Why was it so hard for girls to get diagnosed?

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For a few different purposes, I recently picked up my old school records. I decided to sit down and read them. Note that I am now a 25 year old woman, born in 1993, but my evaluations started at 6 years old. The very first page starts:


"(My name) was referred for evaluation by her kindergarten teacher, (teacher). The referral describes (my name) as an unusually fearful youngster who is demonstrating fluctuating attention in the classroom. Eye contact is poor, with (my name) noted to be very shy and uncomfortable with attention. She is generally non communicative in the school setting and tends to exhibit ongoing self-stimulating behaviors such as foot tapping, walking in circles, rubbing her clothes, and hands in her pants. She appears to have high academic skills with poor fine motor skills, with poor performance demonstrated in the classroom. Additionally, she has been experiencing urinary accidents, although she has many opportunities to use the bathroom."


There are *30ish* pages of stuff like this, ranging from ages 6-17. Though, I did find my voice somewhere around age 9. I had many diagnoses, from selective mutism, to social anxiety disorder, to ADHD, and even "Learning Disability Not Otherwise Specified: Autism CHARACTARISTICS, you know, because you're a girl. Girls don't get autism."

finally at age 19 I fell into the lap of a doctor who within two sessions said "No offense sweetheart, but how were you not diagnosed earlier? You very obviously have autism!" (No offense taken. shes a great doctor and I plan on seeing her as long as possible)

I sincerely hope things are better for young girls today.

In case of such kind of behaviour it shouldn't be so hard.
But may be this videos of Tony Attwood answer your question:
https://www.youtube.com/watch?v=wfOHnt4PMFo
https://www.youtube.com/watch?v=LuZFThlOiJI

_________________
I am as I am. Life has to be an adventure!

Well aside from the argument that girls are for some reason better at masking and blending in, to be honest I think it’s mostly sexism at fault. I would get infuriated a lot growing up when I constantly noticed the injustice of how I was treated differently to boys in my viscosity, siblings, classmates or otherwise. Stuff that boys are expected to exhibit (bad hygiene, laziness, domestic inability, moodiness, aggression, interest in ‘boyish things’) were constantly tolerated or even talked about with affection whereas the same traits and behaviours in me where STRONGLY disoursged and shamed. My brothers would never clean up or help at home, and it would fall on me because my family felt that it wasn’t too important to make the boys develop the habit, as they’d just have girls do these things for them later in life. Having stinky socks and not wanting to shower was normal for boys, but shameful and disgusting for me. I was interested in lots of things as a kid that disturbed the adults who would tell me ‘that’s boy stuff’. Boys could moodily hang back and pay with handheld consoles at gatherings but girls are meant to smile and be affable. I would argue the unfairness but was accused of being difficult and selfish for doing so, was shamed and recoiled from if I was gross, unfriendly or spoke inappropriately. Because girls get shamed so much for behaviour that boys get away with, we are forced to try to cover it up or change to get approval or just not get in trouble.
With time we can get good enough at it to seem a ‘little weird’ or nerdy, rather than full blown aspergian.
That’s my theory!

The original diagnostic criteria described how autism presents in boys so clinicians missed girls. At least in part, because they missed girls the scientific literature said and still says that it is, for the most part, a boys condition. Since it is considered mostly male condition clinicians do not bother looking for it in girls. So between clinicians not looking for it based on the assumption it is a mostly boys condition and even if they are looking for looking for how it presents in boys there a lot of female autism goes misdiagnosed as another condition or it is missed completely.

