Insistence on sameness for food space appropriation: An exploratory study on Brazilians with autism (self-)diagnosis in adulthood

Abstract

Insistence on Sameness has been pathologized as a subtype of restricted, repetitive patterns of behavior, interests, or activities, in autism. We examined the meanings of Insistence on Sameness for autistic adults through the lens of critical autism studies and environmental psychology, exploring their foodways and experiences of food environments, in relation to eating out and grocery shopping, and their experiences of autism (self-)diagnosis. Data were collected from earlier individual email interviews with Brazilian adults on the autism spectrum (N = 16), either formally diagnosed in adulthood (n = 10) or self-diagnosed (n = 6). Our thematic analysis generated the following three themes: (1) Insistence on Sameness behaviors in food space as participants’ efforts for human–environment optimization—reducing uncertainty, uncontrollability, and exposure to unwanted sensory stimuli and social interaction; (2) suppressed Insistence on Sameness behaviors for being considered weird habits; and (3) realization of Insistence on Sameness as an authentically autistic way of coping when self-knowledge deepens through autism (self-)diagnosis. Our findings suggest autistic adults’ insistence on sameness is an authentically autistic way to appropriate space and exercise their right to comfortably co-exist and live as human beings and as themselves.

Lay abstract

Insistence on sameness is common in autistic individuals and continues into adulthood. Research shows it may be a way to cope with environments because of their sensory sensitivity, intolerance to uncertainty, and anxiety. Understanding the reasons for insistence on sameness from the perspective of autistic adults is important. To study the meanings of insistence on sameness for autistic adults, we interviewed 16 Brazilian autistic adults. All 10 formally diagnosed participants were diagnosed in adulthood. Six participants identified as being on the autism spectrum without formal diagnosis. During the interviews by email, we first asked about participants’ experiences with autism diagnosis, either formal diagnosis or self-diagnosis. Then, we asked about their experiences in places for eating out and grocery shopping. We found they tended to always go to the same places and use protective accessories to eat or shop comfortably. But their such behaviors were considered weird habits, first by other people and later by themselves. While trying to control their weird habits because of social pressure, they often suffered anxiety and meltdowns. When they finally learned of their autism in adulthood, they began to better understand who they are and why they experience the environment differently from others. This new understanding taught them that their so-called weird habits are actually part of their authentically autistic ways to cope with the weirder world. This study suggests that autistic adults’ insistence on sameness is an authentically autistic way to exercise their right to comfortably co-exist and live as human beings and as themselves.

Keywords

appropriation of space authenticity autistic adults food environments insistence on sameness

Introduction

Insistence on sameness (IoS) has been characterized by rigidity, routines, and resistance to changes (American Psychiatric Association [APA], 2013; Bishop et al., 2013; Kanner, 1943). IoS is part of typical development (D. W. Evans et al., 1997), but its prevalence and intensity are higher in autism (Leekam et al., 2011). Along with repetitive motor movements, restricted interests, and sensory sensitivity, it is one of the four domains of restricted, repetitive patterns of behavior, interests, or activities (RRBs), a core feature of autism spectrum disorder (APA, 2013). Autistic children’s IoS includes excessive adherence to specific routines, insistence on eating the same foods every day and wearing only particular clothing, and extreme distress at apparently small changes in the environment, including toys (Kanner, 1943; Prior & Macmillan, 1973). Studies on changes over time of IoS behaviors and motor RRBs, which are two core sub-groups of RRBs (Bishop et al., 2013; Turner, 1999), have suggested that IoS behaviors increase as one grows older in childhood and remain high in adulthood whereas motor RRBs remain high in childhood and decrease in adulthood (Barrett et al., 2015, 2018; Richler et al., 2010). IoS of autistic individuals has been suggested to function as mechanisms to cope with and control environments in relation to their sensory sensitivity, intolerance to uncertainty, and/or anxiety (Baribeau et al., 2021; Black et al., 2017; Hwang et al., 2020; Uljarević et al., 2017), but little is known about the reason, particularly from the perspective of autistic adults, of the relatively high level of IoS in adulthood. In the case of motor RRBs, research based on first-person accounts of autistic individuals has implied that suppression of their motor RRBs due to social pressure (Kapp et al., 2019; Kim & Bottema-Beutel, 2019), which is a type of autistic masking (Pearson & Rose, 2021), is a reason for its observed decrease, which may be disproportionate to the true decrease in their need for the behavior. While motor RRBs have been recently studied through the lens of critical autism studies involving autistic adults’ first-person accounts, IoS has received limited attention in this light.

RRBs have long been considered abnormal and maladaptive behaviors that need to be treated through therapies, namely, Applied Behavior Analysis, while there has been a gradual shift over the last decade or so in research on RRBs toward understanding their context and function (e.g. Bishop et al., 2006; Collis et al., 2022; Manor-Binyamini & Schreiber-Divon, 2019). Autistic adults have begun voicing against approaches to reduce or eliminate the autistic self-regulatory behaviors, which they call stims (Kim & Bottema-Beutel, 2019). The meanings of motor RRBs for autistic adults began to be explored by autistic scholars (e.g. Kapp et al., 2019) who approach autism through the “neurodiversity paradigm” (Walker & Raymaker, 2021). Stimming has been reported as an expression of strong emotions, either positive or negative (Kapp et al., 2019; Manor-Binyamini & Schreiber-Divon, 2019). That is, stimming is expressed, for example, when an autistic person is happy, nervous, or distressed. For many autistic self-advocates (e.g. Ne’eman, 2010), suppression of such communicative behavior is against basic human rights, especially when it is not harmful to the self and others. Autistic researchers have suggested shifting a focus from problematizing and eliminating autistic behaviors to understanding contexts of the behaviors, for quality of life (Kapp et al., 2019; Robertson, 2009).

