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Autistic Masking: We're all in this together




"School is often where many autistic people will find their mask, and it will be a coping mechanism whilst simultaneously destroying us"



Lately I’ve been posting a mini-series on social media surrounding the topic of ‘autistic masking’. In this post we’ll be digging a little deeper and looking at some research I undertook during my master’s degree, with shocking (but simultaneously not surprising) results.


So what exactly is masking? If you saw my first post in the series on social media (“Autistic Masking: What It Is, Why We Do It and How It Affects Us") you probably already have the gist of masking, but if not, you’ve no doubt heard it spoken of at some point.


The term ‘masking’ is most commonly used in relation to autism and refers to the way in which an autistic person hides behaviours, actions, or anything that can identify them as being autistic. Sometimes this will be consciously, other times it’ll be automatic and with little thought (this is often the case when someone has been masking a very long time and it has become almost like a habit). Often though, it’ll be a combination of both; we’ll be aware we’re masking, yet it’ll happen automatically, with a feeling of having little choice.


Whilst there are benefits to masking (which is a controversial statement due to the dreadful side-effects prolonged masking can bring) the pro’s routinely do not outweigh the con’s. In their study focusing on the effects of masking on mental health, Bradley, L. et al. (2021) analysed the dangers of masking, as well as the benefits of masking. Autistic participants identified that, whilst masking was highly damaging in several crucial ways, it did provide them with “greater access to social spaces, and protection from harm”.


This finding is bitter-sweet as these so-called ‘benefits’ actually unintentionally describe the unacceptable environments in which autistic people find themselves; we live in a world where people who are viewed as ‘different’ face actual harm and exclusion from social spaces. If this doesn’t highlight the need for the promotion of neurodiversity and the continuation of the work of neurodiversity as a movement, I don’t know what does.


So if the side-effects greatly outweigh the benefits, why do autistic people continue to mask? In addition to the above (access to social spaces, reduced likelihood of harm) the root of masking lies with lack of understanding, tolerance, and an allistic (non-autistic) standard causing pressure on autistic individuals. Indeed, the lack of access to social spaces and risk of harm are under-pinned by these very factors.


Although autism is being talked about more than ever before, many autistic people still feel misunderstood. In truth, autism is a complex condition that, due to this complexity, is viewed incorrectly. For example, someone who received a diagnosis of ‘Asperger’s’ (a term no longer used in healthcare settings or diagnosed) will often be viewed as ‘high functioning’* (another label no longer used) yet struggle immensely on a daily basis.


Research has shown that the likelihood of someone who is autistic having a psychiatric comorbidity is exceptionally high (Lugenegard, Hallerback and Gillberg, 2011; Romero, M. et al., 2016) meaning that many autistic people will be struggling with multiple conditions simultaneously, many of which will occur in peaks and troughs, meaning some days the person may appear highly capable and ‘functioning’, whilst other days not so much.


This is where we, as a society, fall short: we over-simplify autism, rely on inaccurate media representation, and trivialise the condition (“Oh, we’re all a little bit autistic”). This leads to misunderstanding, which leads to certain behavioural expectations/characteristics placed upon autistic people.


In a small research project undertaken during the final module of my master’s degree, I investigated society’s perception of autism and the experiences of autistic people. Of the people who participated, 78.6% either agreed or strongly agreed that they had experienced assumptions made about them based on their diagnosis of autism, and under half of participants said they were comfortable enough to disclose to people that they were autistic.


Perhaps most shocking of all was the response to whether they felt the media was portraying an accurate and fair representation of autism…just 7.1% of participants felt it did. The danger with the media providing inaccurate, or narrow views of autism means that we’re often ‘boxed’; we’re viewed in a ‘black and white’ way with little tolerance for variance. Either we’re ‘normal’ and expected to fit in with allistic ways of ‘being’, or we’re disabled and set apart from society into our own ‘group’. Problems arise when people don’t fit neatly into these categories and find our differences gathering consequences.


