TRIGGER WARNING
Discussions of mental health, s**cide and bullying present.
Sections within this post
- What are these blog posts about?
- Introduction
- ‘Autistic enough’ - the TL;DR
- Article introduction
- Traditional view
- More on the gender bias impact
- Behind the mask
- The article’s conclusion
- My conclusion
- Until next time…
‘Opinion Piece’ posts are my thoughts, feelings and observations on other media related to autism. These can be anything from articles, books, and audio / video content. The disclaimer is that I am not a psychologist nor scientist, and so the views shared are based on my lived experience of autism only.
Introduction
This post or what I am about to say is not an advertisement / product placement of any kind - but I am a subscriber of a service called ‘Readly’. It provides access to loads of UK newspaper and magazine publications, with a huge back catalogue and hot-off-the-press releases. They send emails out when one of your favourite publications has a new release.
The day before starting to write this post, I got a notification for a new issue of ‘New Scientist’ magazine, and blazoned on the front was ‘Autism’s Forgotten Girls’ by Gina Rippon.
Source: New Scientist
I hotfooted it over to the Readly app, screenshotted the article and got to making notes, which eventually led to this post existing. Here, I will cover the most interesting points with my ‘hot takes’ infused.
‘Autistic enough’ - the TL;DR
(Trigger warnings apply here - please skip ahead if you need to)
At the start of the magazine is a taster, almost like an editor’s letter, covering the main points of the article. It states that the health industry and research surrounding health has a bias towards men, and that autism diagnosis, in all its states and forms, is no different.
“Autism, too, has long been seen as a condition predominantly affecting men… the more that autism researchers studied the condition, the more they looked for it in boys and men”
I was diagnosed with Autism Spectrum Disorder (Condition) at aged thirty. I had spent those 30 years of my life wondering what was ‘wrong’ with me, why I was such a loner from failed relationships with others, whilst also having such a strong preference to be on my own. Arguably, this autism bias towards the opposite sex could be one of the myriad of reasons why I was diagnosed so late. This also matches the point:
“Most autistic girls will reach 18 years old without a diagnosis… late-diagnosed women might describe a lifetime of ‘diagnostic bingo’… before finally receiving an autism diagnosis, often late into adulthood”
Prior to my autism diagnosis, I did obtain a number of mental health condition diagnoses, such as anxiety, depression, and social anxiety. None of these have magically vanished since my autism diagnosis; they coexist in unison.
“…but new studies of girls’ brains have revealed that autism can look very different in girls and boys… as for the tests currently used to diagnose autism, which often dismiss women as ‘not autistic enough’, a swift and radical overhaul of these would be a good place to start”
Going through the diagnosis process, the one thought I had that constantly circled round my head was exactly that - was I ‘autistic enough’? Was I putting all of my ‘signs and symptoms’ eggs into one giant basket when it may not even be true?
Article introduction
The article starts with an interesting observation (for me, anyway, who likes that sort of titbit) that, in China, autism is referred to as “the lonely disease” and in Japanese, it translates to “intentionally shut”. Another one not mentioned is the origin of the word ‘autism’ itself, deriving from the Greek word for ‘self’, namely ‘eaftós’. Arguably, these namesakes have negative connotations but do imply the all-encompassing social difficulties that can come with autism.
Right off the bat, the author admits themselves that they thought of autism as a “predominantly male condition”, holding the view of the “researchers, for decades”. Somewhat, I do not find this surprising - throughout my life I have encountered more male-identifying people presenting as autistic, than I have females (although my real-life social circles have always been considerably small, seeing as I am the opposite of a social butterfly). However, when you look at the DSM-5 diagnostic criteria, there is nothing to suggest gender bias in the following (as quoted from the article):
“Autism is a neurodevelopmental condition… current standard diagnostic criteria refer to ‘persistent difficulties with social communication and social interaction’, as well as ‘restricted and repetitive patterns of behaviours, activities or interests to the extent that these limit and impair everyday functioning’”
…which possibly shows that the stereotypes of autism being a ‘male condition’ must have been enforced by society or media representations, backed up by the following quote:
“The general consensus was that of course there are autistic girls and women, but their social difficulties and repetitive patterns of behaviour are less marked… the belief in the ‘maleness’ of autism also affected the public’s conception of it, often fed by media characterisations such as Dustin Hoffman’s character Raymond in Rain Man”
Also, ratios of autism diagnosis between males and females are quoted in the article as 4:1 in the 1960s, but then have become skewed and blurred by more recent research, and have grown to as wide as 15:1.
