Misdiagnosis Is All Too Common for Women with Autism
Suffering through a misdiagnosis.
Posted May 02, 2019
After twenty-eight years of being “dragged through the system,” Emily Swiatek was finally diagnosed with Asperger’s, a branch of Autism Spectrum Disorder (ASD). For Emily, receiving the diagnosis felt like “coming home to a version of yourself that you have been denied.”
Research shows that Autism Spectrum Disorder is more prevalent in males than females by a ratio of three to one. But there is increasing evidence that this gender difference may be slimmer than we think, and that autism symptoms in women and girls are frequently overlooked and misdiagnosed.
In an interview with the Trauma and Mental Health Report, Emily explains her frustration with being shuffled from one specialist to another for years, without receiving an adequate explanation for her symptoms:
“I’ve been through quite a long journey, being given about 10 mental health diagnoses along the way. It was getting to that point where it felt like I was caught in the middle of a guessing game. I kept coming up against the same response of, ‘We don’t really understand—let’s keep throwing labels and see what sticks.'”
A survey conducted in the United Kingdom by The National Autistic Society found that compared to males, women and girls are more likely to be misdiagnosed, with 42 percent of females diagnosed with a mental disorder other than autism when being assessed, as opposed to 30 percent of males.
Emily’s experience is not unique. Hannah Belcher, who was diagnosed with Asperger’s Syndrome at 23, shares her experience: “Throughout my life, I’ve been diagnosed with Anxiety, Depression, Bipolar, traits of Borderline Personality Disorder, and ADHD. Some correct and comorbid, some incorrect and misdiagnosed.”
There is no clear explanation as to why women with autism are often misdiagnosed. Child psychiatrist Meng-Chuan Lai, a clinician-scientist at the Centre for Addiction and Mental Health, says that while there is a range of different reasons why women receive a diagnosis of ASD later in life, one possibility is that autism characteristics aren’t so evident in females: “Girls and women may be more able to master ‘camouflaging,' so ‘typical’ autistic characteristics could be masked when they learn social skills.”
Lai describes this as the ability to learn neurotypical social behaviors such as eye contact, gestures, holding conversations, and the utilization of social scripts. These neurotypical behaviors represent those who are not on the autism spectrum, in contrast to the neurodiverse behaviors which refer to differently wired brains and cognitive styles attributed to those on the autism spectrum.
In the foreword for Safety Skills for Asperger Women by Liane Holliday Willey, Tony Atwood describes this “camouflaging” phenomenon, reporting that young girls mask the symptoms of autism by socializing and interacting with their peers, causing a delay in diagnosis.
Both Hannah and Emily attribute mimicking socialization patterns as an important factor. Emily explains:
“I’m not a part of that traditional profile of autism… It never even occurred to anyone who was assessing me that somebody who looks like me, somebody who presents like me, could be autistic because I’m smiley, I’m eloquent, I can probably make eye contact if I have to, even though I don’t like it. I’m a very strong mimicker and that masking and mimicking profile is true for me. I think I very much fit that ‘well behaved little girl’ image—very intelligent, liked reading, very quiet, maybe they’d say I was shy.”
Lai notes that another possible reason for the misdiagnosis is that women and girls tend to have restricted and repetitive behaviors that are less likely to be recognized:
“The issue is that some of these narrow interests of autism in males, if you only look at the content, are more traditionally male-typical such as trains, dinosaurs, trucks, and they are most easily recognized by clinicians because of our own stereotypes of autism. For girls, their restricted and repetitive behaviours might not be captured by standardized instruments as they are deemed as less noticeable.”
Recent research has touched on the idea of bias in the way autism is diagnosed. One study showed that girls are more likely to be diagnosed if they had additional intellectual disabilities or behavioral issues. However, without these, many women are receiving incorrect diagnoses or none at all. Hannah agrees: “Sometimes you might feel like you don’t fit in anywhere, everything everyone thinks about autism is male-biased. However, as slow and painful as the journey is, there is always a light at the end of the tunnel. It takes us a little bit longer to get to it, but it is worth the journey."
In a study looking at sex differences between children with autism, researchers recommend new strategies for improving autism recognition in females. In fact, Australia is the first country to form new national guidelines to help increase early diagnosis of women with autism. Considerations of social camouflaging, anxiety, sensory overload, and depression are being included in these new guidelines.
If these guidelines are implemented, it will be possible to decrease the number of misdiagnoses in women and girls who have autism, leading to less frustration for these women and more time to learn how to manage their diagnosis. Emily says that since she received her diagnosis, her life has changed for the better: “It was instant relief the minute I got my diagnosis. It just made sense. It was right. It was instantaneous the difference it made. My general well-being just went up and up and up, and is still on an upward trajectory.”
-Lucia Chiara Limanni, Contributing Writer, The Trauma and Mental Health Report
-Copyright Robert T. Muller
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