Here is a harsh reality — there are elevated rates of mental health conditions such as depression and anxiety among autistic people (Cage & Troxell-Whitmann, 2019; Lever & Geurts, 2016). There is also higher suicidality in the autistic population compared to the general public with 66% of autistics having contemplated suicide compared to 17% in the general population (Cassidy, Bradley & Robinson, et al., 2014; Segers, 2014; Zahid & Upthegrove, 2017).
Further, autistic people who report engaging in or having more “autistic traits,” that is behaviors such as, hand-flapping, rocking, and other traits that are stereotypic of the autism spectrum as defined by clinical measures (e.g., the ADOS and the Autism Quotient), are at higher risk of mental health symptoms and suicidality (Pelton & Cassidy, 2017; Takara & Condo, 2014).
However, it is also true that autistic people who engage in masking or camouflaging their autism, i.e., hiding or suppressing those autistic traits, are ALSO at higher risk for these conditions and suicidality above and beyond other predictors such as employment status and gender identity (or assigned sex at birth in some research) (Cassidy et al., 2018).
In addition to these findings, it is well documented that society is often not supportive of the differences and neurodivergence of autism. That which goes against the norm is often condemned in our society. Not surprisingly, then, many autistic people end up using ways to blend in and camouflage in an attempt to be able to pass as neurotypical and “fit in.”
This may be imposed upon autistics. In fact, it is often taught or forced through very common and traditional behavioral educational approaches that promote compliance and conformity and the extinguishing of “autistic behaviors.” However, autistic individuals can also acquire similar skill sets implicitly, as it can be learned through observation of interactions between neurotypical peers, or from media sources. Collectively, these sets of techniques, strategies and processes of hiding or suppressing one’s natural autistic way of being are referred to as masking.
Masking may include:
- resisting or holding in natural responses to emotional experiences and states of energy arousal, such as flapping, rocking and echolalia
- mimicking the behaviors and ways of others (i.e., social mimicry),
- observing, memorizing and acting-out social scripts and non-verbal body language (from in-person interactions as well as TV, movies, reading, music and other sources),
- participating in activities and conversations that are not of interest but known to be preferred among similar-age peers,
- researching popular culture to be able to contribute to conversations,
- resisting one’s own needs and preferences,
- relying on others to talk and make decisions in a group,
- going with the flow as not to stand out,
- attempting to control all aspects of a social situation to create a greater sense of predictability,
- and many, many other strategies, tactics and processes.
Perhaps most importantly, masking is hardly ever just one or a few of these strategies, and it is not a rare or infrequent activity. Masking is using any and all strategies and keeping track of when and how to effectively use them. It is relentless vigilance to squelch what is natural and instead enact what is known to be the norm.
Masking is a lot of knowing precisely what to do (norms) and what not to do (do not be your authentic self), but not having any natural inclination towards what is supposed to be done and not having any understanding of or belief in why these are the norms and why such social ramifications exist for not conforming.
For many autistics, the mask stays on all or most of the time, and it has been found to be a very common experience for autistic people (Bargiela et al., 2016; Hull at al., 2017), though gender differences have also been observed. Whereas approximately 90% of autistic people reported having masked or camouflaged autistic traits, those who identified as female were found to engage in masking more frequently on a daily basis and for longer durations over the course of their lifetimes (Cassidy et al., 2018).
The reasons offered by autistic people for masking are varied and diverse. In one qualitative study, autistic young adults gave over 20 different reasons for masking including that it was what they must do to be taken seriously, to perform well at work, to reduce awkwardness, to be able to get along with peers or co-workers, to fit in, to get a job, to make friends and to appear responsible (Cage & Troxell-Whitman, 2019).
Many of these outcomes – getting a job, making friends, or being taken seriously, for example – could be considered positive and helpful for increased quality of life, and many are highly desired by autistic people. Furthermore, some autistic individuals are so adept at masking and passing as neurotypical, that they are “missed” in terms of receiving an autistic diagnosis. They may navigate their entire life or a large portion of it without a diagnosis and with everyone around them believing they are completely fine or even thriving.
There are many accounts of autistic people highly skilled at masking being regarded as “model students” by their teachers or funny, witty, and charismatic by their peers – so, is masking a good thing?
Being able to “PASS” for neurotypical is not a Positive Outcome.
As described above, the presentation of stereotypical “autistic traits” is related to poorer mental health and increased risk for suicidality, so is there a positive side to suppressing these traits and masking? The short answer is, NO. Though much more research, and particularly research that is inclusive of autistic researchers and input from the autistic community is severely needed, what we do know is that masking comes at a very high cost despite helping the person to navigate their day without attracting attention. For example:
- Associated with higher rates of mental health symptoms and conditions
⬧ Depression (Stewart et al., 2006)
⬧ Anxiety (Gillott & Standen, 2007)
⬧ Social Anxiety (Maddox & White, 2015)
- Associated with more frequently reported Post Traumatic Stress Symptoms (Kupferstein, 2018)
- Related stress may contribute to shorter average lifespan among autistics (36 years; American Journal of Public Health, 2017)
- Associated with more frequent suicidal ideation (Cassidy et al., 2014)
- Associated with higher rates of suicide (Hirvikoski et al., 2016)
- Predictor of misdiagnosis or missed diagnosis (Lai, 2015)
- Associated with ‘Autistic Burnout’ (i.e., extreme fatigue and inability to function that has been reported after prolonged periods of masking autistic traits) (Autistic Women & Nonbinary Network, 2018).