Source: Pexels
Traditional view
An interesting idea put forward in the article was that “a ‘female protective effect’- suggesting that specific aspects of female biology served as some kind of buffer, requiring a much stronger genetic influence before the condition emerged”. What I glean from this, in my layman’s terms, is that the female brain requires more factors at play to become autistic during development in the womb, such as the article stating that testosterone and genetics have an important role in this. However, this reinforces the ‘extreme male brain’ model of autism, and furthers the male bias in diagnosis.
“Autism clearly runs in families, with estimated heritability ranging from 40 to 90 percent”
As previously mentioned in my ‘life story’ blog posts (under the ‘Life on the Spectrum’ section), I am the first of my immediate family to be diagnosed as autistic, but with strong suspicions of my dad also being on the spectrum. Of course I do not want to armchair diagnose him, and I am not a psychologist, but he is so similar to me in many ways that it is highly likely he is and genetically is where I ‘got it from’.
A good few years ago, in my total ignorance and way before I had an inkling of my own autism, I truly thought that autism itself was diagnosed via ‘brain scans’, or what the article refers to as “biomarkers for autism”. Whilst this is definitely not the case, “a major focus of autism brain-scanning studies has been on the so-called social brain”.
The article continues to summarise what is meant by the social brain as a mix of:
“awareness of… other selves… a social instinct, which automatically oils the wheels of social interaction… the human brain is thus equipped with complex networks responsible for the acquisition and retention of social knowledge”
Results of this manner of testing was not used to directly diagnose people, but concluded that there was a lower level of activity in the social rewards networks in the brain of autistic individuals. Whilst we are looking at biology and science here (cold-hard facts), it arguably does reinforce the negative stereotypes that gave autism its linguistic namesakes in China and Japan. Compounding to this, is that 70% of these studies only tested on male brains.
More on the gender bias impact
(Trigger warnings apply here - please skip ahead if you need to)
“Teachers who should be well-placed to spot behavioural differences in the children they educate, are also prone to gender bias in autism”
With that in mind, none of my teachers throughout my entire educational history ever mentioned the prospect of me being autistic, at all. I have been described as ‘hardworking’, ‘quiet’, ‘quirky’, ‘easily disrupted by others’, but never ‘autistic’. If the teachers never picked it up, then how was there hope for anybody else (such as my family)?
“…there is clear evidence that male bias is embedded in the ‘gold-standard’ tests, with the content of the interview questions and the indicative scenarios validated on male-only samples”
I was diagnosed via the AQ-10 and AQ-50 questionnaires, not solely but they were aspects of the whole diagnostic assessment. A lot of the statements that you choose to ‘agree’ or ‘disagree’ with, on both questionnaires, revolve around how you feel or act in social situations. A few others focus on niche concepts, such as remembering things to do with numbers, as opposed to facts in general. For example, my memory for facts about particular musicians or video games that I am into are embedded in my head and can easily be recalled, but I do not have a distinct fascination with numbers nor am I able to recite things like pi to 50 decimal places (I can just about manage my long debit card number, and mobile phone number).
“In the past decade, triggered by a wave of powerful testimonies from late-diagnosed autistic women… the default male model of autism has finally come under scrutiny”
This point resonates with me - it was from scouring sources on female autistic traits (at the time, I was looking for female ‘Asperger’s’ as the term was still in some use during the time I was researching into potential diagnosis) that it finally clicked. I was under the same male bias, in that there was no way I could be autistic, as I do not have a fascination with trains, nor do I often blurt out exactly what is on my mind. I was freaked out and rattled when learning about female presentations of autism, as I was ticking many boxes (not all, hence autism being a spectrum).
Listening to and reading the stories of female autistics helped me come to terms with my own potential diagnosis, and ongoing reassurance as I navigate the life ahead of me after the fact (of diagnosis). There are numerous to list, but as a whole they were a driving inspiration for starting this blog.
“One study, for example, found that autistic girls had higher activity in [brain] areas associated with social reward than autistic boys - and even neurotypical girls - pointing to higher than usual levels of social motivation… female participants have a more powerful proactive behavioural drive for social engagement and highly reactive responses to social engagement”
The cogs in my brain started turning when thinking about this quote. It sounds to me like it can be interpreted as a vicious cycle - a mix of high social motivation (desire to partake in social activities with others) plus a stereotypical ‘lack of / unusual social skills’ can lead to a constant stream of rejection or less desirable responses in return. Speaking from life experience, I have been in this position, especially at school. I have desperately tried to fit in with friendship circles in order to avoid being singled out or bullied, but then have encountered those sorts of behaviours as a result of my attempts to fit in anyway. This can all then lead to rejection sensitivity dysphoria (RSD) - the emotional highs and lows of inclusion and rejection becoming more extreme, where the highs are derived from this quoted “higher activity in [brain] areas associated with social reward” and the lows as a result of RSD.
