Life Is a Stage: Autistic Perspectives on Neurotypicality

Abstract

Background:

Professional interventions for autistic people often encourage the development of neurotypical behavior. However, the pressure to appear or behave neurotypically has been associated with negative mental health outcomes. Consequently, autistic perspectives on the concept of neurotypicality are a critical area for empirical research. As a follow-up to a prior study on perceptions of autism, the present study examined the concept of neurotypicality as represented in 39 online video logs authored by YouTubers who self-identified as autistic. The study aimed to understand autistic perspectives on neurotypicality to guide professional service provision toward practices that support overall well-being.

Methods:

Consistent with procedures frequently implemented within narrative inquiry, we identified three exemplary videos that presented salient and consistent narratives about neurotypicality. We submitted transcripts of these three videos to inductive thematic analysis to establish their distinctive features and hence the features of the narratives they embodied. Afterward, we used the distinctive features of the exemplary videos to deductively analyze the remaining 36 videos in the data set.

Findings:

The three exemplary videos presented features that related to three divergent narratives about neurotypicality that were supported by the data set as a whole: neurotypicality as (1) an achievement; (2) a masquerade; and (3) a curse. These three narratives differed sharply in regard to the desirability and feasibility of neurotypical conduct. Across all narratives, neurotypical behavior was associated with significant effort.

Conclusions:

Implications for professionals serving the autism community include the need to be prepared to offer clients different narratives about neurotypical behavior, as presented in writings and media authored by autistic individuals. A second implication concerns the need to align intervention and educational goals with a client's views and values. Finally, independent of the goals established between professionals and clients, the former must monitor the stress and effort associated with the enactment of neurotypicality and make changes accordingly.

Lay summary

Why was this study done?

Professionals often want to help autistic clients to behave like people who are not autistic (often called neurotypicals). However, we do not know much about how people on the autism spectrum feel about the idea of neurotypicality. In this study, we analyzed 39 videos from YouTubers who identified as autistic to learn more about what they think of neurotypicality.

What was the purpose of this study?

Our goal was to learn directly from autistic individuals and to help professionals (e.g., psychologists and speech-language therapists) to provide better services to the autistic community.

What did the researchers do?

We chose three of the videos that were good examples of different ways of thinking about neurotypicality. We analyzed the three videos to identify their unique features. Then we identified examples of those features in the other 36 videos in our data set.

What were the results of the study?

We identified three ways of thinking about neurotypicality: neurotypicality as (1) an achievement; (2) a masquerade or theatrical performance; and (3) a curse. These ways of thinking about neurotypicality differed mostly in regard to the extent to which neurotypicality was desired and considered possible. A shared characteristic was that neurotypical behavior required a lot of effort from autistic individuals.

What do these findings add to what was already known?

The findings of our study highlight the effort associated with neurotypical behavior and the connection between neurotypical behavior and mental health. The study can help professionals to better understand what behaving neurotypically feels like for autistic individuals. It also has the potential to increase discussions about neurotypicality by amplifying the autistic voices that are still underrepresented in scientific studies.

What are potential weaknesses in the study?

The ways of thinking about neurotypicality that we identified in our data may not be representative of all the autistic community because most of the vloggers in our data were white males who identified with Asperger's syndrome. Also, our study included only videos recorded in English and uploaded to YouTube^TM between 2005 and 2015. Future studies should include individuals from all areas of the autism spectrum and more recent data presented in more varied formats and languages.

How will these findings help autistic adults now or in the future?

The findings of our study suggest that professionals who serve the autistic community should be able to share with others different views of neurotypicality, help clients work toward goals that are important to them, and monitor signs of stress caused by the effort to behave neurotypically. This should in turn positively impact the quality of services provided to the autistic community and with it the overall well-being of people on the autism spectrum.

Introduction

According to researchers working within narrative inquiry, individuals organize and make sense of their experiences by constructing stories or narratives about them.^1–4 These tangible products of their meaning-making processes provide a window into how those experiences are understood.⁴ Autistic people have been offering their narratives about autism and neurotypicality for several decades and in a variety of venues, including autobiographical books,^5,6 online discussion lists,⁷ written online logs (blogs),⁸ and online video logs (vlogs).⁹ Yet, not many researchers have capitalized on this authentic off- and online data to construct a more holistic understanding of autistic experiences, thereby potentially hindering the provision of better quality services to the autistic community. An emergent empirical literature is beginning to fill this gap.^10–12 As an example of one such study, Angulo-Jiménez and DeThorne¹³ conducted a narrative analysis of the representation of autism in 39 YouTube™ vlog entries posted by individuals who identified as autistic. The article leveraged features of the medical model versus the neurodiversity paradigm to explore the vloggers' representations of autism. Key findings included the predominance of a hybrid narrative about autism, which incorporated features of both the medical model of disability (to a larger extent) and the neurodiversity paradigm (particularly in relation to vocabulary choices and the description of autistic traits). During the analytic process, acting/becoming neurotypical emerged as a theme of interest for further study.

