The Experiences of Autistic People When Facemask Wearing and Interacting with Masked Individuals

Abstract

Background:

The World Health Organization recommended that individuals use a facemask to prevent the ongoing spread of COVID-19. Many governments implemented this recommendation into law. However, the increased usage of facemasks may have had particular impacts on the autistic population, due to differences in emotion processing, sensory issues, and anxiety about regularly changing rules. This research aimed to investigate the lived experiences of autistic people when wearing facemasks and their experiences interacting with others wearing facemasks.

Methods:

First, the research team conducted a content analysis of social media posts (n = 124) created by autistic individuals. Based on this, we developed a novel questionnaire and distributed it so that autistic adults could share their facemask experiences (n = 49).

Results:

Seven main themes were identified from the social media analyses: general attitudes toward masks, sensory issues, “wear-a-mask” message, rules and expectations, sunflower lanyards, social problems and benefits, and mask exemption. Secondary questionnaire responses highlighted that the experience of facemasks was mixed. Many individuals experienced sensory issues. Yet, for some individuals, there were benefits: they did not have to monitor their facial expressions to camouflage their autistic responses. Participants reported differing opinions on the topic of mask exemption, and the sunflower lanyard as a symbol of mask exemption. Data did not suggest anxiety around rule changes but did suggest feelings of anger at others who were perceived not to be following the rules.

Conclusions:

These findings highlight the mixed experiences of autistic people with facemasks and suggest lessons for future events in which there are rapid changes to public health messaging.

Community brief

Why is this an important issue?

During the COVID-19 pandemic, people across the world were suddenly asked to wear facemasks to stop the spread of infection. Rules around mask wearing then changed frequently, as scientists and governments learning more about the virus and how it spread. For autistic people, who have sensory sensitivities and can find unpredictable changes difficult and distressing, this may have made wearing a facemask more difficult than it was for non-autistic people.

What was the purpose of this study, and what did the researchers do?

This study set out to try to understand autistic people's experiences of wearing facemasks and interacting with other people who were wearing facemasks. To do this, the researchers took a two-stage approach. First, they looked at what autistic people were saying about facemask wearing online (in social media posts), and used this to develop a specific questionnaire. That questionnaire was then filled out by 49 autistic adults (age 18–63 years) online.

What were the results of the study?

The stage 1 social media posts revealed seven themes: general attitudes toward masks, sensory issues, “wear-a-mask” message, rules and expectations, sunflower lanyards, social problems and benefits, and mask exemption. The stage 2 questionnaire showed that autistic people had varied experiences of facemask wearing, with sensory issues being a common challenge. Some autistic people said that there were benefits of facemask wearing, such as being able to think less about controlling their facial expressions in social interactions. The sunflower lanyard, and the masking exemption it indicated, was a particularly divisive topic among participants.

What do these findings add to what was already known?

Before this research, nothing was formally known about the experiences of autistic adults when wearing facemasks, or their attitudes toward this during the pandemic. The few studies that do exist on facemask wearing focus on teaching children to tolerate masks better, rather than asking autistic people for their opinions. We now know that experiences varied, as would be expected in such a varied group, but that some common themes were present—especially around the sensory aspects of facemask wearing.

What are the potential weaknesses of the study?

As the research was conducted entirely online, there is potentially a bias toward autistic adults who are capable and interested in sharing their thoughts and experiences in writing. This means that our findings may not apply for autistic adults with learning difficulties, for example. The sample was also mostly made up of cis-women, which means that the experiences of other genders of autistic people may not be fully represented. The study also does not have a non-autistic control group, so some of these experiences may be common to autistic and non-autistic people.

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

Understanding how autistic adults experienced facemask wearing during the initial waves of the COVID-19 pandemic can inform how future mask mandates are implemented and communicated if there is a need for this in response to further waves or novel illnesses.

Introduction

In response to the emergence of the novel COVID-19 virus, a pandemic that has killed millions globally and continues to impact thousands through long COVID, the World Health Organization recommended that individuals use a facemask (covering both nose and mouth) to prevent the ongoing spread of the disease.¹ Other measures included: increased social distancing, restrictions on nonessential travel, and limitations on groups gathering.² However, facemask wearing was one of the first policies instituted in response to COVID by governments worldwide. For example, in the United Kingdom, it was compulsory to wear a mask indoors and on public transport for many months, with some variations depending on the regional “severity level” of cases: during some periods and in some regions when cases were low mask wearing was recommended rather than compulsory.

While some longitudinal studies reported adherence to rules within the United Kingdom had been high throughout the pandemic,³ others reported that citizens displayed confusion over what were perceived as constantly changing rules.⁴ Strategies imposed by the government meant that the public was expected to rapidly adapt their way of life and change daily behaviors to prevent the spread of COVID-19. Research is still required to assess how the experience of being expected to repeatedly and immediately change behavior may have been harder for specific groups, including autistic people.

Autism is a neurodevelopmental condition characterized by social, communication, and behavioral differences, with characteristics being present from childhood.⁵ While historically considered a “disorder,” increasingly the neurodivergence movement has championed the notion of autism as a difference, not disorder, one that alters an individual's way of processing sensory and cognitive information, as well as social interactions.⁶ In England and Wales, around 1.5% of the population are diagnosed as autistic, although it should be noted that the higher percentage of under-25s diagnosed suggests that there is potentially significant underdiagnosis among the over-25s, which would imply a higher overall autistic population.⁷ Thus, a sizeable minority of the population is autistic, and the impact of facemasks on this group is worthy of examination, especially given previous research that might predict interactions between facemasks and pre-existing face processing and sensory differences, and anxiety around uncertainty and change.

Indeed, facemasks could exacerbate difficulties some autistic people have with face processing. Autistic people reportedly spend significantly less time gazing at the eyes than non-autistic people,⁸ and spending more time looking at mouths when trying to understand others' emotions,⁹ and gaze reliance on the mouth may increase with age,^10–12 although recent research suggests that this is not universal, rather some autistic people spend a similar amount of time attending to the mouth region as non-autistic controls.¹³ Given the global uptake of facemasks, it is likely that this would impact how the autistic population process faces and emotions, as facemasks cover features they typically rely on in interactions. Previous research has demonstrated that a partial occlusion of the face is an obstacle for accurately reading emotions from facial expressions.^14,15 Research suggests that facemasks impair the ability to accurately identify facial emotion expressions, both in the general population¹⁶ and among those with high autistic traits.¹⁷

Facemasks could also interact with the sensory sensitivities associated with autism. Many autistic individuals experience hyper- or hyporeactivity to sensory input.⁵ These sensory features have been demonstrated across all modalities¹⁸ and are thought to reflect differences in sensory processing functions.¹⁹ Tactile sensitivity has been shown to be highest on the face and hands for autistic people,²⁰ which means that facemask wearing may feel additionally noticeable (and potentially distressing) compared with non-autistic people.

In addition to the face processing and sensory issues that could be associated with mask wearing, the rapid change required in daily behaviors during the pandemic, including the need to wear masks in certain settings, and changing rules throughout the pandemic, could interact with autistic individuals' difficulties with uncertain and unpredictable environments. Autistic individuals often report difficulties with uncertainty; they display a preference for certainty and often experience high levels of anxiety at the prospect of uncertainty.²¹

The COVID-19 pandemic has been characterized by uncertainty, and this was exacerbated by regularly changing rules and laws around behavior: these unpredictable changes are likely to have been more difficult for autistic people, as loss of usual routines provokes feelings of anxiety for them,²² and loss of routine also exacerbates existing mental health problems.^23–25 Online research conducted during the pandemic found that autistic individuals had difficulty adapting to rules that were imposed²⁶ with adults reporting more stress due to loss of normal routine.²⁷ It should also be noted that some autistic adults reported positive experiences during the pandemic, however, such as a reduction in sensory and social overwhelm.²⁷ The extent to which rules and requirements around facemasks specifically might pose a challenge is, however, unclear.

