How Many Girls with Autism Get Left Behind?
ASD research has focused on men and boys for far too long.
On the whole spectrum of autism, I am considered “high functioning.” You might say that I have Asperger’s, though the term is now falling out of fashion.
At any rate, I am a woman with autism, but I didn’t discover this fact until after I became a mother, and my daughter was already two years old.
At my diagnosis, I was 33 years old. Today, I am nearly 37.
It was, of course, a lightbulb moment for me. The diagnosis helped me better understand myself and feel that much less absurd. But that’s about all it did for me: assure me that I wasn’t so crazy afterall.
Discovering you’ve had autism your entire life can also feel like shit, because it’s one more diagnosis you carry which means you will likely always struggle to interact with others.
Plus, it points to an entire lifetime of missed opportunities. Such a late diagnosis of autism is more than some aha moment. It is a severe failure of our educational system, as well as the autism movement at large.
You’re not given any sort of apology. There’s no, “I’m sorry you never got the help you needed as a child and young adult to better function in this world. Let’s get you back on track right now.” Nope. You don’t get a special name tag or ID. You simply move on.
The people who have known you for your whole life or even just a week will all still expect you to behave like a neurotypical person. It doesn’t matter that you’re not and have never been neurotypical.
It doesn’t matter that this diagnosis explains why some of your behavior drives your neurotypical friends and family nuts. In my experience, autism isn’t a diagnosis that most loved ones seem able to accept with ease.
When you try to educate friends and family members about your diagnosis as a woman with autism, most can’t wrap their mind around it. They want to know why you’re not more like Sheldon on The Big Bang Theory. Or The Good Doctor. Or that one Netflix show with the actor who mocks people with disabilities.
Older folks bring up The Rain Man and ask why you’re not, you know, a genius. Well, buddy, I’m autistic but I’m not a freaking savant.
Yet these are all things people will ask. Basically, why aren’t you more like the stereotypical male portrayal of autism?
They will question the legitimacy of your diagnosis. You might question it too.
They might make fun of you. Or use it against you. Shortly after my diagnosis, my daughter’s dad called me “Shannon Spazbergers” in an argument about our daughter’s medical needs in his effort to shut me down and indicate I had nothing valuable to say.
I was just a spaz. I was just being autistic.
When I think about my experiences with autism, I want to scream. But that’s normal for me. Because I have always been someone who is easily overwhelmed.
As a child it was called sensory processing disorder, which is something my 5-year-old daughter has herself. I still work with her on some rigidity and sensory issues, but I’ve been told she isn’t on the spectrum. That’s cool, yet I don’t actually trust most doctors on the first go anymore. So I’ll watch, wait, and see. Just in case.
Our first pediatrician told me my infant daughter didn’t have tongue tie and that I was simply a nervous new mom. So we dealt with GERD, colic, food regression and speech delays until I finally said enough is enough. A second opinion when she was nearly 2 confirmed my suspicion of tongue tie and led to her needing speech and occupational therapy for about 8 months after her surgery. As an infant, all she needed was a quick snip, but I couldn’t get a doctor to take me seriously.
The therapy co-pays amounted to more than $800 every month. And people asked why I had no savings back then. For 6 months, my kid’s therapy cost more than our rent.
But those therapy sessions also led to my own diagnosis of autism while she was being screened.
Women with autism may not display the same symptoms as men.
When my daughter started occupational and speech therapy, I learned that autism in women may not present itself the same as it does with men. That girls and women with high functioning autism often fall through the cracks since most research about autism has focused on males.
When the therapists told me this, I was horrified. Angry, even. I headed to Google and found out that yes, this is a real phenomenon. But it’s still not widely known. Parents, educators, and even physicians often don’t know what to look for. Which makes me feel like it’s up to us mothers to educate and raise awareness. We’re the ones who get shit done, right?
How could this happen?
People ask me how this could happen. How experts and doctors miss something so important. I think I usually look at them blankly, like what should we expect? Perfection from every doctor and researcher? I don’t think that’s going to happen.
We seem to have the notion that science and medicine are static. That we know everything there is to know right now. But I don’t believe this is true. We don’t know what we don’t know. Science, research and medicine are all subject to outside forces like interpretation, bias, and even money.
I know a thing or two about this because I also have lipedema, a fat disorder you’ve likely never heard of even though it’s pretty damn easy to diagnose just by looking at a patient’s legs. Guess who couldn’t get that diagnosis until she was 34. Yes, that would be me.