Often taken as synonymous to normality, normalcy, and normativity, the term neurotypicality describes the state of being and the act of behaving in accordance with “dominant societal standards”¹⁴ for individuals who have a typical or standard brain. As highlighted by Armstrong,¹⁵ the term refers to what is considered normal, typical, or standard at a particular time and for a particular social group and can therefore be conceptualized as a social construct. Despite this, it is often assumed that neurotypicality and other related terms describe an objective, unchanging reality,¹⁶ thus giving rise to societal demands for neurotypical behavior.

In fact, the pressure to become or behave neurotypically has been identified as a common source of concern for many autistic individuals, including critiques of neurotypicality as a worthwhile goal of intervention.^17–20 In particular, critiques have highlighted significant negative consequences on mental health. For example, a poignant quote written by a contributor to the magazine Asperger United, stated “…I was diagnosed with depression when what was wrong with me was misguided attempts to confirm to the norm.^19(p528)” Similarly, Asasamasu¹⁷ highlighted the social/emotional costs associated with striving to become “indistinguishable” from neurotypical peers, a process referred to as camouflaging or masking. Camouflaging has been defined as “coping skills, strategies, and techniques” that function to mask autistic features during social situations.^21(p2523) Several studies have empirically documented both the widespread nature and significant consequences of camouflaging for autistic individuals, whereas motivations for camouflaging include social connection and harm avoidance, and detrimental effects include exhaustion and increased risk of anxiety and depression.^21–24 Such findings are particularly alarming given the relatively high rates of anxiety, depression, and suicidal ideation within the autistic population.^25,26 In short, bringing autistic perspectives on neurotypicality and its consequences into the professional empirical literature base is of critical importance for improving service delivery and supporting the overall social/emotional health of autistic individuals.

Accordingly, this study aimed to understand autistic perspectives toward the concept of neurotypicality to guide professional service provision toward practices that support overall well-being. Specifically, we asked, what are the salient perspectives toward neurotypicality among autistic individuals who have shared their narratives on YouTube?

Methods

Research team

The first author identifies as a male Costa Rican professor of English as a foreign language and is currently a doctoral student in Speech and Hearing Science, where he uses discourse analytic approaches to study communication in autism. The second author is a Chinese American female graduate student pursuing a Master of Arts degree in Speech-Language Pathology. The third author is a white American professor and an academic chair of Speech, Language, and Hearing Sciences who identifies as a European American female. The three authors self-identify as neurotypical, and one author has an immediate family member who identifies as autistic. Consistent with the neurodiversity paradigm, their common professional/investigative interests focus on using autistic perspectives to inform the provision of educational and communication supports. Given the authors' neurocognitive profiles and identified research/professional interests, several strategies were implemented in Angulo-Jiménez and DeThorne,¹³ and in this study to manage perspectives²⁷ and positionality²⁸ and thus help ensure the groundedness of our interpretations in the data, including the participation of an external autistic consultant in the original project,¹³ and the realization of peer debriefing sessions and consensus passes at different stages of the research process.

Data source

The present data set consisted of 39 videos and their corresponding transcripts analyzed in Angulo-Jiménez and DeThorne.¹³ The videos were located by the first author and several research assistants (RAs) through multiple internet searches, using keywords (e.g., “autism,” “story,” and “experience”) and combinations of keywords (e.g., “my story of autism”). Candidate videos were viewed in full to establish their compliance with the following inclusionary criteria: the video (1) presents an experiential account of life with autism, (2) is authored by a vlogger who identifies as autistic, (3) is featured in the vlogger's personal YouTube^TM channel, (4) is in English, and (5) was uploaded to YouTubebetween 2005 (when YouTube was launched) and 2015, when Angulo-Jiménez and DeThorne's¹³ study first began. To further ratify the videos' compliance with the eligibility criteria, the first author and at least one RA reviewed the “Home” and “About” section of the corresponding vlog channels.

These resulting set of 39 videos ranged in length from 2.25 to 39.23 minutes (M = 12, SD = 7.69). The vast majority, 37/39, were uploaded between 2010 and 2015. Consistent with the neurodiversity paradigm and the concept of autism as a meaningful social/political identity,²⁹ we focused on how individuals self-identified rather than how they had been labeled by a medical professional. Accordingly, the vloggers self-identified with the following autistic profiles: 20 Asperger's syndrome (n = 20), 11 autism (n = 11), 3 high-functioning autism (n = 3), 3 pervasive developmental disorder not otherwise specified (n = 3), 1 mild autism (n = 1), and 1 borderline Asperger's syndrome (n = 1). For the 18 vloggers who specified their age, the mean was 24 years, with a range of 13–45. Readers are referred to Angulo-Jiménez and DeThorne¹³ for additional details on participants.