Thus, previous research would predict that facemasks could unequally affect autistic people due to their face processing and sensory differences and difficulties with change and uncertainty. However, facemasks may also have some benefits for autistic people. Autistic camouflaging (also called masking, although for clarity, we adopt the term camouflaging here) is the conscious or unconscious employment of specific behavioral and cognitive strategies to try to appear less autistic and therefore be more accepted in the predominantly neurotypical world.²⁸ Employment of these strategies is widespread among autistic people; 70% of participants in one study stated that they consistently camouflage.²⁹

For many autistic people, camouflaging is experienced as a social obligation rather than a choice.^30–32 Camouflaging is exhausting and stressful,^33,34 and higher levels of camouflaging are associated with worse mental health.³⁵ A study into autistic adults' communication preferences found that they used camouflaging techniques during face-to-face interactions with strangers or non-autistic people, stating that they felt uncomfortable making eye contact and exhausted by having to pull the right face.³⁶ Facemasks may remove the need for some external masking behaviors, such as controlling facial expressions, and may therefore have provide a sense of relief for some autistic people.

Whether or not facemasks are experienced negatively or positively by autistic people is unclear, but U.K. policymakers seemed to anticipate the former when creating legislation: they allowed autistic people to avoid wearing a facemask as they were considered “exempt” from legal requirements to wear them. The (now withdrawn) U.K. Government legislation in July 2020 set out rules for facemask wearing in public and outlined exemptions from facemask wearing. Individuals were considered exempt if they could not put on, wear, or remove a face covering either because of a physical or mental illness, impairment, or disability (within the meaning of section 6 of the Equality Act, 2010: autism would fall under this definition), or without severe distress. Thus, if an autistic person found that facemasks were impacting them, they could choose not to wear one.

However, the policing of who was “truly” justifiably exempt during periods of the pandemic where facemasks were required was challenging, especially for conditions such as autism that are not always a visible disability. Plausibly, facemasks could represent a topic around which autistic people felt challenged or attacked during periods of the pandemic when masks became an expected norm. Indeed, in the United States, the Centers for Disease Control and Prevention recommended masks be worn, and in January 2021, under the new Biden administration, an executive order was given that required (rather than recommended) masks in certain settings. Some exemptions were allowable under the Americans with Disabilities Act: as per the United Kingdom, autism could have been argued via this act to be an exemption from required mask wearing.

However, concerns were raised about the tension between mask requirements and the rights of disabled people: Pendo et al.³⁷ argued that people with nonobvious disabilities were burdened with inappropriate questions and even threats if they did not wear a mask in public, in part due to the politicized nature of mask wearing becoming a proxy symbol in favor or against the government at the time. Reports of individuals producing fake exemption cards, which fraudulently claim that the bearer has a disability, also led to suspicion of genuinely disabled peoples.³⁸ In the United Kingdom, the sunflower lanyard became a means for individuals to indicate they are mask exempt. The sunflower lanyard is a green lanyard with sunflowers on it, which is intended to be worn by those with hidden disabilities to help them access the support they need by indicating to people around them that they may need help, understanding, or more time.³⁹ However, there has been limited research into how well the sunflower lanyard functioned as a mask exemption indicator.

Despite previous literature that suggests autistic people's experiences of facemasks would be an interesting and valuable topic of study, research into facemasks and autism has been limited. Facemask tolerance training has been conducted with autistic children,^40,41 but these studies did not explore why children were resistant in the first place and focused solely on intervention effectiveness (in terms of increasing time spent wear a facemask). There is a gap in the literature for experiential research into the reasons behind why facemask wearing may be difficult for autistic individuals. One approach for examining experiences is to utilize social media posts. Research has previously successfully used these methods to gather lived experiences of autistic individuals,⁴² illustrating how pre-existing material can be utilized in research. The current study sought to use similar methods to explore the lived experience of autistic people wearing, and interacting with individuals wearing, facemasks.

Methods

Design

This study took a mixed methods approach, gathering qualitative and quantitative data from autistic people, over two stages. Part 1 of the study was a qualitative analysis of existing social media content collated from the platforms Twitter and TikTok. Content analyses of these social media posts then provided a framework to develop a novel online questionnaire, which formed part 2 of this study. This allowed us to explore in more specific detail topics that arose from the social media analysis. From this questionnaire, we derived both further qualitative and quantitative data.

Our rationale for this two-step approach was that the social media content was posted spontaneously, free from researcher intervention: these were posts made by autistic people, not in response to a question from a researcher, but because the topic was something relevant to them in their daily lives. Therefore, not only does analyzing the social media posts of autistic people lead to insightful findings about mask experiences in its own right, but by basing our questionnaire on the themes derived from the content analyses, we hoped to develop a questionnaire that was relevant to the concerns and experiences of autistic people, not just researchers.

Note that the analyses of the social media posts and questionnaire responses were done separately: that is, we did not perform a thematic analysis in which we developed themes that drew upon both social media and questionnaire response data. Collapsing analyses across the data sources would have led to issues with circularity: as the questionnaire was constrained by the content analyses results from the social media posts (as we based the questions off the main themes that were developed from the social media posts), the themes from the questionnaire responses would likely have mirrored back the themes from which we developed the questions in the first place.

We describe the two stages to our project separately below. Both stages were reviewed and approved by the ethics committee of the Department of Psychology, University of York.

Social media analysis

Sampling procedure

Before any sampling began, a data processing impact assessment (DPIA) was conducted to identify and minimize any risks associated with the personal data due to be processed. To comply with the DPIA, a data processing notice was posted on the laboratory website (Supplementary Materials). The principal investigator also consulted three autistic individuals to discuss the plans for the data collection and gain their opinions on whether it was acceptable to presume consent. All individuals stated that this was acceptable.

For content to be included within the analysis, it had to meet the following inclusion criteria: (a) Content focus must be on the experiences of autistic people wearing facemasks or interacting in masked settings; (b) Content must be produced/written by an autistic individual themselves (whether formally diagnosed or self-identified) rather than parents, teachers, medical professionals, and so on; (c) Content must be publicly accessible (no password requirement/barrier to accessing the post); (d) Content must not contain extreme distress and/or threat to well-being; (e) Content producer must be aged 18 years or older; (f) Content must be produced between the 17-month period beginning March 25, 2020, and ending September 25, 2021 (i.e., content should not predate the start of the pandemic).

To aid the search for content, the research team used a set of pre-agreed search protocols. Data collection on Twitter used the advanced search tool. In the section named “All words,” the following terms were added: ASD, Autism, Autistic, Mask. The term “masking” was added to the “None of these words” field. The purpose of this exclusion was to filter out the social media content that is focused on autistic masking/camouflaging rather than facemask wearing. The advanced search tool allowed for specific search dates to be entered: each search had set dates of weekly intervals, and the first piece of appropriate content in each interval was recorded. This was to ensure that the data captured the entirety of the pandemic and the range of differing posts. These posts then reflected the different stages, rules, and lifestyle changes of the pandemic.

Data collection for TikTok was carried out differently. The search terms were entered into the search function, and any content that met the inclusion criteria was recorded for coding. The search terms used for TikTok were as follows: “Autistic people mask wearing,” “masks and autism,” and any content flagged under the hashtags #Actuallyautistic and #Wearamask. It was not possible to enter specific search dates on TikTok. Again, the term “masking” was left out of the search to avoid any content relating to autistic camouflaging.

Social media sample

In total, 124 pieces of content were collated from the social media search. Forty-six pieces of content were obtained from TikTok, whereas 78 were obtained from Twitter.

Coding procedure for social media analyses

Each piece of content underwent an anonymization process. The research team transcribed the original content from both social media platforms. All handles, names, places, and identifying information was removed. Light paraphrasing was employed to anonymize the content; however, it was ensured that the main message remained and was still conveyed. Doing this ensured that content could not be reverse-searched, meaning that users could not be identified in the final data set. Once all content was paraphrased, the final data set was used to conduct a content analysis.

The first stage of the content analysis was first-pass categorization, allowing possible content categories to be identified. Two student researchers individually conducted this examination. From this, the researchers developed a series of major categories and subcategories. Each category was defined clearly within a codebook so that it was indicative of which material was to be included/classified (Supplementary Materials). The research team reviewed the categories before final coding took place.