Whereas in autism research, attention to sociophysical contexts of autistic behaviors and subjectivities of autistic individuals is relatively recent, the field of environmental psychology has long studied the relationship between people and their sociophysical environments (Stokols & Altman, 1987), with limited research on the relationship between autistic people and their environments (cf. Kanakri et al., 2016; Park-Cardoso & Silva, 2021). Environmental psychology studies the human mind and behavior, having its focus shifted from individuals’ brains to transactions between people and their sociophysical environments, ultimately contributing to creating environments that may increase people’s quality of life and well-being (Stokols & Altman, 1987). Perspectives, theories, and methods of environmental psychology (Gifford, 2016; Stokols, 1977b) may contribute to advancing understandings of autistic mind and behavior and creating environments that are supportive and friendly to autistic individuals. An ecological perspective in environmental psychology (Winkel et al., 2009) that emphasizes transactional relationships between the environment and people, who are actively situated in the environment, may be particularly useful in doing so. Situatedness, a phenomenological concept, concerns an “indissoluble correlation between the experiencing person and the experienced world” (Graumann, 2003, pp. 98–99). This ecological perspective in environmental psychology may complement and advance understandings of autistic behaviors that have been examined through the lens of rather individual-focused concepts.

An environment where autistic individuals are actively situated is food space. Food space is a daily space where people produce, purchase, and consume food. Food spaces such as restaurants and grocery stores are very challenging for many autistic people, according to first-person accounts of autistic authors on lived experiences of autism and strategies for life on the spectrum (e.g. Zaks, 2006). Restaurants and supermarkets were also indicated in an online survey as the two principal places that most respondents would like to see made more accessible for autistic people (Dimensions, 2012, cited in Cardoso, 2016). To negotiate challenging food environments, which include both food itself and sociophysical environments concerning food, autistic people may insist on sameness, such as going to the same places at the same times. Apparently mundane food space is also an example of everyday social space, where power relations are operated, where discrimination against difference occurs, and resistance against discrimination occurs (Lefebvre, 1991 [1974]). In a memoir, a man diagnosed with Asperger’s syndrome in adulthood wrote about his “quirk” of purchasing all groceries only from a store “two towns over, rather than from the one right by” his house being “protested” by his wife (Finch, 2012, p. 15). However, research on how autistic adults negotiate their food space is scarce (cf. Cardoso, 2016), with virtually no critical autism study focusing on IoS in food space.

This article aims to examine the meanings of IoS for autistic adults through the lens of critical autism studies and environmental psychology, exploring their foodways and experiences of food environments, in relation to eating out and grocery shopping.

Methods

The data we analyzed for this article were collected as part of our research project that studies autistic subjectivity and the production of food space. Data collection for the larger project consisted of two phases: an online survey (Phase 1) and follow-up individual email interviews (Phase 2). For this article, we analyzed our email interview data (Phase 2) from 2019 on participants’ foodways and experiences of food environments in relation to eating out and grocery shopping and their experiences of autism (self-)diagnosis. Based on Henri Lefebvre’s (1991 [1974]) theory that space is socially produced through which alienation and resistance to it happen, the project aimed to understand how autistic adults, a marginalized group of individuals, appropriate, represent, and recreate the previously proposed uses of food spaces to build food environments that are favorable to them. We analyzed the data for this article using reflexive thematic analysis (Braun & Clarke, 2019), with a blended approach: a mix of primarily inductive and semantic and partially deductive and latent. Detailed information about methods and other partial findings of the project are accessible in our prior publications (Cardoso & Silva, 2020; Park-Cardoso & Silva, 2021).

Participant recruitment

We recruited interview participants among our survey participants from Phase 1, which used an electronic data capture system, Research Electronic Data Capture (REDCap) (Harris et al., 2009, 2019). The survey participants were Brazilian adults (between 18 and 65 years old) who considered themselves to be on the autism spectrum. Autistic adults were eligible to participate in the survey regardless of formal autism diagnosis because autism is underdiagnosed in adults (Lai & Baron-Cohen, 2015) and in Brazil (Paula et al., 2011). To screen out individuals who are unlikely to be autistic, we had included the Ritvo Autism and Asperger Diagnostic Scale-14 (RAADS-14) (Eriksson et al., 2013) as an obligatory section at the beginning of the survey. The developers of the scale reported that the median score of their ASD group was 32, which was significantly higher than those of their control groups (15 for attention deficit hyperactivity disorder and 11 for other psychiatric disorders) with p < 0.001 (Eriksson et al., 2013). In their sample, a cut-off score of 14 or above yielded a sensitivity of 97% and a specificity of 46% in the attention deficit hyperactivity disorder group, 64% in the other psychiatric disorder group, and 95% in the non-psychiatric control group. The RAADS-14 scores of all 44 formally diagnosed and 38 self-diagnosed survey participants of the first phase of our project were above 14, with a median score of 34 for the formally diagnosed group and 33 for the self-diagnosed group. Of the 44 formally diagnosed survey participants, 38 were diagnosed in adulthood. We sent invitation emails with a link for an Internet-based informed consent form to all but two survey participants who were willing to be contacted by email for the interview; the two were excluded from interviews and did not receive invitations because of personal connections.

Participants

All interview participants (N = 16) were either formally diagnosed in adulthood (n = 10) or self-diagnosed (n = 6) and were college-educated at least to some degree. The mean and the range of participant age were 35.5 years and 27–53 years, respectively. Over 60% of the participants was white, about 30% was pardo, which refers to persons of mixed ethnic ancestries in Brazil, and one participant was Asian. Half of the participants worked full-time, one worked part-time, one retired, two studied full-time, and four did not work. We were later informed that two of the six self-diagnosed participants are now formally diagnosed after their participation in the research; but we still categorize the two as self-diagnosed participants for the analysis because we have not asked self-diagnosed participants about their potentially updated diagnosis after their participation in our research. Table 1 shows other interview participant demographic information.