Ethical considerations

Given the public nature of the YouTube videos, the present study received formal notification from both the Illinois at Urbana-Champaign and Western Michigan University that it did not qualify as human subjects research and thereby did not require formal consent procedures. We have taken the public availability of the data as an intent to “share their stories,” and an implicit consent to complete our narrative analysis. However, after consultation with two autistic colleagues and ethics review board affiliates at both universities, we decided to assign pseudonyms (with one exception noted shortly) to the vloggers rather than use their online names and/or identities for three main reasons: (1) absence of formal research consent procedures, (2) customary research practice to protect privacy and minimize any negative consequences to participants, and (3) the potential vulnerability of some vloggers in terms of age and/or disability. Given the prominence of their narratives in the current analyses, we did send electronic correspondence to Maja, Jerry, and Ruth asking their preference regarding name use. Only Maja responded to our inquiry, and she requested that we refer to her as Maja Toudal or theAnMish in the present article. Accordingly, we refer to her in the present article as Maja rather than the pseudonym Arwen, which was originally used in Angulo-Jiménez and DeThorne.¹³

Data transcription

Six RAs transcribed the 39 selected videos verbatim using transcription conventions developed by the research team and drawn from the extant literature (e.g., Miller and Long,³⁰ Simmons-Mackie and Damico³¹). Consistent with qualitative and narrative research procedures,^1–4 a transcript of each video was produced by one of the RAs first, and then, a consensus pass between this RA and the first author was conducted to verify the accuracy of the generated transcript. Disagreements between the first author and the RA were discussed in weekly research team meetings. Final transcripts were stored in ATLAS.ti by the first author.

Data analysis

As previously noted, acting/becoming neurotypical emerged as an inductive theme during the original analyses for Angulo-Jiménez and DeThorne.¹³ However, the topic was not directly explored therein. Consequently, the first author began the present analyses by identifying three videos from the original analyses that drew his attention due to their emotional saliency and consistent narrative regarding neurotypicality: Jerry's account of his journey to becoming neurotypical; Maja's explanation of her neurotypical appearance; and Ruth's rendition of the “curse” of being perceived as neurotypical. The first author shared the transcripts of these videos with the other two authors as a form of peer debriefing. The team spent some time discussing how Ruth's narrative of neurotypicality rested on being perceived as neurotypical by others, whereas Jerry and Maja's narratives focused more on self-perceptions. In the end, we included all three narratives given that the distinction between self-perception versus perception by others seemed critical in understanding the concept of neurotypicality.

After achieving consensus on the relevance and salience of the narratives, team members independently labeled salient segments of text (words, sentences, and paragraphs) with codes that specified the features of the video represented by such prominent segments. We then conducted consensus passes²⁷ to discuss the stretches of text that we had considered salient as well as the codes each of us had independently proposed to label such segments. These consensus passes and a process of constant comparison allowed us to establish the distinctive features of the three videos that had most powerfully drawn our attention^32–34 (Table 1). These procedures also led us to characterize the three videos as exemplary of three distinct narratives about neurotypicality, namely (1) neurotypicality as achievement, represented by Jerry's video, (2) neurotypicality as a masquerade, represented by Maja's video, and (3) neurotypicality as a curse, represented by Ruth's video.

Table 1.

