Take the mask off: A campaign by autistics

** UPDATE 10/10/2019 – a new Camouflaging Autistic Traits Questionnaire (CAT-Q) has been developed and discussed in a research paper here (actual checklist p. 827).

Masking Definition:

“In short, because it’s an extensive thing, Masking is putting on a public face. It ranges from carrying scripts for conversations, to suppressing Stims – it’s ultimately the act of making yourself appear as non-autistic as possible in order to protect yourself and fit in, without ever really understanding what’s going. Its very complex and far broader than I’ve written here. It causes a paradox and ultimately you generally end up burning out (I’ll link something on burn out below)
Masking is now being identified as one of the major lead-in to the high Autistic suicide rate (not to scare you) amongst teens and older people (research also shows our rate of death ranges on average from 36-56).” Keiran Rose, Autistic Self Advocate
Masking video 1 hr Sara Jane Harvey (Agony Autie) will be interviewing, Kieran Rose – autistic self advocate, Hannah Molesworth (Do I look Autistic Yet?) and Christa Holmans (Neurodivergent Rebel)

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masking talks poster

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#TakeTheMaskOff Campaign – Week 1

What is masking? by Undercover Autie and What is masking? by the Pecan Gallery

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#TakeOffTheMask Campaign – Week 2

Stimming by INSIDE THE RAINBOW and autisticzebra
The link between the need to stim, masking to look “normal”, and poor mental well-being:
“When you mask, you suppress or adapt your stims. On top of having to think about what to say and when to say it, you have to suppress the urge to stim naturally. Maybe that will give you some indication of how social interaction can be so exhausting for autistic people?”

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#TakeTheMaskOff Campaign – Week 3

How Does Masking Effect Mental Health? by autisticzebra
And how to overcome this link between masking and well-being:
“The meeting of people who are the same, members of the same tribe, the same people, with the same cognitive style surpasses it [masking]. Being with other autistic people is easy, it’s stress free, blissful, it is pure freedom.
Freedom to be who we want to be, to talk how we want to talk and about whatever we want to talk about.
Freedom to be who we truly are.
We take off our masks and throw them away, we have no need for them. There is mutual respect for each others differences…
…We Mask to keep ourselves safe and to make non-Autistic people feel comfortable.
So, stop making them feel comfortable.
Show them what it is to be Autistic, literally flap it in their faces and be proud of it.
If you can do it safely, do it as well as you can.
If you can’t do it safely, talk about it where it is safe to do so, join the chorus of people saying “No more!””The Autistic Advocate

How does masking affect mental health? With Kieran Rose (The Autistic Advocate) and Kerrie from the North East Autism Society  arrow

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My mask is here to control my communication techniques. It is here because I don’t trust you to understand me. It is here because I chose it. I built it. I sculpted it. I had a thousand and one reasons to do that, and only one to undo it; because it’s heavy and I don’t need it anymore.
I have to trust that trying to live my life non-autistically hasn’t worked. The desired result has not been forthcoming.
Because when all is said and done, I don’t want to be surrounded by people who like my mask. I want to be surrounded by people who like me. Taking off the mask doesn’t mean I’ll achieve that, but keeping it on, guarantees I won’t.
If I can always be found in the logic, then there I shall be. In the logic and dancing in the rain, I hope to see you there.”AutistRhi

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#TakeTheMaskOff Campaign – Week 4

Autistic Burnoutand how it might be burnout, not depression – autisticzebra
The warning signs of Autistic Burnout are actually quite easy to spot if you know what to look for, either from an external point of view, as an observer, or loved one or internally, from an Autistic self’s point of view:

  • A growing lethargy
  • An increase in irritability
  • An increase in anxiety
  • An increase in over-sensitivity to sensory information
  • A dramatic decrease in sensitivity to sensory information
  • Heightened Auditory processing disorder
  • A decrease in verbal language
  • A decrease in text language
  • An increase in Shutdowns and heightened withdrawn state
  • An increase in the frequency and severity of Meltdowns
  • A diminished ability for the person to self-regulate their emotional state
  • The slowing down of the thought processes
  • Brain fog
  • Memory loss
  • A decrease in your ability to effectively communicate what you want
  • A decrease in motivation
  • An inability to generate momentum of body and of action
  • An increase of rigidity, narrowing of thinking
  • A feeling like your vision is tighter or narrower
  • Extreme forgetfulness
  • Extreme overwhelm
  • A massive increase in guilt
  • An increase in Executive Dysfunction
  • An increase in Demand Avoidance

