There is no cure for autism spectrum disorder. One of the biggest challenges faced by individuals with autism is finding ways to be happy and successful in a neurotypical world that operates on different assumptions and “rules” than what feels natural to a brain with autism.
Many people on the autism spectrum feel obliged to pretend not to have autism. They invest considerable effort daily in monitoring and modifying their behavior to conform to conventions of non-autistic social behavior. This phenomenon has come to be called masking, compensation and pretending to be normal.
Masking is exactly what it sounds like, simply putting on a metaphorical mask. In many cases of the autism spectrum, that mask is a neurotypical (“normal”) one. It is when someone on the spectrum either consciously or subconsciously hides the telltale signs they are on the autism spectrum.
Many people, especially those of older generations have a strange perception that a child with an autism diagnosis somehow outgrows it, which is not true. Many simply get better at hiding it!
Researchers are now more closely examining how some people with autism spectrum disorder try to camouflage or compensate for their difficulties, and the price they pay emotionally, cognitively, and physically for doing so. Masking strategies are diverse. Some are relatively simple or develops rules to use eye contact in a conventional manner. Other masking strategies are elaborate and complex, developed via a careful, conscious and often protracted campaign of learning.
Subconscious masking is actually an innate survival mechanism, to stop one from standing out or revealing a weakness. Masking is like applying camouflage. Some who received a diagnosis at a young age are taught to mask by professionals who think hiding autism will make for an easier life for the youngster.
One major reason for masking is the desire or need to assimilate into society. They need to “blend in with the normal people” to be accepted and to get a job or similar opportunity. They do it for their physical safety and well-being. The other main motivation is to connect with others, both to build relationships and to reduce the stress of fearing they would say or do the wrong thing in a social situation.
The former includes playing a character who acts socially appropriately and creating “rules” for themselves in social situations that others might expect, even if they seemed unnecessary. Respondents described mimicking others’ behaviors (based on personal observation or even films or television), planning ahead for conversations (such as asking others questions instead of talking about themselves), forcing themselves to make and maintain eye contact, consciously trying to display facial expressions that expressed certain emotions, and suppressing behavior like stimming.
Autism is portrayed in the media as being something awful, something to be feared, contributing to feelings of needing to hide it. People with autism do it consciously as well as subconsciously. The perfect example of masking is when a child with autism behaves perfectly in school but comes home and explodes into a meltdown. Because in school they masked their autism. There is a price to be paid for masking, whether at the time or much later.
Even though masking for their difficulties may help people with autism spectrum disorder connect with others, get jobs, and successfully navigate social situations, accumulating research suggests it can also lead to exhaustion, burnout, anxiety, and depression. Masking is described by those people as being mentally, physically, and emotionally draining; requiring intensive concentration, self-control, and management of discomfort.
There is a price they pay for wearing their masks. Masking comes at a huge price. The cost of masking takes its toll. They do not fit in anywhere — at work, with friends, even in their family. Masking of autistic characteristics leads to negative outcomes, such as exhaustion, lack of support, and feeling like your true self is being hidden.
People on the autism spectrum who use making feel that they misrepresent their true selves and they are lying to others, with negative implications for their self-perception and self-esteem. Some feel relationships they develop while masking is false because they are based on deception, and others “feel that by hiding their autism characteristics, they are betraying the community of autism as a whole.” Some of them even fear greater public awareness of masking because it may out them.
The brain of someone with autism is wired and works differently to someone considered neurotypical. It can take a tremendous amount of effort and energy to make an autistic brain demonstrate behavior considered neurotypical. Someone once explained it as being a Mac in a word full of PCs. Or trying to run a petrol car after putting diesel in it.
Can you understand how hard masking is to maintain? You are at a party, you are talking to a friend, there is music blaring, faces, some you don’t know are everywhere. In your mind, you are telling yourself to focus on the conversation. Make eye contact, don’t wave your hands or flap, don’t say what you are thinking which is “I want to run away.” Smile, laugh at a joke whether you understand it or not and constantly try to keep the conversation flowing while inside anxiety has its hands gripped tightly around your neck, your heart is racing and your mind is working at a thousand miles an hour.
Masking is not letting any of this show. Masking is maintaining that conversation. Masking is appearing as normal as the next person, whatever normal may be. The cost is exhaustion. The ultimate cost of masking is burnout. Burnout is different from tiredness. It is being so tired you can’t move, you can’t think, so tired you can sleep for days, so tired there is nothing left. Inside you feel completely empty; there is just a thick dead blackness. So tired and broken that death seems welcoming. They can’t cope with what is considered “normal life.” They never have been able to.
Why are adults with autism driven to suicide? They live in a world where being different is feared, mocked and bullied. They need to teach children and adults that different is OK, different can be good, different is nothing to be afraid or ashamed of.