Features of the Three Narratives About Neurotypicality in the Videos

	Narrative	Achievement					Masquerade						Curse
	Feature	Blurred distinction between being and presenting as NT with concurrent distancing	Neurotypical behavior as goal	Gratefulness for support aimed at neurotypicality	Specification of accomplishments despite history of autism	Success despite autism as granting of ability to help others	Clear distinction between being NT and performing NT	Reference to explicit learning of NT behavior	Conscious effort to look/behave neurotypically	Acting NT as an energy/time-consuming activity resulting in pain/burden	Need/ability to hide the aspie/autistic side	Distinction between being NT and being perceived as neurotypical	Failure to meet expectations of individuals perceived as NT	Inability/impossibility to always act neurotypically	Confusion or lack of clarity regarding inability to behave more neurotypically	Increased caring that makes failures more painful
Vlogger	Adrian		✓
	Angel										✓	✓
	Anna							✓	✓	✓		✓	✓	✓
	Armando		✓	✓
	Becky		✓							✓			✓	✓
	Cher						✓	✓	✓	✓
	Dolly									✓		✓
	Emilia			✓	✓	✓
	Eva											✓	✓
	Hosh												✓
	Jake	✓									✓
	Jerry	✓	✓	✓	✓	✓
	John		✓	✓	✓	✓			✓
	Jonathan	✓		✓
	Julio											✓
	Ken		✓	✓	✓	✓
	Luis	✓										✓	✓
	Luis Angel													✓
	Maja						✓	✓	✓	✓	✓
	Matt							✓		✓
	Marcus	✓		✓	✓	✓		✓				✓
	Mike	✓		✓				✓
	Morton						✓	✓		✓			✓
	Nelson		✓		✓	✓		✓	✓		✓	✓
	Rocco	✓	✓
	Ruth											✓	✓	✓	✓	✓
	Ryan		✓								✓
	Teresa									✓				✓
	Toby			✓		✓
	Travis	✓		✓	✓	✓
	Willy		✓						✓	✓
Total	31	8	10	10	7	8	3	8	6	9	5	9	7	5	1	1

Videos that did not exhibit any of the identified features are not listed here.

NT, neurotypical.

The authors then used the distinctive features of the exemplary videos to deductively analyze the remaining 36 vlogs in the data set to derive a fuller representation of the narratives. Specifically, the first and second author and an RA independently analyzed the transcripts of these 36 vlog posts, looking for segments of text that could be associated with each of the distinctive features of the exemplary videos and thereby coded accordingly. Consensus passes between analysts were then held to discuss the established segment feature associations. The first author applied all the agreed-upon codes to digital copies of the transcripts in ATLAS.ti. Quotation (i.e., segment code) reports generated with ATLAS.ti facilitated discussion among authors, selection of sample quotations, and counting of code segment associations, among other tasks relevant to qualitative data analysis. At this point, it is worth noting that a single transcript could and often did include features from different narratives; see, for instance, in Table 1 how the transcript of Becky's video was coded with features associated with all three narratives.

Findings

The three exemplary videos included the following: (1) Jerry's relation to his life with autism (i.e., achievement); (2) Maja's explanation of her neurotypical appearance (i.e., masquerade); and (3) Ruth's account of the affliction of “looking” neurotypical without being so (i.e., curse). In addition, 28 of the remaining 36 videos presented at least one of the distinctive features of the exemplary vlog posts (see Table 1). It is worth noting that results from the deductive analyses provided support for the selection of the original three transcripts as rich and relatively consistent narratives of neurotypicality. In contrast, the other transcripts tended to either have relatively few features or have features from a variety of different neurotypicality narratives. Below we discuss the distinctive features of the exemplary videos and incorporate sample quotations as found in the exemplary videos themselves and across the data set. Although quantitative values may not be typical in narrative inquiry,³⁵ we opted to report data on how many other videos exhibited each narrative feature as one means of reflecting the relative representativeness of that feature. Please note that emphasis in the sample quotations is denoted with italics and omitted text is denoted with ellipses in parentheses.

Jerry's video: neurotypicality as achievement

Cheers and good luck to you all. As your quest and your journey to your entire life. Because, although life has many challenges, regardless of how unsevere you can become, there will always be light at the very end of the tunnel.—Jerry

Jerry, the presenter of this video, received a diagnosis of autism when he was 2 years and 10 months. In his video, Jerry describes his life with autism, focusing, as stated in the quote above, on his journey to becoming “unsevere” and on the challenges he has encountered on his path to achieving this goal. The unique features of Jerry's vlog post and their presence in other videos are discussed in further detail in the following paragraphs.

Blurred distinction between being and presenting as neurotypical with concurrent distancing of the vlogger from the autistic community and the more prototypically autistic person he was in the past

One of the salient features of Jerry's vlog post is a rather vague—or altogether inexistent—distinction between being and presenting as nonautistic. His choice of tenses and pronouns suggests distancing from (1) the more prototypically (severely) autistic person Jerry was in the past and (2) the autistic community itself. To illustrate, when describing his experience in schools, Jerry states, “having the next school putting me through a classroom all of autistics sometimes isn't the best idea because then you start acting like them.” Like Jerry, eight other vloggers demonstrated this feature (Table 1). Travis, for instance, shares:

I was a completely different kid (…) when I had severe autism (…) I know my (…) autism's mild nowadays but, anyhow, I know it was difficult in school (…) during my years of severe autism.

Neurotypical behavior as goal

A second and related feature of Jerry's video is the presentation of neurotypicality as a goal, and the consistent presentation of the fight against autism symptoms as desirable, even if painful and effortful. Talking about his childhood, Jerry states:

My mom tried breaking me a lot of my routines (…) one day when I wanted to walk in the same direction as usual, she pulled me (…) to go in the other direction.