As I told you, I don’t exactly trust most doctors by default. There have been too many other ridiculous situations, like when my endocrinologist kept me on Lupron for 7 years as a child and called all of the drug’s side effects symptoms of my disease, precocious puberty. Meanwhile, grown women on the drug for only 6 months complain that it’s ruined their lives.
Oh, but it’s cool. Years later, the makers of Lupron got in hot water for giving doctors kickbacks for prescribing the cancer drug for off-label uses. Also for inflating the price, of course. Ironically, I never benefited from any of the settlements because I was a child on medical assistance and welfare. But it sure impacted my belief system.
That said, I consider my suspicion or skepticism when it comes to western medicine pretty much warranted. So, how can doctors and experts get autism wrong?
I don’t think it’s much different from the realization we all eventually have that our teachers and parents are in fact fallible. Grownups and experts fuck up all the damn time.
Unfortunately, when it comes to girls falling through the cracks and not getting the autism diagnosis they need, this is a big deal. A missed diagnosis can set girls up for significant problems and enormous setbacks down the road. Since we as females with autism don’t know any better and have never learned that our brains function differently from the “norm,” we naturally overlook some critical issues.
Girls with autism are treated and punished like neurotypical kids, and then adults wonder why we don’t respond “normally.”
One thing I have never done well was juggle or multitask. To this day, I get overwhelmed and can’t function when there’s too much on my plate. It’s a whole sensory overload thing — too much sound, too much feeling, too much everything.
Throughout my education, this challenge with overwhelm was something I tried to hide. Sometimes I developed workarounds to help me cope and finish my work. At other times, my inability to keep up seeped through the cracks in the form of missing homework assignments. If I felt I couldn’t complete an assignment up to par, I couldn’t even bring myself to turn it in.
My parents and teachers never understood this quirk of mine. They wanted to know why I hadn’t turned something in for even a bit of credit since I’d at least worked on the assignment. But I didn’t understand what they wanted me to turn in if I wasn’t done.
Overall, I was a good student. I made honor roll. But I also took several courses I nearly failed. I never got the help I needed academically or socially. Instead, adults treated me like I simply had these random spots of laziness or rebellion in my life. And I learned to (try to) camouflage those otherwise unacceptable parts of myself.
Girls with autism are more susceptible to falling for abusive partners.
There are a lot of stereotypes about people with autism being unable to take a joke because we take things so literally. That we don’t understand sarcasm. In my case, I am actually very dry and sarcastic, but I do have a problem taking the things people say in relationships much more literally than you’re “supposed to.”
It’s also very difficult for me to comprehend why people lie in relationships. Ultimately, I have been very naive when it comes to love and I have gravitated toward abusive partners who frequently gaslight me.
Sadly, people with autism tend to experience more abuse from partners. Which means girls who miss out on a diagnosis of autism are walking blindly into potentially dangerous and toxic situations because they haven’t been equipped with the tools to recognize such dysfunction.
Girls with autism are prone to social regression when our routines change.
I was one of those kids who enjoyed going to school all the way through my high school graduation. For an introvert, I could become a social butterfly, and school was a refuge from my dysfunctional family life. But without that routine, there would be no friends or social engagement at all.
When high school ended, I was incredibly unprepared for life as a young adult. Though I’d been a decent student before college, I now found myself flunking out of half my classes.
But it wasn’t because I didn’t do the work. I was afraid to participate. I suddenly found myself regressing socially and I didn’t understand what was happening.
I was afraid to raise my hand to speak up in my classes. On the few occasions I did, it seemed like my comments were not well-received. Eventually I felt too self-conscious to attend all of my classes. And although I got along well with my roommate, I couldn’t seem to have a genuine social life no matter how much I tried.
As time wore on, it became harder for me to keep up social interactions when the responsibility was up to me. Today, without the built-in social aspects of school or traditional work, I have a strong inclination to become a recluse or hermit — even though I hate it.
Regression in social skills and anxiety coping skills is actually considered a symptom of autism most prevalent in females. This means we are at a greater risk for isolation as we grow up, but without a proper diagnosis, we don’t know why.
We deserve better than this.
These are only three ways females suffer when they aren’t properly diagnosed with autism. The truth is that I could write a book about all of the other problems with girls not getting the right diagnosis. Girls like me are routinely set up for failure, heartbreak, low self-esteem, and worse.
It isn’t even just the atypical girls who suffer. When girls with high functioning autism go under the radar, we all suffer — that includes our neurotypical society too. The whole world could benefit from our gifts and callings, but we can’t thrive without the right diagnosis and tools.
The data is clear. Girls with high functioning autism are being left behind. So what are we going to do about it?