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World Autism Day: Why is there not an adequate diagnosis of autism for girls and women?


 

"Girls and women with autism are often calm, shy and withdrawn," says Alice Row, a British author and businesswoman.


Often, she adds, "these little girls, and their problems, are not noticed by others."


Alice learned that she was autistic at a young age, but she is one of the relatively few women diagnosed with autism, at least compared to men.


Autism spectrum disorder is a lifelong disability that affects how we communicate with people and interact with the environment. The level of intelligence and intellectual performance of individuals on the autism spectrum varies greatly, and ranges from profound impairment to high degrees of intellectual superiority.


It is estimated, according to WHO data, that one child in every 160 children worldwide has autism, but there is a large variation in diagnosis between the sexes.

Official figures in the United Kingdom indicate that there are about 700,000 people with autism, a ratio of about 10 males to one female. While other studies around the world indicate a ratio of 16 males to one female.


But what if diagnostic mechanisms between the sexes are male-biased?


Carol Bovey, director of the Autism Center of the British National Autism Society, said there is growing awareness of the issue.


And new scientific research in the United Kingdom, specifically designed to monitor the characteristics of autism in women, indicates that the real ratio could be closer to three males versus one female.


And if that is true, hundreds of thousands of girls all over the world are living with a disability without even knowing it.

"It wasn't until I was 22 years old that I was diagnosed with autism," Alice says.


"I spent my whole life, until then, wondering why I am different, and I was terrified because I was different, and I was constantly trying to adapt so that I would not be different," she adds.


But the diagnosis changed Alice's life: "Now I have a name and a reason for being different. It's very frightening that a person is different without the slightest idea of ​​the reason behind it. I think he feels like he's totally alone."


Alice adds, "The peace of mind and self-acceptance that came after knowing the diagnosis made a big contribution to being able to change my lifestyle to fit my own needs."


As she says, "I can now explain to friends and colleagues that I have difficulties and that my thinking and behavior may be somewhat unusual."


"All of this ultimately led to a dramatic improvement in my mental health, and I was able to establish more meaningful and more enjoyable relationships with those around me," she adds.


As with Alice, many find the diagnosis helpful in understanding why they felt this way, and in finding acceptance and understanding in family and friends.


The diagnosis of autism is also important because many of its sufferers have secondary mental health problems such as anxiety, depression, and a tendency to self-harm.


And a small study in the United Kingdom found that 23 percent of women who were hospitalized because they had chronic anorexia had characteristics that match the characteristics of autism.


Why is autism not discovered when many girls and women?


The signs of autism in girls and women are not the same as those seen in boys and men. And most importantly, it may be easy to go unnoticed, especially in high-functioning autism.

One of the difficulties faced by researchers is that girls with autism behave in ways that are acceptable, if not ideal, to girls. In contrast to boys, they behave introverted, depend on others, display apathy, or be depressed.

They may become interested or even obsessed with certain things, just like boys with autism, but they are unlikely to become "nerds or geniuses" in the fields of technology or mathematics.

"It is sad, in Western culture, that such girls are exposed to bullying or perhaps ignoring them, instead of diagnosing them and treating them," says the mother of one of the girls with the autism spectrum.

"To a stranger, the girl with autism appears neutral, not difficult or disobedient, so no one really notices her," Alice says.


Alice, shy but assertive, went to the doctor, with a list of points explaining why she thought she had the autism spectrum, and then she was referred to a specialist for a diagnosis.


But what if you are a kid? What happens if you do not know how to express yourself? If someone else is trying to speak on your behalf?


"When they diagnosed my daughter with autism, she felt very relieved," says Marilou, a mother of an autistic child. "But how can any mother on earth feel comfortable when her 10-year-old daughter is diagnosed with a condition that has no treatment and will affect her for life?"


Marilou did it, struggling for years to get doctors and teachers to collaborate on what was wrong with her daughter, Sophia.


Marilou describes reaching this point as the culmination of a long battle "to understand what was behind the great sadness of my little girl."


The autism spectrum begins in childhood and may continue into adolescence and adulthood. Although some people who suffer from it can live independently, others have severe disabilities and require lifelong care and support.


If parents and caregivers have the right information, they can receive training and gain vital skills, such as dealing with difficulties in communication and social behavior, which in turn can improve the quality of life for people on the autism spectrum, and those who live with them as well.


The "hyper sensitive and emotional" mother and her "spoiled" child


“My daughter, Sophia, is very shy and in a strange way,” says Marilou. “She is serious” and “very creative,” this is how her teachers used to describe her.


"I knew from early on that she found it difficult to make friends with those of her age. She was very small compared to her peers. She assumed it was a matter of being born prematurely," she said.


But Marilou did not want to "make a fuss." "It did not worry me that she was considered different, until I saw her suffering in school. At bedtime, she would tell me: I have no friends, mom, and no one loves me."


"I kept telling her we all had good days and bad days," Marilou added. "But I was anxious and I often asked the teachers if they had noticed anything going on at school. The answer was always the same: nothing happened."


But the situation deteriorated, and Marilou returned to the teachers.


"I was very upset, I asked them if Sophia was being bullied. I knew something was wrong, but I was told that I was very emotional and very sensitive, and I was even accused of spoiling her because of too much pampering."


Marilou and her family were struggling to understand what was happening to their daughter, and they were all suffering: "Once I told a friend of mine that when I took Sophia to school, I felt like I was driving her to slaughter."


"Over the months, I saw my daughter getting angry and feeling frustrated," Marilou says, "pretending to be okay outside the house, only to melt when she came home."


She adds, "I think I made it worse at home, as I did not understand why everything should be so difficult, and I scolded her when she cried because she insisted on cleaning her teeth before wearing her pajamas. I could not understand what was different for her."


"I knew that Sophia was suffering and could not help," Marilou says. "I tried and failed, and unfortunately, my feelings overwhelmed me. Perhaps if I had explained what was going on with Sophia based on facts, rather than feelings, we would have been able to diagnose her early."


Until recently, Alice says, "quiet people who tend to be hardworking, fun and polite do not attract the interest of professionals in the fields of education and health."


But in the scientific field that is beginning to change, and gender bias is being tackled slowly and gradually.


And Alice adds, "If you want some advice on how you can help people with autism, read and learn about the disease, even if you never receive a diagnosis. Knowing a lot about it and being able to relate that to other people with the same condition ensures that you become familiar with it." With the strategies used by people with autism, and this may contribute to changing the course of a person's life with autism.


And concludes by saying, "If you were autistic and spent your entire life trying to adjust to your surroundings and your peers, you should start changing your way of thinking and realizing that coping is not important."


"In fact, you have a lot of unique skills and strength to introduce for the year. If you can, do what you did and make your difference a part of your life and your survival," she adds.


Alice runs the "Hair Curly" project, a social project to support those on the autism spectrum, their families and those around them.


As she says, "If you are a parent, notice your child's" different "interests and try to understand and appreciate how they see the world, and remember that what may be easy for you may be difficult for them."


Sophia is happy with her diagnosis and said, "I feel comfortable, but I am worried too, I don't want my classmates to know because I don't want to be different, and I don't want anyone to make fun of me."


But would she have preferred that her disease not be diagnosed? Sophia answers this question by saying, "No, I want to know, it just makes things less heavy in my heart."


We have changed the names of Marilou and Sophia to keep them private.

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