Source: Pexels
Behind the mask
(Trigger warnings apply here - please skip ahead if you need to)
“In girls, the networks underpinning this behaviour [(responding to sensory overload)] seemed to have additional connections to those parts of the frontal areas in the brain involved with monitoring social feedback… there appeared to be a female tendency to monitor and control such over-responsiveness to avoid social embarrassment”
A result of the conflict between active social motivation and subsequent rejection due to ‘lack of / unusual social skills’ not only compounds RSD, but leads to masking or camouflaging behaviours. From school and beyond, I have lived under a mask that I only lift a certain amount depending on who is present in my company (I understand that neurotypicals also do the same, but more likely for different reasons than autistics). For example, there are members of my family who I am not completely unmasked around. However, since diagnosis and sharing with those people that I am autistic, the mask has been able to lift a little bit, and so I am no longer feeling as drained in their presence. It is no lie and a possible widespread experience that, with so much masking, you lose a sense of yourself and begin questioning who the ‘real you’ actually is.
A specific example in relation to the quote (regarding controlling over-responsiveness) is that, as part of my unmasking, I have started overtly putting my fingers in my ears when a sudden distressing loud noise is occuring in public or with others in familiar surroundings. The instant wave of relief I get from doing this is indescribable. I have also started to wear earplugs that reduce different decibel levels in different scenarios (some for concerts, some for general conversation in a loud area etc.) - although I have always worn them for sleeping.
“It is the recent findings concerning such camouflaging behaviour that have really marked the emergence of an understanding that autism may present differently in girls and women”
From this quote, the main gist I get from the article is that camouflaging behaviour is a key component of the difference between male and female presentations of autism (but it is not the be-all and end-all, as every autistic individual is different). It continues to state that despite the key differences in autism presentation between the genders, it does not mean that either gender cannot have traits that their opposing gender has. For instance:
“It should be stressed that there is huge variation and overlap, with some boys and men being more ‘chameleon-like’ and some girls and women displaying the more typical signs of autism - though these individuals will find it easier to get a diagnosis”
I have discussed previously in this blog post about the effects that masking or camouflaging has on an individual, in terms of RSD and losing your sense of identity. The article also reflects other negative consequences of the behaviours, such as “high levels of anxiety, exhaustion and stress, as well as chronic depression and s..cidal ideation”. Whilst I am someone with first-hand experience of all these, both as a result of masking or not, the article aims to prove that there is evidence from neuroscience research to back up why these are commonplace in some autistic individuals.
The article’s conclusion
…is aiming to have a positive outlook on the future of autism diagnosis, especially for female-presenting individuals. It sees that this new breakthrough in neuroscience research around female autism could “break down the barriers that autistic women have confronted and inform a more accurate - and inclusive - awareness of what autism can look like… adjustments to diagnostic criteria should more accurately capture the lived experiences of all autistic people, not just boys and men”. Removing the male bias and balancing the populations within research will present a better outcome in the future for understanding autism as a whole.
The article rounds off by promoting Gina Rippon’s new book, ‘The Lost Girls of Autism’ - which I can imagine was the absolute main point of the article (to promote the book by providing a sample of what it is all about - but I guess we all have to make bank somehow).
My conclusion
What I found with the article is that it is reiterating some aspects of my autistic experience, some of which being a result of my own innate gender bias (from being assigned female at birth), but backing these up with neuroscience and cold-hard evidence from studying the brain.
Whilst there is a clear and highly stereotypical ‘male brain’ view of what autism looks like, reinforced in the diagnostic criteria and deemed throughout the article as the ‘male bias’, the article is somewhat pushing back with a ‘female bias’, in that stereotypical female autism revolves around masking or camouflaging behaviours (as opposed to obsessions with numbers and trains). This is evident in my case, and the following could be seen as a hypocritical view given the gendering of my own blog, but we are enforcing stereotypes back the other way by splitting out autism diagnosis into genders rather than keeping it as one all-encompassing diagnostic umbrella.
However, if the splitting up of autism into genders is the first, much-needed step in reducing autism diagnosis being missed in females and increases the likelihood of it being ‘caught’ sooner, then in an ideal world, autism will eventually be seen as a genderless diagnostic term (for as long as it takes to be done so).
Thank you very much for reading this blog post. I appreciate you spending time here on my corner of the internet. Hopefully you got something out of reading the essay above.
Stay tuned for upcoming posts and be the first to read them by following me on the social media links, in the menu bar, to know exactly when new posts are published.
Until next time,
