Episode 2: Masking & Autism
This is the transcript of the episode. To listen to the episode please click on your preferred podcast button.
No AI is used at any point in this podcast.
Unless otherwise specified, the research I have done for this and all episodes do not include those with intellectual challenges in conjunction with autism characteristics. While I will describe autistic characteristics in this episode, I also recognise that every autistic person will experience autism differently, and these are not specific to every person who identifies as autistic.
Suicide comes up in the research here, so if you don’t want to hear about that right now, please wait until the next episode comes out, and mind yourself in the best way that suits you.
What is masking?
Masking, or camouflaging, is a characteristic of autism, and is highly prevalent in autistic women and girls. It means to purposefully, or subconsciously, display behaviour that is thought to be neurotypical in order to conceal the autistic person’s authentic behaviour. This is typically used by autistics to assimilate with the neurotypical society around them, with family and friends, strangers, and in adulthood within the workplace. Two terms that come up a lot in autism masking research are executive function and theory of mind. Belsky (2023) writes, “executive function…refers to a set of mental skills that include working memory, flexible thinking, and self-control. We use these skills every day to learn, work, and manage daily life. Trouble with executive function can make it hard to focus, follow directions, and handle emotions, among other things” (para 1). Belcher (2022) follows this up with the comment that “[executive function] supports an efficient Theory of Mind (ToM; the ability to infer other people’s thoughts, beliefs and feelings)…and ToM is likely to aid camouflaging by making it easier to judge how one is perceived by others...Several studies have observed that autistic females exhibit better EF than autistic males” (p. 3414). An example of masking might be to try to ignore sounds that are irritating or even unbearable in order to not ‘make a scene’, or cause any attention drawn to them. The behaviour that the autistic person believes to be neurotypical may not be as successful as they think, and this depends on the person’s skilfulness in mimicry – it’s no accident that many autistic people are excellent actors and writers, creative jobs that require being able to slip into character. This act of camouflaging their real feelings, or ignoring sensory needs to ‘fit in’, has an extremely high emotional consequence. Over time, the need to manage the discomfort of exterior sounds, smells, and any sensory input, can lead to burnout or a ‘meltdown’. In this case the autistic person cannot function at all until their ability to manage discomfort has once again ‘recharged’. The language surrounding this state of being is mechanical, using words like meltdown, recharge, etc., reinforcing stereotypes about autistic people behaving like machines, or robots, without emotions or empathy. In reality, it is the emotional overload of feeling obliged within an unaccommodating society to mask constantly that leads to the shutdown or ‘meltdown’ itself.
A way to relieve feelings of pressure that come from masking is to ‘stim’, or perform a repetitive behaviour, that can be obvious and eye-catching, or invisible and unobservable, even to the individual themselves. An example might be the use of toys that give sensory pleasure, squeezing a ball, or nail biting. A very obvious autistic stim is rocking or head-banging and may be more often found in autistic people with high support needs. As these stims are very noticeable they have become a stereotypical benchmark for what is believed by Western society to constitute autistic behaviour in men and women across the board. If someone does not present their characteristics of autism like this then it is possible they will not be believed when they say they experience autistic meltdowns. A meltdown can be physical and involve violence against themselves, or as simple as being afraid to leave the house, or not being able to eat particular food.
How has the research about masking and stimming contributed to scholarship about autism in females?