Online survey analysis

Participants

Participants were recruited through several different outlets. The online survey link was posted on numerous social media platforms (e.g., Instagram, Twitter, and Reddit). Additionally, researchers contacted a number of different representatives for autistic groups/societies and asked to distribute the survey to their members.

In total, 49 responses were recorded that could be used for further analysis. Data collection took place between December 2021 and March 2022 (for context, this period was after mask wearing rules had begun to be relaxed in the United Kingdom). For consent purposes, any incomplete responses were assumed to have withdrawn and were removed from the sample. Average age was 30 years (range = 18–63 years; standard deviation = 10.70), with women forming the majority of participants (61.22%). See Table 1 for the demographic breakdown of our sample.

Table 1.

Demographic Characteristics of Survey Participants

Characteristic	Frequency, n (%)
Gender
Male	9 (18.37)
Female	30 (61.22)
Nonbinary	10 (20.40)
Diagnostic status
Formal diagnosis	36 (73.47)
Self-identify as autistic	12 (24.49)
Country of residence
United Kingdom	27 (55.10)
North America	14 (28.57)
Europe	4 (8.16)
Australia	2 (4.08)
No specification	1 (2.04)

Materials and procedure

The research team used the results of the social media analyses to develop an online survey. The survey contained 27 questions in total, 4 questions gathered demographic data. There were 13 closed questions and 10 open questions. A Likert scale was used to measure respondents' attitudes to wearing a mask. An open-text question was developed based on each major category of the social media analysis (Table 3). The survey explored individuals' attitudes to wearing facemasks and facemask exemptions, how individuals navigated the rules and social interactions, their experience of facemasks, and the sunflower lanyard. Informed consent was obtained from each individual before they could complete the questionnaire.

Coding procedure for questionnaire data

An individual content analysis was conducted for each open text question of the survey. The same coding procedure that was used for analyses of the social media data was employed. A codebook was created for each open text question (Supplementary Materials).

As there were multiple coders for this part of the study, 20.40% of the data was subjected to inter-rater reliability testing. Coders independently coded the data, and a percentage agreement of 94.92% was calculated through a process of independent coding and comparison, indicating high agreement between coders.

Results

The content analysis findings from the social media analyses are presented first, followed by the survey results.

Social media analysis

Following content analysis, seven major categories were developed. The percentage of posts that featured in each of these categories is summarized in Table 2, along with example quotes of the kind of content placed into each category. We briefly describe the categories below.

Table 2.

Content Analysis of Social Media Content

Content category	Frequency	Example quote (note: these examples are paraphrased)
Attitudes toward facemasks	55.65% (n = 69)	“I'm autistic but let me say this. Autism isn't an excuse to not wear a mask. If you can't wear one because of sensory issues, stay home. Some of us can't afford to get ill.”
Sensory issues	46.77% (n = 58)	“I am an autistic person who suffers from touch based sensory issues, although some of us don't wear masks lots of us have been doing so in public. It's all dependent on the kind of mask a person has. One idea is to wear a scarf and to avoid masks with a centre seam.”
Rules and expectations	37.90% (n = 47)	“As a result of this mask rule I haven't left the house in two weeks, and I don't plan on leaving until the rule is retracted, people won't be bothered that I have autism, just that I'm not wearing a mask.”
Mask exemption	32.26% (n = 40)	“Hi COMPANY, at your store in CITY yesterday I was told I could only come in if I was wearing some sort of face covering, I am exempt from face coverings because of my autism and the sensory issues they cause. Can you work on being more accessible to those who are disabled please.”
“Wear-a-mask” message	45.16% (n = 56)	“I still wear a mask even though it overstimulates me, I don't use my autism as an excuse for not abiding by a safety precaution. This is the reason people don't like autistic people.”
Sunflower lanyard	25.81% (n = 32)	“People are calling the lanyard the ‘exemption lanyard’ and it is making me very mad. I wear a mask and I am not exempt. I wear the lanyard to show I have autism and cannot communicate very well.”
Social problems and benefits	41.13% (n = 51)	“I don't understand people not wearing masks. I have ASD and sensory issues so I hate them, they give me hives, and I also have audio processing issues so not being able to see people talking is a nightmare. It triggers my anxiety into the stratosphere, yet I still wear a mask.”

ASD, autism spectrum disorder.

Posts coded as including “attitudes towards face masks” were posts that stated a clear personal attitude toward using facemasks, which could include a dislike of masks and that individuals did not wear them (n = 10), a dislike of masks but individuals wore them anyway (n = 48), and that there some positive sides to mask wearing (n = 11).

Relatedly, nearly half of the content included a “wear a mask message.” In some content, individuals projected strong outward emotion of frustration at people not wanting to wear a facemask. Others stated that autistic individuals should wear a facemask if they are able to do so, as this will also protect other people from COVID-19.

Posts coded as referring to “sensory issues” indicated content in which individuals were experiencing sensory issues related to wearing a facemask. Content also contained descriptions of how individuals have found ways to cope with the sensory issues and offered advice to other members of the autistic community, in terms of both how to deal with sensory issues when wearing a facemask (e.g., wearing masks for a limited period of time), and the types of facemask and materials that work best.

Posts coded as including “rules and expectations” referred to instances where individuals made references to facemask rules, or if not actual legal requirements, others' expectations about masks. Individuals experienced anxiety and anger about others not following the rules and not wearing a facemask. Individuals experienced social pressure to wear a facemask. Indeed, some individuals who felt that they could not manage to wear a mask in public felt trapped at home. Individuals also reported feelings of guilt for not being able to follow the facemask rules in place; however, some reported that the expectation for an autistic person to wear a facemask is ableist. Notably, we did not find much evidence of autistic people struggling to cope with rule changes, in contrast to what might have been expected given previous research on issues with uncertainty.

Of course, autism could be considered a reason for exemption from mask wearing. Nearly a third of posts in the analyses mentioned the topic of “mask exemption.” While some individuals stated that autism should be allowed as a valid exemption, arguing that every autistic person is different, and just because one autistic person is capable of wearing a facemask does not mean every autistic person is, others stated that autism should not be allowed as an exemption. The posts also highlighted that proving exemption was challenging, as neurotypical people were using autism as an excuse not to wear a facemask, and that there was increased pressure to provide proof of disability.

Indeed, one way that had been used to indicate mask exemption was the sunflower lanyard, which is intended to be worn by those with hidden disabilities to help them access support (Hidden Disabilities Sunflower, 2023).³⁹ The topic of the sunflower lanyard was a subject of controversy in the present data set, and posts conveyed differing opinions on whether the lanyard could be used to show facemask exemption. While some argued that facemask exemption was not the true meaning of the lanyard, others suggested that wearing the sunflower lanyard did mean a person was exempt from wearing a facemask, while yet others stated that in order for the sunflower lanyard to show facemask exemption, the lanyard needed to have an exemption card attached to the bottom, and that the exemption card was the most essential part in illustrating facemask exemption, rather than the lanyard itself.

Together, this makes clear a level of confusion and differing opinions about what the sunflower lanyard means and how it should be used. Individuals reported feelings of frustration at the perceived change in the meaning of the lanyard since the pandemic began. There were reports of members of the public challenging autistic people for wearing both the sunflower lanyard and a facemask at the same time.

Finally, we noted that posts reported impacts of facemasks on social interactions, which were coded as “social problems and benefits.” Facemasks were considered to have some positive impacts on social interactions (n = 20); individuals felt that facemasks alleviated some social pressure, removing the need to make small talk, for example. Facemasks also helped some individuals camouflage their autism, or alleviated the burden of camouflaging, as they did not have to effortfully regulate their facial expressions. However, others reported problems with social interactions due to facemasks (n = 31). Facemasks prevented lip-reading and hindered interpretation of social cues and added increased pressure to make eye contact during interactions. Facemasks also increased anxiety in many creators, with social problems arising due to reactions from the public to not wearing a facemask.

The categories outlined in Table 2 were used to inform the development of a novel questionnaire, which was used in part 2 of the study. Table 3 shows the way in which this social media analysis informed the questionnaire development.

