Tag: #actually autistic

The Masking Paradox

In my last post I wrote a little bit about autistic masking. Autistic masking is a dangerous compensatory strategy some autistic people adopt in order to appear more neurotypical for at least some period of time. 

It’s important to note that not every autistic person is capable of masking or chooses to mask.

Wikipedia defines masking as “a process in which an individual changes or “masks” their natural personality to conform to social pressures, abuse, and/or harassment.”

I say this strategy is dangerous because it is a sword that cuts both ways. Masking requires an autistic person to sacrifice their mental and physical health and authentic self in exchange for social capital. This social capital can mean the difference between being able to access basic survival needs of employment, housing, and even community or not. 

Access to this social capital cannot be discounted when you consider the statistics:  Nearly 80% of autistic people are unemployed and only 1 in 9 marry. 

But, masking is not benign. It comes at a terrible price. It extracts a cost in health and stamina. It stresses the autistic person’s neurology and sensory system far beyond its limits. This has a cumulative neurological affect over time leading to loss of function and eventually burnout. It also takes a terrible toll on one’s mental health and happiness. 

It is a sign of our deeply ableist society that autistic people must pit their survival needs against their mental health in order to access basic societal functions. It’s an untenable choice.

And, while all of the focus is going to meeting the demands of neurotypical norms and avoiding the devastating social consequences for breaking social rules, one cannot develop a real solid sense of self. Fear, anxiety, shame, embarrassment and humiliation are such common social experiences that the impact on one’s sense of self and self esteem is incalculable. 

For me, masking was not a choice but rather a series of responses to a hostile environment. It was necessary for survival. I learned early that other humans don’t really want to be around me as I am. I have gone to great lengths to hide my difference in hopes of an acceptance which has never quite come except in a very few hard won exceptions. Instead, I learned to act – not in the ways that were best and came naturally to me – but in the ways that made those around me most comfortable. 

These compensatory strategies were internalized at such a young age that I was unaware of them. I was always aware I was not sharing my full self with the world, but I had other narratives to explain this and never saw the depth or the full cost of masking until I discovered my autism and began taking off the mask. 

Here is a bit of what it’s like to mask from my own experience:

The mask is heaviest in social situations especially in groups and most especially new groups. I have to use my hyperfocus skills to navigate social situations. This means social situations are draining. This doesn’t mean I never take pleasure in them. I find people fascinating and enjoy their company when I can find my niche. But, (and this is a big but) if social obligation exceeds my capacity for socialization, it can quickly become a misery. (and it is always draining regardless of how much I am enjoying the interaction.)

MASKING IN SOCIAL COMMUNICATION

The first hurdle is small talk. I despise it and am not good at it. It’s not just that I find it incredibly awkward and I run out of things to say quickly. It’s also how shallow it is. What interests me is connecting with people on a real human level, but that’s not how neurotypical communication works. 

Alongside the challenges with small talk is the constant internal monitoring I must do:  Am I monopolizing the conversation? Is the other person becoming bored? What is my body language like? Are my arms crossed? Am I relaxed or tense? Am I making enough eye contact? Too much eye contact? Am I following what they are saying?  

For most people, these processes are internalized and take no conscious effort, but for me, It takes monumental effort. 

There are times when I am doing better than others and this can feel like a dance that I’ve mastered:  check body language, make eye contact, look interested, check other person’s level of interest, reflect on my part and intensity in conversation and adjust levels as needed, stay engaged in what other person is saying. make appropriate facial expressions. 

(Hah! Nailed it!)

Sometimes I am in blissful ignorance believing all is going well only to find later that I have unintentionally offended or been misunderstood or rubbed someone the wrong way 🙁 

During times of burnout, these conversations are less like a dance and more like an anxiety ridden train wreck or (worse for me), a total clueless interaction where harm is caused to relationships without my knowing until later when the inevitable spiral of shame and disappointment ensues. 

I also have a real problem with disclosure: knowing who to disclose how much information to and when it’s appropriate. I tend to overshare too soon and then get really hurt by people who use my private feelings and information against me. 