Historically, autism research was focused on autistic people with a learning disability who generally had behavioural characteristics that were very different from neurotypical society, as described in research by Hull and others (2019). As time went on and autism was viewed as a circular rather than linear spectrum of characteristics, it became clear that autistic people without learning disabilities often managed social lives by masking their autistic behaviours in order to bond with people, something that is much harder to do when behaving according to their sensory needs. According to Hull and others (2019) “the concept of social camouflaging was first investigated through qualitative research with autistic girls and women, looking in particular at reasons why these individuals may not be diagnosed until later in life” (p. 820). Some recurring and subtle masking techniques include looking between someone’s eyes rather than into them directly, copying and mimicking others’ behaviour to better fit into a social situation, and memorising conversation topics in advance (ibid). We also know from this research that there is a huge burden placed upon autistic women who feel forced to mask in order to socialise ‘correctly’ and experience increased stress and depression. They may also become so effective at masking it can be difficult to obtain help for the stress from healthcare providers who know too little about masking in women to recognise a genuine need for help. The research has found that it is possible that the ability some women have to mask extremely effectively is preventing them from being afforded an autism confirmation (ibid). Boys and men are more likely to be confirmed autistic than girls and women, and the UK National Autistic Society reports that the most up to date estimate of male to female ratio is 3:1, for every three males confirmed, one female is also confirmed autistic. This finding has given rise to the idea that autism is gendered, and that more males are autistic than females. If we think of that 3:1 ratio, imagine for a moment that gender has no bearing on whether someone is born autistic and males and females have the same amount of autistic representation in each gender, then that means for every 1 woman confirmed, there are 2 females left unconfirmed. Already this hypothesis is flawed as one must talk about autism within a gender binary to accept it. I’ll explain what I mean by a non-gendered analysis of autism in the population in a moment, but there is something called the female phenotype theory that says women may have a protective factor against being autistic. Please also note that in this particular article no mention is made of people who are non-binary or Trans, indeed, it is rare to find anyone included in autism research outside the gender binary or who identify as non-cis. It is vitally important that doctors understand the nuances of neurodivergence when it comes to its presentation in women, non-binary and Trans people. In the next episode on menopause and menstruation I’ll show you an even more surprising ratio of autistic confirmation between males and females, but you’ll have to wait for that until next time.
Let’s talk about gender presentation and the Female Phenotype Theory. Belcher and others (2022) outline it in this way:
“Regardless of whether there are genetic factors that reduce susceptibility to autism in females…it has been suggested that many autistic women experience delays in diagnosis because they show a phenotype of the condition with fewer overt autistic characteristics (the Female Phenotype Theory [FPT]…For example, autistic females have been found in some studies to have a greater interest in social relationships than autistic males…less obvious restrictive interests…and a tendency for distress to manifest as internalising disorders (e.g., depression, anxiety, and eating disorders) rather than externalising ones (p. 3413).”
My question is this, how would a person go about deciding whether that list of supposedly ‘female’ characteristics are because they are innate and present in most women, perhaps genetically, who knows, or would it be more reasonable to think that from the moment a little girl is born they are taught by society how to behave? Also, if a female phenotype for autism exists then why do women report a higher level of camouflaging than men in numerous studies? (McQuaid et al., 2022) The research shows that women appear to feel a greater need than men to comply socially to their environment, I argue that is so for practical reasons and autistic women have recognised this fact, so then how is it possible women are inherently more sociable than men? Women have been drilled since birth to be this way, so autistic girls and women may have to work a lot harder than boys and men to fit in. If a little boy throws a toy across a room because it’s distressing them I think most parents or adults generally would chalk it up to ‘boys being boys’ – I hate this term but it persists in being an accurate signpost for how traditional masculinity is viewed. The typecast behaviour of girls and women and boys and men have caused medical professionals (the only people who can give someone a neurodivergent confirmation) to confuse the difference between social and autistic behaviour in girls and women. Until recently the psychiatric profession was male dominated (Belcher et al., 2022) and being subject to social norms as any other human being, those men probably didn’t notice the difference either. If a little girl throws a toy she’s externalising her anger or frustration and is singled out for bad behaviour against all the other quiet little girls. I think it’s obvious where I stand here, but let’s stick with the research. For researchers to state that a female phenotype is based on inherent behavioural characteristics in men and women is to adhere to a sex and gender binary that is too narrow to apply to human neurodiversity, and proved wrong by anyone who doesn’t subscribe to the social rules of gender or sex put upon them, and anyone who is intersex and/or have chromosomal differences that mean the binary doesn’t apply to them. McQuaid et al. (2022) mention that gender diverse autistic people also score highly for camouflaging, and that this is an area worthy of research. It seems very possible that the media-fuelled frenzy about gender diversity today would contribute to feelings of fear of being different, for neurotypicals as well as neurodivergent people, and a desire to mimic behaviour that would hide those differences (ibid).
