“High-masking” Autism and Late Diagnosis
If you’ve heard the term “high-masking” Autism in your everyday life or on social media, you may be wondering what that means. Typically when people use the term “high-masking” with regard to Autism, they’re referring to people who don’t meet a very specific standard of what society thinks Autism looks like (e.g., they are able to hold a job, have friendships, and appear “successful” in the ways that colonialism/white supremacy/the patriarchy view success). The purpose of this article is to explain what masking is, and offer it as a (partial¹) explanation of how Autism can go undetected for so long – not only to the outside world, but even to the Autistic person themselves.
For those of you who: 1. know someone who was diagnosed Autistic as a child; 2. know an Autistic person who presents in the same way that Autism is portrayed in the media; or 3. Have a less nuanced understanding of what Autism looks like and how it can present differently in different populations – the idea of “not knowing” you’re Autistic until adulthood is likely puzzling.
Before diving into the DSM-V² diagnostic criteria for Autism, it’s important that we cover the concept of “camouflaging” as it relates to Autism. I’m going to be using the term "camouflaging" rather than “masking” for the remainder of the article, because it’s an umbrella term that, per the Camouflaging Autistic Traits Questionnaire (CAT-Q)³, encompasses three different ways that Autistic traits can be hidden (masking being one of them). The CAT-Q breaks the types of camouflaging down into three categories: masking, compensating, and assimilating:
Compensating is described as:
“Strategies used to actively compensate for difficulties in social situations,”³ and
“Finding ways around the social and communication difficulties associated with autism.”³
Masking is described as:
“Strategies used to hide autistic characteristics or portray a non-autistic persona,”³ or
“Hiding aspects of one’s autistic presentation, or presenting a non-autistic persona to others.”³
Assimilating is described as:
“Strategies that reflect trying fit in with others in social situations,”³ or
“Attempts to blend into social situations in which the individual is uncomfortable, without letting others see this discomfort.”³
So why might an Autistic person, knowingly or unknowingly, camouflage Autistic traits? Hull and colleagues⁴ describe the intention of camouflaging (in this context) being “driven by the desire to ‘fit in’ so as to appear non-autistic, and to form relationships with others, which may be harder to achieve when the person presents autistic behaviour”. The majority of Autistic traits often lead a person or their behaviors to be labeled by others as “odd,” “strange,” “bizarre,” “awkward,” “rude,” etc… the list goes on. It’s understandable that individuals don’t want to be perceived in this way, and may knowingly or unknowingly engage in camouflaging behaviors to be able to fit in better and feel accepted and a sense of belonging.
Despite the extensive limitations to the DSM-V² (a major issue being that the language is all deficit-based), this is the diagnostic criteria that professionals are tied to when it comes to making an Autism diagnosis. Below, I’ve included the 2 overarching categories that the 7 symptoms fall into, and subsequently described how Autistic traits can be camouflaged (i.e., compensated, masked, assimilated) in each of these areas.
The first diagnostic category is “Persistent deficits in social communication and social interaction across multiple contexts.”² Individuals must have all three of the below-listed symptoms in order to meet diagnostic criteria (in addition to at least 2 symptoms in the second category).
Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.²
What might this look like if it’s being camouflaged? Here are some examples:
Following the lead of another person in a conversation
Waiting for people to approach them rather than initiating conversation
Copying phrases/topics that they’ve heard other people talk about during small talk
Putting on an act when engaging with others (e.g., pretending to be a fictional character, pretending to be a specific version of themselves)
Coming to functions late to avoid having to engage with others
Finding excuses to talk about special interests
Hiding the discomfort experienced when having to engage with others
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.²
Ways that this might be camouflaged:
Forcing eye contact when it’s uncomfortable
Focusing on the space between someone’s eyebrows or their forehead when talking to another person, to make it look like eye contact is being made
Copying the body language of the other person (e.g., crossing arms when the other person does, laughing when another person does)
Studying body language and facial expressions of other people/people on tv and copying it when engaging with other people
Putting extra effort into facial expressions and body language to make sure that these nonverbal gestures match the emotion and tone of what is being communicated
3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.²
Ways that this might be camouflaged:
Forcing themselves to have social interactions even when they don’t feel like it
Using alcohol or other substances to desensitize themselves in the moment to the discomfort of forcing social interactions
Choosing individual assignments over group projects at school/work whenever the choice is there to do so
Asking others how they should respond to texts/social interactions initiated by others
Staying in long-term friendships to avoid having to make new friends
The second category of diagnostic criteria for Autism is described as “Restricted, repetitive patterns of behavior, interests, or activities”.² To meet diagnostic criteria, only 2 of these have to be met (as opposed to all 4).
Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).²
Ways that this might be camouflaged:
Attributing the desire to do these things as a need for cleanliness/order (potentially even OCD)
Stimming internally (e.g., singing songs in their head, repeating phrases in their head) instead of out loud, to avoid having this behavior pointed out by others
Living alone or having their own space so that these things can be done privately, without judgment from others
Engaging in "socially acceptable" stimming behaviors, such as biting nails; picking at cuticles, scabs
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).²
Ways that this might be camouflaged:
Hiding the distress the person feels when routines are changed
Working in a profession that encourages rigidity or maintains a specific routine (e.g., labs with hyper-specific protocols; customer service jobs where the employee follows a script to respond to customers)
Making self-deprecating jokes about their need for consistency/routine as a way to show others that they have a need for this
Taking charge of hosting social gatherings either in their own space or a space they’re familiar with, so there’s less room for unpredictable changes to routine, and a sense of control in being in their own space/familiar space
3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).²
Ways that this may be camouflaged:
Hiding special interests from other people, specifically interests that others would see (or have seen) as weird, strange, or odd
Finding an environment to talk about/engage with the special interest privately, where no one else is aware of it (e.g., Reddit pages)
Finding special interests that are “socially acceptable” such as popular tv shows (e.g., The Office, Bob’s Burgers, Rick & Morty), art (e.g., painting, drawing, knitting, jewelry-making), or sports (e.g., being on sports teams, watching sports)
Turning a special interest into a career (e.g., special interest in people or psychology → becoming a therapist; special interest in the human body → becoming a doctor or physical therapist; special interest in writing → becoming a journalist or author)
4. Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).²
Ways that this might be camouflaged:
Convincing themselves that they’re overreacting, and noises aren’t too loud/lights aren’t too bright/etc – they’re just “being dramatic”
Drinking alcohol/using other substances to desensitize themselves to sensory input
Attributing sensory accommodation needs to other things (e.g., assuming a headache is from not drinking enough water that day, rather than the really strong candle being burned right next to them; attributing startle response to PTSD/CPTSD, rather than general hypersensitivity due to Autism)
Avoiding environments that have intense sensory stimuli (e.g., bars, concerts, crowds)
Using routines to remember to do things that they would otherwise forget due to not realizing internal cues/needs (e.g., eating meals at specific times each day, rather than relying on internal hunger cues to tell them when it's time to eat)
All in all, there is not enough of a widespread understanding of how Autism can look extremely different from one person to another, and these are just a few examples of how a person may reach adulthood before ever realizing that they may be Autistic. Specifically due to camouflaging measures – many people go decades masking, compensating, and assimilating their Autistic traits without ever realizing that they’re doing it.
It’s really important to note that masking, assimilating, and compensating strategies typically cause the individual engaging them (knowing or unknowingly) a significant amount of stress and dysregulation. Many of these camouflaging behaviors require an individual to completely deny themselves permission to feel certain emotions or physical sensations – and this takes a toll on a person over time. This is one of many reasons in which an Autistic person realizing that they’re Autistic can be a beautiful beginning of allowing themselves permission to honor their experiences, and a better framework for understanding how their brain is wired.
If you suspect you may be a highly-masking Autistic, it’s important that, should you pursue a formal diagnosis, that the person assessing you is well-informed of the ways that Autistic traits can be camouflaged (especially if you have any marginalized identity/ies). If you live in Pennsylvania or New Jersey, please feel free to reach out to me if you’re looking looking to schedule an ADHD/Autism Evaluation here!