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Shame and Autism as a Feminist Issue: The Effects of Underdiagnosing Autism in Women/AFABs   

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By Cristina Cabrera-Ayers (they/them)

 

Autism among AFABs/women  

The rate at which women and AFAB (Assigned Female at Birth; transmen, non-binary people, etc.) people are diagnosed with autism is much lower than that of men and AMAB (Assigned Male at Birth) people. The Australian Institute of Wellness and Health says that men are four times more likely to have autism than women, which, in my (autistic) opinion, is both a misrepresentation of the data and a perpetuation of the misogyny that led to this conclusion in the first place. What AIWH’s website should say is that men are four times more likely to be diagnosed with autism than women. It may indeed be that men/AMABs are more likely to have autism than AFABs/women, but that is not why the statistics are presently skewed. What has been proved about autism is right there in the erroneous statistics; autism is easier to notice in AMABs than in AFABS.   

Understanding why requires an exploration into the way societies have almost universally raised AFAB children under pressure to minimise their presence and appease in conflict situations. This means AFAB children are not as empowered to explicitly express discomfort in the way that AMABs are, meaning many more AFAB children will internalise or ignore their discomfort, and thus conceal some of the symptoms of autism.   

It is important to remember, here, that gendered behaviours are not natural; they are carefully taught by reinforcement and penalties, along with other aspects of gender roles. Pink is a “girls’ colour” because AFAB children are told as such from a young age, not because we have natural, biological cravings to cover ourselves in the stuff.   

AMAB children are permitted to be more assertive and occupy more space. They are taught to be more active in their play and socialisation; for example, today, team-sports are still often associated first with boys and men. The empowerment of AMAB children to be more active and engaged with their social environments, also empowers them to be more disruptive when they are upset. AMAB children are not taught to feel shame for deviating from the norm to the same degree as AFABs, and so may not try as hard to disguise autistic behaviours. This is why there are historically higher rates of AMAB diagnoses. The criteria to be diagnosed for autism has moved further away from its initial focus upon limited verbality, cognitive impairments, and social rejection, but it is still largely preoccupied with masculine styles of interaction. Therefore, many people remain unaware of what, exactly, AFAB autism looks like, or that its manifestation differs at all from AMAB presentations.  

  

The misogynistic construction of autism  

So, let’s break that down in a more accessible way. Firstly, let’s discuss what I mean when I say ‘autism’. Autism is a neurological condition that exists within a spectrum, which is why its full name is ‘Autism Spectrum Disorder’, or ASD. This means that the symptoms of autism are spread out upon a spectrum, and a circular one at that, so more like the colour wheel than, say, the visible light spectrum. 

Autistic people will have symptoms all over that spectrum: for example, one person may have difficulty with what is called ‘useful verbal communication’, where they are able to absorb verbal information and rearrange language to communicate their needs. Another may be able to talk the back-end off a donkey, but have trouble reading verbal/body social cues, or have increased sensitivity of the senses, which prevents them from eating certain types of foods or being exposed to certain situations. However, this is a more nuanced understanding of autism, which has only recently been accepted in mainstream medical circles. The diagnostic criteria, or the symptoms one needed to demonstrate to be diagnosed with autism, used to be much more rigid and focused on some of the most severe examples of symptoms.   

In the past, to be diagnosed, an individual needed to have a significant cognitive impairment that usually limited their independence in a big way, or social difficulties that would have the same effect. It is easy to guess why this might have been; things that encourage dependence are going to be noticed by the individual’s parent. The recognition of autism as an individual diagnosis arose during various points of the 20th century; the term itself was invented to describe symptoms of a schizoid-spectrum experience, whereby people with schizoid symptoms would retreat into self-generated worlds to avoid external stressors. This term was applied in three separate contexts; first was by Moscow doctor Grunya Sukareva in 1924, then almost simultaneously by Austro-Jewish doctor Leo Kanner and by Third Reich doctor Hans Asperger in 1943. The thread common among these studies? Each group worked exclusively with AMAB children.    

Whether or not every single subject was cisgender (unlikely, given how numerous we transfolk are), given the time and the selection of Western and Christianised cultures these doctors worked within, these AMAB children would have been raised as if they were cisgender boys. Therefore, the style of self-expression and tools for managing discomfort provided, would have been masculinalised.   

  

What does autism in AFABs/women look like?  