Then he assesses his mother's action, saying: “I was screaming hysterically and crying but eventually that was the steps that I needed to happen.” Jerry then continues to describe how he has “kept bettering” himself to ultimately become “unsevere.” Like Jerry, nine other vloggers either implicitly or explicitly present neurotypicality as a goal within the context of their videos (see Table 1). To illustrate, regarding social interaction in his teenage years, Armando shares, “I started to do things that were very outside of my comfort zone socially, and it felt horrible [clenches fists],” but then he retrospectively appraises his own actions and states:

I was really pushing myself to greater and newer heights. And at the time it was a great challenge, but now I'm very grateful (…) because now I'm able to interact in social situations with much ease.

Gratefulness for support aimed at neurotypicality

Consistent with the idea of neurotypicality as a goal, a third main feature of Jerry's vlog post is the acknowledgment and appreciation to those who helped with overcoming autism symptoms and thereby becoming more neurotypical. In this regard, besides his own tenacity, Jerry mentions his mother's “high will power,” which was key to becoming “more verbal,” and “the determination of (…) peers and people who've put a lot of time into” him. Similarly, nine other vloggers expressed their gratefulness for support aimed at neurotypicality (see Table 1). Toby, for example, thanks his friends and relatives for helping him “get this far in life” and asserts that “without them” he “would be nothing.”

Specification of accomplishments despite history of autism

Another distinct characteristic of Jerry's video was the listing of personal accomplishments attained despite autism. Among his own triumphs, Jerry mentions being in regular education classes in high school and attending college. Like Jerry, six other vloggers list their attainments despite autism. Nelson, for instance, mentions being “more socially interactive” than other people on the autism spectrum, attending college, traveling abroad, and being in a music band. In his words, he has been able to do all this because he “did not let” his disability “stop” him.

Success despite autism as granting of ability to help others on the spectrum “better” themselves

The last salient characteristic of Jerry's video was his presentation of self as someone who has “first person, hands-on experience,” knows “how it feels to have autism,” and has “broken many barriers,” thereby having the ability/authority to “help other people with the disability of autism handle their disabilities.” Like Jerry, seven other vloggers present themselves as some sort of examples of personal success in the face of autism. To illustrate, by the end of his vlog post, Marcus gives encouragement to his autistic viewers, saying:

You can do it [points to camera] despite your flaws, despite your disabilities, despite the fact that you're autistic, you can do it [points to camera].

To sum up, the account of neurotypicality as an achievement depicts neurotypical behavior as a feasible goal whose attainment comprises significant effort and commitment from the autistic individual and from those around them. Yet, from Jerry's perspective and that of other vloggers who align with this narrative, the payoffs—operationalized as traditional measures of personal success among neurotypicals—may outweigh the burden.

Maja's video: neurotypicality as a masquerade

Life is a stage, yeah? To me it really is, and I'm a really good actress—Maja

Maja received a diagnosis of Asperger's syndrome at age 16 and self-identifies as an “aspie.” In her video, Maja specifies that she made her vlog post in response to people's observation that she is “too normal to be an aspie” and explains her neurotypical appearance by referring to her theatrical skills, as she accurately summarizes it in the quote above. The distinctive features of Maja's video and their prevalence in the data are discussed below.

Clear distinction between being neurotypical and performing neurotypical

Maja establishes a strong separation between being a neurotypical person and acting as one. She explicitly distinguishes autistic people from neurotypicals through pronouns such as “we” versus “they” and reference to her “real” autistic self versus her character. Maja emphasizes that her ability to perform neurotypical does not make her neurotypical. She shares:

I play a character every day. I play neurotypical. I act neurotypical, and I'm really good at it, but that doesn't make me neurotypical. It just makes me a good imitator.

In the video, she states that the fact that some YouTube viewers think that she is not autistic is like getting the Oscar for her “performance as neurotypical.”

A clear distinction between being and performing neurotypical was also found in two other vlog posts. Morton, for instance, emphasizes that although autistic “symptoms” can be “trained away” and the Asperger's diagnosis eventually removed, people don't “lose their Asperger's”; they just “have learned to control and hide” it.

Reference to explicit learning of neurotypical behavior

In her vlog, Maja relates that she has “spent around 20 years learning how to imitate neurotypicals” and that she “did not always seem as normal” as she “could seem” by the time she recorded the video. This explicit and conscious learning of neurotypical conduct was also acknowledged in seven other vlog entries (see Table 1). To illustrate, Morton stresses in relation to body language:

I've read up on all the body signals. I can tell if a person is angry (…) because I actually learned it. You might go ‘well, everybody has to learn, right?’ but no, most people actually pick it up (…) on their own. They don't need to learn it. It's instinctual to them.