IN RELATIONSHIPS

I have spent too many (of my too few) resources attempting to live up to neurotypical norms for social behavior and communication (which are very different than autistic social behavior and communication). Anxiety becomes a constant companion as I have lived with the continual fear that I will mess up – that the mask will slip because I cannot maintain the energy to hyperfocus on it all of the time.

I cannot describe the portion of my life and my thinking which has gone to dissecting conversations after the fact to see where I might have failed or beating myself up for where I did. Or, practicing for hours what I will say to someone, especially if it is something difficult. 

The more people involved or the more complex the situation, the more likely I am to fail. I miss nuance and cannot keep track of and please multiple people at once. It becomes too much for me to track and process. I loose my own boundaries and needs in the chaos of it all. 

THE MASKING PARADOX

The paradox of masking is that it’s a losing game. The better I am at it the more it keeps me from the acceptance I crave. To find love and belonging, people need to be seen. Autistic masking is the opposite of this. The better I am at masking, the more my own needs have to go neglected and the less I am seen. The more I strive to fit in, the less I belong. Masking will always leave me hulled out and burned out. 

Masking has taken a terrible toll on my sensory system, my mental and physical health and my state of mind. It is exhausting. It takes the essential energy necessary to live a successful and contented life. The mask was put in place so young that it has hidden my authentic self from me and even prevented me from being able to fully develop an authentic self. Masking has left an indelible mark on my being. 

I am taking off the mask and letting the beautiful person beneath it fully develop and flourish. I have no idea what I am truly capable of free of the burden of masking, but I’m determined to find out. 

However, this has had a deep impact on my existing relationships. People are used to me showing up a certain way and being of certain utility. Unmasking means changing that social contract. In unmasking, I am not sure how many of these relationships will survive.

I am excited to know that the relationships that do will probably be the most authentic and sustainable of my life.

I am very privileged to have an amazing family. I have a supportive children who are incredibly accepting and amazing humans and a spouse who is rolling with the many changes of a late autism diagnosis. Their love and support means so much. 

I have a few friends who have humbled me with their understanding and acceptance. 

This is enough. More than enough. 

A Life Expectancy of 54??

Content Warning: ableism, statistics on suicide and autism, mention of trauma, disability, bullying, gaslighting, oppression

DISCLAIMER: I am not an autism expert. These are my opinions based on my research and lived experiences. Take from it what you will. This is a post about ableism. However, I do not intend this post to be definitive of all of the ways ableism impacts autistic lives. I am still learning, uncovering the layers of my own experience and listening deeply to the experience of other autistic people. This post is reflective of that learning. It should also be said that autistic people with higher support needs and comorbid conditions are likely to be hardest hit by the dehumanizing effects of ableism and in ways other than described in this post. Theirs and other autistic peoples’ experiences of ableism are valid. There is also the matter of intersectionality.  Not everyone experiencing oppression will experience it in the same way. [Intersectionality takes into account that a person might be experiencing discrimination from more than one system of oppression at the same time depending on their particular identity/ies. The more marginalized an autistic person’s identity is, (either by race, sexual or gender identity/expression, class, religion, etc.), the more likely it is that they will experience discrimination from multiple systems of oppression (in addition to ableism)]. With this in mind, this blogpost is an attempt to speak about ableism and the ways it shows up in autistic people’s lives – or at least in my life. 

Recently on Instagram, @neurodivergentactivist made the following post, “People need to stop perpetuating the idea that ableism is not that serious. It has a real impact on disabled people’s lives and rights. It is important to talk about, as other forms of oppression are.” … “It’s disappointing that ableism is rarely discussed outside of the disability community. And when it is, people often try to downplay it.”  https://www.instagram.com/p/CJmDIhjMrDK/?igshid=1d4ce0kfpnt0p

ABLEISM:

Wikipedia defines ableism as: “discrimination and social prejudice against people with disabilities and/or people who are perceived to be disabled… In ableist societies, disabled people are considered less valuable, or they are even seen as expendable…“

WHAT CAN BE DONE?

I’m going to start with what can be done. At the heart of any oppression is implicit bias – the bias invisible to us. Implicit bias is overcome with awareness – by listening to and believing the lived experiences of autistic people. With awareness (and the compassion it inevitably builds), implicit bias can be overwritten with new information. Information that allows autistic people to be accepted as they are. I hope by the end of this post, some understanding and empathy will have been achieved.