While I can hate-laugh about the differences between how men and women are treated in society, it’s definitely worth remembering that this misogynistic patriarchal framework is what has led to women being dismissed by doctors without being recommended for assessment, and the devastating truth is that without supports some women end their lives rather than continue to live in a state of such distress. The Autistica charity reports that autistic people make up around 1% of the UK population, and yet they represent 11% of suicides (Autistica, 2023). Autistic women are more likely than autistic men to end their lives (McQuaid et al., 2022) due to being under so much psychological pressure of trying to be someone they are not. I have included details of suicide supports in the show notes for anyone who wants to know more.
What happens if an autistic person who is a man or woman of colour, or are part of a minority group, begins to display so-called antisocial behaviour?
If the pressure of masking or of unmet sensory needs becomes too much and they behave in a way that is seen as inappropriate by those around them, how much worse will the situation become from not being white? Steinbrenner and others (2022) in their research on representation of ethnic and racial minority groups in autism research found that those groups were far less represented than white participants. They examined research published between 1990-2017, and found that while inclusion of minority groups was gradually increasing over time, overall only 9.4% were Latino/Hispanic, 7.7% were Black, and 6.4% were Asian. Autism activists and advocates claim that autistic people of colour are targeted by the criminal justice system at a higher rate than other races and ethnicities. If people of colour and people from minority races and ethnicities are under-researched, it is possible that a lack of knowledge exists that has not breached the gap into awareness of cultural differences that may mean sensitivities to those differences can become legal matters. We live in a racialised society where people can be stereotyped according to a person’s skin colour, language, ways of dressing, behaviour, and more. If an autistic characteristic such as a meltdown in public by a person of colour, who is assumed by others to be of a particular kind of race or ethnicity, and is seen as threatening or violent by the majority society then the cultural stereotype can override their needs as an autistic person and can mean violent police reactions or incarceration for that person. I’m going to talk at length about autism and intersectionality in an upcoming episode, but it is worth mentioning at this point that public stimming or public meltdowns can become very problematic for minority groups and sometimes dangerous for their welfare.
Is there another way of looking at masking, is there a positive aspect to it?
Research on menopausal autistic women by Karavidas and de Visser, (2021) found that some women enjoyed masking because they were so good at it, but that around the time of menopause they began to question who they really were ‘under the mask’ as it were, leading to the idea that perhaps masking techniques were so effective that their sense of self had become lost after many years of being so successful at it. The researchers Moseley et al. (2020) found that menopause lifted the veil on how autistic women had been struggling in their lives with a term called ‘alexithymia’. Alexithymia is characterised as a struggle to recognise and describe internal states of being; a person with alexithymia may not associate a feeling of discomfort with a particular emotion, knowing that they feel discomfort but not why or how to relieve it. These feelings and their reactions to them are masked or camouflaged. But it is interesting that the menopausal participant in Karavidas and de Visser’s study (2021) found that she began to question why she was masking once she became aware of it. It wasn’t her autism confirmation that gave her a sense of identity, but the menopause experience itself that increased her sense of self. Put another way, by masking her whole life until that point she was then being forced to address her needs by the menopause experience. I’m going to talk about autism and menopause in the next episode and it’s going to be a long one as it’s my particular area of interest.
The performance of identity in autistic women.