Conscious effort to look/behave neurotypically

Consistent with the previous features, Maja acknowledges the conscious effort she makes to stay in character, that is, to look and behave neurotypically even in her vlogs. Interestingly, she seems to imply that clear expression of thoughts falls within the realm of neurotypicality; by the end of her video, she states:

Watching a YouTube video is like watching a movie. I have moments when I'm completely real in a YouTube video, but most of it is me just trying to express thoughts and hopefully getting them across.

Besides Maja's, the reference to a conscious effort to look/behave neurotypically is present in five other videos (see Table 1). As way of illustration, Anna states “the reason that I appear normal is because I have put a lot of effort into developing this,” while gesturing toward self.

Acting neurotypical as an energy/time-consuming activity that results in pain/burden

Maja describes her performance as neurotypical as emotionally draining. In her vlog post, she shares that sometimes she runs “out of energy” and has “nothing left and can't uphold this masquerade.” On those days, she doesn't “record any video,” “invite friends over,” “take phone calls,” “go to work,” or “go out of her apartment”; she just locks herself up. Maja stresses that performing neurotypical is equally wearying for “every single well-functioning aspie” that she knows. She thinks all of them get to a point where they cannot continue to act anymore.

Like Maja, eight other vloggers describe acting neurotypical as an energy/time-consuming activity (Table 1). Cher, for instance, asserts that for her

“being social and (…) interacting with people is like flexing a muscle repeatedly in that you get tired out, and I do get burnt out very easily.”

Among the consequences of her burnout, Cher mentions depression, disorientation, and “the need to shut in and recover, (…) let that muscle heal.” Interestingly, as a way to cope with the need for alone-time resulting from performing neurotypical, Cher urges her autistic viewers to be “upfront” and tell their friends and partners about their need to take some time to recover:

You need to be able to go to people and say, ‘I have Asperger's syndrome, and right now I need some time alone. I still love you. I still care about you, but I need a day to me.

Need/ability to hide the aspie/autistic side

The last distinctive feature of Maja's vlog post is her acknowledgment of an acquired ability—sometimes need—to hide her autistic persona. Talking about the times when she does not have energy to keep performing neurotypical, she shares:

There are weeks when I cannot go to work because I don't function well enough (…) There are days when I won't go out of my apartment because I've gotten so used to being accepted as normal, so I can't face the world when I am an Aspie.

Like Maja, four other vloggers mention this ability/need to hide their autistic side (Table 1). Angel, for instance, asserts:

a lot of autistic people will prevent themselves from stimming and from moving in the way that is most natural and comfortable for them because they don't want to be perceived as weird.

In sum, the account of neurotypicality as a masquerade presents neurotypical conduct as attainable through explicit learning and sustained effort. Performing neurotypical, however, may come at a high emotional and social price for individuals on the autism spectrum, eventually leading to isolation and other negative feelings and impacts on functioning.

Ruth's video: neurotypicality as a curse

My case is very mild, and (…) that sounds better, (…) and in a way it is better (…) But it's a real pain too. (…) It's a curse because you look normal, (…) but you are not normal—Ruth

The presenter in this vlog post was Ruth, a 45-year old who self-identifies as experiencing “high-functioning autism,” altthough she had not received a professional autism diagnosis by the time the video was recorded. In the vlog, she describes the drawbacks of having this form of autism, focusing on people's expectations and the negative consequences, or curse, of not meeting such expectancies. The distinctive features of Ruth's vlog post and their presence in other videos are discussed below.

Distinction between being neurotypical and being perceived as such

Ruth establishes a stark distinction between being nonautistic and being perceived by others as nonautistic. This feature differs from the similar feature under masquerade (i.e., being versus performing neurotypical) in that it focuses on perception rather than intentional enactment of neurotypicality. Ruth states:

(…) you look normal, you seem normal, you sound normal, you exhibit all of the characteristics, outwardly, that a normal person exhibits, but you are not normal.

As Ruth, seven other vloggers made the distinction between being neurotypical and passing as neurotypical (Table 1). Anna, for instance, explains that some autistic individuals are considered “high functioning” because they “appear basically… normal [makes air quotes] to normal [makes air quotes] people.”

