#TakeTheMaskOff Campaign Created to Encourage Autistics to 'Unmask'
Most everyone knows what it’s like to adapt to a social situation or change your behavior slightly to make a good first impression. Sometimes, this leads to what many in the autism community call “masking.” No matter if you’re neurodiverse or neurotypical, most of us have tweaked our personality in certain situations to “fit in,” especially if we feel vulnerable or self-conscious.
Kieran Rose, who runs the blog The Autistic Advocate, and Hannah Molesworth, who runs Do I Look Autistic Yet?, wanted to address “masking” as it relates to the autism community. They created the hashtag #TakeTheMaskOff to raise awareness about the impact of masking and to help autistics feel more confident. They also hope to raise awareness so non-autistic people can create an environment that allows people on the spectrum to be themselves. Masking is detrimental to autistic people, Rose explained:
We shouldn’t need to so totally suppress who we are, to the point where late-diagnosed people literally fall to pieces after diagnosis, because they realize much of their life has been spent holding themselves in; where autistic children can’t cope in school because the environment is like torture, so they end up burning out and self-harming or committing suicide; where autistic people can’t get jobs, or get pushed out of jobs because they disclose that they are autistic.
The #TakeTheMaskOff campaign started on July 23 and will continue until Sept. 10. During this period, the campaign’s organizers — Rose, Christa Holmans, also known as the Neurodivergent Rebel, Molesworth, and Agony Autie — will be posting blogs, tweets, videos and other content about masking.
In the autism community, masking becomes the “constant suppression of one’s autistic self,” Rose told The Mighty. This may include holding in stims or forcing yourself to make eye contact. People on the spectrum might run through “scripts” in their heads for every possible route a social situation may take, analyzing the interaction more intensely to prevent standing out.
An autistic person may act like the sensory environment is not bothering them even if they are in pain or discomfort, Holmans told The Mighty. “They may suppress stims and other self-soothing and regulatory behaviors, or engage in behaviors that make the person uncomfortable, such as forced eye-contact,” she said, adding:
They may spend excessive amounts of energy during social interactions micro-analyzing themselves wondering if they are coming off wrong (can induce social anxiety) — ‘Am I talking too much?’ ‘Did I say the right thing?’ ‘Should I speak now?’ ‘Was that too offensive?’ All of this happens behind the scenes and eats up brain power and kills self-esteem.
The constant alertness needed for masking leads to exhaustion and burnout. For Rose, the effects of masking has been catastrophic and contributed to suicide attempts.
A recent study found that autistic adults who “camouflage,”another word for masking, are at a higher risk for suicide. People on the spectrum are already at a high risk for suicide.
“Autistic people can be tremendous actors, but we pay an immense cost for it,” Rose said. “We learn from an early age that many of the things that make us feel comfortable make neurotypical people uncomfortable… So we are isolated, excluded, viewed as broken or damaged. Cures are sought to fix us. Treatments devised to make us fit in.”
While there may be certain situations where masking is needed, such as during times when a person feels vulnerable or unsafe, there aren’t benefits to it, Rose added.
“Masking is exhausting and although there may be benefits (having a well-developed mask has helped me to do well in the work world), it comes at a cost,” Holmans said. “Trying to be someone you’re not is exhausting, mentally and physically. People who meet me when I’m masking don’t get to see or know the real me. What message are we sending autistic children when we tell them that the natural way they are isn’t good enough?”
Rose said that masking is a reason why girls aren’t diagnosed as much as boys. It isn’t that boys are more likely to be on the spectrum. It’s that girls are better at masking with social skills, so autism often goes undiagnosed.
Changing behaviors to help build social skills is a major part of behavioral therapies for people on the spectrum, such as applied behavioral analysis. ABA therapy is highly controversial as many autistic advocates say it makes people on the spectrum into “robots” by training them to react a certain way.
“I want parents who put their children through behavioral therapies to see what they are doing to their children,” Rose said. “Behavioral therapies force masking. It’s hard to say and probably harder to read, but people that put their autistic children through this, are potentially creating a legacy of harm for them. If the outcome of masking is burnout and potentially suicide, what is the outcome of forced masking going to be?”
Holmans joined the campaign because unmasking helped her mental health, and to let autistic people know that they are enough. She said:
I hope this campaign encourages auties everywhere to feel empowered and be proud of who they are. [They] don’t need to and shouldn’t change to suit other people. I also hope non-autistic people read and learn about autism because it would be easier to take the mask off if non-autistic people understood autism.
Those interested in joining the campaign can follow along on Twitter using the hashtag #TakeTheMaskOff. You can find previous weeks’ topics through the hashtag as well as through the Twitter and Facebook accounts and blogs from the organizers.
— TheAutisticAdvocate (@KieranRose7) June 19, 2018
Photo via Getty Images/francescoch