The Autism Dilemma for Women Diagnosis
October 26, 2018
By: Organization for Autism Research
Categories: Community News, Families, Research
Women constantly deal with inherent gender biases in everyday conversations, jobs, and social life; new research shows that this gender bias is seen in diagnosing women with autism. The Guardian reported on a new study found the ratio of women to men with autism to be 3:1; these results were based on active screening rather than clinical and school records. Most women, however, are not diagnosed – and if they are diagnosed, it occurs late in adulthood. The psychological and treatment benefits of a professional diagnosis often outweigh the disadvantages; many women with autism wish they were diagnosed earlier. Early autism researched focused on men, without the realization that women present symptoms of autism differently; this notion leads to women being under-diagnosed.
The stigma that women don’t have autism is not only believed by the general public, but also by diagnosticians. For example, two women reported that specialists told them that girls don’t have autism and that a girl was too complex to assess for autism. Some specialists believe that females with high levels of testosterone are more likely to be diagnosed with autism, following a popular “extreme male brain” theory. Popular culture has also reinforced the stigma that only men can have autism. Media portrayals of autism tend to show only male characters, which can lead the general public to believe that it is only seen in men. Previous studies about autism carry the assumption that autism only affects men, because researchers only recruited men to participate in their research. Fortunately, researchers like Professor Francesca Happé are studying gender differences in autism; results from these studies suggest that autism manifests itself differently in men and women.
Women with autism are generally able to mask, or hide, their symptoms better than their male counterparts. For instance, a woman can maintain better eye contact, be more involved in conversations, and have better self-care because they observe and learn to pick up habits that will hide their symptoms. Scientists elaborate on masking, which they also call camouflaging, by stating that women camouflage 3-4 times more than men do, resulting in the lack of diagnosis of women. This phenomena calls for constant and elaborate effort to mask one’s symptoms; this effort often results in physical exhaustion and extreme anxiety. Scientists write that men also camouflage, but not as frequently as women; this phenomena is as a natural adaptation strategy to navigate reality.
Many women with autism have spoken about the difficulties of being diagnosed. For instance, Joanne Dacombe, who spoke to Newshub, said she was finally diagnosed at age 48 due to the effects of an “autistic burnout,” which she defines as the long-term psychological exhaustion of trying to act normal. This “autistic burnout,” Dacombe states, can cause depression and other mental health issues; the effects of this burnout illustrate why individuals need to get diagnosed, which help put a name to her experiences.
Like Joanne Dacombe, Hannah Belcher was diagnosed as an adult. She told The Guardian that looking back, she sees how her autism affected her, but that she didn’t realize that she had autism growing up. Belcher, who is now an autism researcher at a prominent university, said that she stopped attending school when she was 14 because she found it too difficult to cope with the environment and people. After being told by an art therapist that she might have autism, Belcher investigated this topic more and eventually was diagnosed by a professional. Belcher believes that if she was diagnosed as a kid, like many men with autism are, she would have more support – especially around her anxiety – and would have suffered from less mental health problems. She also states that she masked her traits a lot, and knowing her diagnosis would have allowed Belcher to be herself.
Research scientists have determined that autism manifests differently in women than in men. While both men and women have special interests, women’s interests are more mainstream compared to men. Girls with autism will mimic others’ mannerisms, making it less likely to detect autism in girls. Symptoms of autism also differ because boys with autism tend to misbehave and are more overt with their actions, while girls with autism appear more anxious or depressed.
Comparing the rates of autism of men and women is shocking: only 8% of girls with autism are diagnosed before age 6, while 25% of boys with autism are diagnosed before this age. While 50% of boys with autism are diagnosed before age 11, only 20% of females with autism are diagnosed prior to this age. These statistics illuminate the staggering differences of diagnosis for men and women; one reason for the lack of women being diagnosed with autism is because of the expenses. In the public sector, many doctors give incorrect diagnoses of another disorder, or provide over simplistic assessments of the patient’s social skills. Women have to go to the private sector to receive a diagnosis, which is more expensive than the public sector; because of this added expense, most women evade diagnosis to save money. This notion is especially common when women are told that women don’t have autism, so it is pointless to continue pursuing a formal diagnosis. In addition, women with autism are so adept with social cues, because they pick up on traits from their peers, which they often fly under the radar of diagnosis. The test to assess for autism specifically focuses on traits of autism seen in men, not women; this notion is especially true in regards to sociability because women with autism are generally better at socializing than their male counterparts.
Diagnosing autism is critical because it allows the individual to access resources to help them cope with this diagnosis; it shows that individual that even though they are different, it is okay because there is a giant network of people with autism. These advantages to a formal diagnosis, in combination with women realizing that they aren’t being accurately diagnosed, has led to an increase of women being diagnosed with autism in recent years. After being formally diagnosed, women with autism report that they stop masking traits of autism and fully accept their diagnosis – both of which increase self-confidence and self-efficacy. Women who are undiagnosed and women who have autism often feel isolated because many people don’t believe that women can have autism – these women are either turned away from a diagnosis or told that their diagnosis is irrelevant. While the misconception that women can’t have autism is decreasing and more women are getting diagnosed sooner, the problem isn’t resolved. We must continue to educate medical professionals and individuals that women can have autism, and that we must find a better system to assess autism that looks at how autism manifests itself in women.