I don't think I would have been diagnosed at as young as 8 years old if I wasn't so afraid of the bells at school. If I knew the bell was due to ring, I would put my hands over my ears, and those times were usually when the hallways were busy with noisy children. I was too embarrassed to tell the teachers that I was afraid of the bell, so I suppose they just put it down to me not liking the noise of the children, but really the noise of the children did not bother me at all. In fact no noises bothered me in school except for bells. I displayed peculiar behaviours when I first started school, like causing disruption in the classroom and lacking motor skills in the playground and bumping into other children. But with support with my work I quickly grew out of these behaviours, so I think that if I hadn't developed a fear of the bells, my Asperger's might have been missed until at least my teen years. The teachers probably would have brushed off the peculiar behaviour as me being a hyperactive 4-year-old, and I might have been seen as an anxious child with ADD or dyspraxia. As a child, being socially awkward but NOT socially clueless among your peers can get missed and brushed off as a shy or anxious child. It's behaviours like having hands over the ears or rocking back and forth which often grasps the attention of teachers enough to cause concern. Even not making eye contact as a small child doesn't always scream out ASD, as some young children can avoid eye contact if they are shy, sensitive or anxious.

I do think autism presents more disruptively in boys than girls. I think girls internalize the upset more and boys externalise.

I had to get my own diagnosis for autism and dyslexia. I was a non verbal child put down to "she can talk she just doesn't want to"

I do think we're very sexist in what we allow from boys but not from girls.

I agree with the above poster, about the internalizing style of girls. Basically, if you don't make problems for others, nobody notices you - this is the experience of teachers I've talked to.

Sometimes, in newspaper articles and the like, when you see a girl with a long list of diagnoses...like a combo of ADHD, dyspraxia, dyslexia, OCD, and then they mention rituals and fear of loud noises......I just think "Wow. It's incredible how they are managing to avoid the autism diagnosis that is staring them in the eye." I know that it's silly to diagnose someone you don't know, but sometimes when you see these lists, you can only come up with one reason why this person does not have an autism diagnosis, and that's the fact that she's a girl.

My opinion is a bit controversial, but I don't think that it's a matter of sexism or a flawed diagnostic criteria. I don't believe in "female autism," based on the version explained to me, and I agree with the current criteria that a diagnosis should be based on impairments. That said, I think girls are more likely to be overlooked or misdiagnosed, but that it is more due to the fact that doctors often don't use the diagnostic criteria as it's supposed to be used.

Like I said, the diagnostic criteria looks at absolute ability - traits are considered symptoms of a disorder if they significantly affect a person's ability to function. So, when a doctor considers whether or not a person has autism, they should be looking at the areas in which their behavior/skills are inhibited or impaired. That's not what happens all the time, though. Often, doctors will use impressions and stereotypes as a measure of autism. That's where girls are missed, because they are less physically expressive and have better verbal/social skills, preventing them from coming across as stereotypically autistic, even if impairments are present equal to that of a male with ASD. It's when doctors ignore a child's functional problems in favor of their own instinctual "autism sense" that the disorder is missed. Example: When I was younger, my mom asked a counselor if I could have autism, but she shot it down on the basis that I "don't look weird like autistic people do." And it's not the only area in which this impression-based method is used. Note that autistic girls are often misdiagnosed with ADHD (which is also a male-dominated disorder) - because that's the vibe they give off (this is both my impression and my experience). A specialist recommended me to be tested for ADHD when I was eight, but I guarantee that I don't have it. It's all based on impressions.

The DSM was created to standardize diagnostic criteria because various shrinks in various different places were making up their own. So, maybe that's an indication that there's just a strong natural tendency in the field to make up one's own criteria, and the inconsistency is how people end up not diagnosed for decades.

Because girls are better at masking. We are also less disruptive (think of the old saying the squeaky wheel gets the oil). I was a straight A student, why would anyone try to find a root for my issues? It didn't matter that I was so depressed that I attempted suicide at 12, dx'ed with generalized anxiety disorder, social anxiety disorder, adhd, ocd, dermatillomania, mood disorders, etc,... I was a good student who just didn't socially fit in. That was a personal problem.

However, I wonder if that is a cultural thing because western civilizations tend to be more internal whereas eastern civilizations tend to think more about situations and be hollistic in approach.