As a society, in today’s world, we are more autism aware, but we are no more accepting and I believe that is why the suicide rate among adults with autism is so high. People can’t thrive in a world where they don’t feel accepted. We have to learn to be accepting of differences. Then maybe this tragic trend will start to reverse.
Why Do People with Autism Masking?
When this question was asked to people on the spectrum, they mostly reply as avoiding the bullying. This is a typical response across studies. For many of them, masking is experienced as an obligation, rather than a choice. It is often motivated by a sense of alienation and threat and frequently represents an attempt to avoid ostracism and attacks.
Such findings offer a vivid reminder of the daily challenges people on the autism spectrum face: they show us the pervasive difficulties of being autistic in a world that is shaped by the non-autistic majority. When a person with autism does masking, it is an attempt to manage the mismatch between their natural way of being and the demands their social environment places on them. Everyone faces conflicts between authenticity and pragmatism, but for people with autism, this is often especially stark.
The Costs of Masking Autism for Girls
Masking can hide an individual’s difficulties, preventing them from being understood and helped. Unsurprisingly, it can delay or even prevent diagnosis. This appears to play an important role in the diagnostic biases against girls and women on the spectrum, who are more likely than boys and men to use masking strategies.
Girls blend in because so many more boys are diagnosed with autism than girls are, professionals don’t always think of autism when they see girls who are quiet or appear to be struggling socially. Girls who had been shuffled from one agency or doctor to another, often misdiagnosed with other conditions. Initially, there is no clue they need help or support with autism.
Autism looks different in girls. They couldn’t always show signs of their autism but got glimmers of a phenomenon they call masking. The researchers confirmed that, at least among women with high intelligence quotients (IQ), masking is common. Whereas boys with autism might be overactive or appear to misbehave, girls more often seem anxious or depressed.
Girls with autism tend to stay close to the other girls, weaving in and out of their activities. By contrast, boys with autism tend to play by themselves, off to the side. Professionals look for social isolation, among other things, to spot children on the spectrum. By using that criterion alone, they would miss many girls with autism.
Typical girls and boys play differently. While many boys are playing a sport, girls are often talking and gossiping and involved in intimate relationships. The typical girls would flit from group to group. The girls with autism appear to be doing the same thing, but what is actually happening is different: The girls with autism are rejected repeatedly from the groups but would persist or try to join another one. These girls may be more motivated to fit in than the boys are, so they work harder at it.
The standard tests may miss many girls with autism because they are designed to detect the condition in boys. For instance, the tests screen for restricted interests, but clinicians may not recognize the restricted interests girls with autism have. Boys with autism tend to obsess about things such as taxis, maps or U.S. presidents, but girls on the spectrum are often drawn to animals, dolls or celebrities — interests that closely resemble those of their typical peers and so fly under the radar.
Before scientists can create better screening tools, they need to characterize masking more precisely. Masking is the difference between how people seem in social contexts and what’s happening to them on the inside. If, for example, someone has intense autism traits but tends not to show it in her behavior, the disparity means she is masking. The definition is necessarily broad, allowing for any effort to mask an autism feature, from suppressing repetitive behaviors known as stimming or talk about obsessive interests to pretending to follow a conversation or imitating neurotypical behavior.
They use masking in order to connect with friends, find a good job or meet a romantic partner. Camouflaging well can land them a lucrative job. It helps them get through social interaction without there being a spotlight on their behavior or a giant letter A on their chest. They use masking to avoid punishment, to protect themselves from being shunned or attacked, or simply to be seen as ‘normal.’
The adults with autism describe an imaginative store of tools they call upon in different situations to avoid pain and gain acceptance. If, for example, someone has trouble starting a conversation, they might practice smiling first or prepare jokes as an ice-breaker. Many women develop a repertoire of personas for different audiences. They often practice in front of a mirror.
For example, before a job interview, they write down the questions they think they will be asked and then write down and memorize the answers. They have committed to memory four anecdotes they can tell about how they met a challenging deadline. Women on the spectrum often create similar rules and scripts for themselves for having conversations. To avoid speaking too much about a restricted interest, they may rehearse stories about other topics. To hide the full extent of her anxiety when she is “shaking inside” because, say, an event is not starting on time.
Some women say that, in particular, they put in a great deal of effort into disguising their stimming. For many people, stimming may be a way to self-soothe, self-regulate and relieve anxiety, among other things. And yet these motions which can include flapping hands, spinning, scratching and head-banging can also readily ‘out’ these people as having autism.
The most common method women use is redirecting their energy into less visible muscle movements, such as sucking and clenching their teeth or tensing and relaxing their thigh muscles. The majority also try to channel their need to stim into more socially acceptable movements, such as tapping a pen, doodling or playing with objects under the table.
Many of them try to confine their stimming to times when they are alone or in a safe place, such as with family. A few individuals try to prevent stimming altogether by way of sheer will or by restraining themselves, for example, by sitting on their hands.