Table 1.

Interview participant demographic (n = 16).

Participant ID	Gender	RAADS-14 score	Autism diagnosis	Age at formal autism diagnosis (years)
D1	Female	38	ASD	28
D2	Female	32	Asperger’s	34
D3	Female	34	Asperger’s	23
D4	Male	37	ASD	24
D5	Female	20	Asperger’s	52
D6	Other	40	ASD	30
D7	Female	23	Asperger’s	28
D8	Female	26	ASD	27
D9	Male	34	ASD	33
D10	Male	31	Asperger’s	27
S1^a	Female	38	Self (Asperger’s)	(43)
S2^a	Male	40	Self (ASD)	(36)
S3	Female	30	Self	N/A
S4	Female	42	Self	N/A
S5	Female	38	Self	N/A
S6	Male	29	Self	N/A

ASD: autism spectrum disorder; Asperger’s: Asperger’s Disorder and Self refers to self-diagnosed; RAADS-14: Ritvo Autism and Asperger Diagnostic Scale-14 (Eriksson et al., 2013); N/A: not available.

Participant IDs with a letter D refer to diagnosed participants, and those with a letter S refer to self-diagnosed participants.

Participants S1 and S2 were self-diagnosed participants but received their formal diagnosis after the research participation, and their formal autism diagnoses and ages at formal diagnosis are in parentheses.

Study design

Our interview questions were structured questions about foodways, experiences of food environments, and experiences of autism (self-)diagnosis. The interview schedule was a translated and adapted version of the one from the first author’s doctoral dissertation research (Cardoso, 2016), which was conducted in the United States. The interview questions included questions that were tailored for each participant according to their survey responses. The interview schedule starts with thanking for participation and asking about the motive of participation. The section on the experience of autism (self-)diagnosis, which is included in the larger project as a series of opening interview questions on background information that may help in contextualizing responses to following main interview questions and building rapport with participants, asks participants about what their life was like until their autism (self-)diagnosis, why a diagnosis was sought, and how they felt when they were (self-)diagnosed. The sections on eating out and grocery shopping in relation to participants’ foodways and experiences of food environments ask the following questions: characteristics of favorite and least favorite places and frequented places, underlying circumstances compelling to go to particular places, recent annoying experiences, efforts to change uncomfortable environments and situations, reasons for and challenges in using certain coping strategies, and challenges in eating with others (see Supplementary Materials for the default interview questions in Portuguese).

Data collection

A list of interview questions that were tailored for each participant was emailed to all survey participants who clicked on the “Yes” button in the informed consent form for the interview. Of 37 survey participants who received the interview questions, 16 provided their responses. All but one participant sent complete responses at once by email, having been informed that they may send their responses at once or over several occasions and that there may be follow-up email exchanges. The one participant responded to the questions regarding grocery shopping through WhatsApp, an instant messaging service, after responding to other questions by email. The first author’s WhatsApp number had been provided in the informed consent form as contact info in addition to an email address for clarification of the interview questions. WhatsApp was also an option through which participants could send photographs and legends for them, which were part of our project but not analyzed for this current article.

Analysis

Initially, we analyzed all the email responses using an inductive thematic analysis at a semantic level (Braun & Clarke, 2006) to identify emerging themes. The first author analyzed the data under the supervision of the second author. First, all email responses were downloaded and read a few times, as soon as each of them was received. The first readings, without any pre-determined code scheme, were to be familiarized with the responses. After reading several responses, recurrent words and expressions (e.g. always (sempre), avoid (evitar), weird habits (mania), feel sick (passar mal)) were noticed. Then, all email responses were translated into English by the first author. We analyzed the translated email interview responses while cross-checking the translated data with the original responses in Portuguese. Based on the recurrent words and expressions, preliminary codes were generated. As more responses were read, some new preliminary codes were added. After all responses were read several times, the codes were finalized and combined into categories.

One of the categories was “Insistence on Sameness (IoS),” which is a hallmark of autism but was not the focus of our larger project: most participants included phrases similar to “so, that’s why I always go to the same places” while answering the various questions about their foodways and experiences of food environments. To find themes related to IoS, responses on foodways and experiences of food environments were further analyzed using reflexive thematic analysis (Braun & Clarke, 2019). In addition, responses on experiences of autism (self-)diagnosis also were analyzed in relation to IoS because the responses often involved how the autism diagnosis provided new insights on autistic behaviors, including IoS. With an inductive orientation, we started coding the data based on recurrent words and expressions rather than reviewing the data through the lens of existing concepts and theories on IoS in autism literature. Through the inductive analysis primarily at the semantic level, we generated three preliminary themes—reasons of IoS in food space, socially attributed meanings of IoS, and new meanings of IoS. We then reviewed and interpreted the data, the codes, and the preliminary themes in the light of critical autism studies, the ecological perspective of environmental psychology, and Lefebvre’s theory of the production of space. We also identified several latent codes (i.e. suppression, authenticity), some of which promoted to (a part of) themes. Finally, we revised the codes and the preliminary themes (see Supplementary Materials for a code matrix) reflecting our interpretation of the in-depth and nuanced meanings of the data as well as to better summarize the subthemes.

Community involvement

The development of the original questions in English involved autistic adults’ participation in the stage of the revision of the questions (Cardoso, 2016). Our current interview questions for Brazilian autistic adults and a list that compares directly quoted interview excerpts in Portuguese and their translated version in English were reviewed by an autistic adult who lived and worked in both an English-speaking country and Brazil and has full professional proficiency in English and Portuguese (see Supplementary Materials for the comparison list). An autistic participant voluntarily distributed our invitation for participation to his autistic community, according to his answer to the interview question on the motivation of participation.

