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Mask on, Mask off: How the common understanding of Autistic masking is creating another mask

This post was authored by Tanya Adkin

Over the years I’ve been privileged enough to play a part in the discovery journey of what must be hundreds of Autistic people. One of the questions I am frequently asked about masking is “how do I unmask?”, as if there is a more authentic version of themselves that exists below the layers of neuronormative conditioning and the traumas that come with that.

My answer is often received as quite shocking. You don’t unmask. Not consciously, at least.

Masking tends to be commonly understood (thanks to some really interesting literature) as a choice. Almost as if when somebody suggests that we are Autistic, or we come to that realisation, we can begin to remove parts of ourselves that we deem “inauthentic” or “forced”, but where is the roadmap that tells us which parts are inauthentic or forced? How do we know what is the mask and what is us?

Autistic masking (also referred to in the literature as camouflaging, compensation, and most recently “adaptive morphing”) is the conscious or unconscious suppression of natural responses and adoption of alternatives across a range of domains including social interaction, sensory experience, cognition, movement, and behavior.

Pearson & Rose, 2021

To sum up the above quote, while we can consciously choose to conceal authentic Autistic expression as a way to avoid stigma; masking is also an unconscious projection of acceptability in an effort to avoid traumatic situations that arise from our differences. Projecting acceptability does not just mean pretending to appear more neurotypical.

Much like water, we take the shape of our container. To put it another way, we don’t choose the form that our masking takes, the environments we exist within often choose it for us. This is why many Autistic people experience internalised ableism, the environment of neuronormative society teaches us that we are broken and unworthy.

These attitudes are taught to us from the moment we commence education. Schools that give out attendance rewards, and punish children and families that struggle to engage, usually because of unmet needs or disability.

Gray-Hammond & Adkin, 2021

This feeds back into Beardon’s Golden equation:

Autism + Environment = Outcome

It stands to reason then that if you have been unconsciously masking for a significant amount of time in order to protect yourself due to previously traumatic experiences, you may not even be aware of the ways in which you conceal yourself. Traumatic experiences for an Autistic person are unavoidable (Gray-Hammond & Adkin, 2021), therefore an unconscious response to said trauma in the form of projecting acceptability is also unavoidable.

50% of Autistic people are alexithymic (Kinnaird et al, 2019). Which means that we have difficulties reading, interpreting, or even feeling our emotions. Emotions are an internal sense, this sense is called interoception. When we talk about alexithymia what we are talking about is interoceptive differences specifically related to our experiences of emotion. If we have interoceptive differences, how are we supposed to know which internal authentic expressions we are unconsciously masking?

I posit that masking is one of the most authentically Autistic expressions. It’s been argued that not all Autistic people mask, what we actually know is that all people mask, regardless of their neurology. This has been called many different things, from “using a telelphone voice” to code switching. All of us mask, it’s a human experience. For monotropic people, who cannot perform neurotypicality as comfortably as a polytropic person might, the taxation on one’s attentional resources can be huge. This then leads to monotropic split (Adkin, 2022), burnout, potential suicidality, and mental health concerns.

If all humans mask to some degree then so do all Autistic people. We need to get rid of the notion that masking is appearing more neurotypical. This may not be achievable for everyone. There are often phrases thrown around such as “high-masking” or “unable to mask”. To me this is repackaging of functioning labels. Truth be told if we are basing our analysis of somebody’s ability to mask on how neurotypical they appear, we are missing the entire point of an unconscious trauma response.

If cognitively privileged Autistic people are unable to articulate the beginnings and ends of an unconscious mask, then who are we to impose our own unconscious masking onto another. We are reinforcing neuronormative and ableist stereotypes by assuming that all masking is about performing neurotypicality, and that neurotypicality is something we should emulate.

When we discover our Autistic identity, our environment changes. The vessel in which we exist is changing shape, so therefore so are we. This could be the literature, the information absorbed in google searches, the attitudes around us (such as those of Autistic advocates). It could reinforce negative views of ourselves.

What people are really asking is not how to unmask, but “how do I behave more Autistically?”

