In honor of #TakeTheMaskOff week The Art of Autism is posting this incredible essay from a 10th grade student recently diagnosed with autism spectrum disorder about passing as a neurotypical
By Simon Radhakrishnan
In 2000 the rate of autism diagnoses was about 1 in 150 people. By 2017 this rate was 1 in 45 — more than a 330% increase. More and more people are being diagnosed with autism spectrum disorder, but that doesn’t mean the world is ready to welcome them with open arms. Autistic people still feel immense pressure to conform to societal norms. The practice of autistic individuals trying to fit in is referred to as ‘passing.‘
What is Passing?
Passing is a concept often associated with the transgender community. For trans individuals, “passing refers to a transgender person’s ability to be correctly perceived as the gender they identify as and beyond that, to not be perceived as transgender” (Lee). However, there is a less explored type of passing that relates to neurodiversity. To paraphrase Ms. Jae Alexis Lee’s definition, autistic passing refers to an autistic person’s ability to present themselves as neurotypical.
People with autism spectrum disorder, a diagnosis which includes Asperger’s syndrome and classic autism, are often judged for their symptoms, which can result in a host of issues, from bullying to loss of opportunity. Passing can not only be safer but more strategic for the autistic individual. However, passing is not all positives. It can cause damage to one’s identity by constantly combatting one’s inner nature … and it’s a massive energy drain.
Yet time and time again, people with autism choose to pass even when not formally required to. Why do they do this?
Neurodiversity is simply diversity focused specifically on mental and neurological differences.
Are the sacrifices made in the name of passing worth the result?
What is autism spectrum disorder?
Autism spectrum disorder (ASD) describes three previously separate conditions: autistic disorder, Asperger’s syndrome, and pervasive developmental disorder not otherwise diagnosed (PDD-NOS). The Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-V) separates ASD symptoms into two categories: behavioural and communication/social. Behavioural symptoms of autism are divided into four subcategories:
- Stereotyped or repetitive motor movements, use of objects, or speech
- Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behaviour
- Highly restricted, fixated interests that are abnormal in intensity or focus
- Hyper or hypo reactivity to sensory input or unusual interest in sensory aspects of the environment (American Psychiatric Association)
These clauses account for several famous stereotypes of autism, such as ‘hand-flapping’ and other stims, a love for routine, special interests, and hypersensitivity. ‘Stim’ is a shortened term for ‘self-stimulatory behaviour,’ which are like fidgets for autistic people. Neurotypical people stim too, but they do not do it with the frequency or intensity of the autistic population.
Stimming is used for emotional, sensory, and social regulation and stress management.Some autistic people describe stimming as a way to regain control over their body and surroundings. So, if Lilo goes to a party with loud music and begins to feel anxious, she might spin in a chair to relax. This is a rudimentary example of stimming; however, autistic people may also stim when they want to express excitement or joy and when they need to focus. In addition to having a multitude of purposes, stims are as diverse as the people who use them: echolalia, hand-flapping, finger-tapping, snapping, humming, scratching, rubbing, rocking side-to-side or back and forth, jumping, and bouncing are all included under the umbrella of self-stimulatory behaviours.
Some therapy models view stimming as negative and try to mitigate it. However, most autism advocates believe stimming is healthy, as long as it doesn’t cause bodily harm (e.g. biting, hitting oneself).
The third clause of this definition of autism, which refers to “highly restricted, fixated interests that are abnormal in intensity or focus” (American Psychiatric Association). These are more commonly referred to as special interests and are an important part of autism. They come in two flavours: broad but intense and hyper-specific. They can range from Doctor Who, to 11th century English literature, to birds of Michigan, to Knot Theory, to ghost-related mythology.
Special interests bring joy to autistic people and can help them de-stress. ‘Infodumping’ is a concept that is closely related to special interests. It is a general term which describes when someone conveys a massive amount of information and can also be used in instances not related to ASD. Autistic people may ‘infodump’ when given the opportunity to discuss their special interest.
Hypersensitivity vs. Hyposensitivity
Hypersensitivity and, interestingly enough, hyposensitivity are both central to ASD. Hypersensitivity is more often discussed because it tends to cause more problems; people who suffer from it may refuse to eat various foods or wear certain types of clothes (wool, anything with tags, long-sleeved, etc.).