Reflexivity

As researchers, we are situated in our historical, cultural, and personal environments, and our own situatedness has influenced our perspectives on autism, choice of research methods, interpretation of data, and report of the findings. The first author was born and raised in South Korea, trained as an environmental psychologist in the United States, with expertise in autistic adults and their food environments, and is currently conducting post-doctoral research in Brazil. Being non-autistic, she has limitations in understanding the lived experience of autistic individuals, but she may empathize to some degree with autistic people’s sense of otherness because of her own lived experience of otherness while living as a foreigner. On the other hand, like many autistic people, she finds written communication easier than oral communication, at least while learning a foreign language, first English and then Portuguese. The choice of email interview for data collection was partly based on this mutual preference of communication type, but it inevitably must have resulted in limiting the participation of some autistic people with a preference for other than email. The second author, the advisor of the first author, is a Brazilian developmental psychologist whose current research areas are environmental psychology and Vygotskian historical–cultural psychology. Because of our training backgrounds and current fields of study, both of us are influenced more by Vygotsky’s (1993) perspective on the relationship between disability and environment than by the currently dominant medical model of autism. Vygotsky views disability not as an intrinsic deficit but as developmental difference that is integrated in the environment (Stetsenko & Selau, 2018). Throughout the data analysis process, we paid attention to the inseparable unity between characteristics of autistic individuals and characteristics of their environments where the individuals are actively situated.

Findings

Based on participants’ accounts, we identified three themes related to the meanings of their IoS behaviors in food space: (1) efforts for “human–environment optimization” (Stokols, 1977a, p. 25), (2) weird habits to be suppressed, and (3) an authentically autistic way of coping.

Theme 1: efforts for human–environment optimization

Participants’ IoS behaviors in food space, including insistence on eating out or grocery shopping at the same places at the same times, were their conscious and unconscious efforts to reduce uncertainty, uncontrollability, and exposure to unwanted sensory stimuli and social interaction. IoS was thus, in essence, the process for optimization of the relationship between their autistic selves and their food environments.

Reducing uncertainty

For most participants, reducing uncertainty was very important to feel comfortable. Thus, many replied that familiar places, where they knew what to expect, were their favorite places, and that they exclusively frequented such places (e.g. “. . . If the sound is too loud, then I don’t like it either, so that’s why I always go to the same place because I like to know that I’m going out and it’s going to work out” (D1)). For the same reason, unfamiliar places were least favorite places for many (e.g. “New places make me uncomfortable because I don’t know what I will find challenging, and new foods don’t attract me so much . . . I’d rather not eat in unfamiliar places to avoid surprises” (S1)).

Reducing uncertainty was critical for many participants partly because they experienced that even apparently harmless surprises or unforeseen events were debilitating for them. For example, when asked about her recent very annoying experience while eating out, a participant wrote about her experience in an improvised situation: “I went to my brother’s house, he had not cooked and took me to eat at a barbeque restaurant (churrascaria). I freaked out because it was not planned, the place was full” (D8).

In familiar places, where uncertainty is low, stressful situations caused by other factors were more manageable. Thus, some participants traveled far to eat out or shop in familiar places:

I’ve noticed that I get more comfortable in places I already know. For example, if I have to eat at peak times, I prefer a place I already know and am accustomed to eating, and sometimes I travel to this place rather than eating at a nearby restaurant. (S3)

Reducing uncontrollability

Participants’ IoS behaviors in the food space were also because of their strong need to be able to control challenging situations where they would become too stressed and feel sick. A common way to control extremely stressful situations was just to leave the place. Many participants had experiences of abandoning their shopping cart and leaving the store. But leaving was not as easy as one might think, because stressful situations would cause anxiety, which tends to cause disorientation.

In certain places, leaving was more difficult. To be able to quickly leave the place, many participants avoided places that would make exit difficult, such as too big stores (e.g. “I don’t like too big places. It takes time to get out of the place if I start to feel sick and need to leave. I end up avoiding this kind of place” (S1)). Unfamiliar places also made exit difficult for some participants because the location of the exit door of such places is not clearly registered in their mental map.

Most participants knew very well in which situations they would become too stressed and feel sick and need to leave immediately, and they often described those situations, while explaining characteristics of their favorite and least favorite places: “I prefer smaller markets with the older design . . . I feel sick in hot places, and I have trouble standing in line. If it’s hot, I get in and instantly leave, the same goes for lines” (D8).

Reducing exposure to unwanted sensory stimuli

Although just leaving a place when becoming stressed and feeling sick was a way to control extremely challenging situations, that action was rather a last resort, and participants used many alternative strategies to prevent such extreme situations. Those strategies were to reduce the duration and the intensity of exposure to unwanted but inevitable sensory stimuli while performing necessary daily activities.

Reducing the duration of exposure

Minimizing the time spent was a key strategy to deal with overwhelming sensory stimuli during grocery shopping. Having an established mental map was essential in reducing the exposure time, and many participants frequented only where they established “mental maps (mapa mental)” (Sommer & Aitkens, 1982).

The importance of having established a mental map was mentioned by many participants. Some participants did not use the specific term but were aware of its significance in navigating urban food space (e.g. I eat out only when I go to the doctor in (a nearby city), I eat in snack bars near the hospital because I am afraid of getting lost” (D9)). The term was used mostly in relation to grocery stores and reducing anxiety (“I feel slightly less uncomfortable when I have a mental map of the establishment” (D6)).

