including how it’s different, why it’s so frequently misdiagnosed, and where women with autism can find support.
First, What Is Autism?
Autism is a lifelong neurodevelopmental disorder that occurs in about 1 in 44 U.S. births; it affects people of all genders and racial, ethnic, and socioeconomic groups. More than 5.4 million adults in the United States – that is, 2.2 percent of the population – are currently living with autism.
“The main characteristics of autism include persistent deficits in social communication or interaction and restricted, repetitive patterns of behavior,” Landry says. While these characteristics can manifest in a wide spectrum of symptoms depending on the person (hence autism’s classification as a “spectrum” disorder), the most common signs and symptoms of autism in adults include the following:
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Difficulty interpreting what others are thinking or feeling
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Trouble interpreting facial expressions, body language, or social cues
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Difficulty regulating emotion
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Trouble keeping up a conversation
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Inflection that does not reflect feelings
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Difficulty maintaining the natural give-and-take of a conversation
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Tendency to engage in repetitive or routine behaviors
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Restricted range of activities
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Strict consistency to daily routines
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Exhibiting strong, special interests
Adults with autism typically prefer solitude over social activities, like to stick to a rigid schedule or routine, and are often perceived by their peers as eccentric.
How Does It Differ In Women?
While both males and females with autism may exhibit the symptoms above, autism tends to manifest differently in women. For instance, “Men are more likely to externalize their struggles through repetitive behaviors, impulsivity, aggression, and conduct problems,” Landry points out. “Signs of autism in women, on the other hand, tend to be less visible. Women are more likely to internalize their difficulties, resulting in frustration, burnout, anxiety, and depression, which makes autism harder to spot.”
In many cases, autism in women may present as an eating disorder, Landry explains. “Research shows that approximately 23 percent of females with eating disorders meet criteria for autism,” she says. “This is likely related to a fixation with nutrition, or restricted and repetitive eating profiles related to sensory issues or need for repetition. Autism is overlooked in these cases because the eating disorder is the most evident and more critical condition.”
Furthermore, research suggests that women and girls with autism show greater social motivation and ability to maintain traditional friendships when compared to men. “Because social difficulties are a significant criterion in autism diagnosis, these women tend to fly under the radar,” Landry says. “They appear neurotypical due to ‘masking’. Masking occurs when autistic individuals present or perform social behaviors that are considered neurotypical as a way to fit in, avoid stigma, or feel safe.”
Masking, also called camouflaging, can take a significant toll on women’s psychological well being. “Masking takes significant cognitive and emotional effort and impacts negatively on mental health – particularly if camouflaging is engaged across multiple contexts, or if an individual is engaged in switching between camouflaging in some contexts but not in others,” Landry says. “It’s exhausting trying to exist and navigate environments that do not accommodate neurodiversity, and it often feels unfair and isolating.”
Because of the psychological strain of masking, women and girls with autism are often diagnosed with other psychiatric conditions, including Attention Deficit/Hyperactivity Disorder (ADHD), Obsessive Compulsive Disorder (OCD), and Borderline Personality Disorder (BPD). “In some cases, these diagnoses are accurate, but in others this likely reflects healthcare professionals’ misunderstanding of autism,” Landry says.
How Is Autism In Women Diagnosed And Treated?
While several self-screening tools for ADHD are available online at no cost, they cannot confirm an autism diagnosis – but they can help a person decide whether to follow up with a professional evaluation. The only way to obtain an accurate diagnosis is with a formal evaluation conducted by a specialist (usually a psychologist or psychiatrist).
If you suspect that you are on the autism spectrum, visit Neuroclastic.com for a comprehensive directory of specialists diagnosing autism (ASD) in adults. The diagnostician will observe your behaviors, including how you interact and communicate, and administer a series of structured screening tests that are more detailed than the common self-screening tools. When seeking a specialist to evaluate you for ASD, it can be helpful to ask whether the professional has experience in diagnosing autism in women specifically.
Adults diagnosed with autism are often high-functioning already, so treatment usually involves therapy, support groups, and vocational resources over medical interventions.
What Support Is Available For Women With Autism?
“Support groups and online forums are especially helpful in terms of ‘finding your tribe,’” Landry recommends. “There are also many ways to connect and build relationships with other neurodiverse people through organizations and social media.
“Therapy can also be beneficial by helping women get the specific support they need based on the individual impacts of the disorder on their life, such as anxiety, social isolation, relationship problems, or job difficulties,” she says.
If you or a loved one is living with autism as a woman, visit the Autistic Women & Nonbinary Network (https://awnnetwork.org), a nonprofit organization that provides community, support, and resources to autistic women, girls, and people of marginalized genders.
Do you know anyone living with autism as a woman? Are you personally living with autism? What is the experience like? Tell us in the comments below.
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