If you spend an hour on any forum where autistic women show up to support each other and share their experiences, you’ll see one version or another of the same story.
In this story, an autistic woman, perhaps in her 20s or 30s or sometimes even older, talks about how difficult it was to access an assessment as an adult, and how much easier her school years might have been if her autism had been identified back then. The story often includes a line like, “My brother was diagnosed in elementary school, but I was just labeled ‘quiet’ or ‘weird’ or ‘quirky.'”
Finally, experts are speaking out and backing this up, affirming that schools are woefully inadequately prepared to spot autism in girls.
(Important note: autism research is ongoing, and what we know about it can change rapidly.)
There Is No Such Thing As “Girl Autism”
It’s easy to fall into gender stereotypes on this subject and divide the neurotype into “girl autism” and “boy autism.” To narrow the presentation that way still does a disservice to kids, and should be avoided.
However, we can recognize that autism often presents differently in boys and girls, with the caveat that this likely has a lot more to do with social norms and expectations than biology. The ways kids are expected to play also play a role here.
For instance, if a little boy lines all his cars in a row instead of racing them, an adult may notice it and consider the behavior atypical. Still, if a little girl lines up all of her doll shoes in the same way, an adult observing may consider her to be tidying and organizing.
Suppose both children choose to color alone rather than engaging with classmates, or both refuse to make eye contact, or both struggle with communication. In that case, an observing adult may decide that the boy needs to be assessed for autism, but the girl is “just shy.”
Autistic Women Say This Is Damaging To Them
Many late-diagnosed autistic women say that it would have been much easier for them, or at least more comfortable, in school if they’d known they were autistic, rather than wearing less-kind labels heaped on them by others.
That’s without even considering access to accommodations. For instance, an autistic child might get to use noise-canceling headphones to tolerate a loud assembly, whereas a child who has been labeled as merely “shy” or “sensitive” might not.
Other accommodations often allowed for a neurodivergent child, but not for an undiagnosed child, might include extra time for testing, a quiet space for testing, visual reminders or checklists, access to adaptable seating, and fidget items.
So, Why Are Autistic Girls So Often Overlooked?
Buzzfeed asked Dr Ray Romanczyk from the Institute for Childhood Development at Binghamton University. He explained that there is a lot of pressure on educators to “identify everything,” and that this is difficult, as a significant amount of specialized training is involved. He says:
“[A]utism, especially in girls, is one of those things where the range of presentation can be from the very subtle to the very clear, and so to expect perfect identification by other than experts is really a hard goal to achieve.”
He believes that the current system can be improved with better training for educators, but we all recognize that teachers already have a lot on their plates.
But Why The Gender Difference?
There are a few theories about why autism can present differently in girls than in boys.
Genetic differences are the most obvious theory, but they only account for a fraction of the story. The Child Mind Institute shared a story, for example, of two siblings, a brother and a sister. Though the sister had more clear symptoms of autism (delayed speech, meltdowns, and play style) than her brother, he was diagnosed quickly, while the parents had to fight for their daughter’s diagnosis.
They say experts tried to write her symptoms off as something else — anything but autism. Low self-esteem and parenting failures were both proposed as contributing factors to her differences.
Neuropsychologist Susan F. Epstein, PhD, explains that this is because our “classic” presentation of autism is based on what was witnessed in boys. She says:
“So where the boys are looking at train schedules, girls might have excessive interest in horses or unicorns, which is not unexpected for girls. But the level of the interest might be missed and the level of oddity can be a little more damped down. It’s not quite as obvious to an untrained eye.”
In other words, if an autistic kid develops a special interest, it might be influenced by gendered expectations. If small boys are given trains and small girls are given unicorns (to continue with the same examples above), then maybe those are the special interests they develop, but the intensity goes unnoticed in the girl.
(It’s a known problem in medicine, including in calculating dosages of medications, not just in autism diagnosis, and the National Center for Health warns that it has placed women in dangerous situations in many cases.)
Girls Also Seem To Mask More
When an autistic person makes efforts to cover up their autistic traits (consciously or unconsciously) we call it masking. Those who are good at masking may be able to hide their autism from others effectively, but it can be exhausting. It can result in meltdowns, especially at the end of a period of social involvement, such as after school or at night.
There are signs that girls find themselves under more social pressure to ‘fit in’ and ‘be good,’ and that they are therefore more likely to train themselves to mask to an extreme degree, according to a report in ASHAWire.
“’The social pressures that girls face in behavior are strict, and people start enforcing them earlier than in boys,’ said Zoe Gross, director of operations at the Autistic Self Advocacy Network.
And girls with ASD tend not to disregard these social pressures; instead, they care about them. They try to act appropriately and “be good.” This masking behavior can make diagnosis difficult.”
So, What Do We Do About It?
As parents, we can educate ourselves on the signs of autism and other neurodivergencies, so that even if the teacher and pediatrician don’t spot them, we do.
We can watch for signs that our children, regardless of gender, struggle to engage socially with their peers. We can look for highly-focused interests that our kids seem to attach to in a stronger way than we might expect, and for repetitive behaviors or a strong sense of need for routine.
Many behaviors or sensations connected to autism may be a matter of degree — nobody likes to wear uncomfortable clothing, for instance, but for an autistic child, the sensory discomfort might rise to a level that makes it impossible to go forward with the day’s routine, because the sock seam or the too-crunchy-pants feeling is all that the child can think about until it stops.
We can listen to autistic women about their experiences, and learn from them.
We can push for diagnoses and assessments if we believe that we’re seeing symptoms that educators and/or medical professionals are overlooking.
Perhaps most important of all, we can make sure our children, regardless of gender, know that they are accepted and loved as they are, without the mask.