Autism in Girls

In what might surprise no one, Falcon received an autism diagnosis a couple of weeks ago. Her diagnosis at 15 lags 9 years behind her brothers' who both got diagnosed when they were 6. Unwittingly, Ren and I became two of the many, many people who think autism in girls looks similar to autism in boys.

It doesn't.

Remember how I told you Falcon had designed about 50 characters for a novel she imagined in her head?  THAT is something autistic girls do. Autistic girls often have rich fantasy worlds. They also tend to be extremely creative.

Dragons flying around a floating castle

They tend to be voracious readers. --> Falcon read about 10 million words when she was in sixth grade. TEN MILLION! (Don't worry, I didn't count them, the reading tracking program they have to use at school did).

And a have deep love of/connection to animals. --> Our cats follow Falcon around the house like she's the Pied Piper. When she sees an animal, she connects with it deeply. If I take her to the pet store, she will fall in love with a creature there--whether it's a bird, a cat, or a chinchilla--and I have to account for the emotional distress that will follow when deciding whether or not to stop at the pet store. For a long time she told people that Frankie, my friend's Yorkshire terrier, was her best friend. She regularly lists animals among her closest friends even today.

Guess who's sitting in the chair

Shiro loves her, too

There's also:

Difficulty making and keeping friends. --> Yeah. Sigh.

Increasing difficulties with social situations as they age. --> I can't even tell you how many times she has called or texted because she is hiding (in a corner, in a closet, outside in the dark, under a table, in a guest bedroom, etc) at a party because she is totally overwhelmed.

Extreme emotional reactions to things. --> Yep.

Severe anxiety. --> Check ✔

Inability or lack of desire to understand and/or socialize with other girls. --> Uh huh.

And, oh yeah, sensory issues.--> This is the one thing I did notice! We've known about her sensitivity to sound and bright lights for years. And now I'm realizing all of her food likes and dislikes are probably sensory-related as well.

I could go on, but I suppose you get the point. There were All. Sorts. Of. Signs. And, we missed them. We. Missed. Them. Even though I KNEW autistic girls present differently than boys, even though I was looking out for it given that both of her brothers are autistic. 

Like many girls and women, she got other diagnoses, instead. First, she was diagnosed with General Anxiety Disorder, and then she was diagnosed with ADHD. Sure, these diagnoses helped us start to piece things together, but based on all the reading I've been doing since the autism diagnosis, they aren't necessarily the right diagnoses. In other words, they don't get at the underlying issue. And, I call it an issue because unnamed, autism can make things extremely difficult.

Why do we misunderstand autism in girls so much? I'm still learning, but here's my list of top four reasons based on what I've read so far:

1. First and foremost -- The diagnostic criteria has all been based on boys, and it has been assumed that autism in boys and girls manifests the same way. I doubt I need to point out that there are a lot of ways that girls and boys differ; why wouldn't the same hold true in terms of autism? Diagnostic criteria taking into account the ways that boys and girls are different has only started to be used in the last 5-10 years.

2. Society tends to think of autism as a something that usually affects boys. This is primarily because so few studies have been done about girls and autism. Getting a firm grasp on what the ratio of autism in boys vs girls proves challenging. I've seen anywhere from 2:1 to 15:1. If people don't expect to see autism in girls, they are more likely to misattribute certain behaviors to something else.

3. Girls are much better at masking their struggles. They have what this article calls a "quieter presentation" of autism than their male counterparts. They tend to have better social skills and to be better at and more interested in mimicking their peers. They also exhibit fewer restricted and repetitive behaviors than boys (link).

4. We expect different things from girls than we do boys. Despite all of my efforts to raise my boys and girl similarly, I quickly learned that from a very young age society wants different things from girls. Implicitly and explicitly girls are expected to conform in ways boys aren't until much later. I believe this means that even autistic girls learn to suppress behavior that may be considered inappropriate. Further, behavior that we often consider more "girly" can often cause indications of autism to fly under the radar. Does your daughter talk nonstop? Oh, that's because girls are more verbal. Is she completely obsessed with K-Pop?  Aren't all girls? She draws constantly and can't seem to stop when you call her? That's totally normal. She cries at the drop of a hat? Well, you know girls are super emotional. The list goes on and on.

I asked doctors over the years if we should have Falcon screened for autism. Every time, the answer was no. I could have pushed--I mean, I pushed hard to make sure the boys got screened--but I didn't. Do you want to know how we finally got the diagnosis? Falcon insisted. First, she did online screenings. I admit, when I saw results that indicated autism, I questioned whether she answered honestly. Still, she insisted, and the more she insisted, the more I began to think that maybe she was right.

Any of you who have gone through the process of getting a diagnosis know how hard it can be to get an appointment, much less a screening. It can take years. So I decided to start with the doctor who diagnosed her ADHD and anxiety. I told him by email she wanted to be evaluated. He said he didn't think she is autistic and that we didn't need to go out of our way to come in. So, I waited until her follow-up appointment for the other diagnoses (which was about 4 weeks after the first email). 

At the appointment, after we had talked about all the other stuff, I told the doctor she wanted an evaluation. He asked her why. She said, "Because it will help me to know." He asked if a diagnosis would change anything, and she told him it would. For her. Then he said to me, "Mom, what do you think? You know quite a bit about autism. Do you think she's right?" I told him I wasn't sure, but that maybe she was. So he asked us to list the reasons why we thought she might be autistic. And the more we told him, the wider his eyes got. When we were done (and we realized later we didn't even list everything), he said, "You know, Falcon, I think you're right!" and then added it to her medical record. 

It was anti-climatic; it wasn't the full work-up we did for both of the boys. But, I got Stow's diagnosis way before we managed to do the full evaluation, and getting the longer evaluation didn't change what was already there. That's how I feel about Falcon's diagnosis. Because as soon as she got it, so many things made sense in a way they hadn't before. Suddenly I couldn't understand how I didn't see it.

Over the years, I have learned there are so many different levels of mom guilt. I'm not sure what to call the level of mom guilt where you are going all out to support your autistic sons while completely overlooking your autistic daughter. I know that's an oversimplification. I know I have done many things to help her manage her allergies, her asthma, her anxiety, and her ADHD. But, I missed this, and this is a big one. We are in uncharted territory here--not only are we learning what this new diagnosis means for Falcon, but we are also learning how to manage the feelings of frustration, disappointment, and anger on Falcon's side and the massive guilt and feelings of failure on mine.