Failure to meet expectations placed on individuals who are perceived as neurotypical

In her vlog post, Ruth discusses what she described as the “pain” or “curse” of experiencing “mild” autism and therefore being perceived as neurotypical: “expectations are placed on you that you be normal” all the time. Meeting such expectations is, however, impossible, since they rest on the assumption of neurotypicality, which clearly is not the case for individuals on the autism spectrum. Ruth relates, for instance, how her mother raised her “under the expectations of a normal child,” using her neurotypical brother as the “model for what normal was.” Because of her autism, Ruth was unable to always meet such expectations and was consequently “spanked,” “reprimanded,” “scolded,” and told that she “was a bad child, (…) a bad little girl,” that she was “not good enough,” that she was “not trying,” and that she was “lazy.” In a rather poignant remark, Ruth asserts:

From the time I was like four years old roughly, I was already labeled lazy, and that label has continued and has stuck with me my entire life.

Like Ruth, six other vloggers reference failing to meet the expectations triggered by their neurotypical appearance and the consequences thereof (Table 1). Hosh, for instance, shares that because her autism is “mild,” she would “overlook” it herself, and when she didn't understand what people said, she just “assumed” that she “was a stupid person who didn't listen.”

Inability/impossibility to act more neurotypically

Closely related with the previous feature is Ruth's acknowledgment of her inability/impossibility to always behave as a neurotypical person despite her substantial efforts. Talking about her childhood, she shares:

I couldn't change who I was. I couldn't make myself more functional than I was. I was what I was. But I tried! I always tried.

This inability/impossibility to always act neurotypically is highlighted by four other vloggers (see Table 1). In an insightful description of what Asperger's syndrome is, Luis Ángel states:

Another way of looking at it is I've been given some amazing gifts (…) Every gift, no matter how good it is, makes it hard to be normal in other situations, and, for me, that is what Asperger's is.

Although not recognized in other videos, Ruth's vlog post exhibited two other features worth noting: (1) confusion or lack of clarity regarding the inability to act more neurotypically and (2) increased caring—according to Ruth, ubiquitous among autistic people—that makes failures to act neurotypically more painful for the vlogger.

In sum, a narrative about neurotypicality as a curse highlights the negative consequences that people who seem neurotypical face when their conduct does not match their appearance. The curse is, therefore, not the fact that they look neurotypical but the expectations that accompany that perception and their inability to (always) fulfill them.

Discussion

The present study aimed to better understand autistic perspectives on neurotypicality to guide professional service provision toward practices that support overall well-being. In sum, the resulting analyses revealed three distinct narratives: achievement, masquerade, and curse. We highlight connections between these narratives and past literature, followed by a discussion of three potential implications for service providers.

By definition, neurotypicality is derived from social standards of what is considered expected behavior in a given context.¹⁵ Cage et al.'s²² survey of autistic adults (n = 111) indicated that only 7% felt society generally accepted them as an autistic person. Given this landscape, it is not surprising to uncover the narrative of achievement that framed neurotypicality as an attainable and worthwhile goal—a form of “betterment.” Autistic individuals often feel pressured toward neurotypicality to fit in, achieve conventional success, and avoid harm.^21,23,24 In fact, vloggers did highlight conventional achievements, such as attending college and traveling abroad. Such pressures to conform can also result in internalized stigma, a sense of shame around one's autistic identity,^18,23,36 that may have been contributing to features of the achievement narrative in particular. Jerry specifies being in “regular education” as one of his accomplishments and indicates that being put in an autistic classroom is not ideal “because then you start acting like them.” Both statements could be viewed as indicative of internalized stigma related to autistic identity and behavior. On the topic of potential internalized stigma, it was interesting to note that many of the vloggers utilized the word “normal” in reference to people or behaviors. Although viewed as a synonym of sorts with neurotypical, the term normal is more directly associated with the medical model of autism, which tends to assume a desirable standard and to pathologize difference.¹³

In contrast to the achievement narrative, the masquerade and curse narratives portray neurotypicality as a performance or perception that is never fully realized or sustained. Both Maja and Ruth's vlogs appear rooted in a concurrent autistic identity. Maja's references to the explicit effort she has put into learning neurotypical behavior are highly consistent with the literature on camouflaging in the autistic population. She refers to the process as exhausting, stressful, and a disconnection from one's true self.^20–24 Ruth's curse narrative poignantly highlighted both the effort involved in trying to meet neurotypical expectations and the pain inflicted on her by others (i.e., spankings, scolding, and moral judgments) when she did not meet their expectations. Such findings help illustrate the association between camouflaging and mental health demonstrated by prior studies and highlight the potential harm inherent in neurotypical expectations.^22,23

When combined with prior literature, these narratives on neurotypicality offer at least three implications for professionals supporting autistic individuals and their families.