Table 3.

Categories and the Questions They Informed Development of

Content category	Closed questions with multiple choice questions	Open questions
Attitudes toward facemasks	“Did you wear a mask in public when they were compulsory?” “Did you wear a mask in public when they were not compulsory/when masks were optional?” “Why do you wear a mask? Tick as many as apply” “Do you think everyone should wear a mask?” “In general, how have you found wearing a mask?”	N/A
Sensory issues	“Does wearing a mask cause you any sensory problems?”	“Do you have any advice for other autistic people who want to wear a mask and are experiencing sensory problems?”
Rules and expectations	“If you wore a mask at any time, did you worry about what people were thinking about you?” “If you went out in public without a mask, did you worry about what people were thinking about you?”	“Do you have any advice for other autistic people who are worried about their mask-wearing choices?” “How have you found following the rules about masks during the COVID-19 pandemic?”
Mask exemption	“In the UK, autism is generally recognised as a reason for mask exemption. Do you think autism should be considered an exemption to wearing a mask?”	N/A
“Wear-a-mask” message	“Do you think everyone should wear a mask?”	N/A
Sunflower lanyard	“Have you heard of sunflower lanyards?” “Do you wear a sunflower lanyard?” “Did you wear a sunflower lanyard before the pandemic?” “If you wear a sunflower lanyard, do you use your sunflower lanyard to show that you are exempt from wearing a mask?”	“What do you think the sunflower lanyard means?” “What is your attitude towards people wearing a sunflower lanyard to show exemption?” “What has your general experience with sunflower lanyards been, and has it changed since the pandemic?”
Social problems and benefits	“How do you think mask-wearing (either wearing a mask yourself or interacting with others wearing masks) has affected your social interactions?”	“Please give more information as to how masks affected social interactions for you” “Can you think of any positives to mask wearing? For example, it might make it easier to camouflage your autism. If yes, describe these positives below”

Survey analysis

A total of 49 survey responses were collected and analyzed. We summarize our findings below. Within the content analysis, each open text question contained a major category named “Other”: this category contained highly idiosyncratic responses whose advice/response was not given by multiple respondents and did not align with any of the existing major categories. For brevity, “Other” categories, or categories with only one respondent, are not included in the tables below. Complete lists of all categories can be found in the codebooks included in the Supplementary Materials.

Facemask-wearing behaviors and attitudes

All but one participant reported that they wore a mask when it was compulsory, and 33 (67.35%) reported wearing masks when they were optional. We asked participants to select (from pre-generated option) what motivated them to wear a mask. Table 4 outlines the frequencies with which different reasons were endorsed. Where participants selected “Other,” they were able to specify in their own words their reasons for mask wearing: content analysis was conducted on such responses. For some respondents, they felt that wearing a facemask allowed them to hide. This was in the sense of hiding aspects of themselves behind a facemask, and by increasing their anonymity or sense of privacy. Others reported that they wore masks to follow the rules, as it is mandated by a country's laws or regulations.

Table 4.

Participant Responses to “Why Do You Wear a Mask?”

Why do you wear a mask? (multiple choice options)	Frequency, n (%)
I don't wear a mask	1 (2.04)
I wear a mask to protect myself	32 (65.31)
I wear a mask to protect others	4 (8.16)
I wear a mask to encourage others to wear a mask	21 (42.86)
Other (with subcategories derived from content analyses)	12 (24.49)
Allows me to hide	6 (50)
To follow the rules	2 (16.67)
Other (idiosyncratic)	4 (33.33)

Sensory issues

Similar to results of the social media analyses, respondents to the questionnaire reported experiencing sensory issues when wearing masks (32 [65.31%] of respondents reported this). Participants were asked to offer advice on how to deal with sensory issues related to a facemask (Table 5). Frequencies of each category of response, and example quotes, are included below.

Table 5.

Participant Advice for Other Autistic People Facing Sensory Issues with Facemasks (N = 36)

Response category	n (%)	Example quote
Mask elements/types	21 (58.33)	“Try and find one that's made from a material that's comfortable as this helps a bit.”
Different masks until one works	14 (38.89)	“Try to find a sensory-friendly mask. Once I did that, almost all of my mask apprehensions disappeared.”
Not sure	4 (11.11)	“As I do not experience sensory problems from mask wearing, I do not feel qualified to give advice to those who do.”
Managing the duration of mask wearing	4 (11.11)	“Wear it when you can but if it becomes too much then remove it from your face.”
Practice wearing masks	2 (5.56)	“Try different masks until you find one that works. Practice over and over again, very short at first then longer and longer. Take breaks outside where it is safe to be without a mask as needed. If you can't tolerate it, take other safety measures like staying at home.”
Change smell in the mouth region	2 (5.56)	“Choose thin cloth masks and eat mints while wearing to minimize negative smell feedback.”

Responses included advice suggesting specific types of facemasks to try, or facemask elements that could be altered to reduce sensory symptoms. Participants reported using facemasks that did not touch the face, ensuring that the straps of the facemask do not touch the ears, and using a mask with a structured nose. Trying different fabrics such as disposable facemasks or a sealed facemask were also recommended. Some respondents suggested testing a variety of facemasks until participants found a facemask that met their sensory needs.

Other respondents advised a way of coping with sensory issues was to practice wearing facemasks at home. Changing the sensory input away from facemasks by using other sensory distractions or outlets for stress was also suggested. Managing the duration of wearing a facemask by planning times where individuals could take a break from wearing one, or simply staying at home, were ideas for those who found the sensory side of mask wearing extremely difficult.

Social interactions

Similar to the results from the social media analyses, both positive and negative effects of masks on social interactions were reported. When asked how masks have impacted social interactions, 14 respondents (28.57%) felt that it had not affected their interactions, 10 (20.41%) felt that masks had had a positive impact, and 25 (51.02%) felt that they had had a negative impact. Respondents were given the option to offer information about how facemasks have personally affected social interaction (Table 6). Using facemasks made social interactions for some respondents much more difficult, as they had difficulty understanding others.

Table 6.

Participant Responses to How Facemasks Impacted Their Interactions (N = 36)

Response category	n (%)	Quote
Difficulty understanding others	22 (0.61)	“Can't tell what people are saying”
Difficulty understanding me	11 (0.31)	“People have a harder time understanding what I say so I have to repeat a lot”
Relief others cannot see my expressions	5 (0.14)	“I didn't have to worry that my face was communicating something I didn't mean accidentally”
More anxiety/effort	2 (0.06)	“Made it harder to use facial expression or see how people are reacting to me. Creating more anxiety”
Allowed socializing during pandemic	2 (0.06)	“It made social interactions safe from a covid standpoint, so they actually occurred”

Participants reported difficulty monitoring others' reactions and facial expressions, and losing visual information usually used to lip-read and the muffling of speech were also reported. Respondents said that social interactions were negatively impacted as other people had difficulty understanding them as a result of wearing a facemask, again with issues around muffling and seeing facial expressions to add context to the interaction. Participants recalled feelings of anxiety and feelings of fatigue and having to put in extra effort when interacting in masks, leading to associations between masks and negative emotions for some.

Social interactions were positively impacted for other respondents, however; for some, other people not being able to see their facial expressions was a good thing. These participants said that their facial expressions did not always align with their actual emotions, so a facemask meant that they did not have to regulate this. Some respondents reported that facemasks were useful as they allowed individuals to socialize during COVID-19.

Hidden benefits of facemasks

Participants were asked if they could think of any positive aspects caused by wearing a facemask. Those participants who responded yes (N = 40, 81.63%) were asked to describe them (Table 7).

Table 7.