Disabled people deserve to be seen as fully human for many reasons, but the biggest is this: If we live long enough, all of us will be disabled eventually. How do you want to be treated when you get there??

I hope you will join me in helping dismantle ableism as a system of oppression. Perhaps this post will build some awareness or start a dialogue or help someone not feel quite as alone. 

WHAT IS ABLEISM?

It is incredibly difficult to talk about and point at your own oppression from inside it. Oppression is often crystal clear to those experiencing it, but invisible to others. Even those who would be allies.

A good place to start is to tell you that the life expectancy of an autistic person is just 54 years.

A series of studies done spanning the last 25 years show that there is a more than 20 year gap in the life expectancy of an autistic person compared with that of the average population. This holds true across the spectrum regardless of “functioning labels”. The causes are systemic – 1) a more than 9 times higher than average suicide rate due to the constant rejection, harrassment and exclusion faced by autistic people, 2) systemic discrimination within the medical system combined with higher risks for disease, and 3) systemic violence at the hands of law enforcement. (See sources below)

This is ableism and it is killing autistic people. 

In addition, there is a nearly 80% unemployment rate. The majority of these unemployed are not from a population incapable of work but of those being denied employment because of social exclusion and isolation. This social isolation also means that less than 10% of autistic people marry. 

Underpinning ableism is stigma, the deep misunderstanding of what autism is, and a dominant culture that requires autistic people to conform to neurotypical standards regardless of the harm inflicted. 

One way to describe this is to compare autistic people to the proverbial square peg being forced into the round hole of the unforgiving neurotypical standard. Damage is caused the more this is forced onto the autistic person.

It’s painful to think about how aversion therapies and having autistic children ingest bleach is seen as preferable to accepting autistic traits. How pushing autistic people to act neurotypical until they surpass their body’s capabilities and burnout or become too depressed to continue (or both) is commonplace. Or, after constant isolation, bullying, exclusion, harassment, they become hopeless and commit suicide. 

SOME WAYS ABLEISM PRESENTS FOR AUTISTIC PEOPLE: 

HARMFUL MESSAGES

Autistic people face a nearly constant barrage of messages shaming their autistic traits and telling them that the answer is to just act more neurotypical – no matter the personal cost.

This is not a viable solution, though. The lived experiences of autistic people show the poor mental health outcomes of such a strategy. 

MISUNDERSTANDINGS AND MISJUDGEMENTS

Misunderstandings and misjudgments are commonplace as autistic people do not present, respond or react as expected. Autistic behavior causes the “uncanny valley” response triggering unconscious repulsion.

The “uncanny valley” is a term coined by the robotics field to describe the irrational repulsion and hatred people respond with towards robots which appear too human. Some within the autistic community have adopted the term to describe the irrational response often aimed at autistic people. 

This response of uncanniness and repulsion makes it difficult for autistic people to be seen as sympathetic or needing help and compassion even though we are some of the most at risk within the Rejection is so common to the autistic lived experience that it is difficult community.

TRAUMA

Trauma is so common within the autistic experience that there is no psychiatric model for an autistic person in good mental health. 

In general, the autistic person’s system is more susceptible to stress, more easily traumatized, often more sensitive to sensory input and pain (although hypo-sensitive is equally valid), and takes longer to recover than a neurotypical person. When you combine this with the continual effects of living with the impact of ableism, the results can be devastating.

MASKING

In order to survive in a hostile world many autistic people, including me, have adopted a dangerous survival strategy called masking. Masking includes hiding stims (the self stimulatory behaviors which help regulate the autistic nervous system), mimicking neurotypical social behaviors and eye contact, hiding painful or uncomfortable sensory input, hiding confusion and distress. For those capable of doing so, masking can mean access to employment, housing, and even community and friendships. But, it comes at a great cost as doing so means deeply denying their true self and hiding all their struggles. This is exhausting and ultimately unsustainable as it leads to burnout and an impact on the autistic person’s mental health, sense of self and self confidence. (It’s important to note that not all autistic people are capable of masking or hiding their autistic traits).