The unconscious masking is so ingrained into us that the assumption is often “if I behave Autistically, things will be better”. Which in its own way is a conscious expression of masking in order to avoid the traumas which masking created in the first place. It follows a cycle of imposter sydrome. Doubting one’s identity, because you don’t flap your hands, or because you are considered “sociable”. I am not ashamed to admit that I have been formally identified twice because of this.

We share commonality but when you’ve met one Autistic person, you have met one Autistic person. Our life experiences (like it or not) shape who we are. The concept of unmasking can oftentimes (in my experience) create somewhat of a secondary identity crisis. You unconsciously consider yourself not neurotypical enough, but also not Autistic enough. Further from this, we can see exaggerated expressions of the Autistic Self as a way to project acceptability within the new environment in which we now exist. Also, as a way to deter potentially harmful environmental interference.

We become angry, and rightfully so. We may notice that we have been too passive, we are given a licence to lean into stereotypical Autistic expression. There is nothing wrong with that. One could say that we try on the Autistic mask because this is how we have been conditioned to behave.

It is still very much an unconscious projection of acceptability in order to keep oneself safe. So therefore, we do not unmask in the way that many think we do; we do not peel of our face to leave by the bedside at night time. You are already authentically Autistic.

It takes time, but what we can do is become more aware of our environments and reframe our own experiences thus far, which eventually, hopefully, leads us to exist in a way that is least taxing on our internal resources but also keeps us safe.

References

Adkin, T (2022) What is monotropic split? Emergent Divergence. emergentdivergence.com

Gray-Hammond, D & Adkin, T (2021) Creating Autistic Suffering: Ableism and Discrimination. Emergent Divergence. emergentdivergence.com

Kinnaird, E., Stewart, C., & Tchanturia, K. (2019). Investigating alexithymia in autism: A systematic review and meta-analysis. European Psychiatry, 55, 80-89.

Pearson, A., & Rose, K. (2021). A conceptual analysis of autistic masking: Understanding the narrative of stigma and the illusion of choice. Autism in Adulthood, 3(1), 52-60.

The reality of how cure culture interrupts the neurodiversity movement
Scene from X-Men

Rogue enters and says "Is it true professor, they can cure us?"

Professor X answers "Yes, Rogue. It appears to be true"

Storm intersects "No, Professor. They can't cure us. You wanna know why? Because there's nothing to cure, nothing wrong with you. Or any of us, for that matter".
Scene from X-men

The above scene is quite poinient to the topic of this article. Here we have Rogue, a mutant who kills everything she touches, and Storm, who can control the weather.

One might be forgiven for not necessarily seeing the connection between this and Autistic experience, but it is in fact a very good allegory for the battle between the normative violence of cure culture, and the neuroqueering approach of a lot of the Autistic community. Rogue and storm disagree on the benefits of a cure because they both have different profiles of how they embody their Self and experience the world.

In much the same way, Autistic people who support cure culture are ostracised and spoken poorly of. I’m going to let you in on something, I used to be one of then. I longed for someone to make me “normal”. I was tired of being the outsider. I, of course, was lucky enough to discover the Autistic community. I learned how to co-exist with my particular profile of traits and intersections. I was taught how to make the best of being a marginalised person, and came to see the harmfulness of cure culture.

Not everyone has had the access to the community I have had.

There in lies the crux of the matter. The cult of normality, peddlers of normative oppression, face less scrutiny while our energies are spent fighting amongst ourselves. While hearing the harmful views of those who are yet to dismantle their internalised ableism is difficult, we need to give them the space to learn and grow with us. If we are fighting each other, we are not fighting the system.

This isn’t to say that we should excuse or accept harmful words or behaviour, more a commentary on the idea that everyone is at a different stage on their journey of discovery and growth. Much as we were brought in from the harsh cold of society, we need to create a space where those with less knowledge and self-acceptance are willing to listen to us and grow alongside us.

Cure culture has done so much harm. From the children being fed bleach, to the trauma Autistics experience hearing those stories, to the civil wars in our own communities. We need to find a way of showing that we understand.