Can you see why it’s often mistaken for Depression?” – The Autistic Advocate

What you can do about burnout:

On a basic level, allowing periods of withdrawal, or decompression time at the end of the day, or even throughout the day can make a big difference. Time where [you] can effectively take time to process what has happened throughout the day, shut off external sensory stimulation and basically be inside their own head for a period of time. You may also find that this helps with the level of and frequency of Meltdowns that occur. Especially if you [or your child] Mask and do the coke bottle thing of bottling up everything all day and exploding at home.
Adult or child you need to proper time to withdraw. So even at Social events or Social Situations having an escape plan ready is vitally important. A reason to leave either completely or temporarily, a quiet space or bolt-hole to enable whoever it is to just have some time away from people.
It’s really important to recognise also, that after significantly stimulating or potentially overwhelming events or periods, that the person may need a day or two off of work or school. This may not be realistic, but it is effective. Allowing this decompression time is incredibly important. It allows the Autistic brain and equally the senses, an adjustment period to reestablish whatever the person’s brain or body considers normal parameters.”

Once you’re in burnout, you need to learn to recognise and accept that you are.
There isn’t a huge amount you can do beyond throwing away that Mask as soon as possible and taking as much space as you can get with as minimal sensory input as possible. Some people find that doing hands on tasks helps them, others go for long walks, or immerse themselves in books and films.
Sometimes it drags on and on, sometimes you can see it coming and not be able to stop it. – The Autistic Advocate

And the lovely Agony Autie on:

“Autistic Meltdowns & Overload

Trigger & content warning: includes footage of meltdown, hitting and discussion of anxiety, trauma & self-harm/suicidal ideation.

What they are.
Why they happen.
What they feel like.
How to cope and help someone.” arrow

 

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#TakeTheMaskOff Campaign – Week 5

How diagnosis and/or self awareness of being autistic impact masking.

“Self-awareness impacts masking on a fundamental and deep level, because being aware about yourself, your strengths and limitations allows you to create strategies that you can use, instead of masking and mimicking a neurotypicals behavior. Self-awareness allows you to be more yourself than ever before, although it takes some time to actually achieve. However, once you’ve achieved a certain level of self-awareness, things become a little bit more easy afterwards.” – THE ASIAN ASPERGIRL

“That event [diagnosis] altered the narrative of my life by giving meaning to things I had felt were scattered and disconnected. It explained things I had never understood and which I had often tried to push to the edge of my consciousness. My diagnosis provided a framework I had lacked my entire life. It changed and is continuing to revise the story of Scott as I put the different pieces in place. It has given me access finally to perceive and hopefully work through things that are not directly related to autism. That may sound strange, but autism describes the way I experience … everything, including trauma. I have an autistic brain. That self-knowledge doesn’t just explain my autistic experience. As I work through my stories in that light, I can finally see and begin to understand all the other things as well….
My diagnosis altered my whole world and cast all the stories of my life in a new light. That process is ongoing and touches every part of who I am. My diagnosis did not, however, change the world in which I live. It’s no more safe today to stray outside the boundaries of “normal” than it was when I was a child working diligently to fix myself. I do not feel any safer today than I did then.” – Faith and Food
It’s important to remember that being aware that you are autistic and dropping the mask does not mean that the world around you has changed, so please keep yourself safe -SYA?.

But, diagnosis and self-awareness can lead to validation, which for many of us is incredibly important. Diagnosis (self or clinical) also allows many of us to drop our masks, to figure out who we are and be that person more. – see The Thinker for their take on validation.

How I masked and why I reduced it – Sasha Supertramp
Because yes, there was an age, when I was younger, when I was kind of copying people. Kind of absorbing their identities. Mirroring their body language, their tone of voice, their thought patterns, feeling their emotions. So much so that I’d stopped feeling myself.