In places without established mental maps, some participants were neither able to shop fast for all necessary items nor prevent getting lost. Getting lost meant being exposed to overwhelming sensory situations for an extended time under stress:

I already know the aisles of the supermarket and where the goods I buy often are. This helps make buying faster. If I have to go to a supermarket I don’t know, it’s a disaster. It takes too long, I get lost and stressed. I just don’t buy what I should because I forget because of stress. So, I always go to the same place. I change only if it is necessary to change. (S1)

Some participants were able to easily establish mental maps (e.g. “I have a photographic memory, so I only need to walk around the store once to memorize the positions of the products and where they are” (S2)), but tranquility was a prerequisite for establishing them. Stores that open for 24 h and turn off sound in the middle of the night with almost no customers provided some participants with the tranquility to form mental maps and were preferred by them (e.g. “It was empty, I had all the tranquility to form my mental map” (D6)).

Reducing the intensity of sensory stimuli

To reduce their perceived intensity of sensory stimuli, participants both chose places and times with the lower level of stimuli and used various protective accessories.

Places that are less stressful with a lower level of stimuli were critical in preventing anxiety and meltdown. However, such places were rare, and choosing places that meet participants’ need resulted in frequenting only a few numbers of places, particularly for those who eat a very limited range of food because of sensitivities to certain texture, taste, and smell of foods and tended to always eat the same foods and buy the same products: “This is a very important feature. Not changing the food. No changes. Same restaurant and same food always, without many changes” (S1).

Most participants ate and shop during off-peak hours to reduce the number and level of sensory stressors, with more options for shopping times (e.g. “I always went at less crowded times” (S6), “So whenever possible I try to buy things at the later times as possible, as I will only need to deal with the excess ambient light, so feel less sick” (S2)). Many preferred shopping at odd times, such as in the middle of the night or at dawn (e.g. “I was really very happy at this (store) at night, during the week” (S5)).

Protective accessories that participants used included earphones, headphones, earplugs, hats, and sunglasses. With those accessories, many participants could stay in otherwise overwhelming places longer to properly eat or shop:

When I walk into a supermarket, I often wear dark glasses (even at night if I remember to bring them). If I don’t wear sunglasses and/or a headset, I avoid staying there, so buy the fewer products to stay inside as little as possible . . . I realized that if I wear sunglasses inside the supermarket (usually people take off the glasses inside), the place is less “aggressive” for me. (S4)

Reducing exposure to stressful social interaction

In the food space, participants encountered various situations where they would need to ask questions to locate items or make requests either due to their aversion to certain foods or their sensitivity to environmental stimuli. However, for them, who had difficulty in conventional social communication, presential social interaction was challenging. A participant had to just bear inconvenience because he could not even make a request that might appear very simple: “My complaint about them is that they always put onions in the salads (I hate raw onions), and I can never say not to” (S2). Some participants managed to make requests, but their instructions were often not properly followed in new places for them and caused frustration (e.g. “I made a request, I warned that I would like to remove the onion from the accompanying ingredients when tasting the onion came; I complained, there was a delay, in receiving, came with the exact same problem” (D4)). For it was difficult to have verbal social interaction (e.g. “it is always difficult for me to express my interests verbally (writing is quite easy)” (S4)), particularly under stress, only a few participants ever tried to have uncomfortable environments changed while eating out or grocery shopping.

For these difficulties in social communication and interaction, many of them preferred familiar places where they do not need to ask for help in finding grocery items and where foods are properly catered in comfortable ambient environments without having to make requests with difficulty:

There are 3 places I always like to go, which follow this profile of being spacious and not too noisy. I have no difficulties with variety because I always ask the same thing, and the ingredients I don’t like, I ask to exclude. In these places, they always send my order right, so I like to go there for that too. (D1)

Theme 2: weird habits to be suppressed

Although most of the IoS behaviors were participants’ strategies for human–environment optimization, negative meanings had been attributed to the behaviors, most notably weird habits (manias). Then, the behaviors with negative connotations were suppressed to the point of resulting in meltdowns (crises).

Negative meanings attributed by others

Many participants heard from other people they are weird (e.g. “I’ve always been considered too intelligent, but somewhat antisocial and “weird” (D2)) or have weird habits (e.g. “People say that I’m full of weird habits” (S3)).

Those others included participants’ own family members who knew that their (undiagnosed) autistic family member has a different way to experience sensory surroundings. But the different way of being also was often pejoratively described. For instance, a participant who objected to eating out at certain places replied:

. . . I feel bad explaining to them why I don’t want to go out with them to that place, because so many people (including my parents) find me “neurotic” (a word my parents have used since I was a child) or picky because it has these limitations and bothers me with these sensory aspects. (S4)

Some habits to protect one from overwhelming environments were contested by strangers, including authority figures, as well. While some types of the “protectors” that participants used in supermarkets or restaurants were considered normal, some were not. For example, wearing dark glasses drew attention, particularly at night: “As I wear a headset and sunglasses, security guards often follow me as they find this suspicious . . .” (S4).

Internalized negative connotations

Negative meanings attributed by others had been internalized in many participants, particularly female participants who self-identified as being autistic or formally diagnosed late in adulthood. When asked about her favorite places to eat out, a participant called her own habit of eating at the same places as “weird habit” (i.e. “I have this weird habit of . . .” (S3)) although she immediately detailed legitimate reasons for always eating at the same places and later revealed that she did not like being described as a person with many weird habits (i.e. “People say that I’m full of weird habits. And it hurts me”). For a participant who was formally diagnosed in her late adulthood, having many weird habits was one aspect of previously internalized negative self-understanding:

I always thought I was different, “from another planet,” weird, full of weird habits, no diplomacy (straightforward and blunt), awkward (silly), very intelligent but at the same time stupid for some things I didn’t understand right away. (D5)

Because habits related to IoS were often considered weird, first by others and later even by themselves, some participants felt embarrassed about having such habits and tried to suppress them in social situations:

. . . The fact that I always want to eat the same thing is also embarrassing and limiting. People want to find new places and different foods, and I don’t have that need. I usually don’t say anything, and I end up going not to be inconvenient (chata) to others. (S1)

Unbearable suppression, and meltdowns

It was common that constant suppression of “weird habits,” along with other autistic behaviors, in overwhelming environments and situations resulted in meltdowns. In social dining situations, participants would rarely wear earphones or ear plugs, eat at the same preferred place, or abruptly leave, because such behaviors were considered impolite, weird, or embarrassing, but suppressing those behaviors that could have prevented having meltdowns often came with “the consequences” (e.g. “. . . with other people around, I try not to change the situation, but it always comes with consequences (I come home overwhelmed mentally and physically by ‘holding on’ in that situation”) (S4)).

