Why do so many autistic adults feel exhausted just by existing?
Adult autism is often undiagnosed, yet the symptoms experienced are incredibly real and debilitating. Autism mental health must be better understood by clinicians so that individuals can receive the support they need.
Autistic adults frequently report feeling “burnt out” when completing their daily routines. This includes attending educational classes, functioning at their jobs, and carrying out social roles, such as being a partner and parent.
Neurotypical folks often perform these roles without the same kind of exhaustion reported by neurodivergent individuals. Autistic individuals need to understand why this occurs, and clinicians working with them need to know how to help manage this very real daily experience.
This leads us to the concept of masking in ASD, which plays a role in this burnout and feeling of exhaustion. You might wonder, what is masking? Is it something that I do? Is it only relevant for individuals with adult autism?
Actually, no. Masking can be done by individuals who are both neurodivergent and neurotypical. Neurotypical individuals will report masking in certain situations to try to “fit in” or be perceived by others in a certain way. However, autistic individuals will report very high levels of masking as compared to individuals without autism. There are very real psychological consequences to masking, and it takes a hefty toll on individuals when masking is something done daily.
Adult autism assessments and diagnoses are on the rise. More individuals are recognizing they have been living with symptoms they don’t understand and want clarity. Adults who have been living with masking and autistic symptoms must be able to understand this neurodevelopmental disorder and how it impacts them. Clinicians also need to recognize the toll of masking and how to identify autistic adults in their practice and refer them for diagnosis and/or treatment strategies. This blog will explore autism mental health, ASD masking and provide essential and helpful insight.
What Does “Masking” Mean for Autistic Adults?
Masking in ASD occurs in several ways. In the following paragraphs, we will review what it means to “mask” for autistic adults and how this typically presents.
It is important to understand that challenges with social emotional reciprocity are one of the defining features of adult autism (autism at any age, for that matter). What does this difficulty mean? It means that the “typical” social-emotional back-and-forth within relationships is impaired for autistic individuals. It does not come naturally. Without it, relationships can become strained or are non-existent to begin with. To establish relationships with neurotypical individuals, autistic individuals will learn what they need to do to fit in.
Masking in ASD includes a variety of different behaviours:
- Making eye contact during conversation (when this might not feel natural or automatic)
- Using learned phrases and pre-prepared humour in conversation
- Imitating others’ social behaviours
- Copying others’ facial expressions or gestures
- Learning how to engage in social scripts that commonly take place
- Speak at a different pace, tone or volume when around others to match their interactional style
This behaviour can occur consciously or in a very automatic way, especially when the behaviour has been practiced over time and in different situations. Individuals will learn these behaviours for a variety of reasons. This may include: avoiding bullying, feeling excluded or being misunderstood by others.
A qualitative study was conducted by Hull et al. 2017. These researchers interviewed 92 individuals with Autism Spectrum Condition to understand different reasons why masking might happen. They referred to masking under the umbrella of camouflaging.
They found the following themes regarding the occurrence and understanding of camouflaging:
- Motivations for camouflaging included: fitting in and increasing connections with others
- Camouflage (as defined in the study) comprised a combination of masking and compensation techniques
- Short- and long-term consequences of camouflaging included “exhaustion, challenging stereotypes and threats to self-perception”
Researchers have cited the costs of camouflaging. For example, Cage & Troxell-Whitman (2019) found that adults who masked frequently reported higher levels of stress and emotional exhaustion. It has also been cited that masking might lead to a later ASD diagnosis due to the ability of individuals to “fit in” and “appear” similar to neurotypical folks. However, individuals will cite knowing that something is not right, and there was a tremendous toll to try and fit in for so many years before receiving a diagnosis. Research has also found that autistic women tend to camouflage to a greater degree than autistic men.
The following imaginary clinical vignette illustrates the types of masking that can occur during adult autism. It is based on years of Dr. Taube-Schiff’s clinical experience, but in no way resembles any actual clients seen. It is purely fictional.
Sara, 35, was diagnosed as autistic at the age of 33. During the adult autism assessment, she reported how, in childhood, she copied how “popular” girls behaved to avoid teasing. She would often ensure she was engaging in eye contact with others and would hide her stimming behaviour of humming.
She often found this behaviour to be very soothing, but realized it made others uncomfortable. As an adult, she spoke about mirroring the communication style of her colleagues. She would often rehearse and prepare scripts before any social events, so she would be prepared with a variety of topics she could use during small talk.