The nature of masking as a tool to fit into society is so related to identity and sense of self that I think it’s important to briefly explore the concept of identity in autistic women. When it comes to gender identity one of the strongest voices is from Judith Butler who wrote about ‘doing gender’, that it is constructed through performative action (Butler, 1990). She said that gender is a set of repeated acts, a roleplay, to reinforce the impression of being either a man or a woman. The acts of this gender performance are subtle and policed by society, culture, family, friends, etc., all those groups who are outside of ourselves. She said that ‘men and women are political categories and not neutral facts’, and people are rewarded or punished in daily life depending on how successfully they perform those two categories of gender. Butler wrote in 1988, “performing one’s gender wrong initiates a set of punishments both obvious and indirect, and performing it well provides the reassurance that there is an essentialism of gender after all” (Butler, 1988, p. 528). Butler wasn’t specifically talking about neurodivergence here at all, but I think what she says applies to the concept of autistic camouflaging. Just as gender is a performance to Butler, the importance of acting appropriately reflects how neurodivergent people feel more accepted by performing their identity in an acceptable way. The policing of behaviour that Butler is talking about can be applied to an autistic person going for an interview and wanting to make a good impression, or the denial of their true feelings in a situation that challenges their sensory boundaries, like suppressing the desire to stim, to make others feel comfortable around them. But it is possible to see how this would erode a sense of self through repeatedly changing one’s behaviour to fit in or alleviate a socially awkward situation. Linda Martín Alcoff (2006) who wrote Visible Identities found that how we look at each other and the world around us informs how we get on in the world and how we treat one another. Identity, for Alcoff, is a habit of perception, a balancing act between performance and narrative: for example, an autistic person might be aware that they need to perform a certain way in a group of people, such as not dominating the conversation, but it depends on the narrative, as the group might be talking about their special interest. Their identity performance will change therefore depending on the social situation, and each time they meet with people they will have to judge what rules they have learned are appropriate or not. I imagine having a mental drop-down menu where you can select ‘group interaction’, then ‘friends or colleagues’, then ‘work chat or lunch break chat’, then follow the menu through to the end of each setting. Every scenario might be different and learning which is correct is an active performance by autistic people.
Thank you for listening. Join me next episode where I will talk about autism and menstruation and menopause research. The research I have used in this episode can be found cited in the show notes. I am Alexa and this has been The Neurogender podcast.
Special thanks to the Ballyfermot Library Creative Studio where I record all my podcasts.
Show Notes:
Suicide awareness:
Samaritans Ireland and UK – 116 123
Papyrus (people under 35) – 0800 068 4141
Autistica suicide help page - https://www.autistica.org.uk/what-is-autism/signs-and-symptoms/suicide-and-autism
Alcoff, L. M. (2006) Visible Identities: Race, Gender, and the Self Studies in Feminist Philosophy New York: Oxford University Press.
Autistica (2023) Suicide and Autism. Available at: https://www.autistica.org.uk/what-is-autism/signs-and-symptoms/suicide-and-autism.
Belcher, H. L. et al. (2022) 'Camouflaging Intent, First Impressions, and Age of ASC Diagnosis in Autistic Men and Women', J Autism Dev Disord, 52(8), pp. 3413-3426.
Belsky, G. (2023) What is executive function? Available at: https://www.understood.org/articles/what-is-executive-function
Butler, J. (1988). Performative Acts and Gender Constitution: An Essay in Phenomenology and Feminist Theory. Theatre Journal, 40(4), 519–531.
Butler, J. (1990) Gender trouble: feminism and the subversion of identity. London;New York;: Routledge.
Garland-Thompson, R. (2011). Misfits: A Feminist Materialist Disability Concept. Hypatia, 26(3), 591–609.
Hull, L. et al. (2019) 'Development and Validation of the Camouflaging Autistic Traits Questionnaire (CAT-Q)', J Autism Dev Disord, 49(3), pp. 819-833.
Karavidas, M. and de Visser, R. O. (2021) '"It's Not Just in My Head, and It's Not Just Irrelevant": Autistic Negotiations of Menopausal Transitions', J Autism Dev Disord, 52(3), pp. 1143-1155.
McQuaid, G. A., Lee, N. R. and Wallace, G. L. (2022) 'Camouflaging in autism spectrum disorder: Examining the roles of sex, gender identity, and diagnostic timing', Autism, 26(2), pp. 552-559.
Moseley, R. L. D., Tanya; Turnery-Cobb, Julie M.; (2020) '‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause', Autism, 24(6), pp. 1423-1437.
Steinbrenner, J. R. et al. (2022) 'Patterns in reporting and participant inclusion related to race and ethnicity in autism intervention literature: Data from a large-scale systematic review of evidence-based practices', Autism : the international journal of research and practice, 26(8), pp. 2026-2040.