Participant Responses on the Hidden Benefits of Wearing a Facemask (N = 40)

Response category	n (%)	Quote
No pressure on my facial expressions	16 (0.4)	“Sometimes I like to think and smile to myself and talk to myself quietly and the mask stops people from seeing or possibly hearing this so I may seem less ‘weird’ when out in public.”
Physical health benefits/feel more safe from COVID	14 (0.35)	“An N95 will actually stop a virus sized particle and pollen.”
Mask allows for anonymity	10 (0.25)	“I like the idea of just not having to participate in socializing when I'm out. Hell, I wish the masks covered my eyes, too.”
Reduces anxiety	8 (0.2)	“Blend in more, less anxiety in public & in social situations. Less anxiety about facial imperfections.”
Reduces pressure to recognize/understand others	5 (0.13)	“It makes having conversations with others easier, because I don't have to pay attention to their facial expressions as well as their words, and i imagine that they are less likely to try to communicate by facial expressions too.”
Keep you warm	4 (0.1)	“I hate my face, so when I feel insecure it helps Keeps my nose warm and lips don't get so dry People don't recognise me Feel more anonymous People can't see my facial expressions Just feels safer in general.”
Reduces insecurity about appearance	3 (0.08)	“People can't see that I have bad teeth and judge me for it.”

Physical health benefits of facemask wearing included preventing the spread of COVID-19, reducing allergens and general spread of illness. Coupled with these physical health benefits, some participants suggested that they felt safer around other people who wore facemasks and were able to identify people who were anti-facemask. Participants also said that anxiety was reduced when facemasks were used by themselves or others around them.

Similar to some posts included in our social media analysis, some respondents also stated that wearing a facemask removed the pressure to control their facial expressions or make certain facial expressions when in a social situation. Participants reported being able to camouflage their facial stims and make vocal stims/echolalia less noticeable. Because other people were also wearing masks, participants felt that the pressure to recognize people or facial expressions was also reduced, which improved their anxiety.

Facemask-wearing choices: dealing with others

Participants were given the opportunity to suggest advice for other autistic people who were worried about what people think of their facemask-wearing choices (Table 8). Participants suggested trying to ignore or not care about other people's opinions when it came to facemask-wearing choices. Some stated that it was a reflection of others if they were to judge and that realistically other people are probably not even judging. Respondents also reported encouraging others to stand their ground by being assertive and standing up for their personal facemask-wearing choices, even in the face of others questioning or challenging them.

Table 8.

Participant Advice on How to Deal with What Other People Think of Their Mask-Wearing Choices (N = 30)

Response category	n (%)	Quote
Try not to care what others think	18 (0.58)	“I don't worry about what other people think about me, ever.”
Remember you are doing the right thing	14 (0.45)	“Try and remind yourself that you do have a valid reason for not wearing one if you feel you can't.’
Stand your ground	4 (0.13)	“Be firm with your boundaries and act confident when questioned.”
Wear a sunflower lanyard/other disability signifier	4 (0.13)	“Maybe a lanyard of some sort saying you're exempt from wearing a mask would be helpful in places where it's compulsory if you're not able to tolerate it due to sensory issues?”
Wear a mask if they are required	3 (0.09)	“It's not a big deal unless masks are compulsory—then I would say you must wear one where required.”

Some participants suggested that autistic people should remember they were doing the right thing, both for themselves and for safety by wearing a mask. Some participants suggested that individuals should abide by the rules and always wear a facemask when they are compulsory, but others highlighted the sunflower lanyard as a way to discourage people from challenging them about their facemask-wearing choices. Idiosyncratic responses included finding a way to distract oneself from worrying such as listening to music and seeking support from other people who are wearing facemasks.

Following rules

Participants were asked to discuss how they have found following the facemask rules during the COVID-19 pandemic (Table 9). Some participants talked about how they always followed the rules, found this easy when they were clear, and even liked the rules around facemasks. Within this group, people reflected that this may be related to features of being autistic, such as a preference for sameness and dislike of uncertainty or change. This could also make it difficult for them to interact with people who did not follow the rules. Other respondents found following facemask rules more difficult, often as a result of the sensory issues they experienced (sensory difficulties are discussed in more detail above, in response to our questions on sensory issues), whereas others stated that the rules were difficult to follow due to anxiety. Several people talked about having difficulty following rules when they were not clear or were constantly changing and that this caused anxiety.

Table 9.

Participant Responses on How They Found Following Facemask Rules (N = 48)

Response category	n (%)	Quote
Found it easy	25 (0.52)	“Wearing masks causes me no difficulty and so it has been easy to follow rules and regulations on mask wearing, even when they do not apply to me.”
Clarity of rules	10 (0.21)	“I have found it easier at those times when the rules have been mandatory rather than just suggested practice.”
Difficult due to sensory issues	8 (0.17)	“Hard as they cause a lot of sensory issues. I have issues with things touching my face. I struggle if I have my classes on my cheeks so having a mask on for long periods of time is hard.”
Difficult dealing with others who are not compliant	8 (0.17)	“Fine for me, but I live in an area where a lot of people refuse to follow the rules, and it severely increases my anxiety about being in public.”
I always follow the rules	6 (0.13)	“I am autistic so if there's a rule I tend to follow it.”
Difficult due to anxiety	4 (0.08)	“I've found them anxiety inducing at times but I've learnt not to be ashamed of the fact I'm mask exempt.”
Can be hard to remember to wear a mask	2 (0.04)	“Easy, so long as I remember. A lot of people here never wore them so I just visually have no cues to not forget.”

Understanding, use, and attitudes toward the sunflower lanyard

When asked if they had heard of sunflower lanyards, 34 (69.39%) participants said yes. Ten (29.41%) of our participants reported wearing a lanyard themselves, either all or some of the time. Individuals were asked what they thought the meaning of the sunflower lanyard was (Table 10). Most participants endorsed the original meaning of the sunflower lanyard (that it reflects a hidden disability, rather than autism per se, or that it simply means mask exemption).

Table 10.

Participant Responses on the Meaning of the Sunflower Lanyard (N = 34)

Response category	Frequency, n (%)	Example quote
Means hidden disability	30 (88.24)	“‘Invisible disability’—e.g., a learning disability or something else that isn't outwardly apparent”
Means mask exemption	3 (8.82)	“Exempt from mask”
Means they have autism	2 (5.88)	“That one is autistic”

Participants were then asked to state their attitudes toward people using the lanyard to show facemask exemption (Table 11). There was variation in how survey participants felt that the sunflower lanyard should be used, although broadly the survey participants felt more neutral or more positively toward it being used for mask exemption, compared with our survey media analyses. Some respondents said that they had no opinion or remained neutral to individuals using the sunflower lanyard to show facemask exemption. Others felt that it could indeed be a convenient means to show that one is mask exempt. Some participants disagreed with the sunflower lanyard being used to show facemask exemption.

Table 11.

Participant Attitudes Toward the Sunflower Lanyard Being Used as a Sign of Exemption (N = 31)

Response category	n (%)	Quote
Agree with exemption use	14 (0.45)	“A sunflower lanyard is a good tool to use.”
Original meaning removed	10 (0.33)	“It's taken away the actual meaning of a sunflower lanyard.”
No opinion/neutral	7 (0.23)	No opinion
Disagree with exemption use/should not be the only use	7 (0.23)	“Sunflower lanyards should only be used for people with hidden disabilities. Not all reasons for exemption are hidden disabilities.”

Some participants felt that the original meaning of the sunflower lanyard had been lost due to people using it to show facemask exemption: the change in meaning was perceived negatively. Some feared that there were anti-mask connotations being associated with the lanyard itself, while some reported feelings of frustration toward neurotypical people who were wrongly using the lanyard to display facemask exemption; indeed, many respondents who expressed that they felt the lanyard could be used to signify mask exemption qualified this by noting they felt this was fine providing the person was “genuinely” mask exempt, and not using it fraudulently. Others were concerned that the sunflower lanyard could be stigmatizing and potentially lead to autistic people being targets for harassment.

Participants were asked what their general experience with the sunflower lanyard has been and if it had changed since the pandemic (Table 12). Increased awareness and use of the sunflower lanyard since the pandemic were often mentioned. This experience, nonetheless, was viewed differently across the sample. One participant viewed this increase in awareness as a positive, stating that they felt less embarrassed to wear their sunflower lanyard now more people had them. Others, however, reported that the increase in awareness had negative implications, such as increased judgment from other people, or no longer being able to access help when wearing the lanyard. Participants felt that this experience may have been due to people not understanding the true meaning of the lanyard anymore, with people wrongly wearing a sunflower lanyard to display facemask exemption. Participants saw it as a good idea in theory, but felt that there were practical flaws with the initiative, as shown by the adoption by anti-mask groups.