Why the connection? What are the links between masking and mental health symptoms?
Research is currently lacking in terms of WHY this connection exits, but anecdotally, the autistic community has shared many personal and powerful pieces about it.
Masking is not natural. It is forced. To me, masking is kind of like putting on a show all the time, if the show is being performed in a foreign language, and the venue and scenery both change constantly without warning, and the audience is hostile and no matter what you do, it always seems to appear that the other actors and actresses cast in the show are naturals and they are waiting for you… perhaps it’s your line? Perhaps you’re supposed to exit stage left? Perhaps this moment of silence is simply written into the script?
And you never know how your performance was rated or received, except for the fact that you keep on getting asked to play this part. It’s doing things you know you are supposed to do because you have seen them done multiple times in X situation so long as person Y says Z and A, B, or C. It is a long and exhausting script of which you have no understanding, and it is further complicated by the fact that hardly any of the lines or plot action are natural responses for you or what you would have predicted based on what you see and how you interpret the world.
This act takes constant vigilance, control, and effort, and it is not only exhausting, but extremely damaging. It is damaging physically, mentally, and emotionally. It wears you down and drains your cognitive energy and resources; it makes you feel physically weak and exhausted; and it reinforces to you that you cannot be you; that your natural ways are not acceptable and that the world would rather suck the life out of you each day than experience your authentic self, which might be the most damaging of all.
Given what we know about invalidating personal experience and identity, suppressing what is natural regarding emotional experience and expression, physiological stress responses generally, and how duration and intensity can influence all of these, the link between masking and mental health comes as no surprise to those of us who have worn or must continue to wear the mask.
How can I help?
- Validate – all behavior serves a function and may be the way an autistic person communicates their energy or emotional state. Strive to understand their experience rather than change how it is expressed. Learn from the experience of autistics, rather than comparing the experience to that of neurotypical people. Don’t forget that if someone is “taking off the mask,” what you thought you knew may not be their true experience.
- Question – any programs, therapies, interventions, strategies and plans that attempt to get rid of behaviors because they are different from the norm. There is a lot of emphasis on “normal,” but it is this very notion that is problematic for those who do and do not mask!
- Feed the need – don’t hold hostage the very activities and coping mechanisms an autistic person uses to regulate. Token economies and reward systems are common in behavior management. These strategies are problematic for many reasons, including the fact that they often use needs (e.g., food, physical activity, rest, solitude, stimming) as rewards for task completion or compliance.
- Advocate and Educate – fight to ensure you, your child, your loved one, friend, co-worker (etc.) have the supports they need and that their way of being is understood by those around them.
- Use Caution – “taking off the mask” is a privilege. Some are not in a position to do so. Some have masked so long they are unsure what is the mask and what is the self. It takes years to build the mask, and it can be hard to remove even when it is desired.
References
Autistic Women & Nonbinary Network (2017). What is Autistic Burnout?
Cage, E., & Troxell-Whitman, Z. (2019). Understanding the reasons, contexts and costs of camouflaging
for autistic adults. Journal of autism and developmental disorders, 49( 5), 1899-1911.
Cassidy, S. A., Bradley, L., Bowen, E., Wigham, S., & Rodgers, J. (2018). Measurement properties of tools used to assess suicidality in autistic and general population adults: a systematic review. Clinical Psychology Review, 62, 56-70.
Cassidy, S., Bradley, P., Robinson, J., Allison, C., McHugh, M., & Baron-Cohen, S. (2014). Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: a clinical cohort study. The Lancet Psychiatry, 1(2), 142-147.
Gillott, A., & Standen, P. J. (2007). Levels of anxiety and sources of stress in adults with autism. Journal of intellectual disabilities, 11(4), 359-370.
Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S. (2016). Premature mortality in autism spectrum disorder. The British Journal of Psychiatry, 208(3), 232-238.
Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism, 4(1), 19-29.
Lai, M. C., & Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. The Lancet Psychiatry, 2( 11), 1013-1027.
Lever, A. G., & Geurts, H. M. (2016). Psychiatric co-occurring symptoms and disorders in young, middle-aged, and older adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(6), 1916-1930.
Maddox, B. B., & White, S. W. (2015). Comorbid social anxiety disorder in adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(12), 3949-3960.
Pelton, M. K., & Cassidy, S. A. (2017). Are autistic traits associated with suicidality? A test of the interpersonal-psychological theory of suicide in a non-clinical young adult sample. Autism research, 10(11), 1891-1904.