Participants had experiences of having more frequent or severe meltdowns before their autism diagnosis (e.g. “It was complicated. I suffered a lot of bullying, had horrible meltdowns and a lot of malaise that I call a ‘social hangover.’ Sometimes I had to recover for a week or two after a particularly busy day of social exposure” (D3); “What bothered me most was the lack of focus, the mental disorganization (and in life too) and the meltdowns that I had in certain environments and situations” (D1)). Having meltdowns was the most common motive to begin the process of formally diagnosing autism (e.g. “When I got a job, after a while I went through a severe emotional meltdown that seriously affected my health. I had a nervous breakdown and was referred to the psychiatrist” (D6)).

Theme 3: an authentically autistic way of coping

Participants began to realize that their so-called weird habits, including IoS, were rather their authentically autistic way of coping, as their liberating self-knowledge deepened through formal and/or self-diagnosis of autism.

Liberation through autism (self-)diagnosis and self-knowledge

For most participants, their autism (self-)diagnosis was a turning point in their life for an immense improvement in their self-knowledge (e.g. “The diagnosis is a synonym of self-knowledge (auto-conhecimento)” (D5)). Their improved self-knowledge through autism diagnosis led to a strong sense of liberation (e.g. “Considering myself autistic at 35 (now 36) has been liberating, as I am finally getting answers to all the questions I’ve had throughout my life” (S2)). “It was the most intense day of my life, it all made more sense, it was as if I had taken off the burden of all the guilt for being different that I carried” (D1). A few participants also seemed liberated from the idea that they are “crazy” (e.g. “I felt a deep relief; the ‘pieces’ started to fall into place, I could finally answer many of my internal whys and knew that I’m not crazy or sick, just different” (D3)).

For a more recently self-diagnosed participant, the liberation through self-knowledge happened even while responding to the interview questions:

I was a bit shaken by this, to realize that behaviors that I do and never noticed and things that make me too anxious may be a result of my autism traits, and not a “weird habit (mania)” as they say . . . the reflection was good, after the initial shock with the questions. I think I know myself a little better now. Thank you for the opportunity to respond. (S3)

Both self-knowledge and the sense of liberation further developed in some participants when they found and interacted with the online autistic community (i.e. “adults, diagnosed and with Internet access, started to discuss and compare experiences, observe and systematize information” (D6)) and learned from its collective self-knowledge.

Embracing authentically autistic self

Realizing, through their autism (self-)diagnosis, how much they have suffered while struggling to “look ‘normal’” and “fit in” (S4) and suppressing their autistic ways of coping with the “weirder world” (D6), many participants decided to live authentically as autistic selves—authenticity can be defined as “being true to one’s self” (Vannini & Franzese, 2008, p. 1621) and involves freely living in congruence with one’s true or core self despite social pressures to conform norms (Kernis & Goldman, 2006).

Participants began to reclaim their autistic “true” selves, which had been denied by others and negatively viewed even by themselves. For example, a participant who used to think that she was “full of weird habits” stated,

. . . Always trying to adapt/conform to neurotypical conventions. On the day of diagnosis, I cried a lot because I confirmed that I was everything I said before. Then I understood that I am that way, but it is my way of being and do not need to change to correspond to the expectations of others. I would not want to be someone else in the world than myself, the way I am and without changing anything. (D5)

Some participants understood and accepted their different ways of being as part of themselves and began to live a new life according to who they really are, caring less about being considered imperfect or weird by others:

Today I accept myself as I am. Everyone demanded perfection from me, and today I know it doesn’t work. I have limits (S3)

Today I am more productive at work and at home, and more constructive in the lives of people around me, even though I am “weird.” Today I proudly embrace my weirdness and, thus, am a better and happier person. (D6)

Some started to prioritize their own well-being over performing non-autistic ways to meet social expectations. They disagreed or stopped forcing themselves to do such performance (e.g. When possible, I prefer to have lunch where I feel better, even if it means eating alone if possible. I never agree to go eat together with other people . . .” (D10)).

Coping strategies based on self-knowledge

Even before their (self-)diagnosis, many participants already knew that they were different from other people, learned how to cope with challenging sensory situations by themselves through their own experience, and used their coping strategies accordingly. But, during and after the (self-)diagnosis, which significantly improved self-knowledge, participants more quickly learned about why they experience environments and situations differently from non-autistic others and which coping strategies may help them prevent anxiety and meltdowns: “My meltdowns being confused with the psychotic crisis was the worst that ever happened to me. Today it’s when I’m overloaded and I know what to do to calm myself down and I don’t have a breakdown” (S1).

Some learned new coping strategies from other autistic people:

With the help of other autistic people (autistas), much more than the poor material that the academy has to offer, the many mysteries of my life began to be solved, the pieces started to fit together . . . The idea of the protectors [earphones and headphones] came from other autistic people. (D6)

I came up these [coping] ideas and made them more ingenious as I came into contact with other “aspies” and as my need for silence and tranquility increased. (S5)

Some coping strategies were atypical and contrary to non-autistic normality but still used by some participants despite social pressures against the behavior. Increased self-knowledge regarding autism were related to insisting the coping behavior. For example, after learning about sensory overload in autism (i.e. “When I self-diagnosed [as autistic], I could understand that I wasn’t crazy (as of the countless times the stimuli were so many that I couldn’t handle my own existence, and today I know it’s called sensory overload)” (S4)), a participant who wears sunglasses in supermarkets at night to lessen “aggressive[ness]” of the sensory environment has “learned to just ignore” the security guards who often followed her for looking suspicious (S4).