Table 12.

Participant Responses on Their Experiences with the Sunflower Lanyard (N = 30)

Response category	n (%)	Quote
Good idea in theory	9 (0.3)	“I've never used one but think they are a good idea”
No experience/do not know	8 (0.27)	“I have no experience of them personally”
Increase in awareness/use—negative	8 (0.27)	“Yes, I wear mine in public and at work and have worn some kind of sunflower symbol since before the pandemic. People get confused because I wear a face covering and the lanyard as they assume that its because I'm exempt. I've worn my mask throughout even when wearing my lanyard”
Increase in awareness/use—neutral	5 (0.17)	“People with sunflower lanyards are not necessarily exempt. Some people wear both mask and sunflower lanyard. The density of lanyard wearers has increased since the pandemic began.”
No change in experience	4 (0.13)	“It doesn't really effect me. I put it on when needed and nothing really happens. This hasn't really changed. People still don't know what it means, for example my parents being asked if I could put a mask on whilst I was wearing the sunflower lanyard because I was unable to wear a mask before I got face shields and my parents saying I could even though I couldn't and forcing me to, triggering a meltdown that they told me to hold in as if that were possible. Now I get concerned that my lanyard is contaminated as it has been in public and my parents won't let me wash it.”

Discussion

To the best of our knowledge, this is the first study to look at autistic adults' experiences when wearing, and interacting with individuals wearing, facemasks. The initial social media analyses highlighted seven main themes, which were developed into a more detailed questionnaire. Both the analyses of social media and responses to the questionnaire highlighted a mixed experience with facemasks for autistic adults, reflecting some of the expected challenges (e.g., sensory sensitivities, impacts on social interactions) and highlighting other issues (especially the discussion around sunflower lanyards) and also some benefits to facemasks (such as the increased ability to camouflage).

The social media analyses included posts from a wide span of time across the pandemic, including different periods of time when facemasks were recommended versus a legal requirement, and as rules about their usage were relaxed. The questionnaire data in contrast were collected within a 4-month period, after mask rules had begun to be largely relaxed in the U.K. context. Nonetheless, in general, the responses to our questionnaire yielded similar reports to those extracted from our social media analyses. Specifically, few individuals in the social media analyses and few respondents to the questionnaire reported that they did not wear a mask at all, and data from both sources highlighted that autistic people found it frustrating when other people were seen not to be following the rules around facemasks.

Both data sources also highlighted variation in the experiences and views of autistic people, with regard to the positive and negative impacts of facemasks on social interactions, and their experiences with the sunflower lanyard (both topics are discussed further below). This variation highlights the importance of not conceiving of autistic people as a homogeneous group.

Both parts of the study highlighted the sensory difficulties experienced when wearing facemasks. Quotes such as “wearing a mask makes me want to scratch my eyes out” show just how difficult participants found wearing facemasks. This finding was not surprising, as autistic people experience hyperreactivity to sensory input,⁵ and research has suggested that the highest tactile sensitivity is in the facial region.²⁰ Many participants were determined to wear a mask even despite the discomfort they experienced, but our findings underline the importance of allowing autistic people to choose not to wear a mask, if they do not feel able to do so.

Our findings also showcase some of the strategies people used to try to mitigate the sensory impacts of masks. Indeed, in particular from the social media analyses, it was apparent that individuals were keen to share information and support the wider autistic community to wear masks where and when they could. Thus, it should be emphasized that while masks posed challenges, autistic people were not helpless but engaged in creative and determined problem solving.

Despite new rules being implemented and changed regularly, the autistic participants within our study coped relatively well with these disruptions: many reported that they found following facemask rules easy, and only a small number reported problems with changing rules. This differed to findings of previous research, which suggested that autistic people had difficulty adapting to the rules.^26,43 However, some of this previous research has been predominantly with child or youth samples, with insight into difficulties with rules and changes to routine gathered via parents²⁶: it is possible that autistic children might have found changing rules harder than autistic adults. It is possible that with regard to facemask rules, these rules were more explicit relative to other social or behavioral rules that may be more implicit, and thus harder to detect and to follow: indeed, some previous research highlighting that clear social rules imposed by pandemic restrictions were actually experienced positively by some autistic individuals.⁴³

Some of our own respondents stated that they found it easy when facemasks were mandatory, making the issue “black and white,” rather than recommendations that people choose to follow or not. Participants in our study did also have difficulty dealing with others who were not compliant with facemask rules. This is consistent with the literature suggesting that autistic people feel anxious and frustrated when placed in an environment where others do not follow rules.²⁷

Furthermore, although many autistic adults reported negative experiences with facemasks, a large proportion of participants highlighted hidden benefits of wearing, or interacting with others wearing, facemasks. Wearing a facemask provided some autistic people with a sense of relief as other people were unable to see their facial expressions, leading to a diminished need for them to camouflage. This supports previous literature, which has highlighted that autistic people often feel pressured to “pull the right face” when conversing face-to-face and that this aspect of camouflaging interferes with their ability to communicate.³⁶ Quotes from our participants also reinforce literature, which shows that autistic people view autistic camouflaging as a social obligation rather than a choice.^30–32 Other studies have also indicated that autistic adults have reported the reduced need to camouflage as a positive aspect of the pandemic.^27,43,44

Of course, this means that as we emerge from the pandemic, the autistic population may face new challenges: some participants even expressed that they wanted to continue wearing facemasks beyond the pandemic. However, facemask rules that were enforced at the start of the pandemic have now been revoked,⁴⁵ and facemask wearing is now the exception rather than the rule. As facemasks cease to be the norm, continuing to wear a mask may ostracize autistic people, or lead to their harassment, particularly if in some parts of the world they are still seen as political symbols, for example, in the United States.³⁸

This links to a broader question regarding adjustments to everyday life that were implemented during the pandemic, which could be beneficial and retained for autistic people. For example, for many years, disability advocates campaigned for autistic people to have the option to book appointments and access therapy online.⁴⁶ The pandemic caused the introduction of telehealth services, which unintentionally addressed this issue. Therefore, some changes that were brought in have been positive. Consequently, we should not necessarily revert to life as it was before the pandemic, but keep those which increase inclusivity in society. Experts have suggested that particular strategies or adjustments should be incorporated as universal options, not just during the pandemic⁴⁶ as this might be in the best interest of neurodivergent populations, including those with autism.

In both the United Kingdom and United States, autism was a legitimate reason for exemption from wearing a mask. However, how this exemption was implemented and signaled to others posed challenges. The sunflower lanyard was a topic of controversy within our findings. When established in 2016, the sunflower lanyard was used as an indicator that an individual possessed a hidden disability and might require extra assistance.³⁹ However, as the pandemic progressed, the lanyard began being used by individuals to signify facemask exemption. Government guidance pages implied that this was the purpose of the lanyard, stating that people who claim exemption may choose to “wear a visible sign of exemption such as a sunflower lanyard.”⁴⁷ Our initial social media analyses highlighted the sunflower lanyard as a significant discussion point among autistic people with regard to the pandemic, which prompted us to investigate views on the sunflower lanyard in our survey.

Social media analysis found that many autistic people were frustrated at the perceived change in meaning since the pandemic began, which to some extent was reflected to some extent in the survey responses, with some survey participants reporting that they felt that using the lanyard to show facemask exemption had removed its original meaning and that they had concerns that others were fraudulently using it. However, there was some discrepancy between the survey and social media analysis as a significant proportion of survey participants reported positive or neutral views on the use of the sunflower lanyard as a means to display mask exemption.

Plausibly, this difference between the two data sources was because autistic people used social media as a space to publicly highlight the problems with the sunflower lanyard. Indeed, only a third of our survey sample reported wearing the sunflower lanyard at all. Importantly, even respondents who felt that the lanyard could be a useful tool for easily displaying mask exemption often mentioned concerns that people who were not truly exempt were able to easily purchase a lanyard and use it fraudulently.

