I want to start sharing more about my research of autism (that I started before my diagnosis and wish to continue it now). For now, my idea is to shortly summarise this articles and possibly add a bit of my commentary because, well, it’s me. Hope you enjoy it and learn something from it!
Today, we are diving into The Female Autism Phenotype and Camouflaging: a Narrative Review by Laura Hull, K. V. Petrides, and William Mandy. All quotations are from this article.
The review “explores evidence for female-typical autism presentation, the Female Autism Phenotype (FAP) and the component of camouflaging (compensating for and masking autistic characteristics) in particular.” Meaning, it addresses: 1) possible reasons for the big difference in autism diagnosis between boys and girls; 2) possible differences in the way autism presents itself in boys and girls; and 3) the effect of camouflaging autistic traits.
You can jump to the parts here:
Autism is in more commonly diagnosed in males than females across age groups.
As there are no biometrical markers for it and the diagnosis is based on the individual’s behaviour, the diagnosis of children depends on observation and description of that behaviour by adults in the child’s life, and in adulthood a self-assessment and report are added. The improved diagnosis criteria in recent years is linked to an increase in number of diagnosed autistic people.
There have been many studies on the experiences of adults who seek autism diagnosis, especially women, but more on that later on.
There are two main theories for the reasons why there are seemingly fewer autistic females than males. One of them is the “female protective effect” theory or the FPE theory. It proposes that “there is something inherent in being female that ‘protects’ females from the likelihood of developing autism.” Basically, it claims that the environmental and genetic factors need to be stronger/more severe for females to exhibit the same “degree of autistic characteristics” as their male counterparts.
This theory is highly problematic as it assumes a lot of theses that are proving to be incorrect. Firstly, it assumes that the current estimates of male and female diagnostic rates are accurate. Meaning, it assumes that there are in fact 4 times as many male autistics as female ones. Next, it assumes the diagnostic criteria to be completely accurate and basically without flaw. It assumes that all children are being 100% themselves all the time. And so on.
This theory does not take into account the difference between raising males and females and the different social roles they are expected to play. (Meaning, the pressure to be “normal” and behave in a certain way is much bigger on young females than males; and their autistic traits might present themselves differently.)
But the biggest flaw with this theory – and the majority of approaches to autism so far, is that the “severity” of autism and its characteristics is measured based on how inconvenient the person is to other people. Autism is not considered a condition in itself as it should be, it is not considered a different way of the brain functioning, but is rather “measured” in the levels of how noticeable and disturbing it is to allistic people.
So from my perspective, the FPE theory seems to be based on stereotypes about autism and gender roles, and is thus severely outdated.
Female Autism Phenotype
Along with “substantial evidence suggesting that diagnostic processes are less likely to identify females, particularly those without intellectual disabilities” and the issue that “behavioural markers used as diagnostic criteria are established on pre-existing conceptions of what autistic behaviours look like”, there is another theory for the low numbers of female autism diagnosis. It proposes that “females may be more likely to develop autism than we currently estimate, but that diagnostic biases and variation in the way autism is expressed in females mean we do not pick up autism in females to the same degree as males.”
The idea here is that the behavioural expression of autism in females (or female autism phenotype – FAP) represents similar traits and characteristic as those that are currently in diagnostic criteria, but they are expressed in a different way. Furthermore, there might be additional traits that females express that are not as strongly expressed in male autistics.
One of the key elements to researching female autism phenotype is to stop comparing the behaviour and experiences of autistic females to those of autistic males and instead focus on comparing them to those of non-autistic females. Meaning, it is crucial to take into account the position of young and adult females and males in our society by itself, and consider how this affects autistic people as well.
Additionally, it is important to consider that males and females in general might have different interests. “Studies have found that autistic males’ interests tend to be focused on more mechanical topics such as vehicles, computers, or physics. /…/ On the other hand, autistic females’ interests appear to focus more on topics with relational purposes, such as animals, fictional characters, or psychology. /…/ While the intensity of the interest itself may be atypical for both genders, the type of interest may be considered more age and gender appropriate for females than males, and so may not be reported as unusual by parents, teachers, or clinicians.”
Another difference that seems to appear between male and female autism phenotype is in their expression of emotional difficulties. “Autistic males are significantly more likely to have co-occurring externalising disorders such as behavioural problems and inattention,” which is why their needs may “come to teachers’ attention sooner and be seen as more intrusive”. Females, on the other hand, are prone to internalising problems, including anxiety, depression, self-harming, and eating disorders.