Discussion

This is the first study that examined the meanings of IoS behavior of Brazilian autistic adults based on their voices in written responses, through the lens of critical autism studies and environmental psychology. Our thematic analysis revealed that IoS behaviors in food space were participants’ efforts for human–environment optimization that had been considered as weird habits and suppressed even to the point of resulting in meltdown, but later understood as an authentically autistic way of coping, while their self-knowledge deepening through formal and/or self-diagnosis of autism.

The first theme, efforts for human–environment optimization, essentializes the participants’ responses that detailed their efforts to reduce uncertainty, uncontrollability, and exposure to unwanted sensory stimuli and social interaction. “Human–environment optimization” is a concept that was suggested by Stokols (1977a) as the main research object of the field of environmental psychology (p. 25). The processes of human–environment optimization “reflect the active role taken by people in perceiving, shaping, and evaluating their surroundings according to their needs, as well as the reciprocal impact of the environment on people” (Stokols, 1977a, p. 25). Participants’ responses showed that their IoS behaviors, some of which have been pathologized (e.g. objecting to go to new places), are natural behaviors of human beings, who actively perceive, evaluate, and modify their experienced surroundings in which they are situated. Adaptive strategies to environmental stressors in sensory overload include “filtering out low-priority inputs, blocking inputs, increasing routinized, habitual behavior, and attempting to redefine the source of information” (G. W. Evans, 1984, p. 9). Given that autistic individuals have difficulty in filtering out low-priority inputs because of their different way of processing sensory information (Ben-Sasson et al., 2019; Bogdashina, 2003; Green et al., 2015), their pronounced behaviors to block environmental stimuli and to increase routinized, habitual behavior may be their natural adaptive strategies in sensory overload situations.

This categorization of efforts for human–environment optimization is highly relevant to two constructs in the literature on IoS: (1) intolerance of uncertainty and (2) sensory hypersensitivity. However, our categorization may contribute to advancing the current understanding of IoS by going beyond these two constructs’ intrinsically individual-focused and deficit-based approach. The term intolerance of uncertainty in the context of autism may inadvertently imply that an autistic person is deficient in tolerance of uncertainty and that a more desirable way of being is being tolerant of uncertainty as much as non-autistic people are. The term was recently criticized as a misnomer by Bervoets and colleagues (2021). In a letter, they scrutinized the character of the variable of uncertainty, which had been treated as if it was objective and isolatable like an allergen:

uncertainty is a subjective and a contextual variable. It is subjective because each of us has built different expectations (priors) against which prediction errors are generated. It is contextual because each situation, or goal, calls for seeing different things (different “errors”) as relevant, or salient. (p. 1009)

They suggested that both autistic and non-autistic individuals are “intolerant” of uncertainty and that the difference between the two groups lies on autistic individuals’ tendency to “create more uncertainty because of their heightened attention to prediction errors” (p. 1009). Our findings reported under the theme “efforts for human–environment optimization” suggested the subjective and contextual aspects of the variable of uncertainty. In an attempt to report the meanings of IoS from the perspective of autistic people, the title of the theme also shifts focus from sensory sensitivity per se to the ongoing process of efforts to seek congruency between the autistic person and the sensory overloading environment.

Participants’ IoS behaviors gained their meaning as an authentically autistic way of coping after autism (self-)diagnosis in adulthood. Like stimming (Kapp et al., 2019; Kim & Bottema-Beutel, 2019), the behaviors were considered weird habits and were suppressed before the diagnosis. This aspect of our findings is in line with findings of other critical autism studies that suggested that learning about one’s autism positively transforms concepts of self, such as realizing that autistic behaviors, which look abnormal, are normal behaviors of autistic people (Seers & Hogg, 2021; Tan, 2018), whose needs for their surroundings are different from those of the majority of society who generally does not have autistic characteristics, including sensory sensitivity and social communication difficulty. Our findings on IoS as an authentically autistic way of coping also tie well with the recently growing autism literature on authenticity, wherein authenticity is discussed as an important but overlooked element to consider regarding autistic adults (Bottema-Beutel et al., 2018; Stark et al., 2021). Future empirical research that asks autistic adults about the relationship between IoS and being authentically autistic would be welcome.

The participants’ trajectories through the three meanings of IoS—efforts for human–environment optimization, weird habits to be suppressed, and an authentically autistic way of coping—represent their processes of appropriation of food space in a society where autistic behavior is pathologized. Appropriation of space is “a feeling of possessing and managing a space, irrespective of its legal ownership, for its everyday use or as a means of identification” (Korosec-Serfaty, cited in Benages-Albert et al., 2015, p. 2). The word “appropriation” generally means “the act or process of taking something as one’s own or making something one’s own” (Graumann, 1976, p. 113), and appropriation of space is making space more habitable by appropriating it (Graumann, 2003, p. 104). In other words, the appropriation of space refers to making space more habitable by taking the space as one’s own. While autistic ways of being and behaving are ostracized and discouraged for being considered wrong, almost illegal, ways of being and behaving, many autistic people have become alienated to the point of feeling they are aliens (Sinclair, 2012 [1993]) and do not belong to the society they live in (Cardoso & Silva, 2020) and have experienced autistic burnout (Raymaker et al., 2020) trying to fit in and meet expectations of non-autistic others. For participants, IoS that was contested and shamed by others was an important way to exist more comfortably in a space where they often do not feel they belong. A place where alienation is overcome is appropriated space (Lefebvre, 1991 [1974]), and appropriation of space happens when people have been educated for appropriating the space (Graumann, 1976, p. 121). For participants, a turning point for the appropriation of food space that may lead to further overcoming alienation started when their liberating self-knowledge and knowledge of and confidence in authentically autistic coping strategies significantly improved through their autism (self-)diagnosis.

