What you need to know about autism in girls and women
In December 2020, at the age of 43, I learned I am autistic.
Really, I learned nothing new. I was simply given a new lens to understand the things I had always known to be true about myself. But without that lens, I had struggled to understand those truths, and even fought against and loathed them. I spent a lot of time wondering what was wrong with me.
I am easily overwhelmed by sensory input. It’s extremely hard for me to engage in conversations with multiple participants. I forget names and faces. I explicitly mimic the body language, tone, and facial expressions of people around me. I remember coming to the startling revelation–as an adult–that it’s important to make eye contact when you’re speaking to someone. I immerse myself so deeply in my “special interests” that I lose track of the real world.
And when I run out of capacity, my brain and body just shut down.
These traits made homeschooling six children a more-than-usual challenge. Eventually, it wasn’t feasible anymore, and I spent no small amount of time beating myself up as a failure. But these same traits are very common to many autistic people. In fact, they are some of the hallmarks that led me to wonder about a diagnosis in the first place.
Along my path of autism education and diagnosis, I learned that — as an autistic female with low support needs who is intellectually gifted — my “flavor” of autism is the most likely to be missed. On average, autistic females are diagnosed later than males, and we are often misdiagnosed with other conditions first. Here’s why.
Existing diagnostic criteria for Autism Spectrum Disorders are based on research using boys and men.
The seminal studies used to define autism and establish diagnostic criteria rely on data from participants who were overwhelmingly male. It should be no surprise, then, that boys are diagnosed at much higher rates than girls.
Recent research using brain-activity measures shows that the brains of autistic girls are markedly different from neurotypical girls–but also from autistic boys. We need new and better studies to investigate what’s known as the “female autism phenotype.” This should lead to more accurate diagnoses for females of all ages.
Autistic girls and women tend to be more socially adept than boys and men.
Girls who are diagnosed at young ages tend to be the ones who have the most profound (and most “male”) autistic traits: extreme repetitive behavior, restricted interests, and lack of social reciprocity. Many autistic girls, though, hide in plain sight because they study and adopt the behaviors of the people around them, practices known as camouflaging and masking.
These practices come at a steep mental cost, though, and eventually the strategies may fall apart, especially during the socially delicate middle grades or at major life transitions. And autistic women and girls are statistically far more likely to experience bullying, sexual abuse, or assault than their neurotypical peers.
Autistic girls and women often have “special interests” that are more socially acceptable.
In the classic image of an autistic boy, he memorizes train schedules or lines up cars by the dozens. His autistic female counterpart, though, might spend hours every day exploring more typical “girly” interests like fashion, horses, or art. The difference lies in degree. Their interest in these things comes with a ferocity, passion, and depth that is atypical.
Where autism co-occurs with other diagnoses, their effects compound and obscure each other.
Autism and giftedness can both lead to extreme social awkwardness — it’s why, especially given the complicating factors already mentioned, gifted autistic females are underdiagnosed. But autism can also be either compounded or hidden by other neurodivergence or mental health issues, like anxiety, ADHD, or mood disorders. Diagnosing autistic females becomes even trickier in the context of related neuropsychological issues.
Putting female autism under the blessing
The female autism phenotype is a crucial issue in the autism community (and beyond!) that needs wider acceptance, research, and understanding. I am an autistic female, one who reads a lot about disability, and I only learned this information within the last twelve months of my 43 years on earth. If this can help even one girl or woman to gain a diagnosis or simply greater self-understanding, thanks be to God.
When we advocate for more tailored and precise medical and psychological care for women (autistic or otherwise), we acknowledge that male and female mean something true about the world, not just true in our feelings. Pushing for deeper understanding of female autism carries the deeply Catholic implication that females and males live, behave, and grow differently. In the same way that seat belts, wrenches, and PPE designed for the average male don’t work as well for women, autism diagnosis and therapies don’t either. (Also, the goal of therapy should be supportive; it should never be to normalize autistic behavior via forced compliance so as to appear outwardly “more normal.”)
The Autistic Path to Heaven
I struggled with my own autistic traits for years, practically and spiritually, when I did not understand them as autism. Things I thought were bugs were actually features. Why did you give me all these children, God, if I can’t even tolerate the noise and unpredictability of being home with them?
It turns out that God knew exactly what he was doing, when he gave the children to me and me to them. Part of what he was doing was calling all us to greater compassion for others and for ourselves, sanding each other’s rough edges down to reveal the underlying truths about who he was calling us to be and what our particular work in the world is.
Autism, even while burdensome in a neurotypical world, is also his blessing to me. It has afforded me an empathy with the outcast, a closeness in prayer, a responsiveness to music, and an ability for deep contemplation that are unique to my brain and my body. Just as it shapes my experience of human encounters, it shapes my every encounter of Christ’s presence.
An autism diagnosis, like any other diagnosis, reveals only one part of our full humanity. It should not be an all-encompassing identity; we are children of God first.
However, autistic traits, like any other inherited or acquired traits, provide parameters that shed light on our individual path to heaven. This way, not that. These crosses and virtues, not those. Autistic girls and women have a unique and still-unfolding role to play in the Body of Christ.