1/19

Full paper: https://www.liebertpub.com/doi/full/10.1089/aut.2020.0083

AccessibleAcademia

Nothing about us without us
Who: Miller and colleagues
Journal: Autism in Adulthood
Published: 2021
Title: ‘‘Masking Is Life’’: Experiences of Masking in Autistic and Nonautistic Adults

Masking

“Masking” is a term used by the autistic community to describe the conscious or unconscious suppression of aspects of the self & identity in order to “fly under the radar”. Masking is an umbrella term which encompasses experiences like “camouflaging”, “compensation”, and “adaptive morphing”.

2/19

Masking has been proposed as one explanation for gender disparities in diagnosis, late diagnosis, and has been linked to mental health difficulties, burnout, and suicidality.

Much research has focused on masking as an autistic specific experience, designed to help one “pass” as neurotypical and avoid stigma.

Other groups with stigmatized characteristics also engage in similar concealment & contextual identity shifting. However, there is little research into the similarities and differences between the masking behaviours of different groups.

3/19

The Participants:

They recruited participants via Facebook & Twitter.

144 autistic people
(self-identified or professionally diagnosed)
(101 female, 28 male, 15 nonbinary)

49 neurodivergent people
(neurodevelopmental, neurological, or mental health differences)
(42 female, 4 male, 3 nonbinary)

45 neurotypical people
(38 female, 3 male, 4 nonbinary)

4/19

The Study:

There was a larger questionnaire, but this study focused on the answers to this open text box prompt:
“please use this section to write down any experiences of masking your difficulties, or any opinions of masking you may have.”

5/19

The Results:

There were seven themes; only one was specific to autistic experiences (Neurotype Nuances). There seems to be a lot of overlap in experiences of masking in different groups.

6/19

Themes:
1) External Manifestations: What is seen by others
2) “Life is masking, masking is life”: Internal Identity & Loss
3) “A huge emotional & physical toll” Masking as a resource drain
4) Neurotype Nuances (autistic group only)
5) “No one believes me”: External Consequences
6) “Masking is the language of NTs”: External Influences
7) Time

7/19

Theme 1: External Manifestations

“I copy people’s phrases, and dress sense too
(autistic, f, 41)”

“Growing up I studied facial features, behaviours, and body language to mimic more accurately
(ND, f, 21)”

“I used to copy friends and practice in front of the mirror as a child
(NT, f, 54)”

8/19

Theme 2: Internal Identity & Loss

“Life is masking, masking is life
(Autistic, f, 35)”

“I feel that I am grieving for the little girl who just wanted her own space and peace to read and play with dolls. She was forced to be someone else. I feel as though I am wearing a different person. I don’t know where I went, or who I could have become if I hadn’t been forced to be someone else
(NT, f, 48)”

9/19

Theme 2: Internal Identity & Loss

“I have a lower sense of self than most seem to. I feel foreign to myself because all the behaviours I’ve adopted to mask have been to keep myself safe, but they’ve also boxed me into a corner and stifled me
(NT, nonbinary, 23)”

10/19

Theme 3: Masking as a resource drain

“I can manage to exist in an NT world as long as I’m ok mentally, if I’m stressed, it all turns to jelly, as do I
(Autistic, m, 57)”

“I didn’t learn that I only get suicidal during meltdowns until I removed all masking obligations. I spent 13 years burnt out
(Autistic, nonbinary, 34)”

11/19

Theme 3: Masking as a resource drain

“I used to use alcohol to do it, but recently I gave it up so masking has become more difficult
(Autistic, f, 24)”

“In order to try and fit in somewhere… I have suffered with Anorexia Nervosa for 8 years
(Autistic, f, 29)”

12/19

Theme 4: Neurotype Nuances (autism-specific)

“I frequently mask sensory differences such as pain due to sounds with too high pitch, too low pitch, or too high volume
(Autistic, f, 22)”

“Sensory processing difficulties, particularly auditory, make masking tougher
(Autistic, nonbinary, 25)”

13/19

Theme 4: Neurotype Nuances (autism-specific)

“Many of us hide stimming by choosing discreet stims
(Autistic, f, 22)”

“The worst part is not being able to stim when I need to
(Autistic, f, 49)”

14/19

Theme 5: External Consequences

“The only person in the world that even begins to know the real me is my husband
(Autistic, f, 49)”

“Some people who were friends before are puzzled by this different me… It’s scary for me
(Autistic, m, 48)”

“I have struggles to be myself… Yet doctors claim there is nothing wrong with me
(NT, f, 22)”

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Theme 5: External Consequences

“I have chronic pain. It’s a new normal for me, however it also makes it difficult to talk about because people the look at me and say ‘I know but you look fine’
(ND, f, 31)”

“My ex told me that I was faking being autistic
(Autistic, nonbinary, 21)”

“I have never been able to mask, which is why I have always been a target for bullying and abuse
(Autistic, f, 36)”

16/19

Theme 6: External Influences

“Masking is the language of NTs, it’s not a direct language but an automatic one that autistics have to learn, it takes years and even then there is no perfection to it
(Autistic, f, 41)”

“I grew up believing that my love for science, nature, and mechanics was for nerds and I learned that nerd were harassed. So I learned to study, analyse and mimic the popular kids. Like I was preparing to survive something intense: social interactions
(ND, m, 32)”

17/19

Theme 7: Time

“I have used masking from a very young age because I thought I was broken
(Autistic, nonbinary, 18)”

“I think I am very good at masking, so good I’m struggling to tell what’s mask and what’s not
(ND, m, 33)”

“I have spent my life masking without knowing I was doing it
(ND, f, 47)”

18/19

Theme 7: Time

“I have just cried through the questions [this study] realising how hard things have been for me
(NT, f, 36)”

“It’s very hard to pick apart what you have been masking as you don’t know what’s normal. You begin unravelling all the examples throughout your life, it takes a huge emotional and physical toll. I find it confusing how I have coped before and now I cannot
(ND, f, 36)”

19/19

Theme 7: Time

“It was only through talking to my therapist about masking that I realised I’d been doing it my entire life. I just assumed that social situations were mentally taxing for everyone and that everyone was exhausted
(Autistic, m, 36)”

“It has become harder to mask as I have gotten older and the menopause has ramped up the anxiety no end
(NT, f, 50)”

“Masking has become more difficult to continue over the years, so now I don’t do it as much
(Autistic, f, 35)”