Should I Get Diagnosed?

This is a super personal question, there is honestly no right or wrong answer to it. If you’re here, then you probably have been through a lot of reading and basically come to the conclusion that you feel like Autism is probably the right answer for you.

You’ve likely seen the statistics on how girls who aren’t don’t need more support go under diagnosed by the system. The research was done primarily with boys, and all of the data was biased toward boys and how they present. It’s not exactly hard to make it to teens or adulthood as a lady without a diagnosis.

For many, the self diagnosis is really enough, it answers the questions they always had about themselves. They read the stories, they feel like they finally found their soul sisters and they suddenly had this massive weight they didn’t even know they were carrying pulled off of their shoulders. The relief is enough because they finally know that they aren’t alone and that other people feel the way they feel and see the world the way that they see the world.

There’s also likely some anxiety that they will be dismissed, experts will see them make some eye contact and just go “well, eye contact happened, not autistic, have a nice day” (and honestly, that might happen). It doesn’t mean that your journey is over. Get a second opinion, or a third. Research for better specialists, ask your general practitioner for better specialists.

For others, the official paper that says “yes, I do have this thing” is important. For me, it is important. It was important for me to get it for my daughter. I wanted to have the “yes, it’s true, I really can’t handle this unless I have X to help me out” or “no, my daughter can’t do this situation the same way as the rest of her class, but if you let her take breaks in a quiet room she’ll be able to handle it”. For my daughter, I really wanted her to know throughout her life that she isn’t broken, she is just different.

When I approached my daughter’s pediatrician about getting my daughter assessed for autism, we had the general conversation about why I believed she is autistic and then I told him that I know that girls have a very hard time getting an accurate diagnosis and I wanted him to recommend to me not just any specialist but I wanted him to recommend to me specialists that he knows have previously worked with girls who were on the “higher end” of the spectrum. Specialists who had worked with girls who present similarly to my daughter. I specifically told him that I was not interested in approaching this through the school district because I wanted to reduce the likelihood of getting the older school of thought of autism only presents this way because of research in boys.

Her pediatrician printed out the normal list and he went through each of the referrals that the office can make and he circled three or four, but when he got to a specific name on that list, he said “this one, she recently did a fantastic write up for another one of my patients who is very similar in behavior to your daughter”. And she was fantastic. Utilize your resources as much as you can and be clear that you know there is a struggle in diagnosis for girls and women and that you want to try and limit the search for specialists that understand that there is a struggle for girls and women. Leverage your doctors and psychologists if they are on your side to help you in this search as much as you can.

In my opinion, there is no harm that can come from a diagnosis, only benefits that can come. But there is no need to disclose your diagnosis to anyone unless you want to after you get it.

Of course, all of this is assuming that you have ready access to decent healthcare and professionals who are caught up with the times and won’t need to hop through multiple professionals and/or travel extremely far in order to find an adult autism specialist.

Girls Can Be Autistic

The first time I really heard the word “autism” I was sitting in a university level psychology class listening to my professor tell us that autism was just a different way of seeing the world. I’m sure I had heard of it before, but I had never really thought much about it or reserved much mental energy about it.

The second time I really paid any attention to the word was on an entire wing of school building I was working in for what would have been called the “special-ed” kids when I was in elementary school “The Autism Wing”. And I went home that evening and posted a rant on my newsfeed on Facebook. “Not all autistic kids are learning disabled and not all learning disabled kids have autism” and of course got the “yeah, but many kids with autism are severely disabled” response back from someone I respected and just felt like an idiot.

I have had many labels thrown my way over the years, some of them stuck: gifted, odd, quirky, sassy, bitchy, smart, focused, shy, quiet, reserved. Some of them didn’t: ADD, bipolar disorder, just to name a couple specific diagnoses. So many labels that were close but not really fitting. Yeah, I do have depression and anxiety. But they can’t even really call it anything other than “Generalized Anxiety Disorder” which basically just sounds like “yeah, basically you just don’t really operate like normal, yeah?”

The third time I paid attention to the word “autistic” was when I stumbled upon the same screener that many people who suspect they may have autism or Asperger’s have taken. I scored in the range of high amounts of autistic traits and recommendation to see someone for a potential diagnosis. Problem? I’m a girl. Girls aren’t autistic. Everyone knows this! I basically read the entirety of both the DSM IV and V and it’s pretty well known that it’s statistically improbable that girls are autistic.

So, of course I sent that to my friend and had him take the test, he also scored in that range. We talked about how of course we scored high because we are mathy people (him being an engineer and all, me just being a nerd). But my brain still wouldn’t let it rest so I sent it around to a few more people. Funny thing, though, everyone else I knew was in the low autistic traits range.

Fourth time I really paid attention to the word, you can probably guess: same friend sought a diagnosis. This hit me a wee bit too close to home. I actually wasn’t capable of accepting this. He and I are so freaky similar. He can’t be autistic because I can’t be autistic. Because, you know, girls can’t be autistic. Ergo, since we are basically the same person, he can’t be autistic. Can’t argue with that flawless logic, can you?

Doesn’t matter how much my brain screamed “no” — you can’t stop reality.

Guess what? He totally got diagnosed. Still took me years to stop being in denial about myself because, y’know. Girls can’t be autistic.

So here I am. Ready to tell you that girls can, in fact, be autistic.

We look “different” than textbook. We typically hid it a little bit better than our autistic brethren, partially because girls tend to want social connections more than boys. There are starting to be studies done to see how autistic girls perceive the world. This one that I’ve looked at found that autistic girls basically use other parts of the brain to respond to social cues outside of the part of the brain that neurotypical girls would use in order to translate social cues.

So basically, our brains were impaired and sort of “realized” that they were impaired but found a new traffic route to try and improve it, but it’s not quite as good as neurotypical girls. So we found a new way to respond somewhat well to social cues. We aren’t as good at it as most neurotypical girls, but we are better at it and get more reward from it than our autistic brothers do.

And of course, because no entry post on autistic women and girls is ever complete without a mention of masking, let me go ahead and dive right into it. Masking is living every day as if you are participating in a stage play without a script.

Everyone else knows what is going on, but you are sort of flying by the seat of your pants and needing to improv a wee bit. You put on this shell of what resembles a human being and a character that other people mostly respect and you never let anyone get close enough to find the cracks where the real you falls out, because the last time that happened…

As a girl, this was resolved by having a few close friends that I was always around for each task that I was doing. It was almost like I didn’t realize that my art class friends could be my friends in other places. Or that my playground friends could also be friends in class. I mostly had hobbies that I could do entirely by myself (yay books!) We also moved so much that it was never weird to anyone that I never kept friends through different grades.

It turns out that research is finally starting to realize that girls are, indeed, autistic too.