This is what we need to understand; all of us have our own unique experience of being Autistic. Much as Rogue and Storm has vastly different experiences of being mutants, not every Autistic person has a profile of traits and intersections that is congruent with our own. Some of us have been so traumatised that we can not come to terms with our Self. We need to help people come to love who they are, even if that person has more negative experiences than we do.

We need to consider how we create a world that truly accommodates diversity, and not just the pretty, idealistic version of diversity that sells t-shirts and pays lip service during company diversity campaigns.

More on Zeno’s Paradoxes and the issues with Autistic to non-Autistic communication

As you may have noticed from my most recent blog post, I am somewhat down a rabbit hole at the moment. In my previous article I discussed Zeno’s paradox of plurality and how it applies to the dehumanisation of Autistic people and the double empathy problem.

Today I would like to consider another of Zeno’s paradoxes and how it applies to the double empathy problem.

This particular paradox was known as the Dichotomy Paradox. Essentially, it explains that when travelling from point A to point B, one must first travel to the halfway point between the two. To then travel from that point to the destination, you must travel half way again. This continues infinitely when travelling towards a fixed destination and thus Zeno argued that you can never reach point B.

When considering communication across different neurocognitive styles, one must also consider what the goal is. If we presume that the goal is “successful communication” then the double empathy problem tells us that this is very difficult due to the different styles of communication. Despite this, Autistic people are always expected to be the ones to put the emotional labour into communicating. This has been discussed by Rachel Cullen, a recording of a livestream with Aucademy featuring them can be found here and here).

We then encounter the dichotomy paradox. Neurotypicals remain a fixed point in the goal of successful communication, while we as Autistics are constantly expected to move towards the goal by accommodating their preferred communication styles. It is as if we are constantly reaching the halfway point, and never reaching our destination. No matter how well we accommodate neurotypical preferences, we are caught in an infinite regression of distance, not achieving the aim.

This to me, highlights the deeper issue of dehumanisation and objectification of Autistics. Neurotypicals (perhaps subconsciously, sometimes consciously) consider themselves the pinnacle of humanity, a goal that all should be striving for. We know from the existence of the various compliance based behavioural interventions, that Neurotypicals do believe this in many cases. Evidenced by the fact that it is considered “gold-standard” to teach Autistic people to hide their Autistic nature.

As Dr. Monique Botha mentioned in their recent seminar, there is a reason why researchers and professionals insist on person-first language. “I want to eradicate autism” sounds much less like genocide than “I want to eradicate Autistic people”. However, both of those statements mean the same thing. This is justified because whether or not they overtly see it, neurologically queer behaviour and experience is seen as non-human. Remi Yergeau argued this dehumanisation was due (at least in part) to a perceived lack of rhetoricity in their book Authoring Autism.

Autistic people are viewed as husks, mindlessly performing nothing, controlled by an abstract spectre called autism. This then is perhaps why so many neurotypical people insist on person-first language, and ignore our preference of identity -first language. Why would they take a step towards the all consuming spectre? Surely it is better to leave such a thing trapped in that infinite journey towards a goal that is never to be reached.

This, then, is the appeal of neuroqueering to me. When I embrace my neuroqueer self, I no longer have to be trapped in the infinite journey towards performative neurotypicality. I escape the dichotomy paradox by abandoning societal expectations, and being true to myself. True to what nature intended for me. I am Autistic, I am divergent, and that divergence is a thing of beauty.

We need to raise up our fellow Autistics, high above the dichotomy of neurotypicality and neurodivergence. We need to embrace a world in which these words are redundant in meaning because no one group has the power to oppress another; and when our fellow Autistics are lost in the dark, we need to shine our own light, and guide them back to the daylight.

Addiction advocacy and the inspiration paradox: A reflection at 6 years sober

Today I am 6 years sober from addiction. During those six years I have learnt many lessons, but in this reflection I would like to consider something that has played on my mind for the past three years of my advocacy work.

Inspiration.

While not overtly a bad thing, it is often misused to infantilise and minimise the achievements of disabled people while hiding behind a mask of feigned respect. This phenomenon is known as “inspiration porn”.