Hyposensitivity, though less talked about, has unforeseen consequences. Hyposensitive children may feel disconnected from their limbs and not be fully in control of their movements; thus, they may frequently bump into objects and seem otherwise clumsy. Another way that hyposensitivity expresses itself is through a lack of pain; hypo-tactility ranges from an inability to feel soft touches to not registering broken bones or extreme temperatures.
Further still, autistic children who suffer from hypo-tactility often seek out touch though self-destructive behaviours, like banging their head against a wall. Hyper and hyposensitivity are premium examples of how ASD exists on a wide range of symptoms, even those which may seem contradictory to each other.
Communication/Social Components of Autism
The second part of an autism diagnosis, the communication/social components, are also divided into subgroups:
- Deficits in social-emotional reciprocity. [e.g., abnormal social approach and failure of normal back-and-forth conversation; reduced sharing of interests, emotions, or affect; failure to initiate or respond to social interactions.]
- Deficits in nonverbal communicative behaviours used for social interaction. [e.g., abnormalities in eye contact and body language or deficits in understanding and use of gestures; lack of facial expressions and nonverbal communication.]
- Deficits in developing, maintaining, and understanding relationships. . . [e.g., difficulties adjusting behaviour to suit various social contexts; difficulties in sharing imaginative play or in making friends; absence of interest in peers (American Psychiatric Association)].
To summarise this formal definition, autistic people do not interact with allistic people normally. They have difficulty reading verbal cues and body language. For example, autistic people may have difficulty following vocal tones—even if they hear a change in pitch or weight, they might not know how to interpret it. To compensate, autistic individuals often rely on formulaic methods to navigate social situations, thus making them seem awkward or stiff. For this reason, they are characterised as loners or having very few friends. In fact, one of the signs of autism is abnormal relationship development. The first clause also implies a lack of empathy. This claim is somewhat disputed; however, there is consensus that autistics may not display empathy in the way that most are accustomed to. However they do experience empathy.
Characteristics of those who pass for NT’s
The DSM-V further divides ASD into three levels of severity: requiring support, substantial support, and very substantial support. These terms are used interchangeably with “high-functioning” (equivalent to requiring support) and “low-functioning” (equivalent to requiring substantial and very substantial support). People with Asperger’s syndrome, informally known as aspies, are said to be “high-functioning” and more likely to pass. People who can pass for neurotypical are high-functioning almost by definition, although having Asperger’s syndrome is not a requirement. Passing individuals tend to be well-integrated into regular society; most can attend normal high schools and college, live on their own, and hold jobs.
Yet despite the fact that passing aspies may seem neurotypical, they are not; they face many challenges not just from autism itself, but also from its intersection with titular issue, passing.
There is very little scholarly work on the subject of passing; therefore, I was reduced to blog posts, forum responses, and survey interviews to understand this topic. Because there hasn’t been substantive research analysing the causes and effects of passing, I feel it is even more important to recognise the experiences of individuals. In accordance with this principle, the following discussion will include numerous direct quotes from autistic people.
Several of the struggles of passing for neurotypical follow logically from the concept itself. If someone passes for neurotypical, then all of their colleagues, classmates, and superiors assume that they are “normal,” for lack of a better term. The ability to pass as neurotypical can lead to the expectation that one will always pass.
HappyHermit, a user on the online forum AspiesCentral, expands on this idea:
What gets to me [about passing] is the Catch-22: 1. if you seem normal, you’re supposed to be normal. i.e., ‘what do you mean, people drain you?’. 2. If you don’t seem normal, people do their utmost to pressure you into conforming, and then, the first rule applies. You can’t always resist because food and shelter cost money, and your source of income will fall away if you don’t comply. Either way, NTs – who form the vast majority and get to exert that pressure – must remain blissfully ignorant and carefree. (HappyHermit)
Many aspies rely on intellect to pass, but are not always able to meet expectations.
In the words of Reddit user Creepinquick:“[Passing is] a script, an algorithm. I tweak it with every interaction I have.”
Consider all of the nuances of social interaction which most people process subconsciously; now, consider what it would be like to have to evaluate those variables consciously. Obviously, the second method would be far more fatiguing and prone to error. For many people with Asperger’s, this is how they navigate social situations. However, the expectation to be ‘normal’ means that allistic peers may not be accommodating of autism-related errors. Thus, when aspies do ‘act autistic’, it can harm their relationships and reputations.