When speaking about this with her assessor, she was unaware that this was all part of a behavioural repertoire that is called masking. She felt she was “being polite” and ensured that others felt comfortable in her presence (as much as she could gauge). However, she did describe social situations as “draining, like acting in a play that never ends.”
When conducting adult autism assessments, clinicians need to understand and assess for this type of commonly seen masking. There are validated self-report measures that do assess masking, as well as important qualitative interviews that should be conducted with both the individual and collateral in their world. However, it is also important to acknowledge that understanding autism mental health means knowing how common masking is and that you often can no longer “see” neurodivergent behaviours in adulthood due to ongoing masking efforts.
What Are the Signs and Long-Term Effects of Masking?
If you are or suspect you might be autistic, you might wonder – Am I masking? How would I know if I am? How might this impact be over time? These are important questions to ask in order to better understand yourself and your overall well-being. We will review ways to find out about masking behaviours and how they might impact you over time.
Research has found that there is a significant cognitive “load” or effort when one engages in masking on a regular basis. It can certainly be exhausting, and individuals may report elevated levels of stress, feelings of anxiety and depression and possible negative effects on the development of one’s self-identity.
Livingston et. al (2020) recently found that chronic masking is associated with burnout, overall decreased well-being, as well as delayed diagnosis.
It can be helpful to understand some of the key signs that masking might be occurring. Have you ever noticed these behaviours?
- Difficulty relaxing or “being oneself” in any type of social context or social situation
- Frequent reliance on social scripts, imitation of others, or ongoing internal rehearsal when in social situations
- Feelings of exhaustion after socializing
- Double life: “high-functioning” in public, emotional shutdown at home
Of course, there are significant psychological impacts that people experience as a result of chronic masking. These include:
- Chronic anxiety, depression, and self-doubt
- Erosion of authentic identity: “Who am I really?”
- Difficulty forming deep, trusting relationships
- Risk of misdiagnosis (e.g., generalized anxiety, personality pathology)
It is important to expand on the idea of misdiagnosis of adult autism. Within our own clinical practice at Forward Thinking Psychological Services ®, we have seen individuals presenting with a wide variety of diagnostic issues prior to receiving a proper diagnosis of adult autism. We know this is not unique to our clinic. Why does this happen? It can happen for a number of reasons. There are features of autism that appear within other diagnostic presentations as well. For example, emotion dysregulation is commonly cited within the context of autism mental health. However, emotion dysregulation is not unique to autism. Therefore, it is essential that diagnostic services are sought at a clinic that will engage in a comprehensive autism mental health assessment.
A comprehensive autism mental health assessment must include many different elements, including in-depth clinical interviews (capturing historical and present-day information), collateral information as available, mental health assessments, validated self-report measures and possible review of school report cards. Comprehensive assessments lead to more accurate diagnoses and provide the ability for an individual to explain their history over several sessions.
How Can Therapy Become a Safe Space to Unmask?
It is critical that individuals seeking therapy find a safe space in which they can “unmask” and not try to match the style of their therapist or behave in a way that feels consistent with “what therapy should be”.
The role of the therapist is often essential in neurodiversity-affirming care. When you are seeking therapeutic support, you can ask about the ways in which therapy is provided to fully understand if this will be a space that allows you to feel comfortable and unguarded.
Neuro-affirming care allows:
- Individuals to feel respected for who they actually are and be appreciated for their diversity
- Individuals to unmask in a safe environment and begin to understand themselves in a manner they might not have been able to before
- Reductions in stigma and discrimination, and embraces enhanced social inclusion.
Therapists have an important role to play during sessions with neurodivergent folks. We know that ASD masking occurs, especially in adults. It is essential to enhance comfort within the context of the therapeutic space in order to ensure that services provided are meaningful and authentic.
As an autistic adult, you also want to ensure you are not masking in therapy sessions and can start to learn more about who you are, underneath the mask. Here are some ways that therapists play a significant role in creating a safe space to unmask:
- Validate the reasons that masking has occurred in the past and continues presently: safety, acceptance, survival
- Create a safe space in which all authentic expressions are welcome without judgment or labelling
- Normalize and welcome stimming into the therapeutic space, as it often serves as a means of self-soothing and healthy regulation
- Ensure individuals do not feel they need to “fix” autistic traits, especially within the therapeutic space
- Discuss how and why some of these traits might be “challenging” in the non-therapeutic space – are there helpful strategies to manage these traits outside of therapy?