A good (hypothetical) example of such a thing would be a video of a disabled person doing something completely mundane, like dancing, but they would be dancing with a non-disabled person. The video would centre the non-disabled as some kind of saviour to the disabled person for doing something as basic as treating them like a human being. The implication of the video, albeit in subtext, would be “Look at the amazing things that disabled people can achieve when an abled person rescues them from their shameful existence”.

It’s dehumanising and wrong.

So, addiction advocacy.

As a recovering addict in the public eye, I do what I do because I want to help others overcome similar challenges to my own, and help reduce their suffering. This does in fact require inspiring people. If it weren’t for the sober addict who showed me kindness during my first stretch on a psychiatric ward, I might not have chosen recovery.

The fact that they had turned their life around, and become someone I wanted to look up to was inspiring, and that isn’t a bad thing.

What would be bad would be if people like myself are allowed to become another source of inspiration porn. It’s a difficult line to walk. I want people to have what I have found, not get off on the tragedies that have formed who I am.

Contrary to popular belief, addicts are people. We are not burdens, we don’t deserve our suffering. Regardless of whether or not we are in recovery, we deserve food, housing, health care, support, and kindness.

This is what I want to inspire in people.

So please, don’t look at me and think it’s a miracle that I recovered. My recovery shouldn’t be the inspiration. I was privileged to have a loving and supportive set of family and friends. I had good key workers (although the services they came from were woefully ill-equipped). I was in a place where I was ready to enter recovery.

What I want to inspire in you is the idea that all addicts deserve recovery. I want to inspire you to challenge the systems that keep people like me trapped in a world of suffering.

I want you to know that those with less privilege than myself need us to get in the trenches and help them fight this war.

If that is what I inspire in people, then I am happy with what I am doing. If, however, you look at me and see a walking miracle, then I have not gone far enough.

The tragedies and traumas of my life should not be celebrated. They should be wielded as weapons to dismantle the masters house, and rebuild it into something where we can all coexist and thrive.

Creating Autistic Suffering: Ableism and discrimination

This article was co-authored between David Gray-Hammond and Tanya Adkin

Trigger Warning: This article contains discussion and examples of ableism and discrimination against Autistic and disabled people. Mentions the R-Slur.

When you’re first confronted with the word “ableism”, it seems a bit abstract and unreal. This is because it is so ingrained into our society and psyche that it has become a normalised and accepted part of every day life. Regardless of your position and privilege (or lack thereof). Unfortunately, for countless disabled people, ableism represents a very real threat to not only their daily lives, but their right to exist. It massively contributes to poor self-worth and self-esteem, even ones own understanding of self, which for Autistic people (who may already be coming at it from a disadvantaged position) is exceptionally dangerous.

We can’t talk about ableism without talking about masking. It could be argued that masking occurs primarily because of ableism, in fact, it seems to be the rather obvious conclusion. We know that masking is a response to Autistic people not feeling safe to express their true selves. Why is that? Surely, if there were no ableist attitudes towards our expression of self, then we wouldn’t need to spend so much energy hiding it, often at great cost to our wellbeing.

Ableist attitudes are literally prescribing masks for neurodivergent people. Especially those of us who do not have access to community.

“Masking is an unsurprising response to the deficit narrative and accompanying stigma that has developed around autism”

Pearson A. & Rose, K. (2021)

Ableist attitudes feed directly into something known as ‘minority stress’. Minority stress is a phenomenon where minority groups experience increased adverse life events in a society that oppresses them by design. Due to ableism being inherent in our society, all of the infrastructure and supports in place actually add to the burden of minority stress.

“Minority stress theory hypothesises that the decreased social standing of stigmatised groups leads to increased exposure to stressful life events, while simultaneously being afforded fewer coping resources with which to handle these events”

Meyer, I.H. (2003)

So what exactly is ableism?

Ableism is discrimination and prejudice against a person, or group of people, that are disabled. It can take many forms, from the person who complains that disabled people get a “free ride” through to it’s scarier presentations such as violent hate crime.

Ableism is the systemic attitude that disabled people have less value than non-disabled people. This has close ties to capitalism, a lot of the way humans are valued is on their economic worth or “intelligence”. In a world where every one has a monetary value, it is easy to see why disabled people are wrongly considered less under this system.

