When I was a kid, my mother made photo albums for each of her children and added drawings we made during these years. When you take out these paintings, it reads on the back: “Appletree, Marlies, age 2”. “Appletree, Marlies, age 3”. “Appletree, Marlies, age 4”. “Appletree, Marlies, age 5”.
Child care workers, teachers and my parents all agreed – that was weird. But hey still weren’t able to find an explanation. Girls with autism? That wasn’t possible, because after all, it didn’t exist. Well, that’s what everyone thought, but where does this assumption stem from?
Just a “boys’ problem”
In the last years statistics have shown there is only one neurodiverse woman for every eight autistic men. New studies corrected this number to around one woman per two to four men. Not only autistic people ask whether this gender difference comes down to a correlation.
Because it was wrongly assumed that it was primarily a “boys’ problem”, diagnostic criteria were on male autistics, without considering the female criteria of autism. This spawned a self-fulfilling prophecy: few women were diagnosed with autism, which led to the assumption that autism isn’t common in women.
To this day, autism is linked with typically “male” characteristics: having a hard time fitting in, social problems, special interests, drawn to numbers and logic – all characteristics we falsly assume lie more with men and boys than with women and girls. But autism is a lot more than having a penchant for logic.
“The current autism diagnosis has a male perspective”, says neuropsychologist Susan F. Epstein. “While men with special interests could be interested in studying train schedules, women might show a bigger interest in horses, butbecause this is already a female cliche, it doesn’t strike anyone as odd.”
A little bit too much testosterone?
The way the cause study is conducted also confirms that autism is often seen as a male neurodiversity. For example, British psychologist and autism expert Simon Baron-Cohen developed the “Extreme Male Brain Theory”. According to this theory, autistic people have an much more “male” brain than usual, caused by a very high level of testosterone in the womb. To prove this, he and his team examined 58 women during their pregnancies.
Baron-Cohen’s theory is a controversial one. Scientists highlight that a correlation doesn not equal causality. This lead to the “Extreme Male Brain Theory” being one among of many unproven theories about the origin of autism.
Comorbidities take center stage
While autistic boys prefer repetitive and stereotypical actions, autistic girls tend to be withdrawn and shy. A sensitivity for sensory input, which is common for autistic people, can easily be confused with excessive sensibility which is more commonly attributed to girls than boys. Many female autistics explain that they follow society’s strict rules to not attract too much attention and prefer to stay in an observing role to learn how other children interact with one another.
Autistic girls who grow up to become teens experience high pressure adjust which in turn often leads to eating disorders, depression and anxiety – comorbidities they are later diagnosed with. But is it possible to treat comorbidities without knowing their main cause?
Sexism in medicine
It’s not just that female bodies don’t work like male bodies, women often do not get equal attention from doctors – a fact that is luckily getting more attention. Female discomfort is often assessed wrongly, not taken seriously at all or is downplayed. Paired with the misconception that autism does not occur that often in women it can be said that the obstacles to be diagnosed are high – in many cases way too high.
Adjustment of diagnostic processes
A lecturer at Cambridge examined whether the parameters as well as the diagnostic process itself play a part int late or missing diagnoses among women with autism. he process was reviewed with autistic women and parameters were created that would benefit them. This included more distinctive questions without subtext. The room was designed to not feature to many sensory stimuli and women were shown pictures of the room up front so they could decide if they prefered a sit-down interview or answering questions via video.
The doctors and psychiatrist involved in the process were also questioned. The result: many did in fact believe that women weren’t affected by autism. One woman was told she was way too bad at maths to be autistic. Other diagnosticians confused social difficulties with shyness.
The lecturer from Cambridge concluded that a revision of the general diagnostic process would lead to a big progress for women with autism. He also highlighted a key factor with women: past sexual abuse, the hiding of one’s own autism up until a total exhaustion as well as the constant feeling of being misunderstood.
The first of many steps along this path
Regardless of whether the way autism express itself in men and women is of a biological or social origin, it’s important that the diagnostic process and the assistance for autistic people take this differences into consideration. Only then it can be guaranteed that autistic women receive the help they truly need. Until then there’s a long way ahead of us, but it’s important that we walk it together.