Our findings concerning the sunflower lanyard hold important implications for future public health messaging: governments and policy makers must consider the effects policies have on all communities. By co-opting the purpose of the sunflower lanyard, the original use was undermined. This “mislabelling” led to negative experiences for autistic people, with some participants stating that they were unable to access the extra assistance that they once could. Our present findings resonate with other reports of autistic people being disbelieved, rudely questioned, or even threatened over the issue of mask exemption.^37,38

Other research has indicated that within the United Kingdom, additional efforts are needed to ensure that health responses are inclusive toward people with disabilities from the planning stage.⁴⁸ Based on these experiences, we recommend governments consult neurodivergent people and their representative organizations during decision-making processes to ensure that in future events of rapid public health messaging, effective inclusive policies can be implemented. One key consideration highlighted by our participants is that more thinking is needed around ways to clarify exempt status, which are difficult to co-opt, while bearing in mind the need to avoid “singling out” those who do not wish to advertise their health or neurodiverse status.

This study was not without limitations. The sample is likely to reflect some degree of selection bias, and to not be representative of the whole autistic population. Our sample is also female-dominated, meaning that the experiences of other genders are underrepresented, and although this is not unusual in online autism research,^27,44 it differs to the usual perceptions of gender within the autistic population.⁴⁹ It should be noted that women are more likely to respond to online surveys in a range of contexts,⁵⁰ and therefore, this is not an unexpected gender balance for the sample. Research has suggested that autistic children had difficulty making sense of the pandemic, particularly understanding and following the series of rules that were associated with it,⁵¹ therefore their experience with facemasks and the rules associated to them may have differed to that of autistic adults, something the current study cannot speak to.

Additionally, our sample included only autistic people with the intellectual ability to maintain their own social media account and/or to complete the online survey. Research has suggested that those with intellectual disability and autism are especially vulnerable to physical, mental, and social effects of the pandemic.⁵² Therefore, those with intellectual disability may have had a different, more negative experience with facemasks compared with that of the autistic adults whose experiences we likely captured (although it is worth noting that we did not collect information about the cognitive characteristics of either the social media content producers or survey respondents.

The community guidelines for Twitter and TikTok do not exclude people with intellectual disabilities, so we should be careful not to make strong assumptions about the cognitive characteristics of our sample.) Future research into facemask usage or public health behaviors more broadly should consider these subgroups within the autism community, utilizing data collection approaches that are informed by participatory research frameworks to ensure that autistic children and autistic people with intellectual disability can meaningfully share their experiences.

During the initial search process of the social media analyses, the researchers made the decision to filter content so that any posts containing the word “masking” were excluded. It is clear that autistic people utilize camouflaging in many situations, and it can have a variety of impacts on them, including negative impacts on their well-being.²⁸ Both in our social media analyses and our survey responses, individuals noted that facemasks relieved some of the burden of camouflaging their autism. Although necessary to practically find social media posts relevant to our research topic at hand, it is likely excluding posts with “masking” may have removed some content that pertained to facemasks and camouflaging.

Further research on the interactions between autistic camouflaging and wearing facemasks could help to explore the potential future uses of facemasks to help alleviate some of the burden of autistic camouflaging. It might also be the case that as facemasks cease to be a social norm, and autistic people feel no longer able to wear them even if they would like to, autistic people feel increased fatigue from camouflaging, if they have become used to not needing to camouflage their autistic traits as much: future research could examine these potential “bounce back” effects of autistic camouflaging as restrictions brought about by the pandemic are lifted.

The pandemic has impacted and continues to effect the whole population; our study did not use a control group. A comparison with non-autistic adults would have enabled investigation of which impacts were autism-specific. Future research could use similar methodologies with different groups such as non-autistic people or other neurodivergent populations for comparisons to be made.

Conclusions

This research increases our understanding of how autistic adults found wearing, and interacting with other people wearing, facemasks. Captured through both social media and survey analyses, the experiences of facemasks for autistic adults varied greatly. Negative experiences were associated with a hindrance in social interactions and sensory issues when using facemasks. Positive experiences were associated with the hidden benefits of facemasks; the pressure to camouflage especially was reduced. The sunflower lanyard, and the negative experiences associated with it, should be used as a lesson for future public health messaging; governments must include representatives from diverse groups in the decision-making process so that the impact of policies can be fully considered, and effective inclusive policies can be implemented.

Footnotes

Authorship Confirmation Statement

H.H. designed the project, conducted the consultation with community representatives, completed the data processing impact assessment, oversaw data analysis, and contributed to the write-up of the study. J.W. and A.C. conducted the social media searches, collated the social media data, collected the survey data, performed the content analyses, and contributed to the write-up of the study. F.S. contributed to the write-up of the study.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

No funding was received for this article.

Supplementary Material

References

WHO. When and How to Use Masks. World Health Organization. Published 2020. https://www.who.int/emergencies/diseases/novel-coronavirus-2019/advice-for-public/when-and-how-to-use-masks Accessed March 23, 2023.

Wright

, Fancourt

. Do predictors of adherence to pandemic guidelines change over time? A panel study of 22,000 UK adults during the COVID-19 pandemic. Prev Med. 2021; 153:106713. https://doi.org/10.1016/j.ypmed.2021.106713.

Fancourt

, Bu

, Mak

, Steptoe

. COVID-19 social study. Results Release. 2020. https://allcatsrgrey.org.uk/wp/download/public_health/3d9db5_c99f0f8bb89545a6a10040f27949f7f9.pdf Accessed July 12, 2023.

Williams

, Armitage

, Tampe

, Dienes

. Public perceptions of non-adherence to pandemic protection measures by self and others: A study of COVID-19 in the United Kingdom. PLoS One. 2021; 16(10):e0258781.

American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders: DSM-5. Virginia: American Psychiatric Association; 2013.

Walker. What Is Autism? • NeuroQueer. NeuroQueer. Published 2014. https://neuroqueer.com/what-is-autism/ Accessed March 23, 2023.

NHS. NHS Mental Health Implementation Plan 2019/20–2023/2024. 2019. www.longtermplan.nhs.uk/wp-content/uploads/2019/07/nhs-mental-health-implementation-plan-2019-20-2023-24.pdf Accessed October 3, 2022.

Frazier

, Strauss

, Klingemier

, et al. A meta-analysis of gaze differences to social and nonsocial information between individuals with and without autism. J Am Acad Child Adolesc Psychiatry. 2017; 56(7):546–555. https://doi.org/10.1016/J.JAAC.2017.05.005.

Klin

, Jones

, Schultz

, Volkmar

, Cohen

. Visual fixation patterns during viewing of naturalistic social situations as predictors of social competence in individuals with autism. Arch Gen Psychiatry. 2002; 59(9):809–816. https://doi.org/10.1001/archpsyc.59.9.809.

10.

Hutchins

, Brien

. Conversational topic moderates social attention in autism spectrum disorder: Talking about emotions is like driving in a snowstorm. Res Autism Spectr Disord. 2016; 26:99–110. https://doi.org/10.1016/j.rasd.2016.03.006.

11.

Jones

, Carr

, Klin

. Absence of preferential looking to the eyes of approaching adults predicts level of social disability in 2-year-old toddlers with autism spectrum disorder. Arch Gen Psychiatry. 2008; 65(8):946–954. https://doi.org/10.1001/archpsyc.65.8.946.

12.

Sadria

, Karimi

, Layton

. Network centrality analysis of eye-gaze data in autism spectrum disorder. Comput Biol Med. 2019; 111:103332. https://doi.org/10.1016/j.compbiomed.2019.103332.

13.

, Gu

, Zhao

. Atypical gaze patterns to facial feature areas in autism spectrum disorders reveal age and culture effects: A meta-analysis of eye-tracking studies. Autism Res. 2021; 14(12):2625–2639. https://doi.org/10.1002/aur.2607.

14.

Kret

, de Gelder

. Islamic headdress influences how emotion is recognized from the eyes. Front Psychol. 2012; 3:110. https://doi.org/10.3389/fpsyg.2012.00110.