First, professionals should be prepared to offer alternative narratives of neurotypicality to their colleagues, clients, and clients' families, especially when their current narratives do not seem to be serving them (or their client/family member) well. Part of this process involves examining the internalized stigma around neurodivergence and disability that often permeates fields such as psychology, medicine, and education.¹⁸ Polkinghorne asserts that psychologists can “assist clients in the reconstruction of life narratives that have been too restrictive.”^1(p182) Specifically, one could imagine folding the topic of neurotypicality into a discussion of medical diagnosis, educational goals, and/or intervention strategies. Specific books, essays, or vlogs could be shared as an example for discussion, for example, Willey's book Pretending to be Normal⁵ or Kassiane Sibley's essay The Cost of Indistinguishably Is Unreasonable.¹⁹ In addition, Forber-Pratt et al.³⁷ offer guiding questions that could be adapted to explore views toward neurodivergence and neurotypicality, such as “What do you remember being taught about autism growing up?” and “What do you think of when you hear the term autistic identity?” Such discussions can be useful in helping individuals develop a positive identity or disability community that can support more positive quality-of-life outcomes.³⁷

Second, it is critical to align goals for intervention and education with a client's views and preferences. Individuals who ascribe toward neurotypicality as achievement may strive toward diminishing autistic behaviors and/or increasing neurotypical identity. In contrast, individuals who view neurotypicality as a masquerade or curse, may be more likely to prefer building skills, learning compensatory strategies, practicing disclosure, and/or self-advocating for environmental changes that are consistent with their autistic identity. In either case, it makes sense to strive toward goals that translate directly into improved quality-of-life outcomes, as determined by the autistic individual.^20,38 If behavior change is desired, neurotypical behaviors could be presented as tools that help facilitate these more meaningful objectives, as opposed to being a valuable end goal in and of themselves. In this way, neurotypicality could be viewed as comparable with speaking another dialect or assuming another cultural identity—one that can be performed but need not be fully adopted.

Finally, regardless of one's goals, it seems critical to monitor the stress and effort involved in learning or enacting neurotypical behaviors. It is important to consider that personal goals may be shaped by internalized stigma and/or have unanticipated negative consequences. All three narratives noted the difficulties involved in the journey toward becoming or enacting neurotypical—difficulties that may not be inherently clear to nonautistic professionals, especially as they may not emerge immediately. Given the powerful references to exhaustion, isolation, and burnout across the vlogs and throughout the literature on camouflaging,^21,22,24 it is critical for professionals to be aware of the extent to which pressure to behave neurotypically may contribute to the relatively high rates of depression and suicide with the autistic population.^25,26 As proposed by Milton³⁶ and highlighted by Walker,¹⁴ nonautistic professionals need to recognize their own potential empathy limitations when working with autistic individuals—observing client behaviors, reflecting on one's own cognitive biases, and consulting explicitly with clients and their familiar caregivers about signs of potential distress. Signs of stress may warrant taking a break, changing course, and/or making referrals to an autistic-friendly mental health professional. Regardless, professionals can help reduce stress by enacting and advocating for environmental changes that respect and support autistic differences. The pressure toward neurotypicality and the negative consequences it represents may help explain, in part, the backlash from many in the autistic community toward “Cure Autism” campaigns.³⁹ For some, such campaigns may fail to acknowledge the extraordinary effort involved in enacting neurotypicality and the potential pain inflicted on autistic individuals when the potentially inevitable expectations of neurotypicality are not met.

In closing, the limitations inherent in the present study offer opportunities for future work. In particular, the narratives represented here cannot be considered fully representative of the entire autistic population. For example, the present data set consists predominantly of vloggers who identify with Asperger's syndrome. Consequently, it is important to examine how different autistic profiles intersect with other key identities such as race and gender to influence perceptions of neurotypicality. In addition, the present data set focused on videos spoken in English and published between 2005 and 2015. Therefore, results may not represent the views from non-English-speaking communities or more recently published vlogs. Given the relatively recent popularity of the neurodiversity paradigm in the United States,⁴⁰ one might anticipate increased critical analyses of neurotypicality within the autistic community, that is, narratives of neurotypicality as undesirable/unnecessary or as oppressive discourse. In addition to examining more recent/critical representations and cross-linguistic perspectives, future studies might choose to focus on different communicative mediums, such as books, blogs, or discussion groups. In sum, we hope that the present study serves to broaden the frame of everyday service provision by enhancing professional understanding of neurotypicality from the autistic perspective, increasing discussion about neurotypicality among autistic individuals and between autistic individuals and professionals, and amplifying autistic voices that remain largely underrepresented within professional discourse.

Authorship Confirmation Statement

The three authors conducted the analysis and collaboratively wrote the article. All the authors have reviewed and approved of the article before submission. This article has been submitted only to this Journal and is not published in press or submitted elsewhere.

Author Disclosure Statement

The authors declare that no competing interests, financial or otherwise, exist at the time of submission.

Funding Information

No funding was received for this study.