Our notion of the appropriation of space through IoS, as an authentically autistic way of coping, is in accordance with a suggestion that living authentically is a way for autistic individuals to construct their own “autistic spaces” that “encourag[e] self-acceptance” (Bulluss & Sesterka, 2020, The Difficulties of Being Authentically Autistic section, para. 5) and allow ones to “exercise self-care without shame or self-reproach” (para. 7). But we point out that the notion of the appropriation of everyday space blurs the dichotomy between “autistic space”—space that is of, by, and for the autistic people, not the neurotypical (NT) people—and “NT space” (Sinclair, 2009), in the direction of transforming dominant NT space into less NT and more autistic space. Unlike as in events for and by autistic people (e.g. Autism Network International (ANI)’s Autreat, “a retreat-style conference run by and for autistic people, designed to accommodate autistic people as much as possible, with presentations geared to the interests of autistic people,” Sinclair, 2009, Brief History of ANI section), in everyday public spaces, such as grocery stores and restaurants, autistic space rarely exists separately from NT space in a physical geographic sense. Lefebvre (1991 [1974]), who theorized that space is socially produced through three dialectically interrelated processes (i.e. spatial practice, representations of space, and representational space), aptly suggested that the three processes do not necessarily happen in separate spaces: he conceptualized space that is lived by those who seek alternative spaces as “representational space,” in dialectical relation to “representations of space” that are symbolic representations of hegemonic power relations. In this study, participants’ IoS as an authentically autistic way of coping seemed a process of transforming their subjective experience of hegemonic NT space into that of autistic space.

Strengths and limitations

This study approached IoS in a non-conventional way, which had both strengths and limitations. Instead of taking the medical meaning of IoS for granted or examining IoS per se, we considered the situatedness of the behavior of autistic individuals and found a more complete picture of contexts of IoS in the food space. The main limitations of the study relate to sampling. The use of the email interview method made it possible for autistic participants, many of whom find written communication easier than face-to-face communication, easily elevate their voices. But some of our findings, particularly the positive experiences of autism (self-)diagnosis and the high education level, may be due to selection bias, which is a common issue in online research with autistic adults. Future research with a wide range of options for the mode of the interview may reduce the selection bias. However, the sample size could have been larger, with more male participants, although this study, as a qualitative one, did not aim to generalize the findings but aimed to delve into first-person accounts for an in-depth understanding of the meanings of IoS. Oversampling of female participants is common in online research with autistic adults. Another limitation is not having included an interview question that directly asks participants about the meanings of IoS for them, because IoS was not a focus of the larger project. But we believe that our indirect approach to IoS enabled us to shed new light on it by being free from having assumptions on the meaning of IoS.

Conclusion

The findings of this exploratory study suggest that autistic adults’ IoS is an authentically autistic way to appropriate space through which they try to exercise their right to equally comfortably exist and live as human beings and as themselves. Research for the quality of life of autistic people would need to focus more on understanding the contexts of their IoS and developing adaptive strategies based on the lived experience of autistic individuals rather than searching for ways to reduce or eliminate observable manifestations of their efforts to make the weird worlds habitable for them. More ideally, future research should be directed toward transforming the currently weird, majority-centric worlds into inclusive worlds that better respect, accommodate, and are better designed for this minority group with different ways to sense, communicate, and cope.

Supplemental Material

sj-docx-1-aut-10.1177_13623613221121417 – Supplemental material for Insistence on sameness for food space appropriation: An exploratory study on Brazilians with autism (self-)diagnosis in adulthood

Supplemental material, sj-docx-1-aut-10.1177_13623613221121417 for Insistence on sameness for food space appropriation: An exploratory study on Brazilians with autism (self-)diagnosis in adulthood by JungJa Park-Cardoso and Ana Paula Soares da Silva in Autism

Supplemental Material

sj-pdf-2-aut-10.1177_13623613221121417 – Supplemental material for Insistence on sameness for food space appropriation: An exploratory study on Brazilians with autism (self-)diagnosis in adulthood

Supplemental material, sj-pdf-2-aut-10.1177_13623613221121417 for Insistence on sameness for food space appropriation: An exploratory study on Brazilians with autism (self-)diagnosis in adulthood by JungJa Park-Cardoso and Ana Paula Soares da Silva in Autism

Supplemental Material

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Supplemental material, sj-pdf-3-aut-10.1177_13623613221121417 for Insistence on sameness for food space appropriation: An exploratory study on Brazilians with autism (self-)diagnosis in adulthood by JungJa Park-Cardoso and Ana Paula Soares da Silva in Autism

Footnotes

Acknowledgements

The authors thank all participants for their generosity and sincerity. The authors also thank the autistic person who reviewed the interview questions and the direct quotes. It is regretful that the person had to choose not to be identified because of the discrimination against autistic people.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was financed, in part, by the Programa Nacional de Cooperação Acadêmica (PROCAD, National Program of Academic Cooperation) of the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES, Coordination for the Improvement of Higher Education Personnel)—Brazil (PROCAD/CAPES)—Finance Code 001 (grant no. 88887.124148/2014-00).

Ethical approval

This study received ethical approval from the Ethics Committee of the Faculty of Philosophy, Sciences and Letters of Ribeirão Preto of the University of São Paulo (protocol no. 03122818.0.0000.5407).

ORCID iD

JungJa Park-Cardoso

Supplemental material

Supplemental material for this article is available online.

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