Passing aspies are caught in a strange middle-zone: they are not so severely impacted that they cannot participate in many ‘normal’ activities, but they still require support. If all of Ravi’s co-workers are unaware that he has autism, then his social shortcomings may be attributed to rudeness instead of a legitimate disorder. On the other hand, even if Ravi does manage to keep up appearances, he will still be under massive amounts of pressure to seem neurotypical.
A Reddit user Sstsunami55 says:
“[Passing is] a tricky dilemma, because I wanna fit in, but I also don’t wanna give up my identity just because of what others want” (Sstsunami55). As my second interviewee stated, “Passing feels so very against the grain. . . [It is] taxing physically, mentally, [and] spiritually” (Radhakrishnan, “Interview Two”).
Why don’t autistic people just not pass?
A reasonable person might respond to this statement, “Why don’t autistic people just not pass?” Passing is not only about convenience; a failure to assimilate can result in loss of opportunities.
As Judy Endow writes in blog post about passing:“It is a lot of work to look non-autistic, and yet, looking non-autistic is the ticket to sit at many tables. . . Do I like [passing]? No. Even so, I am glad I am able to “pass” when I need to because it has made my life better than when I couldn’t “pass” in that my income is more stable now than [it was before].” .
One of the people I interviewed was the Senior Vice President of a large company. They wrote, “If I didn’t make an effort to pass I would never have advanced in my career to the extent I have” (Radhakrishnan, “Interview One”).
Another interviewee said, “It may get the job. It may avoid bully[ing] behavior, ridicule, etc.” (Radhakrishnan, “Interview Two”).
ASD is a misunderstood disorder, so when someone says they have autism, what comes to mind for many people is a “low-functioning” autistic. However, as discussed before, autism covers a large range of abilities. Autistic people can also have different levels of capability in different areas. For incidence, Rohan might have subpar social skills but be great at processing feedback and graphic design. But if Rohan mentions that he has autism an employer may be unable to see past his social performance. People’s mental images and assumptions often trump countering evidence presented by an actual autistic person. (Editor’s note: see Understanding Autism: a comic strip explanation for more info about autism and functioning levels).
Media Representations of autistic people
Media representations play a large part in this. As with most minorities, media representation is an issue for the autism community. To begin with, the vast majority of autistic and autistic-leaning characters are white and male: Shaun Murphy from ABC’s The Good Doctor; Raymond Babbitt Rain Man; Sheldon Cooper from The Big Bang Theory; Sam Gardner from Atypical; Sherlock Holmes from BBC’s Sherlock; Will Graham from NBC’s Hannibal; etc.
Savants or Comic Relief
Personality-wise, autistic characters tend to fall into two categories: savants or comic relief.Savants, such as those seen in Rain Man and ABC’s The Good Doctor, only make up about 10% of the autistic population. One of the defining characteristics of savant syndrome is intense deficits in several areas. These portrayals contribute to the stereotype that autistics are overall incompetent and naïve.
Sheldon from The Big Bang Theory, who is almost universally accepted as on the spectrum, is a premium example of a comic relief character. It is fine to have a funny character for a TV show, but when that is one of people’s only exposures to autism, it can cause them to not take autistic individuals seriously. Thus, being open about one’s autism can lead to underestimation, bullying, loss of academic and employment opportunities, and loss of respect.
Reddit user Trintron said in a thread about successful passing, “I feel like I have to hide a part of myself, but it is way easier to make friends and dating was easier. I stick out less, and I stopped being bullied in school when I started being able to pass. . . The internalized [ableism] has caused me problems, some of them rather severe. . . But overall my life is easier and I’m happier for it.”
This idea was echoed in one of my interviews: “It was never out of convenience because it isn’t easy to pass. It can be a necessity when it comes to bullying or the desire to fit in to make friends” (Radhakrishnan, “Interview Three”).
Loss of respect is another concern. Respect is critical to building a healthy sense of self, and that only makes the choice between passing and not passing more difficult. Identity matters are woven into both situations. When not passing, aspies’s identity may be disrespected by others, but when aspies are passing, they may lose their identity within themselves. When aspies pass for a long time, they often lose touch with themselves. Autism can be a big part of who they are, and hiding it is painful to their internal definition of self.