It is important to know this because these conditions can mask the underlying autistic characteristics. Meaning, the autistic female might receive a diagnosis only for the co-occurring condition and autism will remain undiagnosed. (Like myself, for example.)
Camouflaging is a big and important aspect of female autism phenotype that has only recently been given more attention and research. Camouflaging refers to the use of strategies to minimise the appearance of autistic traits. These strategies can be conscious or unconscious and they can be learned or implicitly developed. It is a combination of masking, compensation, and assimilation techniques that may include suppressing autistic stims, natural reactions, mimicking other people’s facial expressions, forcible eye-contact, copying expressions and vocal intonations from TV shows and movies, etc.
The earliest mentions of this kind of “learned” behaviour go back to 1981 when Lorna Wing hypothesised that some autistic girls might be missed in clinical assessments due to their ability to learn social rules. She also described case studies of autistic individuals using strategies to learn rules or social behaviours from television shows or books, and how these strategies might make diagnosis harder.
Since then, some studies have been done on autistic girls’ behaviour and their camouflaging abilities. They found that already girls in kindergarten use certain strategies to avoid standing out. It is extremely important to note that these strategies are meant to give the illusion that the autistic girls in question are doing fine and socialising well and does not by any means indicate that they are in fact socialising well.
Furthermore, autistic people do not camouflage equally all the time. Studies have found that autistic females show different behaviour in different environments which accounts for the differences in their outward-showing autistic traits.
The research so far has revealed some motivations and consequences of camouflaging. Namely, motivations for camouflaging include “the desire to fit in with others, to avoid bullying or other negative treatment; and wanting to form connections which the autistic person felt was not possible when they presented as their authentic self.” Furthermore, “consequences of camouflaging included physical and emotional exhaustion, often requiring time alone to recover, issues around identity and authenticity /…/ and difficulty accessing support and diagnosis.” Which is proving to be the case for many autistic females.
Research into Camouflaging
But it is not only autistic females that camouflage and there is a lot more research to be done on the different manifestations and expressions of autism in females as opposed to males. The next part of the article focuses on research into camouflaging in general (so for both).
There have been two types of research that focuses on autistic camouflaging. One would be the discrepancy approach, which seeks to measure the camouflaging of external presentation of autism. Meaning, it focuses on what other people can see and thus doesn’t take into account “failed” attempts at camouflaging. The other one is observational/reflective approach, which focuses on the direct identification of camouflaging behaviours by autistic people themselves and those around them. Meaning, it is based more on self-assessment and reflection.
I myself can see the reasons for both and each of these have their strengths and their flaws. But as an autistic person who has mastered the art of camouflaging and is now completely exhausted at 30, I am in favour of the second one. Autistic people should be listened to and we have the right to talk about ourselves and our own experiences with our own voices. Basically, we deserve to be heard as we are and not only as how much of an inconvenience and nuisance we are to other people.
Given what I know about camouflaging and what we have learned so far, it is no surprise that
“preliminary research into camouflaging suggests that it is associated with poor mental health outcomes, including anxiety, depression, and suicidal thoughts.”
So what now?
The article, in accordance with academic article form, gives some suggestions on further research at the end, which is meant for other scientists in autism research. But I am more interested in what I (and you) can take from it.
Basically, it makes me happy that (at last) there is some progress in research of autistic females and that it is finally being noticed what many women have been saying for a long time – that the symptoms and diagnosis for autism (and other neurological disorders) are focused on autistic males and what we have known about their behaviour. Much like many other areas, the scientific field of autism research needs to be reminded that females are not “second class males” or “weird males” or “lesser version of males” but we are in fact our own class of people and need to be treated as such.
That includes biological and physical traits as well as developmental and behavioural characteristics. Furthermore, the fact that girls and boys are raised and treated differently – in private and institutional environments – should be taken into account. Above all, autistic people should be listened to and not described only in relation to allistic people.
So if you take anything away from this post, is the awareness of the great importance of letting autistic people express themselves. The pressure to camouflage autistic traits can be extremely harmful. And, most importantly, listen to us. Listen to autistic people. Listen.
Anyway, I wanted to share this little synopsis of the review so that you can be educated and get some information without having to read the full article 🙂 Plus, I added my own opinion because… It’s me, duh.
If you want to check out the article or see the studies it cites and refers to, you can find it here.
So, I hope you enjoyed it, maybe learned something new, and hopefully got some food for thought. Be sure to check out this website in the future as well because I intend to share more. And if you have any questions or requests on what to do posts about, I would love to hear it, so let me know!