Autism in Females: Are we missing something?

Let's talk about autism in females. This is a topic I have had a lot of questions from followers about as there is a lot of new research and narratives forming around the subject. In this blog, I want to review what autism is and how we diagnose it. Then discuss how females tend to present differently than males. And finally, examine the prevalence of the higher rates diagnosed in males vs. females. This is where the controversy comes in, and emotions tend to run high, so go easy on me.

  Autism was first documented back around 1910 by a clinician describing unusual symptoms in a psychiatric patient, initially thought schizophrenic. The root of the Latin word autism is "autos," which means the self. He observed that this patient was withdrawn from the outside world and looked inward. 

       Fast forward to the 1940s. Two groups of researchers began to study the condition more intensively, one in the US. and the other in Germany. The name of the German researcher may sound familiar, Hans Asperger. This is significant because the higher functioning form of autism was referred to as Asperger's disorder after observing patients with higher functioning, often accompanied by intellectual or creative gifts. This label persevered until about eight years ago with the publishing of the DSM-5, categorizing autism as a spectrum rather than two distinct disorders.

Nevertheless, many still prefer to use this term to differentiate the presentations to the consternation of many. The Asperger's label continues to be highly controversial, and I will likely create a video/blog on this at some point (against my better judgment). Still, I'd prefer to stick with one controversy at a time. I can only handle so much heat all at once.

The two broad categories of autism symptoms are social and communication difficulties like being withdrawn from others, verbal and non-verbal deficits, a seeming lack of interest in relationships, and difficulty understanding social cues. The other category consists of repetitive movements and fixed interests. For example, folks with autism often may shake their hands, rock back and forth, or display other self-soothing behaviors. It's also common to have sensitivity to sensory stimuli like loud noises or certain textures. As far as fixations go, often, folks with autism have narrow and deep hobbies and interests that may even border on obsession. This could include comic books, WWF wrestling, anime, art, etc. 

It's important to note that the autism spectrum is quite broad. On the more severe end, individuals can present with significant intellectual impairment to the point of being non-verbal and needing round-the-clock caregiving. On the other end, some individuals may not get diagnosed until adulthood with full ability to function independently and often excelling in various areas. These would be the folks formerly diagnosed with Asperger's.

Now let's look at some of the nuanced differences of male and female presentation. We use the same criteria for both sexes. Like most mental health disorders, diagnosis is based on observation, so there's more room for bias. One of the most extensive studies on sex differences concluded some fascinating findings. Autistic females diagnosed with lower functioning and intellectual impairment tended to have more severe symptoms than their male counterparts. These included increased difficulties in social relationships, emotional regulation (another common symptom of autism), and overall difficulties in day-to-day functioning. However, on the less severe end of the spectrum, women's symptoms often go unnoticed, potentially due to their ability to mask. 

The term masking or camouflaging refers to one's attempt to fit in socially that does not come naturally. You are essentially acting or mimicking based on what you observe in others. This may be due to socialization, as women are expected to be more relational and pressured to socially conform. It's thought that females' fixed interests tend to be more culturally appropriate, like fashion, music, or animals, that would not appear too far out of the ordinary. 

Perhaps you've seen the reality show "Love on the Spectrum" on Netflix, which I highly recommend. One of the autistic individuals they followed was about my age, in his 30s or so, and was obsessed with dinosaurs. As cool as dinosaurs are, this tends to stick out a bit more. Another interesting finding was that many women with autism, despite the conventional belief, have a strong desire to form close relationships and bonds. Yet, despite this, they often struggle to maintain these relationships long-term and navigate conflicts. 

Now let's talk about prevalence rates. For decades, it has been believed that the number one protective factor against developing autism is being female, known as "the female protective effect." There are theories and research studies on various explanations that provide evidence of this phenomenon. These theories include testosterone levels in utero, prevalence among siblings, and resilience to genetic mutations, among others. However, these theories are still disputed among researchers. Frankly, these topics are too far above my paygrade to have an opinion one way or the other. 

There exist many prevalence studies comparing sex differences in autism diagnoses. Most articles I found aggregating the data put the prevalence rates of males vs. females somewhere around 4:1 or 5:1. That's a pretty big difference even compared to its neurodevelopmental disorder cousin, ADHD, at about a 2:1 or 3:1 ratio. These kinds of sex differences often make people upset. They question the validity of the findings, some of which may come from emotion and a desire for equality. Nevertheless, the latest research largely backs the narrative that bias exists and females with autism are underdiagnosed. 

According to that extensive study on sex difference referenced above, when you look at the prevalence of women with severe autism, the rate drops closer to 2:1. However, on the other end of the spectrum, of the higher functioning autism, it can be as high as 8:1. Because of the masking behaviors, women often do not get diagnosed until later in life. Perhaps due to a clinician bias, women must present more severe to get noticed and diagnosed. Hence, the findings above that women tend to have more pronounced symptoms on the lower functioning end of the spectrum. 

What is apparent in the research is that due to decades of bias, women do not get diagnosed at the rate they should. This is seldomly disputed. But is it possible that the rates are even among the sexes, and the female protective factor is a myth? For the other neurodivergents with ADHD, where women are also underdiagnosed, I think there is more possibility that the rates are even at the 3:1 ratio. Yet, with autism, at its approximate 5:1 ratio, that's a lot of ground to cover. 

With severe autism, it can be hard to miss, but it's much easier to overlook those who are higher functioning. My hunch that there remains a female protective effect is merely an educated guess. Researchers indicate a strong need for more studies to fully reverse the conventional view. 

Either way, I feel that we should make an attempt to take the emotion out of it. Let's see where the research leads instead of forming fixed narratives prematurely. If there are prevalence disparities between the sexes within disorders, I believe that's okay. For example, you see the opposite phenomenon with borderline personality disorder, diagnosed far more in women and overlooked in men.
Nevertheless, I'd like to see us be more objective and find out why there are discrepancies if they exist. We need to help those whose autism is overlooked and not divert bias in the other direction. At the end of the day, we certainly need to get better at identifying autism in women so they can get the services they need to live their best lives. 

        I hope you enjoyed this blog. Please like, subscribe, and share, and I look forward to seeing your comments, even if they are critical. 

-ETC

Resource list:

Spectrum News: The Female Protective Factor Explained - Resources for females with Autism - The Female Autism Phenotype and Camouflaging: a Narrative Review - Behavioral and Cognitive Characteristics of Females and Males With Autism  - A Qualitative Exploration of the Female Experience of Autism Spectrum Disorder (ASD)