The occurrence of bullying of children on the autism spectrum is alarmingly high, and autistic children are more likely to be bullied than their allistic peers (Humphrey, N. & Hebron, J., 2014). This is especially the case, according to researchers, in “those attending mainstream school”. Why would this be? Because, again, we are either assigned to our own group (in which we attend specific special education schools or pupil referral units) or expected to conform to allistic functioning in mainstream schools, and when we fail to meet this expectation, we’re ostracised.


School is often where many autistic people will find their mask, and it will be a coping mechanism whilst simultaneously destroying us: “higher self-reported masking related to poorer mental wellbeing” (Cage, Cranny and Botha, 2022)


Whilst this may all seem rather bleak, the good news is that once we, as autistic people, realise the impossible situation we’re in and the effects it’s having on our wellbeing, we can begin to take control and reject the ‘black and white’ thinking imposed upon our very existence.


If you saw the second instalment of my mini-series, you’ll have seen suggestions and considerations for starting your own unmasking journey, and if you’re someone who knows/loves/supports an autistic person/people the final post provided suggestions for helping autistic people to unmask.


The crucial keys in the journey to making autistic people feel more empowered to be themselves is understanding and tolerance. This will not only benefit autistic people but also allistic people! In a study looking into masking in both autistic and neurotypical people, Miller, Rees, and Pearson (2021) found that both autistic and neurotypical people said that masking: “made them feel disconnected from their true sense of identity and had a negative effect on them”**. Neurodiversity includes all neurotypes, and nurturing a society where we all feel comfortable to be ourselves, neurodivergent or not.

We’re all in this together!




*Functioning labels are viewed as damaging by many autistic people. The term ‘support needs’ is now more often used i.e. “they have high support needs” or “they have varying support needs”


**People often wonder how autistic masking differs from the way in which people have different ways of acting depending on the situation they’re in (for example you probably act differently around your boss than you do around your close family). When an autistic person masks, they’re supressing who they are at their core; autism is a neurodevelopmental condition and as such is part of our neurobiology. When an allistic person adjusts their behaviour to meet the situation they find themselves in, they are able to retain who they fundamentally are. Take a look at Jae’s article “Autistic Masking Goes Much Deeper Than Adjusting Your Behaviour” in the ‘further reading’ list.



Further Reading Recommendations


If you’re keen to learn more about masking, as well as the difference between autistic and allistic masking, take a look at Jae’s insightful article: “Autistic Behaviour Goes Much Deeper Than Adjusting Your Behaviour” Link


Dr Hannah Belcher is an autistic researcher and author. Read her explanation and experiences of masking on the National Autistic Society’s website: Link


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References

Bradley, L., Shaw, R., Baron-Cohen, S., and Cassidy, S. (2021) Autistic Adults’ Experiences of Camouflaging and Its Perceived Impact on Mental Health. Autism in Adulthood, 3(4) 320-329


Cage, E., Cranney, R., and Botha, M. (2022) Brief Report: Does Autistic Community Connectedness Moderate the Relationship Between Masking and Wellbeing?. Autism in Adulthood, 4(3). 247-253 https://www.liebertpub.com/doi/abs/10.1089/aut.2021.0096


Humphrey, N. and Hebron, J. (2014) Bullying of Children and Adolescents With Autism Spectrum Conditions: A ‘State of the Field’ Review. International Journal of Inclusive Education, 19(8). 845-862. https://www.tandfonline.com/doi/full/10.1080/13603116.2014.981602


Lugnegard, T., Hallerback, M., and Gillberg, C. (2011) Psychiatric Comorbidity in Young Adults With a Clinical Diagnosis of Asperger Syndrome. Research in Developmental Disabilities, 32(5). 1910-1917. https://www.sciencedirect.com/science/article/abs/pii/S0891422211001442


Miller, D., Rees, J., and Pearson, A. (2021) “Masking Is Life”: Experiences of Masking in Autistic and Nonautistic Adults. Autism in Adulthood, 3(4). 330-338. https://www.liebertpub.com/doi/abs/10.1089/aut.2020.0083

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