15.

Roberson

, Kikutani

, Döge

, Whitaker

, Majid

. Shades of emotion: What the addition of sunglasses or masks to faces reveals about the development of facial expression processing. Cognition. 2012; 125(2):195–206. https://doi.org/10.1016/j.cognition.2012.06.018.

16.

Carbon

. Wearing face masks strongly confuses counterparts in reading emotions. Front Psychol. 2020; 11:2526. https://doi.org/10.3389/fpsyg.2020.566886.

17.

Pazhoohi

, Forby

, Kingstone

. Facial masks affect emotion recognition in the general population and individuals with autistic traits. PLoS One. 2021; 16(9):e0257740. https://doi.org/10.1371/journal.pone.0257740.

18.

Leekam

, Nieto

, Libby

, Wing

, Gould

. Describing the sensory abnormalities of children and adults with autism. J Autism Dev Disord. 2007; 37(5):894–910. https://doi.org/10.1007/s10803-006-0218-7.

19.

Baranek

, Little

, Parham

, et al. Sensory Features in Autism Spectrum Disorders Handbook of Autism and Pervasive Developmental Disorders, vol. 1. Hoboken: Wiley;. 2014.

20.

Riquelme

, Hatem

, Montoya

. Abnormal pressure pain, touch sensitivity, proprioception, and manual dexterity in children with autism spectrum disorders. Neural Plast. 2016; 2016:1723401. https://doi.org/10.1155/2016/1723401.

21.

Jenkinson

, Milne

, Thompson

. The relationship between intolerance of uncertainty and anxiety in autism: A systematic literature review and meta-analysis. Autism. 2020; 24(8):1933–1944.

22.

Gillott

, Standen

. Levels of anxiety and sources of stress in adults with autism. J Intellect Disabil. 2007; 11(4):359–370. https://doi.org/10.1177/1744629507083585.

23.

Pellicano

, Stears

. The hidden inequalities of COVID-19. Autism. 2020; 24(6):1309–1310.

24.

Tromans

, Kinney

, Chester

, et al. Priority concerns for people with intellectual and developmental disabilities during the COVID-19 pandemic. BJPsych Open. 2020; 6(6):e128.

25.

Bal

, Wilkinson

, White

, et al. Early pandemic experiences of autistic adults: Predictors of psychological distress. Autism Res. 2021; 14(6):1209–1219.

26.

Mutluer

, Doenyas

, Aslan Genc

. Behavioral implications of the Covid-19 process for autism spectrum disorder, and individuals' comprehension of and reactions to the pandemic conditions. Front psychiatry. 2020; 11:561882.

27.

Oomen

, Nijhof

, Wiersema

. The psychological impact of the COVID-19 pandemic on adults with autism: A survey study across three countries. Mol Autism. 2021; 12:1–21.

28.

Cook

, Hull

, Crane

, Mandy

. Camouflaging in autism: A systematic review. Clin Psychol Rev. 2021; 89:102080.

29.

Cage

, Troxell-Whitman

. Understanding the reasons, contexts and costs of camouflaging for autistic adults. J Autism Dev Disord. 2019; 49(5):1899–1911. https://doi.org/10.1007/S10803-018-03878-X/TABLES/5.

30.

Hull

, Petrides

, Allison

, et al. “Putting on My Best Normal”: Social camouflaging in adults with autism spectrum conditions. J Autism Dev Disord. 2017; 47(8):2519–2534. https://doi.org/10.1007/s10803-017-3166-5.

31.

Schneid

, Raz

. The mask of autism: Social camouflaging and impression management as coping/normalization from the perspectives of autistic adults. Soc Sci Med. 2020; 248:112826. https://doi.org/10.1016/j.socscimed.2020.112826.

32.

Mandy

. Social camouflaging in autism: Is it time to lose the mask?. Autism. 2019; 23(8):1879–1881. https://doi.org/10.1177/1362361319878559.

33.

Livingston

, Colvert

, Bolton

, Happé

. Good social skills despite poor theory of mind: exploring compensation in autism spectrum disorder. J Child Psychol Psychiatry Allied Discip. 2019; 60(1):102–110. https://doi.org/10.1111/jcpp.12886.

34.

Tierney

, Burns

, Kilbey

. Looking behind the mask: Social coping strategies of girls on the autistic spectrum. Res Autism Spectr Disord. 2016; 23:13. https://doi.org/10.1016/j.rasd.2015.11.013.

35.

Beck

, Lundwall

, Gabrielsen

, Cox

, South

. Looking good but feeling bad: “Camouflaging” behaviors and mental health in women with autistic traits. Autism. 2020; 24(4):809–821. https://doi.org/10.1177/1362361320912147.

36.

Howard

, Sedgewick

. “Anything but the phone!”: Communication mode preferences in the autism community. Autism. 2021; 25(8):2265–2278. https://doi.org/10.1177/13623613211014995

37.

Pendo

, Gatter

, Mohapatra

. Resolving tensions between disability rights law and COVID-19 mask policies. Md L Rev Online. 2020; 80:1.

38.

Grunawalt

. The villain unmasked: COVID-19 and the necropolitics of the anti-mask movement. Disabil Stud Q. 2021; 41:3.

39.

Hidden Disabilities

Sunflower

, 2023. A Symbol for Non-Visible

Disabilities

. https://hiddendisabilitiesstore.com/ Accessed March 23, 2023.

40.

Halbur

, Kodak

, McKee

, et al. Tolerance of face coverings for children with autism spectrum disorder. J Appl Behav Anal. 2021; 54(2):600–617.

41.

Lillie

, Harman

, Hurd

, Smalley

. Increasing passive compliance to wearing a facemask in children with autism spectrum disorder. J Appl Behav Anal. 2021; 54(2):582–599.

42.

Harmens

, Sedgewick

, Hobson

. The quest for acceptance: A blog-based study of autistic women's experiences and well-being during autism identification and diagnosis. Autism Adulthood. 2022; 4(1):42–51. https://doi.org/10.1089/aut.2021.0016.

43.

Maljaars

, Gijbels

, Evers

, et al. Impact of the COVID-19 pandemic on daily life: Diverse experiences for autistic adults. J Autism Dev Disord. 2023; 53(1):319–331.

44.

Bundy

, Mandy

, Crane

, et al. The impact of early stages of COVID-19 on the mental health of autistic adults in the United Kingdom: A longitudinal mixed-methods study: Autism. 2022; 26(7):1765–1782. https://doi.org/10.1177/13623613211065543.

45.

Disabled Persons Transport Advisory

Committee

, 2021. DPTAC Position on Face Coverings and

Exemptions—GOV

.UK. https://www.gov.uk/government/publications/dptac-position-on-face-coverings/dptac-position-on-face-coverings-and-exemptions Accessed March 23, 2023.

46.

Cassidy

, Nicolaidis

, Davies

, et al. An expert discussion on autism in the COVID-19 pandemic. Autism in Adulthood. 2020; 2(2):106–117.

47.

Cabinet Office, 2022. COVID-19 Response: Living with COVID-19- GOV.UK. https://www.gov.uk/government/publications/covid-19-response-living-with-covid-19 Accessed March 23, 2023.

48.

Kuper

, Banks

, Bright

, Davey

, Shakespeare

. Disability-inclusive COVID-19 response: What it is, why it is important and what we can learn from the United Kingdom's response. Wellcome Open Res. 2020; 2020:5.

49.

Geelhand

, Bernard

, Klein

, Van Tiel

, Kissine

. The role of gender in the perception of autism symptom severity and future behavioral development. Mol Autism. 2019; 10:1–8.

50.

Smith

. Does gender influence online survey participation?. A record-linkage analysis of university faculty online survey response behavior. 2008; ED501717:21 [online submission].

51.

Pachner

, Aranyi

. Challenges for children and adolescents with autism and their families during the Covid-19 pandemic. J Glob Aware. 2021; 2(1):4.

52.

Courtenay

, Perera

. COVID-19 and people with intellectual disability: Impacts of a pandemic. Iran J Psychol Med. 2020; 37(3):231–236.

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