So, we have established that men/AMABs are treated as the default within autism, which has led to lower rates of diagnosis among AFABs. One of the major reasons for this is because AFAB autistics are more likely to do something called ‘camouflaging’, where the individual purposefully disguises autistics behaviours. This can involve ignoring their comfort zones, for example, by forcing themselves to make eye-contact or into sensory situations that are actively distressing, with the aim of appearing ‘normal’, or like their peers. Several studies interviewing AFAB autistics have noted that social rules are often learned by copying from those around them, including body and facial gestures, and from the media they consume. Learning by mimicry is called a ‘compensation strategy’, and are often used so much by autistic AFABs, that they have a harder time getting diagnosed by doctors, who see them mimicking non-autistic social behaviours.   

Within AFAB autistics, there is also a higher level of ‘social motivation’ to find an accepting peer group, as AFABs are conditioned to engage in more group-play and socialising than AMABs. The expectation of social isolation, as it was observed in AMAB autistics, is another factor in why AFABs are not diagnosed as often; many autistic AFABs have peer groups and friends.  

So why is it important that AFAB autism is recognised and diagnosed at a greater rate than it currently is? If AFAB folks are using compensation strategies and camouflaging their autistic behaviours, aren’t they just self-managing the way that intervention programs would teach them to? Wouldn’t an autistic diagnosis just induce feelings of shame and ostracisation?   

Not quite. The thing about neurological conditions is they are invisible disabilities; perhaps not immediately obvious to the outside observer, but the person with the condition is very much aware of it. I, myself, have four invisible conditions; I consider three of them to be disabilities and the fourth, autism, to be more like a different lens through which I view the world, just because of the way mine happens to manifest. I don’t contest that it has made my life a bit harder, but I do think the way to solve that is by changing the way the world views autism and how much ‘productivity’ our capitalist society demands from its members. The ball isn’t in my court, in that respect.   

Like many AFABs, I didn’t know I had autism until I was out of childhood, which can be considered a ‘late’ diagnosis. For a long time, I was under the impression that I was just weird, that there was something deeply, fundamentally wrong with me, to make me feel so tired and lonely and unloved all the time. Receiving my autism diagnosis could have been a confirmation of that fear, if an understanding of the condition and a dose of good ol’ fashioned Latino-ego hadn’t intervened.   

I don’t say that I am proud of my autism, but I do recognise the colossal role it has played in shaping my personality, skills, interests, and life. It is another part of my body, my brain, and I accept and acknowledge it just as I accept my flat feet and brown hair.   

When reading over this set of symptoms, it might be interesting if the reader approaches them in the same way that I have learned to. No judgement, nor resentment towards your brain for being the way it is (should you recognise some of the behaviours as your own), just acceptance. And maybe a little bit of resentment towards society for pathologising deviance…  

  

AFAB Autism; how it manifests  

Natural, conflict-avoidant tendencies are reinforced by social training, meaning AFAB autistics have a hard time in self-advocating.   

Studies with AFAB autistic subjects have noted:   

  • Greater rates of sexual abuse and exploitation by romantic partners and strangers alike  

  • Greater rates of workplace exploitation, which can lead to financial insecurities or difficulty in keeping regular work  

  • They are easier to fall into cycles of exploitation and ostracisation because of unmanaged/ unchallenged conflict, which can lead to low self-esteem   

  

Social isolation  

  • AFAB peer groups are important for learning to manage risks, so lacking one may leave the individual more vulnerable. For example, when negotiating sex and romance; it can help to recognise red flags, abuses, toxic qualities of a relationship  

  • Having feelings of isolation and loneliness  

  • Lacking close friends and confidants in whom they trust  

  • Masking or compensating significantly; may not feel comfortable demonstrating autistic behaviours in front of friends even in more private settings  

  • Experiencing low self-esteem  

  

Higher rate of co-morbid issues  

Studies have found that many autistic AFABs are experiencing:  

  •  Mental health issues for which they already receive treatment, such as depression and/or anxiety, but these have often not been associated with autism by their mental health professionals  

  • Low self-esteem and/or sensory issues relating to food lead to higher rates of eating disorders  

  • Other, naturally occurring conditions (ie: schizoid-spectrum, genetic depression) made more severe by the stress of masking  

  • Higher rates of suicidality than AMABs  

  

Should I want a diagnosis?  

If some of those things were ringing true to you, it might be time to check in with your parents, caregivers, or autistic friends. Getting a diagnosis is always a big change; sometimes it is a vindication of what you’ve been telling doctors for years (especially among AFABs) and sometimes it is a source of shame (also, especially among AFABs).   

But, in the long run, it is always good. Having a diagnosis means you have access to management strategies that are tailored to you, which will make your life easier. There are communities who will affirm and sympathise with your struggles, and advise you on how to make things easier for yourself. Hopefully, a community, a diagnosis, and a better understanding of why autistic AFABs are the way they are, whether that’s you or a close friend, is another step in the direction of unlearning the shame AFABs/women have been taught to feel when they know they are different.   

  

Bibliography   

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