Linh Nguyen

Gender-biased research

Can women be autistic?

Two weeks into my research and I'm falling down a rabbit hole. Admittedly, before diving into this project, I have little to no knowledge about autism.  Then with the amount of bombarded information I have subjected myself to, for pure entertainment purposes, of course, this question tickles the back of my mind. I was seeing an immense incongruence in the reported ratio of autistic male in comparison to female. Numbers going between 10:1 to 4:1 (male to female) have left my mind disoriented. What is going on?

Vergroot

Binoculars that impact your vision - by Asefeh Tayebani Een mentale handicap is  niet zichtbaar. Dat maakt het moeilijk om uit te leggen hoe het is om een mentale handicap te hebben.   En dat terwijl het juist voor mensen met een neurologische aandoening ontzettend belangrijk is dat ze hun – soms net wat afwijkende – behoeften kunnen communiceren. Asefeh Tayebani, zelf gediagnostiseerd met autisme, creëerde drie voorwerpen die het publiek in staat stellen om te ervaren hoe het is om autistisch te zijn. Een kijkje door een speciale verrekijker of het… Wisam Ali Mohammad, Asefeh Tayebani

Let’s begin! 

To answer the question: for the longest time, the answer was no. We have Hans Asperger to thank for this. The trailblazer has graced us with his definition of the autistic brain, calling it the “extreme variant of male intelligence”. He goes on to state that “even within the normal variation, we find typical sex differences in intelligence.” Clearly, females are not intelligent enough to have the autistic brain. 

Then comes Simon Baron-Cohen with the extreme male brain theory in 2002. The extreme male brain theory can be broken down into two components: males are significantly better than females at systemizing; autistic people are hyper-systemizers. Hence, the autistic brain is the extreme variant of the male brain. 

Now, I am not here to criticize what Baron-Cohen wrote 19 years ago. That would just be counterintuitive, and not the direction that I want to take this blog. Recently, he proposed to change the name of the theory to Empathising-Systemizing (E-S) theory. While there are certain parts of this that I still find questionable, I commence this change. 

However, it is important for us to address why such gender-biased research is problematic. Fundamentally, our understanding of autism is flawed in itself. We rely so much on this information as the basis for our knowledge of autism, subsequently, we continue to exacerbate this gender difference and set a limitation to our knowledge. 

I would argue that the gender-biased research is a misfortune that has led to the lack of understanding of how autism manifests in females, thus leading to the severe underdiagnosis and misdiagnosis of autistic females; a loophole that desperately needs to be fixed. 

The lag experienced in the research community is an important factor that we need to address when talking about this topic. The ratio of autistic male to female has fluctuated dramatically since the days of Hans Asperger to our current understanding. Hans Asperger (who upon some reinvestigation of his theory) admitted that the ratio of autism is 10 males to 1 female. Current research is situated at 4 males to 1 female. This demonstrates an attempt to understand how autism manifests in females, and correct this gender-biased research. But, there is still a long way for the research community to go. 

Why is our understanding of autistic females so limited? 

Most importantly, we can accredit our limitation to the fact that the majority of the research done on autism relies on a large male sample. This generates a phenomenon called sample bias, which occurs when a specific group of the population is systematically more likely to be selected as a sample than others. In this case, the male sample is systematically more likely to be selected than their female counterpart. Hence, this limits the generality to the autistic population. Due to the sample bias, most of what researchers know about autism is based on how autism is displayed in males. 

Subsequently, the criteria used to assess whether an individual is autistic (such as the Gold-Standard Diagnostics Measures) are gender-biased as well. A series of semi-structured interviews conducted by Bargelia, Steward & Mandy (2016) to document the experiences of late-diagnosed autistic females demonstrate that the female autism phenotype is incongruent with our current conceptualization of autism.  In comparison to their male counterpart, autistic females demonstrate higher social motivation along with a greater capacity to form traditional friendships. This is something that has come to be known as the theory of camouflage. In simple terms, autistic females are good at masking socio-communicative impairments. This is due to three identified reasons. Firstly, the existing gendered expectations for social behavior, expect girls to be more sociable than boys. Secondly, autistic females experience increased sensitivity to social pressure to fit in. Lastly, they have, to a certain degree, strengths in some social-communication skills. 

In addition, autistic females are more vulnerable to internalising problems (which can manifest in forms of anxiety, depression, and eating disorders), and are less likely to display externalising behaviour (including hyperactivity, impulsivity, problems with conduct). Because the female autism phenotype is divergent from our conceptualization of autism, they consistently score lower on the measures of autism. Sadly, in order for females to get diagnosed as autistic, they require a stronger manifestation of the stereotypical autistic traits, indicating that they are more severely affected in the real-world environment than their male counterparts.  

Moving forward

Enough with me being critical, let’s end on a hopeful note. We are now witnessing more research into autism in females. This demonstrates a positive attempt at correcting this gender-bias. Learning that the female autism phenotype is different than their male counterparts can serve as the foundation for fundamental changes in our current diagnostic measures for autism. I hope to see changes coming soon.