- Agree that individuals are comfortable with being asked whether they are “masking” or if they truly feel a certain way, allowing time and space to talk about alternative ways that someone might actually feel
- Check in as to whether the therapy space is feeling safe. If not, brainstorm collaboratively what might be important to work on over time to create a safe space for the important work to take place
The following imaginary clinical vignette illustrates the types of masking that can occur during therapy sessions and how to work together to overcome this. It is based on years of Dr. Taube-Schiff’s clinical experience, but in no way resembles any actual clients seen. It is purely fictional.
Maya, 31, was diagnosed with adult autism and had been masking her whole life. She learned during her adult ASD assessment that her levels of masking were very high. She decided to begin to work with a therapist to be able to explore the ways in which autism had impacted her life and how she wants to move forward at work and in her relationships.
She began therapy masking heavily, as she did in all areas of her life. Her therapist noticed that she was often over-apologizing, smiling constantly, and copying therapeutic language she had read about on the internet. Her therapist gently pointed out times when the masking was occurring, and they created ideas together to allow Maya to stop masking as heavily when she was in therapy.
Maya began to trust her therapist over time and realized she was not being judged for being authentic or “displaying” some of her autistic traits in session. She finally felt comfortable bringing a fidget toy to the session, not making frequent eye contact, and just sitting in silence for long stretches. Her therapist knew this helped Maya to process and reflect at her own pace before responding. Maya said, “This is the first place I don’t feel like I have to audition for my own life,” she said.
These are powerful words for an individual to express during the course of therapy. It shows how therapy can create the exact safe space needed to learn about who you might be underneath the mask and become the person that you were meant to be.
Does Forward Thinking Psychological Service Offer Neuro-Affirming Mental Health Care?
As we come to the end of this blog, we hope that masking in ASD is much more understood by our readers. We want to summarize a few key thoughts to reflect on:
- Masking has no deceptive quality to it whatsoever. It is all about adaptation for autistic individuals
- The emotional toll of masking in ASD is often severe and cumulative. We know it can result in feelings of anxiety, depression and inauthenticity. Individuals will often express “not knowing who they are”
- Healing begins when people are seen and supported as they are, not as who they think they need to be.
It is essential that we all ask ourselves (whether you are autistic or not): Am I making space in my life for authenticity? Am I accepting myself for who I really am?
If you or someone you love has been diagnosed as autistic or is seeking an adult ASD assessment, consider reaching out to Forward Thinking Psychological Services ®. Our team offers adult autism mental health assessments, neurodiversity-affirming care, and we will help you create a safe unmasking space in therapy. We will also work with parents and families to create these spaces within your home life and discuss appropriate accommodations for your workplace. Contact us today to learn more!
References
- https://www.autism.org.uk/advice-and-guidance/topics/behaviour/masking
- https://www.autismbc.ca/blog/resource-guide/neuroaffirming-care-matters/
- Alaghband-Rad J, Hajikarim-Hamedani A, Motamed M. (2023). Camouflage and masking behavior in adult autism. Front Psychiatry, 14, 1108110. doi: 10.3389/fpsyt.2023.1108110. PMID: 37009119; PMCID: PMC10060524.
- Hull L, Petrides KV, Allison C, Smith P, Baron-Cohen S, Lai MC, Mandy W. (2017). “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions. J Autism Dev Disord, 47(8), 2519-2534. doi: 10.1007/s10803-017-3166-5. PMID: 28527095; PMCID: PMC5509825.
- 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. https://doi.org/10.1007/s10803-018-03878-x - Livingston, L. A., Shah, P., & Happé, F. (2020).
Compensation in autism: A cognitive and neural perspective. Nature Reviews Neuroscience, 21(9), 591–604. https://doi.org/10.1038/s41583-020-0358-y - Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E., & Hutman, T. (2013).
Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology, 49(1), 59–71. https://doi.org/10.1037/a0028353 - Lai MC, Baron-Cohen S. (2015). Identifying the lost generation of adults with autism spectrum conditions. Lancet Psychiatry, 2(11):1013-27. doi: 10.1016/S2215-0366(15)00277-1. PMID: 26544750.
FAQs: Autism and Masking in Adults
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