Segers, M., & Rawana, J. (2014). What do we know about suicidality in autism spectrum disorders? A systematic review. Autism Research, 7(4), 507-521.
Stewart, M. E., Barnard, L., Pearson, J., Hasan, R., & O’Brien, G. (2006). Presentation of depression in autism and Asperger syndrome: A review. Autism, 10(1), 103-116.
Zahid, S., & Upthegrove, R. (2017). Suicidality in autistic Spectrum disorders. Crisis.
A partnership of two developmental psychologists, one neurodivergent (Dr. JÂcqûelyn Fede) and the other neurotypical (Dr. Amy Laurent).Our philosophy is that through education, accessible resources, practical strategies and a commitment to consistently incorporating the experiences and perspectives of autistic people, we can support the leveling up of society when it comes to autism and neurodiversity. Of course, our primary goal is to support autistic individuals, but the more we are able to spread real awareness and support others in moving from awareness to acceptance, acceptance to appreciation, appreciation to empowerment and from empowerment to advocacy, the more positive change we will see at those large institutional and societal levels that can greatly benefit the autistic community. So we do aim first and foremost to empower autistic individuals to navigate their world, but we also aim to make the world a more autism-friendly environment and the universe more accommodating to the neurodiverse - after all, it is a partnership and change should not rest solely on the shoulders of the autistic community.
- Masking and Mental Health Implications - October 5, 2020
- So, you want to Autism Level UP!? …Game on! - March 26, 2020
14 Responses
Informative article – this last bit however I find heartbreaking: “Some have masked so long they are unsure what is the mask and what is the self. It takes years to build the mask, and it can be hard to remove even when it is desired.”
I am 57 years old and learned at 53 that I am autistic. While that knowledge explained a great deal about my behaviour as a child and into adulthood, I now have masked for so long I don’t know who I am without constantly pretending to be society’s definition of “normal”. Even my husband and friends seemed to be shocked by the “diagnosis”. I think they don’t believe me, actually. I play an online fantasy game (Guild Wars 2) in which I engage ‘socially” with other players, and even there I mask. Once in awhile my authentic self arises, which usually consists of an impromptu mini-lecture on any number of my favourite subjects. Some people truly appreciate me for that, while others are angry, jealous, or dismissive. For every person who reacts badly to my “real self”, I mask all the more. I barely know how to be authentic, and like many autists, I have severe depression and constant suicidal ideation. I feel I will live the rest of my life in this limbo, always hoping to be accepted for who I am but never receiving that acceptance.
I think it’s still masking even if you know “why” you are going along with a social expectation. It’s not a choice if it’s what you must do to keep a job or a community.
I’m 57. By now, I’ve figured out the why of a lot of my masking and experienced severe punishments for slipping up. This included a period of being homeless after being laid off, which wrecked my physical health.
There isn’t anywhere to go where the mask can be fully removed, except alone at home.
I have my true self, but there is a lot of it that I only share with select people. The need to keep the mask on to try to stay employed meant that I have not been able to give my true self the development I needed. This further reduces my survival reserves and social network.
It’s very much like being in the closet, which I have also experienced. The same kind of people who will discriminate against LGBTO are often likely to be ableist.
So now I surround myself with concentric circles of openness. I know I’m breaking gender expectations by not being open, but coming out of my various closets would be unsafe, so I carry the burden of being seen as a cold, unfriendly or even mechanical woman. It’s not that the warm human isn’t there. It’s that I can’t allow authoritarians to really see it. They will pass judgement and punish.
I’m less depressed than I am resigned to the role of the enemy. I did not ask for this, it comes from being different in a mostly conservative society.
I was diagnosed recently at age 57. In my late 40s, I worked in a rather toxic workplace. When things went bad for me, the HR Manager encouraged me to lighten up and “be myself” – that people might like “the real me” if only I wasn’t so focused on just the work. I tried being myself. Shortly afterwards, I was pressed to resign.
Many people have told me I’m an expert at masking and I can easily pass for neurotypical. At first this sounded good, then I realised the truth about masking and now I hate doing it. Since I graduated university I really haven’t put much effort into masking because I’m just so sick and tired of it. The problem is I don’t know how the hell I’m supposed to accomplish anything without masking because every process and system in our society is designed exclusively for neurotypicals.
Masking, for those of us diagnosed as older adults, is often difficult to ‘see, find or understand’. I now see that my ‘larking about’ in the supermarket, something I’ve done forever (now in my 60’s) was a strategy to be able to deal with something I hate. I actually thought everybody had the same or a similar experience, to me in large shops before my diagnosis. Masking, I now know, is stressful and has a negative effect on both physical and mental health but the trouble is, what is masking/brainwashing and what is ‘me’? I haven’t a clue. As an autism professional, I can and do help others who have been recently diagnosed to embrace stimming, and find what works for them, that seems to help, but as somebody else has commented, that’s fine apart from when you’ll get rejected for promotion, or worse. So for those non-Autists who may be reading this as interested parents of an Autistic child, or teacher of the same, please don’t teach kids not too stim, indeed encourage it.