I didn’t know who I was, what I felt or what I wanted – I remember being acutely aware of that fact at age 19. It took me another decade, or more, to start dissolving this (lack of) feeling, gradually.” 

It’s important to notice when you’re masking, and if you feel able to, to alter this behaviour: 

“Hey, I’m somehow starting to be fake. This feels like me going fake – why am I saying things that I’m not actually interested in? That I don’t mean? Why am I speaking in a voice that doesn’t sound like me? When did this start? It has a bad taste. Let me just shut up. Take a break. Feel. Reset this conversation. Change topic, change tone, or take a break. Because I know I’ll be sick and exhausted for hours even after an hour of fakeness over lunch.”

Neurodivergent Rebel – Diagnosis/Self awareness – How does it impact masking? arrow

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#TakeTheMaskOff Campaign – Week 6 

Coping Strategies Taking Off The Mask

Neurodivergent Rebel – Coping Strategies Taking Off The Mask arrow

 

Faith and Food on taking off the mask: arrow

“I consciously find ways now to manage sources of sensory overload. For me, much of that is tied to vision with touch next on the list. I bought night driving glasses and they help a lot. And sometimes if the inside lights are bright I’ll keep my sunglasses on, ignoring the voice in my head screaming about it being “weird”. I mostly don’t wear clothing that isn’t comfortable anymore instead of forcing myself to endure it and pretend it doesn’t bother me. I wear my headphones even more openly and constantly now than I used to. It’s a bunch of small things, but in aggregate they help.

I carry a smooth, metal fidget spinner. The sensation of spinning it even in my pocket and letting it hit my fingers is soothing. And the smooth metal also has something like a worry stone feel. I notice more when parts of my body are moving and instead of automatically suppressing it every time, I manage or redirect the movements but still try to express it in some way. I allow myself to enjoy things like spinning or once again letting my body move to music. Agony Autie calls it “stim dancing” and that term really fits for me. It saved my life in the late 80s during a really bad time in my life, and I also seem to have a bit of auditory synesthesia. Especially when surrounded by it, I feel music on my skin and in my muscles. It’s hard to describe. And again, it’s only since my diagnosis that I’ve slowly understood it’s not really the same thing most people mean when they talking about “feeling the music”.

So I’m not working to mask less. I am trying to mask more effectively with less unnecessary drain on my resources. And I’m trying to be kinder to myself in different ways. I can mask and still reduce sensory overload and consciously allow myself to stim in ways that aren’t overtly autistic to those around me. And I can let myself respond without restraint when I’m alone. That’s really more of an aspiration right now than a reality. Controlling my appearance is far too deeply ingrained in my psyche for me to ever simply stop. But I’m trying to relax my guard a little at least.

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#TakeTheMaskOff Campaign – Week 7

 How people have been affected by the week

Faith and Foods take on the Take the Mask off Campaign: arrow

“I could never, however, look and act “normal”, whatever that may be. And don’t tell me that there’s no such spectrum as “normal” and that everyone feels different and isolated at times. My therapist, who sees many such allistic people, tried to say that. And it’s simply not true. I understand that nobody can clearly define those boundaries of “normal”, those things which fall in the range of acceptable variation, versus the things that are not. I’ve often wished somebody could because I felt if I actually understood the rules, I could find a way to more closely adhere to them. But those rules exist in every human culture. And they are enforced, often without thought or intent but merely in reaction. Most people absorb them over time, especially as young children, so the rules all seem obvious and automatic. The social rules and nuances feel “natural” to allistic people. I didn’t and don’t simply absorb them and my “natural” behavior and reactions do not conform to them. I had to learn the rules through observation and experience, mostly as a child, as best I could. And violations of those unspoken, unwritten, and often unacknowledged rules mark you as less than human to other people.

Autistic masking is about avoiding harm and seeking acceptance. We all seem to have stories about both. I’ll mask less when I am loved, or at least not rejected, when I don’t. I’ll mask less when I can do so and still be safe. I’ll mask less when the world of people surrounding me grants me the freedom to be more visibly and outwardly myself, whatever that might be.”

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