Jane Strauss describes passing as “a way of trying to fit in, by denying one’s core identity. . . One is always ‘on guard.’”
This sentiment is echoed by Jocelyn Eastmen; in fact, she argues that passing is inherently part of a larger legacy of hiding disability. “Passing undermines who we [autistic people] are. Passing causes irreparable damage to our psyche, because we know that unless we put on an act, [we] will not be accepted by the vast majority of people.”
You don’t look autistic
Further, passing not only causes identity issues internally but also externally. There is a misconception that there is such a thing as ‘autistic enough.’ When people find out that a passing person has autism, the “almost-inevitable response [is] “Really? You don’t look/seem/come off as autistic” (Rosa).
Autism is dismissed as being quirky because an autistic person does not fit the image their head. This applies not only to those who pass, but also anyone who is on the low-support-needed end of the spectrum.
Ryan Boren, an autistic blogger, phrases it well when he says, “Being an autistic seen as ‘high-functioning’ means having your identity doubted and questioned. Exhausting efforts to pass and mask are given little credit. They are tossed aside with an ‘I do that too’ and held against us in those moments of meltdown and burnout.”
This isn’t the only form of denial. Some people believe that passing is not a legitimate issue by arguing all people ‘pass’ to some extent. It is easy to see where they are coming from: most humans have personality traits which they suppress in public, and most humans need to monitor their behaviour around others. Why should autistics be any different?
Judy Endow addresses this issue:
“Many argue that all people have to do this “sucking it up” to some extent. After all, we cannot just act however we wish when we are in public. I agree. However, autistics have to do this to such a greater extent that it prohibits many of us from being employed because we simply cannot “suck it up” long enough each day to be gainfully employed. For me, it means I must pay strict attention to how I schedule my life. I must employ sensory regulating activities and much quiet time in order to be in shape to be able to “suck it up” when I go out the door to work away from home.”
Passing and Exhaustion
The other large issue with passing is the exhaustion it causes. As with the identity and acceptance issues of passing, fatigue can also be derived logically from the larger concept itself. Passing requires an enormous amount of energy. It is akin to speaking in a second language all day—even if Alfred is fluent, there is still a bit of lag between what feels natural and what actually comes out of his mouth. Therefore, bilingual Alfred’s brain is continually expending energy to not only filter what he says but also understand and translate what others are saying.
One of my interviewees said on the topic of challenges, “I am always exhausted. I feel broken. I lack the need to protect myself against a sensory overload” (Radhakrishnan, “Interview Three”).
Meltdowns, Shutdowns and Sensory Overload
This exposes another facet of fatigue—it can lead to other problems, such as meltdowns and shutdowns, triggered by sensory overload. Sensory overload is the term used to describe anxiety, confusion, or panic attacks caused by excessive stimuli. For example, sensory overload can be caused by loud or overlapping noises, bright lights, flickering lights, strong smells, or combinations of these factors.
In an article about what sensory overload feels like, Meredith Lime described it as:“Do you remember the movie ‘Bruce Almighty’? He was receiving prayer requests by hearing them in his head as they occurred, hundreds at a time. They became jumbled, and he became frustrated and couldn’t make sense of any of them. Sensory overload is like that. Everything is coming at me at once, but it seems I’m the only one noticing. I can hear my heartbeat, I can feel the heat of the lamps, I can’t function. I’m frozen, stuck.” (McGlensey)
It takes conscious effort to avoid sensory overloads. Autistic people have to use mental energy to not have a meltdown, shutdown, or burnout. Passing drains this energy and makes them much more prone to sensory overload. An autistic meltdown looks like a tantrum, but it is very different in terms of intent and control.
Meltdowns are a loss of control; frustration and stress build up until the person can no longer contain it. Tantrums are usually calculated moves designed to help someone, usually a child, get what they want. Autistic shutdowns are similar in cause but are, in fact, the opposite in effect. Autistic shutdowns are also caused by stress and sensory overloads, but what happens instead is the person collapses in on themselves. Some of the common symptoms are being unresponsive to touch, falling asleep, becoming non-verbal, having a blank-stare, being unable to think properly.A handy way to remember the difference between these two reactions is meltdowns are external and shutdowns are internal.
