Elena has had to wait 37 years to find out that she is autistic. Only seven months ago she found answers: “It was a relief because now I know why I am the way I am, why I process as a process and why I feel the way I feel.” The same relief felt María Lozano. “Now I understand many things about my life,” says the 25-year-old. The experience of both can be extended to that of many other women, whose diagnosis takes years to arrive. Experts find that there is a gender bias in autism screening that leaves many women and girls under the radar. They remain trapped in a limbo for years, between the awareness that there is something that sets them apart from the rest and not knowing what it is. Ignoring that they live with the disorder.
The neuropsychologist Patricia Peña explains that autism is a neurobiological condition, although it is still classified as a disorder. “The latest manuals already indicate that it is not a disorder, but a condition with which you are born, develop and die,” says the expert in female autism. It is called autism spectrum disorder (ASD) because it comprises different types of symptoms, and it is multidimensional. The child and adolescent clinical psychologist and coordinator of the Spanish Society of Clinical Psychology, Gloria Bellido, agrees with Peña and adds that there are mainly three major common characteristics in people who fall within the spectrum: “Difficulties with language, with verbal communication ; difficulties at the social level, of not knowing how to interpret social situations and norms, and obsessions, restricted or repetitive interests, which is the interest in specific topics”.
The characteristics of autism are the same for boys and girls, but the external manifestation is different. “Girls do not have such striking behavioral manifestations, but it is the other way around. They tend more towards mutism”, assures Carmen Molina, president of the Association of Autistic Women (Cepama). Peña agrees: “According to the latest studies, girls have a greater ability to imitate, they tend to have greater communication skills, and they tend to mask more. Its characteristics are closer to the normative group”. That is, they learn, as a defense mechanism, to disguise their behaviors to fit in socially. Their difficulties go unnoticed, which leads to late diagnoses.
Elena, a fictitious name to preserve her privacy, learned of her autism after her two young children were diagnosed. “My daughter did not adapt to daycare. In the yard she did not play with the other children, she watched them and played alone with sticks, ”she recalls. Her psychologist then suggested that she do the tests for a diagnosis. Like Elena, many women have reported on social networks that they found out they had autism after their children were detected. “I clearly see my reflection in my daughter, in my childhood, from when I was little,” admits the mother. Lozano also became suspicious thanks to the help of a loved one, in this case her friend. “He asked me if she had hypersensitivity. I answered yes, and we began to inform each other. I was freaking out. I thought, ‘God, this is my life!’ She went to the AUTEA association, where after clinical interviews, homework tests and several therapy sessions a week for two months, she was diagnosed.
Marina Carreras says that it is difficult for her to look into the eyes, catch jokes, read the environment, and that is why sometimes people think she is selfish. “Since she was little, these things were attributed to the fact that she was too shy, rude, because there is a belief that women are quieter. And when it looks like this, it is more difficult to diagnose it, ”explains the 21-year-old. “The manifestation of autism in girls is more introspective. They are quiet, docile girls, who do not relate to each other and have gone unnoticed, things that a few years ago were favored due to the gender bias and machismo in our society”, adds Carmen Molina.
In addition to the fact that women tend to camouflage the characteristics of ASD, there is another factor that makes its detection difficult. The diagnostic tests, according to the experts, are designed based on the male experience, and are more sensitive to discovering the disorder in them than in them. “Historically, the cases considered most affected were boys, and the prevalence was around one girl for every four boys,” explains Peña. The evaluation tests are adapted to a majority male population and, therefore, are based more on their characteristics: imitation difficulties, restricted and repetitive interests, communication difficulties, among others. Since women present these characteristics in a more subtle way, they do not exceed the diagnostic cut-off points. “This is what is called gender bias in the tests, because they are more sensitive to the male population than to the female population,” continues the neuropsychologist. Both factors—that women disguise the disorder and that the tests do not capture that information—constitute a significant gender bias in the detection of autism.
This bias has several consequences. The first, which is not detected so much during childhood and adolescence and, often, what is diagnosed is confused with other pathologies, explains Bellido. “We find that sometimes they are diagnosed with borderline personality disorder, eating behavior or bipolar disorder,” he adds. A University College London research reveals that children with autism are at increased risk of eating disorders (EDs).
Elena developed anorexia during her teenage years. When she was 15 years old, she was admitted to a psychiatric hospital for eating disorders. She stayed there for eight years and was finally discharged at 24. One of the things that influenced the development of the disorder is hypersensitivity, characteristic of autistic people. Elena now understands why it was difficult for her to eat certain foods: because of the textures, smells, flavors. “At a sensory level, eating is also a serious problem. And if you combine adolescence with depression, low self-esteem and little desire to live because you do not understand the world around you, with the fact that food is torture for you, an eating disorder can appear ”.
The second consequence of bias and lack of diagnosis is not being able to receive specific treatment. That the symptoms worsen with the passage of time, and get burned. “The person runs out of battery, he is simply surviving, overcoming the small obstacles of day to day,” explains Peña. This lethargy results in sick leave, with little understanding on the part of the family, partner and friends, “because people cannot see a physical cause that justifies so much sustained time of collapse.”
For Carmen Molina, society penalizes people with autism and in the case of women even more. In employment, for example, many leave it because of your mental health or because their contract is not renewed. “The answer is as absurd as that we don’t go to Christmas dinners, we don’t go for coffee with our colleagues. The very management of communication in autism makes all these social scenarios very strange and incomprehensible”, emphasizes Molina.
Misdiagnosis is often accompanied by medication that does not solve the problem. “You go to the doctor, they give you antidepressants, they don’t work for you. They combine it with anxiolytics, they don’t work for you either. They give you antipsychotics… and you go on a medical pilgrimage”, continues the psychologist Peña. This, however, is not something that happens only with autism. Bellido points out that this happens a lot with all mental health disorders. “Even in organic pathologies. Things of physical health are confused, attributing them to psychological things of women. We know that heart attacks are diagnosed less in women because they are confused with anxiety attacks, ”she says.
“I believe that if you are a woman and you are also autistic, you are more invisible. It took me 37 years to discover why I am the way I am”, Elena ditch. In addition to the social stigmas: “You have 20 other labels like clueless, hyperactive, manic and it turns out that you just process information in a different way than normal. There is still a big gap in that regard.” Lozano, on the other hand, highlights that behind this fight there is a hopeful part. “It should be noted that in the end you can lead a normal life, I have been able to get a degree, but with many hours of work, with a lot of effort, with hours of crying. You are capable of it. Each autistic person has their needs, you can lead a normal life, you just need a very important support group to push you”.
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