Why is the color most associated with autism blue? Because autism is a male thing. Or at least that's how - until recently - it was perceived. The spectrum was supposed to affect mostly boys, because they were the ones who heard a positive diagnosis up to four times more often than girls. Meanwhile, the National Autism Census clearly showed that of the 66% of people on the autism spectrum who have various diagnoses, as many as 89% are women. Unfortunately, those who do not have an additional diagnosis often remain undetected throughout their lives.
As we have said more than once, women are masters of camouflage. (more on this HERE) The signals they send as children are more subtle, and therefore more difficult for parents to pick up on, at least. In boys, social alienation, compulsive collecting of the same toy cars, for example, or excessive interest in timetables arouses suspicion. In contrast, a quiet, calm girl who has a collection of doll clothes and is passionate about animals surprises no one.
In addition, girls learn faster than boys that their behavior does not meet certain social norms. They get a clear message of what they should do and how they should do it (e.g., sit up straight, be quiet when adults talk, etc.) and conform to it. What's more, they read social expectations better and faster than boys, and learn social behavior and how to conform to the expectations of those around them and not stand out from the group. This is why girls and women on the autism spectrum without co-occurring intellectual disabilities are so hard to diagnose.
So what should be paid special attention to in the diagnostic process? Research and experience of adult women on the autism spectrum has led to the following list:
As they get older, there are also further signs, such as problems in dealing with peers. Both little girls and adolescent girls often feel safest at home. Later in adolescence as well as in adulthood, they tend to have fewer gender-stereotyped traits and behaviors. Their appearance also deviates from the stereotypical, as they focus on comfort instead of beauty. Most often their style can be described as "tomboyish." Due to sensory hypersensitivity or for practical reasons, they often prefer practical clothing over elegant clothing and no makeup.
A strong sense of otherness causes anxiety and loneliness, and conforming to norms involves great effort. Otherness is often - when dealing with peers - treated as undesirable otherness (dislike of contact, alienation in the peer group). This, among other reasons, is why women on the spectrum are often diagnosed with depression. As one of them writes about herself:
"If you're an undiagnosed woman on the autism spectrum, your whole life consists of feeling like you're bouncing off other people for some reason, and they either hate you or consider you inferior. You listen to stories about how in kindergarten the caregivers asked if you were by any chance handicapped because you don't play with other children."
That's why appropriate gender-specific diagnosis is so important.
"In a paradoxical way, any diagnosis becomes a savior, because in the end you are a case described in some way. Flimsy, because flimsy, but always. And it's the under-description, the feeling of being different and the inability to pinpoint exactly why, that is sometimes the worst. Diagnosis gives - or at least it gave me - some niche in which people similar to you function. With very similar experiences, getting their own diagnoses in their 30s or 40s. "
Fortunately, it's never too late for this one, although if detected early, many problems can be avoided. A basic screening test that can direct you to further diagnosis is available HERE. Its result will determine whether to take further steps toward diagnosis with JiM Foundation specialists.
We will deepen the topic of autism in women of all ages at special lectures during the 13th International Congress Autism-Europe, which will be held on 7-9.10.2022 in Krakow, Poland. More information HERE