Burnout and Fatigue
Finally, a burnout is a “long-term exhaustion and diminished interest in work, . . . [with symptoms] similar to those of clinical depression” (“Burnout”). In essence, a burnout is an extended shutdown. A burnout is caused by stress and pressure over a long period of time, such as living in a sensory-overloading environment or having a stressful job.
Passing is directly correlated with meltdowns, shutdowns, and burnouts. One autistic activist puts it this way, “Basically, the higher functioning you are, the more others expect of you and also, the more you push yourself, [and the closer you are to a burnout.” .
We can that the exhaustion caused by passing has repercussion beyond just simple tiredness. This fatigue can cause panic attacks, career and emotional burnouts, and the inability to functions. So, by transitive property , passing for neurotypical has the potential to cause all of these serious problems.
Benefits and Pitfalls of PassingAlthough passing is a relatively unexplored aspect of autism, it’s fascinating in its dual nature, meaning that it has its benefits and pitfalls. Passing helps aspies fit in and by extension, be hired for jobs, make friends, and pursue romantic relationships. One of the people whom I interviewed could not pass but said,“If I could ‘pass’ I would do it. Having this ability does indeed sound ‘convenient’, having a job would be nice, and fitting in sounds enjoyable” (Radhakrishnan, “Interview Four”).
Sacrifice of Identity
Yet, as this paper explored earlier, passing requires sacrifices of identity and energy. Passing often causes others to invalidate one’s autism because they seem so ‘normal’, and this lack of acknowledgment can lead to an inability to receive accommodations when they are actually necessary. Autistic people can also feel like they are denying a part of who they are, sometimes even physically repressing themselves.
For instance, stims are a big part of regulating an individual’s emotional state, but neurotypical environments are not always accepting of them.The first interviewee said, “I expend a great deal of energy mirroring “normal” behaviour and suppressing stims” (Radhakrishnan, “Interview One”).
Prevention from stimming combined with the massive exhaustion caused by passing can lead to other problems, such as meltdowns, shutdowns and burnouts. Strauss summarises this well, saying, “[Passing] takes a toll, in self-esteem, energy, stress, and watchfulness” (Strauss).Passing and adaption to the environment we live inDespite what the strong statements made above may imply, passing is not always a bad thing. Being perceived as neurotypical isn’t inherently negative; at its essence, it is just a way of adapting to the environment we live in. The problem with passing is that it is required.
One of the interviewees said, “My value isn’t my rhetorical abilities in a social setting” (Radhakrishnan, “Interview Four”). This cuts to the root of the issue: autistic people should still be able to lead a fulfilling life and engage with the world without having to be like allistic people.
The final question asked in the interviews was “Would you prefer to not have to pass for neurotypical? If so, what are some ways that neurotypicals can be accepting of your autism?” (Radhakrishnan, “Passing as Neurotypical).
Every passing person who responded answered yes to the first question, and from what I gleaned from the writings of other passing autistics whom I did not interview, most of them would have said yes as well. Yet despite the near unanimous agreement that they would prefer not to pass, the answers to the second question were varied.
Two of the five responses essentially said, “It is what it is. The best thing to do is to focus on being the best person that I can be.”On the other hand, another interviewee boldly said, “I think the entire concept of passing is harmful to autistics, as well as transgender persons, minority persons, and any other group who feels like being themselves authentically is ‘failing’ to ‘pass’ as something considered acceptable as a human condition. . . Neurotypicals can be accepting of my autism the same way they can be accepting of any other human variant – seeing what they fear. Why do white people fear minorities? Why do men fear women? Why do temporarily abled persons fear disabled people? Answer this, and you will see why neurotypicals fear autistics.” (Radhakrishnan, “Interview Four”)
I would like to specially thank Ms. Debra Muzikar and The Art of Autism for helping me find interviews for this project. I deeply appreciate their efforts and willingness to help; this paper would not exist without them. I would also like to thank the five people whom I interviewed. Their insights were invaluable, and their contributions were immeasurable.
Simon Radhakrishnan is a 10th grade student who was diagnosed with autism spectrum disorder two years ago. He is high-functioning and loves mathematics and art. Over the last few months Simon studied and documented the effects of passing for neurotypical for his Civil Rights class. His teacher encouraged students to ‘get proximate’ to the group they are studying by interviewing people.