Ableism has been trained into us from a young age, how many of us used the r-slur as an insult without even knowing the full ramifications of how this word scaffolds the systemic ableism that our current system relies on.

“Bringing home the bacon”

“What do you bring to the table”

When having time off of work, sick, is frowned upon or considered lazy, we begin to see why this system is not fit for purpose with regards to disabled people. These attitudes are taught to us from the moment we commence education. Schools that give out attendance rewards, and punish children and families that struggle to engage, usually because of unmet needs or disability.

As children we are sent home with mountains of homework, a not so subtle reminder that in the adult world, you cannot escape work, even in the privacy of your own home. Unpaid labour is lauded as “dedication” and “good work ethic”. These unconscious attitudes place us into a prison of ableism, where we have the keys, but are not taught how to use them.

Considering this, it is easy to see where internalised ableism comes from for so many of us.

“Internalised ableism is the absorption of negative beliefs about a particular disability and an attempt to distance oneself from that ‘spoiled identity’”

Woods, R. (2017)

Too many of us live our lives believing there is something wrong with us, valuing our lives by our ability to work. Western culture especially has taught us that we need to have a fixed purpose, when in fact, we are missing the beauty in our own existence.

That’s the problem, when we can’t see our own beauty, we try to hide who we are.

Simply put, living in a world where society actively discriminates (sometimes unconsciously) against your authentic expression of self, or places a higher value on our abled peers, naturally leads to internalised negative self-view. Even self-hate in some cases.

There are various laws and acts that are intended to protect us. One such act is the Equality Act, which covers various “types” of disability discrimination.

Disability discrimination, as defined by the Equality Act 2010, falls into six different categories:

Direct discrimination
Indirect discrimination
Failure to make reasonable adjustments
Discrimination arising from disability
Harassment
Victimisation

While we may be legally protected against some forms of ableism, we have to ask ourselves, honestly, how accessible and practical is it to enforce this?

The truth is that justice isn’t really justice. To utilise these protective laws, you have to be coming from a place of considerable privilege. Justice can be expensive, spoons heavy, and convoluted to action. Which in itself is ironic, given that these laws may be inaccessible to the very people who they are supposed to protect.

Ask any parent who has ever tried to acquire an EHCP for their child.

As with many laws, acts, and processes, designed to either aid or protect the most vulnerable. They are like fables with no moral at the end of the story, they are ultimately performative, intended to silence the rabble-rousers, and the people crying out for fair treatment. There are no winners here.

It does paint a pretty grim picture, however things are happening slowly. Progress does not come all at once, but rather in the many droplets that form an ocean. The internet means that Autistic and otherwise disabled people have been able to form communities, breaking down barriers and organising for their right to exist. The gap between parents, professionals, and disabled people is narrowing.

Anyone can publish a blog about their own lived experience. Just like we are doing here.

The social model of disability and the neurodiversity movement are gaining traction and popularity.

We still have quite some distance to move forward, but bit by bit we are chipping away at the stones of ableism that have been shackled to us since birth. Most importantly, the ableism we feel towards ourselves is washing away. Giving rise to a community that is showing on a daily basis, it’s growth and self-advocacy. A community that is proud of who they are.

We are proud to be a part of that community.

We need to decide how history will remember us.

100 years from now, we intend to be on the right side of history. Standing with all our neurokin. Understanding, accepting, and celebrating peoples differences, and the rich cultures that they lead to, rather than labelling anything that dares deviate from the norm as a deficit.

Bibliography

Equality Act (2010) United Kingdom Government

Meyer, I.H. (2003). Prejudice, social stress, and mental health in lesbian, gay and bisexual populations: Conceptual issues and
research evidence. Psychological Bulletin, 129, 674-697. doi:10.1037/0033-2909.129.5.674

Pearson, A., & Rose, K. (2021). A conceptual analysis of autistic masking: Understanding the narrative of stigma and the illusion of choice. Autism in Adulthood, 3(1), 52-60.

Woods, R. (2017). Exploring how the social model of disability can be re-invigorated for autism: in response to Jonathan Levitt. Disability & society, 32(7), 1090-1095.

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