I laughed like a hyena. There I was (isn’t that how all good stories start?) in the doctor’s office once again talking about autism…but this time we were talking about my little diva. What? In that moment it was either laugh or cry. Not because autism is a horrible diagnosis, but in that moment, I felt overwhelmed and as if I had failed my diva for the past seven years. I mean, come on, I’m supposed to be “The Aspie Whisperer,” how had I not nailed this one? Sure, I had questioned her development in some areas, sure I had noticed a few tell-tell symptoms. However, I had chalked them up to mostly learned behavior from living in our special house. She is our child, so she was bound to be “quirky” in some ways.
The doctor and I had gone back and forth for a couple of years about the diva. When I would claim something wasn’t quite right, he would listen attentively, validate my concerns, and then give an alternate explanation and the promise we would continue to watch for some more substantial signs of autism. Her inability to perform in school, while still registering a higher-than-normal IQ- school anxiety, possible early onset dyslexia, perhaps she just didn’t care about school. Her hyper focus on dance, dolls, and playing bride- that’s just normal girl. The sensory issues she has with food and clothes- she’s just picky. We do, after all, call her our little diva. None of our guesses ever rang quite true with the doctor or me either one. Eventually we begin looking at atypical autism or PDD-NOS (Pervasive Developmental Delay-Not Otherwise Specified). And if you have a girl on the spectrum, you’ve probably heard the phrase PDD-NOS. Basically, it is the diagnosis for children- especially girls- who fit some characteristics of autism, but not enough to actually be diagnosed with autism. As my doctor and I are learning, perhaps this is because atypical autism is actually typical autism in girls.
I recently ran across an article that riveted me by Maia Szalavitz in Scientific America. The article (which can be found at http://www.scientificamerican.com/article/autism-it-s-different-in-girls) discusses the different ways in which autism presents itself in girls rather than boys. Such differences are causing many girls who are actually on the autism spectrum to be miss or underdiagnosed, leading to a lack of services or understanding for girls on the spectrum.
Sharing our diva’s diagnosis has been a totally different experience as well. When our little Aspie was diagnosed with Asperger’s, and later high functioning autism, people generally nodded their heads and had their own “Aha!” moment as they put the pieces together. However, as we begin to discuss diva’s diagnosis, I find myself being met with a lot of, “Are you sure? Don’t you think you just see autism in everyone?” In diva’s scenario, I am the one nodding my head and seeing the pieces fall into place.
It’s not surprising that girls on the spectrum are harder to diagnose. Historically, criterion for diagnosing autism has been done with data taken from studies done with boys…rightfully so, considering that right now boys are considered four times more likely to have autistic traits. It is only recently we are taking into account the biological differences in the makeup of female and male brains when looking at autism. Our girls typically show less severe symptoms, and mask their symptoms with imitated social cues.
In general, females with autism spectrum disorder are better able to mimic appropriate social interactions, and are overall much more social than their male counterparts. We found this to be especially true with our little diva. For years people said she could never be “on the spectrum” because she is a social butterfly. However, if you look more closely, you will notice she is a social butterfly only as long as she has control and direct input into the interaction. She is a master at studying and reading her audience and then presenting what she wants to do in a way that makes you want to participate. Put her into a situation where she has no control or is introduced to a new way of interacting and she flounders. This becomes more of a problem for female spectrum dwellers as they grow older and leave the relatively easy friendships of elementary school and are forced to navigate the mean girl world of middle school and high school.
Another large hurdle for girls being diagnosed is lack of obsessive interests. Reality is, many girls on the spectrum are not obsessed with red flag interests, such as Thomas the Tank Engine still being your favorite at 14. Girls on the spectrum tend to have limited interests, but focus their obsessive nature into activities such as cheer, dance, debate, or stage. Research suggests girls choose more “acceptable” forms of obsession. Activities that naturally require a lot of time, energy, and dedication. Furthermore, they tend to choose activities in which they can play a pre-determined part or act a certain way. Our little diva is a dancing fanatic. At seven she is already dancing multiple times a week and participating in every production that the studio will allow her. When asked why this appeals to her, she will answer bluntly, “Dancers go on stage and dance their dance. They feel the movement and I can’t get the emotions wrong.”
Perhaps the most interesting part of current research is the actual makeup of an autistic girl’s brain. For years scientist have been comparing boys with autism to their neuro-typical counterparts. Unfortunately, they have been comparing girls to male counterparts as well. While the research is not yet definitive, studies have repeatedly shown that girls with autism tend to have brain function similar to neuro-typical boys. Their brains are markedly different than neuro-typical girls. Simply put, our autistic girls have brains that function much more like a typical boy rather than a typical girl. While this seems like an insignificant difference, it accounts for the misdiagnosis of girls on the spectrum as simply ADHD or “quirky.”
One of the many things girls and boys on the spectrum can both relate to is being describe as “too much.” Generally speaking, our spectrum dwellers are described as too intense, too emotional, too picky, too sensitive, etc. For people on the higher functioning end of the spectrum, this causes a lot of anxiety. Regardless of gender, our loved ones on the spectrum are trying to navigate a world where they don’t quite “fit in.” It is our job as their loved ones to help prepare them the best we can and give them the tools they need to cope with the outside world in their own way. Our homes need to be their safe havens. We need to work towards educating a world that is quick to dismiss anything different.
One day science will likely find clues to help us better understand the unique way in which our spectrum dweller’s brains work. Until then, I laugh because I am officially the only neuro-typical in our household. As such, my two Aspies and a diva like to point out that I am the odd man out. However, they never give me a really hard time…because they know what it’s like. Maybe we could all learn a little something about acceptance from all of our spectrum dwellers.