UNINTENTIONAL GASLIGHTING

Unintentional gaslighting is a daily part of the autistic reality. This is the well meaning advice and straight up judgments of the neurotypical gaze. The “why didn’t you just’s. The “you should just try harder’s. The rewriting of the autistic person’s every reality, action and thought based on neurotypical norms. This gaslighting is so pernicious and pervasive that it leads to constantly questioning one’s own mind, reality and sense of worth and has a deep impact on many autistic people’s mental health. A common side affect of this gaslighting is alexithymia, a condition involving difficulty identifying and processing emotions. When one has been told their emotions are invalid or inappropriate their entire life, it creates confusion and difficulty identifying how one feels about things. This can have a deep impact on relationships and sense of self.

NOT BEING BELIEVED

Not being believed is central to the autistic lived experience. It’s hard to find words to describe the impact of this. It causes loneliness and isolation for sure and makes asking for help and support or pointing at problems which directly involve the autistic person an act of risking emotional harm or rejection. 

INFANTILIZATION

Infantilization is the speaking/acting for and assuming less of the autistic person. It does not ask or listen to their lived experience or allow them to speak for themselves. Ultimately, infantilization is a weapon of silencing. It should also be pointed out that infantilization has been used against many oppressed groups in the past including women, minorities, queer and young people, and the elderly. Infantilization ultimately means erasure and silencing of autistic voices which cannot stand. 

THE INTENTIONALLY MALICIOUS

This is the bully, the abuser, the manipulator. They can be subtle or aggressive, but always toxic and corrosive. The intentionally malicious are especially harmful in a population who often cannot ascertain people’s intentions. The autistic person is easily separated from the group and singled out for bullying and mistreatment. And, because they are less likely to be believed, getting help once this happens can be difficult. 

All of the above are examples of ableism. And, it is unbearable as all oppressions are.

Pointing at ableism in this way has done nothing to communicate the devastating effects of it. I have lost living situations, jobs, had to leave school, lost relationships, friendships and more due to these ableist patterns. I have had any number of bizarre social experiences marked by a kind of cruelty I will never understand. I do not know how to describe the fear curled in my belly because I cannot read other’s intentions. Nor can I describe the hours of my life I have spent worried that I may fail or have failed at some social interaction. Or the way I must practice carefully what I need to say if I have to share something difficult even with my most trusted and beloved.

Then there are the everyday indignities of not being believed in small and large ways. The being misjudged and misunderstood (which erodes my relationships). The living in a world not made with my neurology or my extra sensitive sensory system in mind. These take a toll over time and leave a deep mark on the psyche and spirit.

I am one of the lucky ones. My mental health has suffered, but remains remarkably intact. I have a family who love and accept me. I have a small handful of friends who have been supportive through the discovery and diagnosis of my autism. I know I am blessed compared to many neurodivergent people.

And, still my life has been marked with an isolation and loneliness that is hard to describe to the neurotypical. 

And, I have seen the dark side of human behavior – not just in the ways it isolates, excludes and others, but in the ways it hates and hurts. It baffles me.

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Note: * microaggressions are defined as: brief, commonplace, daily indignities that communicate bigotry, slights or insults.

Examples of the kind of microaggressions faced by autistic people include: 

  • the constant misjudgments, misunderstandings and not being believed common to the autistic experience
  • small or ongoing acts of isolation, exclusion, rejection,
  • speaking for/assuming the experience of an autistic person rather than listening to their experience
  • infantilizing autistic people or treating them in any way less than
  • putting the autistic person in a situation which they would have to risk emotional harm to navigate, 
  • putting the autistic person in situations they are incapable of navigating (such as complex social situations), 
  • misreading autistic stress and autistic anxiety as behavioral issues
  • misreading autistic shutdowns and meltdowns and emotional sensitivity (these are signs of extreme duress but are often interpreted as something else), 
  • etc..

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RESOURCES: 

Below are links to information regarding the studies on autism life expectancy:

https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2076

https://journals.sagepub.com/doi/10.1177/1362361319827412

This ia a video explaining the findings from one of my favorite autistic YouTubers: