A Blog-Based Study of Autistic Adults' Experiences of Aloneness and Connection and the Interplay with Well-Being: Corpus-Based and Thematic Analyses

Abstract

Background:

Autistic adults appear to be more vulnerable to mental ill health, with loneliness being a variable associated with multiple outcomes of poorer well-being. However, a description of meaningful social connection that is suitable for autistic adults is missing from this research, along with a missing understanding of the conditions that contribute to well-being.

Methods:

In this study, autistic adults' experiences of connectedness and aloneness were systematically searched for within data collected from blogs. This contributed a creative method to hear the viewpoint of autistic adults. Corpus-based and thematic analyses explored the descriptions and contexts of relationships. A total of 16 autistic authors contributed views.

Results:

Social connection was desired and was achieved through self-acceptance and rejecting deficit-based views of being autistic, and selectively choosing important relationships. Meaningful social connection changed over time, being more difficult to attain in childhood, and benefiting from self-learning and effortfully applying neuro-normative skills in social communication. Loneliness was only described alongside other causes of unhappiness and was not associated with being autistic.

Conclusions:

The findings offer some explanation for the high estimates of both loneliness and mental ill health for autistic adults. We consider the implications for autistic individuals, clinicians, educators, and researchers. We are also cautious not to imply that these views reflect all autistic people. The findings suggest that improvements are needed in society to share communication differences and relationship expectations for autistic individuals to be accepted and valued.

Community brief

Why is this an important issue?

Autistic adults appear to be vulnerable to mental ill health, though this is often misunderstood. Being lonely, or dissatisfied with social relationships, has been linked to poorer well-being. However, most research uses questionnaires to assess loneliness, which make assumptions that need updating for autistic adults. For example, having fewer friends does not necessarily mean feeling lonely. We are also missing an understanding of what contexts make autistic people feel alone or connected.

What was the purpose of this study?

The purpose of this study was to hear the experiences of aloneness and social connectedness as described personally by autistic adults. We chose to use data from online blogs, because the topics and descriptions were chosen through personal motivation of the authors and minimize assumptions made by researchers.

What did the researchers do?

We created a dataset of descriptions of social connectedness from the top trending blogs written by autistic authors. We used systematic search methods to do this. We chose 33 search terms that describe social connection and aloneness, as not to presume that autistic people are lonely, such as “friendships” and “belonging.” We analyzed the descriptions first using a computer program to find patterns in language, including the most frequent descriptions. This is called corpus-based analysis. It was chosen to reduce the bias that researchers can introduce when they look for themes in what people talk about. Second, we used a method called thematic analysis to explore the shared meanings in the descriptions, which helped us to understand the contexts of relationships. We collected views from 16 autistic authors.

What were the results of the study?

The results showed that the blog authors desired social connection and had meaningful relationships. This was achieved through self-acceptance and self-compassion. Authors said that they learned about themselves over time. They learnt social skills that they thought were expected by non-autistic peers. They also rejected the view that being autistic was a negative thing. Loneliness was described only when people had other things making them unhappy, such as anxiety or depression, and was not associated with being autistic more generally.

What do these findings add to what was already known?

Unhappiness with social relationships seems to occur in certain circumstances, which change over time. Importantly, these autistic authors said they felt connected when they had a positive identity, were understood by the people important to them, and were able to make choices about how to invest in relationships.

What are potential weaknesses in the study?

We only heard from a small sample of autistic people, likely those with good internet skills who were interested in social media. This might be a group of people who are motivated to connect with other people. Also, we could not follow up on the meanings of what was written because we had no interaction with participants.

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

Within health care, there seems to be a risk of misunderstanding autistic clients when practitioners use questionnaires to assess well-being or loneliness, when the questionnaires are not created for autistic people. We recommend not assuming loneliness, but instead, asking whether feeling lonely occurs under certain circumstances. There is more for clinicians and researchers and society to do to share the responsibility for social communication differences.

Background

Autism is mostly represented as a neurodevelopmental disorder, as defined by major diagnostic frameworks.^1,2 Therefore, to receive a diagnosis and associated support, autistic individuals need to demonstrate lifelong difficulties with social communication and social interaction across multiple contexts, restricted, repetitive patterns of behavior, and, sometimes, sensory processing sensitivities.

However, there is a significant and much-needed paradigmatic shift happening currently, which places greater emphasis on the lived experiences of autistic people,^3,4 and this is urging researchers to improve the collective understanding of experiences that are too-often presumed to be disordered. One priority topic is the well-being of autistic adults and the associated provision of support,⁵ with well-being referring to a personally defined state of feeling well, with manageable stresses, and being able to live to one's own potential.⁶

There are strikingly high estimates of mental ill health co-occurrence with autism diagnosis, with mental health diagnoses such as depression and anxiety being more prevalent for autistic individuals than for the general population.⁷ Over their lifetime, over 70% of autistic individuals are reported to have a mental health disorder.⁸ There are additional concerns alongside high estimates of mental health disorder diagnoses, including anticipated lower self-esteem and higher suicidality for autistic adults.^8–10 Loneliness is suggested to be a contributing factor to reduced well-being, which is in need of further exploration.^11–14

Loneliness is understood to be a negative feeling of unhappiness due to lack of social connections.¹⁵ In some definitions of loneliness, “emotional loneliness,” or felt unhappiness in relationships, is different from having fewer social connections,¹⁶ though this important distinction is often missed, notably when loneliness is measured as a unitary construct. Aloneness, or lack of social connection, and loneliness are, therefore, two distinct concepts, each with their own interactions with well-being.

Applied to the study of autism, the core diagnostic features of social communication difficulties, and the long-standing assumption that being autistic means preferring aloneness,^17,18 means there is an intuitive link between being autistic and being lonely. However, an exploration of meaningful connectedness, or its absence, for autistic people is only just emerging. Social connection is used in this study to mean a subjective experience of belonging and having valued closeness to others.

When questionnaires are used to assess loneliness and the connection with well-being, autistic adults report being moderately lonely.¹² In a recent systematic review, autistic adults were shown to report higher scores on measures of loneliness than a comparison group of non-autistic adults.¹⁹ Loneliness ratings then associate with negative self-esteem, anxiety, depression, self-harm behaviors, and suicidal ideation.^12–14 Autistic individuals report having fewer friendships and reduced quality of life, specifically in relation to social relationships.²⁰

However, the use of such scales misses the context and the meanings of aloneness or connection, such as the interplay between characteristics of being autistic, having fewer social relationships and emotional distress, and the direction of these relationships. These study findings also fail to discern how static or inevitable these conclusions are. For example, friendships for autistic people are suggested to improve over time.²⁰

Use of scales that have not been designed for, or standardized with, autistic participants cause further confusion. For example, scale items such as “no one really knows me well”²¹ may not equate to distress. Stating, “it is difficult for me to make friends” may not reflect unhappiness with existing relationships. There have been similar critiques of standardized scales used to assess mood^22–24 and quality of life²⁵ for autistic participants, due to not knowing which scale items are meaningful, and whether scores are therefore misleading.

A more contextualized understanding of connection and being autistic would consider a definition of meaningful relationships, and broader factors such as the implications of the high efforts often made by autistic adults to achieve normative social relationships, including camouflaging or masking to reflect “acceptable” ways of behaving.²⁶ This is notably true for those with less stereotypical autistic “symptoms,” as seen in the literature, when women or those assigned female at birth receive a diagnosis of autism, or when individuals receive a diagnosis of autism later in adulthood, when there has been personal confusion around autistic identity.^27–29

Qualitative explorations of loneliness, so far, have discussed the interplays between societal expectations, social skill differences, and past negative experiences of feeling different.³⁰ Wider research literature also considers factors of bullying and the availability of support sources on satisfaction with relationships, which provides a more helpful context for understanding loneliness.³¹

Importantly, the predominant understanding of loneliness and its implications has been only minimally informed by autistic viewpoints. Causton-Theoharis et al.¹⁷ explored loneliness through published autobiographical narratives of seven autistic adults. Friendships were desired and were a protective factor against poor mental health, but difficulties maintaining friendships included problems with reaching shared communication and predicting other people's intentions. Ee et al.³⁰ analyzed qualitative survey data from autistic adults, who said there is a difference between being alone and being lonely. They reported widely variable experiences of social relationships. This emerging qualitative research demonstrates the need for improved understanding of the multifaceted interactions between being autistic and feeling satisfied with connectedness.

Research is needed into autistic people's life experiences, their perceptions of their own well-being, and their coping strategies.^4,32,33 This would align with ways of understanding autism as neurodivergence,³⁴ where autistic individuals are recognized as having strengths and widely variable expressions of autistic traits.⁴ Importantly, autistic individuals should set the topic of conversation and the means of contributing research data, through creative methods.^35,36 Difficulties can then be more fully understood within a context, of how a person interacts with the environment that they inhabit.³⁷

This study sought understanding from autistic adults' own perspectives of their experiences of aloneness or social connection, and the interplay with well-being. Although this research sought to better understand “loneliness,” the term social connection is used from this point forward to frame the research question and the search strategy as to avoid deficit-based assumptions.

This study analyzes blog posts written by autistic adults. Studying blogs demonstrates the use of inclusive research practices,^5,36 which give personal voice in a meaningful way to autistic participants. The appeal of blogging can be particularly attractive to some autistic individuals due the reduced demand on using normative social behaviors or responding to direct questions.³⁸ In contrast to other research methods, creative methods such as this reduce researcher influence.³⁵ This is particularly important given the potential to misunderstand and oppress neurodivergent voices,³⁹ which can happen when researchers design questions and research methods using understandings derived from outside of the autistic community.³³ Blogs offer an insider's point of view that is meaningful to the author at the time of writing, driven by personal motivation and using language and concepts of their own choosing.^40–43

Methods

Design

Online blogs written by autistic adults formed the research data, which were systematically searched for personal descriptions of social connection and were compiled to create a specialized corpus. Corpus-based analysis was used to uncover patterns in language use. Thematic analysis was then used to interpret these patterns.

Data collection

Blogs are an electronic journal that allow authors to share personal experiences.^40–43

The blogsite Actually Autistic was used to search for blogs. Blogs were defined as personally written electronic journals that were updated on a regular basis, written in line with the guidelines proposed by Willis.⁴⁴ Blogs were only accessed if they did not require a password and were intended to educate others, thus they were meant for public consumption. Authors were over the age of 18 and had a self-reported diagnosis of Autism Spectrum Disorder. Some authors may have had a formal diagnosis of autism or be self-diagnosed, which was not confirmed. Further, blogs were first-person accounts of one's own life events on any topic (excluding topics such as recipes), written in English, and were posted between July 2021 and October 2021.

The top 35 trending blogs were screened for inclusion. Together with the criteria for including blogs in the dataset, this was an attempt to present web-based data that could be considered credible, by sourcing blogs from a site with clear guidance of its purpose, with author information provided, and with the blogs being deemed up-to-date by user engagement.⁴⁵ Data were located using blog trawling. This refers to gathering data that relate specifically to the topic of study and then cutting and pasting this text into a descriptive offline file.⁴⁶

User traffic was reviewed as a quality check of the relevance of each blog, requiring blogs to be visited more than one thousand times. Fourteen blogs were excluded for not meeting these criteria or for having missing information to allow screening. All content from the 21 included blogs was exported into a general corpus.⁴⁷

Following guidance for systematic searching,⁴⁸ the general corpus was searched using key terms to identify text where social connection was discussed. Search terms were created from synonyms of loneliness and social connection, friendships, and relationships. Terms were added from relevant research papers that discussed similar concepts.^11,49–51 In addition, five randomly selected blogs were read in full to identify search terms reflecting idiosyncratic language use. Truncation was used to increase the return of relevant text. A total of 33 search terms were applied, as shown in Table 1.

Table 1.

Search Terms Used to Create a Specialized Corpus of Personal Descriptions of Social Connection Written by Autistic Blog Authors

Social connection synonym	Searched term
abandoned	abandon
alienated/alienate/alienation	alienat
alone/lone/lonely/loneliness	lone
apart/parted	part
belonging/belong	belong
close/closeness/not close	close
communication/communicate	communicat
companion/company/unaccompanied	compan
connected/connect/disconnected	connect
cut-off	cut-off
disembodied	disembodied
dismissed	dismiss
excluded/not included/exclude/secluded/seclude	clude
fit in	fit in
friendship/friends	friend
interaction/interact	interact
isolated/isolating/isolation	isolat
left	left
myself	self
on my own	own
rejected/reject	reject
relationship	relationship
secluded/seclusion	seclu
segregated/segregate/segregation	segregat
separate/separated	separate
social support	social
solitary	solitar
solitude	soltud
support/social support/supported/	support
uncared for/care	care
unloved	unlove
unwanted	unwant
withdrawn/withdraw/withdrawal	withdraw

A specialized corpus⁴⁷ was formed from the descriptions of social connection, including their fuller written descriptions; these ranged from a single sentence to multiple paragraphs. A member of the research group independently read the specialized corpus to ensure its relevance to the research question and the sensibility of each extract in isolation of the fuller blog. The specialized corpus consisted of accounts from 16 authors, who contributed to a total of 21 blogs. The specialized corpus consisted of 20,251 words, which is considered to be a reasonable corpus size allowing for meaningful results.⁵²

Data analysis

Corpus-based analysis

Corpus-based analysis is a quantitative analysis method used to explore large texts and to discover patterns of language use, such as the frequency of word use.⁴⁷ Qualitative analysis is then used to explain these patterns.

A software package, Wordsmith Tools,⁵³ was used to first create a keyword analysis, comparing the frequency of words used in the specialized corpus with a comparison text, which is a comprehensive sample of written and spoken English, the British National Corpus (BNC).⁵⁴ Keywords were the words highest in frequency in the specialized corpus when accounting for routine language use. They were ordered by “keyness”—which is the statistical probability of the frequency difference. This demonstrates the single words most representative of the dataset in terms of their frequency use.⁵⁵

Collocates are the words that frequently appear next to the keywords, as neighbors, which begin to reveal language patterns. Collocates for each keyword were sorted by Mutual Information (MI) score, which is a statistic used to show the strength of association between the keywords and their neighboring words. The MI score disregards high frequency grammar words or word pairs that routinely occur together in language use (such as “the” preceding keywords) and only shows neighboring words that have strong and non-random relationships, thus they are able to illustrate this study dataset.

Concordance lines for each keyword were then displayed. These are fuller excerpts of blog text that show the keywords in their original context.

Corpus-based analysis provided an objective analysis of the most frequent descriptions of social connection, identified with reduced researcher influence.

Thematic analysis

Shared meanings and experiences of social connection across blog authors were analyzed using mostly inductive, codebook thematic analysis, following six, flexible stages.^56,57 The fuller text around each keyword formed the basis of the analysis, though the full specialized corpus was read repeatedly for familiarization. Text that contained features of data relating to the research question was coded in a systematic way by three researchers who rotated their roles to increase the transparency of the process and reduce individual researcher bias.⁵⁸

Codebook thematic analysis allows the blog data, and familiarization with the data, to inform a coding framework, with an aim of this method being to increase the accuracy, or consistency, of the judgments of multiple researchers. Importantly, however, this method sits within a qualitative philosophy of telling the “story” and creating meaning, with some researcher influence, rather than uncovering the “truth.”⁵⁷ Codes can be described as the smallest unit of thematic analysis, allowing researchers to identify data that could potentially be of relevance to the overall research question.

A codebook documented each code and exemplary quotes. Similar coded concepts were then grouped to generate potential themes of shared meaning across the entire data set, to create a map of the analysis. Themes are considered to be observable response patterns found woven throughout the specialized corpus, which have valuable meaning for understanding descriptions and contexts of social connection. The themes were named to tell the story of the analysis. Finally, extract examples were selected to relate the analysis to the research question and the literature and produce a report.

Ethical considerations

This study was approved by the York St John University ethics committee. All data were available in the public domain. Blog authors were not directly identified in the dataset to offer partial anonymity, though the quoted text would allow blogs to be found.⁵⁹ Guidelines for internet-mediated research informed these decisions.⁶⁰

Considering the positionality of the researchers, one member of the author team identified as neurodivergent; three members identified as neurotypical.

Results

Corpus-based analysis

Keywords from the blog descriptions of social connection are shown in Table 2. Only content words are displayed: high frequency grammar words and those typical of blog data but not relevant to the research question were excluded (for example, “about” and “myself” are not displayed). Fifteen keywords are shown, informed by the strength of keyness thresholds used in previous literature.⁶¹

Table 2.

Top 15 Keywords in the Descriptions of Social Connection in Personal Descriptions Written by Autistic Bloggers, Ordered by “Keyness”

	Keyword	Strong neighboring words	Freq.	Log likelihood (keyness)	Log ratio
(1)	Autistic	Students	81	1161.47	12.40
(2)	Learned	Skills	52	298.54	5.56
(3)	Relationships		31	139.63	4.64
(4)	Allistic		7	118.52	1062.45
(5)	Functioning		16	109.16	6.36
(6)	Social		52	98.42	2.56
(7)	Nonverbal		7	97.80	12.02
(8)	Friends		33	96.84	3.43
(9)	Communication	Skills	23	89.34	4.17
(10)	Behaviors		12	88.05	6.74
(11)	Neurotypical		5	84.66	1061.97
(12)	Boundaries	Respect	16	79.79	5.00
(13)	Trauma		11	79.16	6.63
(14)	Disabled		17	76.17	4.62
(15)	Feel		36	25,375	76.01

The log-ratios show how common the keywords are when compared with the reference text, for example, a ratio of 1 would mean that the word was twice as common in the study data;⁵³ “social” was four times more common in the blog data than in the reference text, which is not surprising given the creation of the dataset, but shows relative frequencies within the dataset. Collocates, or neighboring words, with a strong relationship to each keyword are also shown. A selection of concordance lines shows the keywords in their original context in Table 3.

Table 3.

Concordance Lines Showing Example Descriptions of Social Connection by Autistic Bloggers, Shown in Order of Keyword Strength

Keyword	Example concordance lines
Relationships	I have made the successful relationships in my life work … making the important relationships work in my life … having deep supportive relationships, as well as the willingness to engage … bidirectional benefits of deep relationships with the right people … much of that has meant rejecting generic relationships, or connections with people who do not mean anything to me … supportive, beneficial even reparative relationships.
Social	I do not need the added stress of feeling like I have to go to all the out of work social engagements … the issue is that autism can place such a crippling block on your social energy … late diagnosed autistic women like me float around the fringes of social circles … you were never around, you never texted anybody back, you caused unnecessary social friction.
Friends	I can't say that I don't have friends. I used to think that it was a necessary part of my autism not to have friends … one of my closest friends … while I am bad at making friends and don't have very many, I am not lonely … more than half of my best friends were on the spectrum … two of my best friends have AD(H)D.
Communication	my people skills and my communication skills were much more limited … I told you that I can not see those subtle forms of communication … clue-based communication that allistic people like so much is often very confusing … I need communication to be very blunt … NT expectations and assumptions about verbal and nonverbal communication and social interaction norms played a huge role in the barriers I experienced.

The keyword is shown in bold.

Within the descriptions of social connection, being “autistic” was the most frequent description of identity, which was expected given the dataset; however, the prevalence of self-descriptions of being an “autistic student” illustrates the relevance of education settings for these authors. Other keywords that depicted identity were “allistic,” “neurotypical,” and “disabled.” These were used within comparisons of the self with other people.

The second most frequent keyword was “learned,” which occurred most frequently alongside “skills.” “Communication skills,” “boundaries,” and the “respect[ing]” of boundaries also illustrated the most frequent content of this dataset. When “social” appeared in the dataset, the fuller excerpts shown in Table 3 indicate stressors and strains of social demands. “Trauma” appears in the keyword list, showing its relevance within the descriptions of social experiences.

When discussing “relationships,” choosing relationships and making efforts within relationships, alongside positive descriptions of relationships, are illustrated in the concordance line data. Finally, this analysis of the most frequent descriptions in this dataset highlights the presence of “friends” in the authors' lives.

Themes of shared meanings within the full dataset are presented next.

Thematic analysis

Two themes with accompanying subthemes are shown in Table 4 with example quotes. The themes are barriers to meaningful social connection and ways that autistic authors improved social connection.

Table 4.

Themes and Subthemes in Personal Descriptions of Social Connection by Autistic Bloggers with Example Quotes

Themes	Example quotes
1. Barriers to meaningful social connection
1.1. Different communication	“I really need things stated to me very clearly and directly, and that is definitely a struggle for allistic people. I can't count how many times I have inadvertently overstepped a boundary simply because I didn't know it was there.” (Blog 5) “Dealing with social issues so often feels like fighting a war with my brain. It's autistic tendency versus the fear of losing friendships that I value.” (Blog 3)
1.2. Unclear autistic identity	“Being autistic, saying I am autistic, means everything about me doesn't matter to a non-autistic person, especially when it comes to things that are about being autistic.” (Blog 13) “I've spent my life never quite fitting in with the world around me. Late diagnosed autistic women like me float around the fringes of social circles … I am too weird to be normal but not autistic enough to be autistic?” (Blog 18)
1.3. Learned withdrawal and aloneness	“Don't attempt to be part of a sociable group. It never goes well. At some point something bad will happen because of misunderstandings or personality conflicts and you will be left feeling like you're to blame.” (Blog 1) “But, you know, after you fail and fail and fail again, eventually you lose the motivation to try any more when you know the outcome won't be any different!” (Blog 4)
2. Improving connection
2.1. Self-acceptance	“It took discovering alternative, even ‘odd’, or ‘strange’ ways of interacting with the world, that worked for me, for me to realize what and how I did want to interact. It took throwing out the NT ‘rulebook’ and creating (and co-creating) a new one that worked with both my limitations and my abilities, whatever they were … I'll take my mental health, my peace of mind, and strong sense of self over ‘fitting in’, or ‘being successful’ in the traditional, financially independent, career-oriented sense, any day.” (Blog 4) “… my inability to fit in that normalcy really looked wonderful. I genuinely thought that the key to happiness was achieving some standard of normal. Of course, happiness has come from self-acceptance and self-love.” (Blog 5)
2.2. Opportunities within education	“I'm starting to see that while my university career might not have yielded the typical benefits, or purpose, it has resulted in my gaining so many people skills and communication skills that are useful any time I run into conflict in my personal life, big or small.” (Blog 4)
2.3. Chosen relationships	“I care about maintaining my friendships so much, because I've worked really hard to get to this social point in my life, and I'm doing so much better with it than I once was.” (Blog 3) “I see posts from folks all the time who get zero support from their families or friends, people who disrespect their struggles or request for accommodation, and it's really sad. I am grateful that I've been able to curate this group of people in my life.” (Blog 6)

Theme 1: barriers to meaningful social connection

When discussing social connection, authors discussed reasons why differences from presumed or majority ways of relating had led to distress for them personally, and led to misunderstandings from others. Barriers to “typical” social relationships included different communication, having an unclear autistic identity and learned withdrawal and aloneness.

Subtheme 1.1: different communication

One recurrent reflection was that miscommunication was typical within social interactions, with blog authors describing social information as being subtle, indirect and unclear, and easily missed. Some authors described processing information more slowly and therefore missing their time to contribute within interactions. Another explanation for relationship difficulties was that the autistic authors omitted seemingly expected communications, which to them could seem empty or dishonest, such as hugging, making eye contact, speaking on the telephone, or replying quickly to messages.

This could be interpreted by others as them giving low importance or value to relationships that were actually meaningful to them, which was an error in interpretation on behalf of other people. In addition, expectations to socialize in person and in real-time, in overwhelming environments, at parties or social gatherings, with layers of sounds and light, meant that opportunities for social relationships were reduced.

Within the blog platform, the authors requested that expectations and boundaries within social interactions be voiced clearly, and they said this is not rudeness. Rather, clear expectations would remove a barrier that otherwise could cause repeated and damaging patterns in relationships. Although it is inferred that miscommunications were being described from within interactions with non-autistic people, this information was not available in all accounts. The descriptions of difference may reflect more general personal communication differences.

Blog authors referred to myths that they themselves had assumed to be true, such as friendships being unachievable to autistic people, which they wanted to disprove.

Subtheme 1.2: unclear autistic identity

When reflecting on their experiences of social connection, bloggers expressed how other people held expectations for them to be considered “normal” in society, or else “defective” (Blogs 2, 4, 5, 7, 9, 15, 16, and 21), when failing to “get it right” or behave “properly” (Blogs 4 and 14). They said they operated with reduced social energy or battery. “Fak[ing] it,” “blend[ing] in,” “masking,” and “camouflaging,” (Blogs 1, 5, 6, 14, 18, 20, and 21) were said to be expected behaviors to socialize, which they said they maintained for some amount of time, but which had a relational consequence.

Making high personal effort to meet social expectations had an immense “toll,” “drag,” “force,” and “strain” (Blogs 1, 3, 4, 5, 14, and 21) and contributed to identity confusion. For example, seeming “too ‘weird’ to be included in the friendships … too weird to be normal but not autistic enough to be autistic” (Blog 18). They held negative views about themselves, such as being a “bad friend,” being “flaky,” or “selfish,” (Blogs 1 and 3). Identity confusion was discussed more specifically when authors identified as female and when they were labeled as high-functioning.

Being “disabled” was a conflicting identity, experienced more specifically when job-seeking, when authors described being viewed as both too capable and too disabled simultaneously. Autistic disability was described as invisible and unrecognized, thus contributing to struggles in an environment where other people became positioned as able and ignorant. Repeated rejections from workplaces were described as being traumatic.

A range of descriptions in the blog data included being autistic and celebrated, looking non-autistic, and being negatively viewed as autistic when navigating social relationships, which helped to explain the different transient identities held.

Subtheme 1.3: learned withdrawal and aloneness

For some, not being accommodated within social realms was described as a trauma: “trauma induced by being forced to function in a world I didn't comprehend, and couldn't conform to” (Blog 4). The anticipated requirement to make effort to perform within social situations caused people to be alert to situations that would be too-demanding, and to avoid situations that had previously felt too demanding, which was likened to a way of coping with traumatic experiences.

Emotional experiences were of shame or embarrassment for experiencing the world differently and for performing in social situations in ways that were different from what was expected, including being required to feign interest, to minimize the strain of sensory problems, to pay attention, and to keep still. The bloggers described learned indifference toward other people and avoidance of other people.

There were two explicit mentions of loneliness in the dataset; for one author, loneliness was said to be caused by moving away from home when attending university. For another author, co-occurring anxiety and depression reduced their interactions with other people and friend-making potential. One blogger described the sadness of friendships ending despite caring about friendships, but not sadness at being alone.

End to friendships was said to be a consequence of expectations to accept social invitations, maintain continuous communication, and reply to messages. Another blogger said, “while I am bad at making friends and don't have very many, I am not lonely. I don't feel like I'm lacking” (Blog 6). For some, aloneness was a positive coping strategy, and it offered time to enjoy fewer demands, to have a quieter mind, and to process and make sense of the social interactions of the day.

Theme 2: improving connection

In equal balance to barriers to reaching meaningful social connection, the blog authors discussed their ambitions for social relationships. Relationships were chosen, meaningful, and built on self-acceptance, discussed as follows.

Subtheme 2.1: self-acceptance

Self-acceptance assisted the authors in feeling socially connected to others. They described rejecting how they assumed society wanted them to behave as an unquestioned standard, “throwing out the NT ‘rulebook’” and “not giving in” (Blog 4). Self-understanding translated into working out which social behaviors fit for them as an individual; which they were willing to perform, and which they weren't, with some trial and error from experimenting socially with others.

Some authors said that self-acceptance led them to learn some people skills that they thought were expected by non-autistic peers, but this was informed by choice over when certain skills could be useful. It also led to some of the authors using both their limitations and their abilities to their advantage to develop meaningful relationships. Some bloggers described developing self-compassion, which could derive from making small victories and overcoming incremental challenges. Many bloggers mentioned self-acceptance improving their mental health, which resulted in more positive experiences of relationships.

Subtheme 2.2: opportunities within education

Some bloggers described their student status at college or university as enabling them to develop their identity and find social connection, which was different from the discrimination and exclusion experienced in workplaces. The structure of education assisted them in finding social connections as they were exposed to a wide range of people, learning of people skills, and navigating different types of situations.

Higher education provided a context for learning self-advocacy, through interactions with academic staff, student support and disability services, mental health and well-being professionals, including, for example, agreeing conventions for communication in emails, chats, and meetings. Self-advocacy skills were not formally taught.

Subtheme 2.3: chosen relationships

Throughout the blogs, prominent themes were of valuing relationships, being selective over relationships, and enhancing a sense of belonging through chosen relationships.

Most bloggers spoke indirectly of having best friends, good friends, and close friends or partners. Support from friendships was described as “amazing,” “reparative,” and “deep[ly] supportive” (Blogs 4, 6 and 15). For some, friends were characterized as being those with whom they could be a “good sort of strange” (Blog 4). Some of the authors celebrated the discovery of people who were similar to them or who had similar values to them, which had assisted in relationships being more balanced. For example, some shared similarities with neurodivergent friends, or within an online community. This fostered a feeling of being part of a community. Some spoke of meaningful friendships with a pet. Authors were grateful for the relationships they had, frequently comparing their social relationships with others, such as those who had less support or critical friends and family.

The authors said, with friends, that they say aloud things that are otherwise only implied by non-verbal communication, such as when it is time to leave a gathering. Some authors spoke of learning to communicate with their selected support networks.

Difficulties with social relationships were more apparent in childhood and teenage years, in part explained by the perceived expectations to socialize and felt pressures to either conform to the mainstream standards or to avoid social interactions.

Discussion

We sought to understand personal autistic experiences of social connection, described in naturalistic blog data, to better understand the interactions between connectedness or aloneness, and well-being. This was without an assumption that being autistic is associated with loneliness. The results show that unhappiness with social relationships is apparent under certain circumstances, which change over time.

Sadness within relationships was associated with a confused and, at times, defective identity—when the autistic authors compared themselves unfavorably with neuro-normative expectations. A lack of acceptance of self and lack of acceptance from others mirrored a deficit-based view of being autistic. This has previously been discussed as causing a separation between the individual and society.⁴ Other research has demonstrated the impacts on self-perception when stigma becomes internalized and can lead to feelings of unworthiness.⁶²

Cooper et al.⁶³ demonstrated how self-esteem and well-being can be associated with a strong autistic identity, when individuals associate positive attributes with being autistic. Identity struggle has previously been described for those with less stereotypical autistic features, in the context of late diagnosis of autism or personal confusion of an autistic identity for people assigned female at birth.^27–29 This study links these identity struggles with difficulty reaching satisfaction within social relationships.

Bloggers said that identity strain was more apparent for them in childhood. Previous qualitative research has also discussed the greater challenges faced by younger autistic people, suggested to relate to bullying and discrimination in schools.⁶³ Bullying and non-accepting environments have been associated with earlier school education,³¹ as well as social situations at school being overwhelming and unavoidable, ironically creating a barrier to relationship forming,⁶⁴ as was described here.

Difficulties with social connection in childhood are well documented, for example, autistic children have described feeling less security in their friendships.⁶⁵ This study suggests that there can be an accumulation of rejecting social experiences that carry forward into adulthood. This has been indicated in previous research that collected ratings of loneliness given by autistic adults over time, supplemented by descriptions of past social experiences.³⁰

This narrative reflects our finding that past social experiences were described as traumatic for some autistic adults, contributing to withdrawal and aloneness. Therefore, into adulthood, autistic individuals are likely demonstrating their choices to be selective over how they form relationships, from carrying a burden of being marginalized.³⁹

In our study, unhappiness with social relationships was associated with unquestioned expectations of how to interact with other people to build relationships, which reflected a neurotypical standard, and low shared understanding of what being autistic means. These tensions are well described within the neurodiversity paradigm.⁴ The most prominent terms used in the descriptions of social connection, as revealed by the corpus-based analysis, suggested difference from allistic and neurotypical standards.

The findings illustrate the efforts made by autistic people to learn expected communication skills, to negotiate relationship boundaries, and to negotiate autistic identity. The efforts made were often fuelled by autistic adults making comparisons with being neurotypical or being disabled.

Heasman and Gillespie⁶⁶ described the variety of ways of communicating in social interactions as intersubjectivity, where shared understanding is dependent upon shared conventions. They argue that neurotypical norms can limit the creativity and richness of communication. The blog authors in this study discussed the positive differences they felt when communicating with neurodivergent peers. Further, the problem of double empathy, that is, the potential for misunderstandings to occur when two differing expectations of communication come together, helps to explain why efforts in interpersonal interactions should be shared.⁶⁷

In this study, being negatively different was accompanied by making high personal effort, learning to work out a personal tolerance of performing social behaviors, and investing in fewer, chosen relationships. These findings complement previous autobiographical accounts of social relationships, specifically of autistic adults showing desire for social relationships, but struggling to maintain meaningful relationships, notably when autistic individuals are expected to take responsibility for social communication differences.¹⁷ For example, there are particular difficulties with finding locations in which to socialize, that do not confound overwhelm and fatigue. This has been discussed in previous qualitative research with autistic adults, which explored differing experiences of socializing with their autistic and neurotypical peers.⁶⁸

These findings highlight an important issue related to being autistic and finding meaningful social connection: fewer relationships and sometimes chosen aloneness are not interchangeable with loneliness. A conceptualization of quality of life that has been developed through consultation with the autistic community supports the importance of friendships being evaluated based on satisfaction, and a person being able to be themselves with others, rather than an emphasis on the number of friendships a person has.⁶⁹ Similarly, previous research with a large survey sample of autistic adults separated out the confusion between aloneness and loneliness.³⁰

In this study, loneliness was not a condition of being autistic. Rather, interpersonal well-being was shown to be subjective and contextual.

These findings might help to explain the high prevalence estimates of both loneliness and emotional distress for autistic adults.^12–14 These strong correlates likely reflect a particular time and set of circumstances, of identity struggle, low understanding in social networks, and emotional distress. Thus, this is when ratings of lower mood, other mental ill health descriptors, reduced quality of life, and loneliness seem to compound each other. In our study, dissatisfaction with relationships was associated with ill mental health for one blogger, rather than being autistic. For a second blog author, loneliness was felt after moving away from home. Together with previous research findings, this suggests that loneliness is associated with individual circumstances that cause unhappiness, without there being convincing evidence that being autistic contributes toward this unhappiness. Further, the results of this study and the minimal discussion of loneliness alongside rich accounts of meaningful social connection suggest that loneliness was not a priority topic of discussion for the autistic authors represented.

Skilled compensatory strategies that develop throughout life, while taking a toll on identity and well-being,⁷⁰ demonstrate an evolution of self-acceptance and emergence of strengths into adulthood. Importantly, the blog authors said that they used compensatory strategies with personal choice, rather than out of unquestioned obligation. Autistic bloggers described different transient identities that they held, which navigated the discourse of the neurodiversity paradigm, whereby autistic individuals are different but not flawed.^71,72

Therefore, self-acceptance emerged over time, in balance with the learning of some neuro-normative communication skills. Prior quantitative research has shown that loneliness ratings decrease in older autistic people,²⁰ which may reflect learning about the self and the development of selective skills. Meaningful connection was achieved through investing in important relationships that had bidirectional benefits, and through avoiding scenarios of social friction and conditions of social fatigue.

Mantzalas et al.⁶² showed that masking can increase social inclusion; however, it can also contribute to reduced mental health and burnout. In the current study, when bloggers focused on their strengths and rationed their energy, they said they improved their social connections. One means of enjoying meaningful connection with reduced expectations to appear “normal” was with neurodivergent peers; another was with online communities.

Crompton et al.⁶⁸ explored experiences of socializing with autistic and non-autistic friends and family. Autistic adults described comfort, belonging, and reduced effort “within-neurotype” communication, due to more flexibility in the expectations of how to interact. These findings are reflected in other descriptions of widely varying communication skills used by autistic people.⁶⁶ Similarly, supportive friends and family have been shown to help autistic individuals to hold a higher degree of self-worth.⁷³

The qualities that facilitate social connection, of understanding, shared responsibility for communication differences and recognition of difference as strengths, can hopefully expand out of these selected groups into a more welcoming social environment within society. As one example, the findings from this study demonstrated the benefits of the higher education environment specifically.

Blog authors not only described the ways in which they learnt a range of communication skills within their higher education studies, but also learnt about themselves, their tolerance for making social efforts, and self-advocacy. This warrants further recognition of the potential value of education systems in promoting life-long well-being.

What this means for clinical practice

This study was a means to explore the nature and meaning of aloneness or connection for autistic adults and the interplay with well-being. The main findings are as follows. First, a sense of connection is subjective and contextual. Therefore, advancement in our understanding of loneliness is reliant upon valid loneliness measures. Together, first-person accounts of connectedness give an important context to the choices made about when and with whom to socialize.

We would, therefore, caution against the use of standardized scales alone to understand concepts of loneliness, well-being, and quality of life for autistic clients, when these scales have not been standardized with autistic participants.^24,25 Such scales miss the personal meaning of relationships. Elevated scores also perpetuate a disordered and distress-laden narrative of being autistic.

Ongoing work is required to refine measures of loneliness to be used with autistic people. It might be helpful to separate “distance” in relationships—such as the number of relationships, or the ways and means of being connected—from the assumption of “dissatisfaction” with relationships. Something else for clinicians and researchers to consider in their work with autistic clients is the extent of past learning in relationships, compensatory skill learning (when skills presume a neurotypical standard), and intent for social connection. These will inform a psychological formulation of loneliness and well-being.

Second, it should be assumed that autistic adults likely desire social connection, under personally meaningful conditions. Within clinical practice, it will be important to explore where there are expectations for autistic people to take responsibility for social communication differences, both within therapy⁷⁴ and in narratives throughout their lives. When presenting with co-occurring ill mental health, clinicians should explore whether social connection is being temporarily worsened.

Finally, these findings have important implications for how we learn as a society, when neuro-normative expectations can burden individuals to believe that they are “defective,” which can lead to social withdrawal. Clinicians and researchers can adopt a critical stance on inclusion, such as through their use of language.^39,75

In addition, we recommend further study of topics, including a longitudinal, narrative exploration of self-acceptance. Future studies might consider following young adults over a timeline of transitions through education, workplaces, and adult relationships to better understand positive and negative impacts on social relationships.

What this means for pedagogy

The findings suggest the opportunity for the higher education environment to be a platform for holistic identity development and skill learning for autistic students. Educators need to consider ways to challenge medical assumptions of disability status where these exist, which is the unfortunate required terminology for receiving education and workplace supports (Equality Act, 2010). They can consider a more positive reframing of how autistic people are understood and should challenge assumptions based on outdated deficit-based ideas, even where such terminology is still used by services.

Approaches to this might include using options for mentoring or representation of neurodivergent students within disability and well-being services.⁷⁶ In addition, where topics of mental health and loneliness are taught, diverse students should be reflected in the curriculum.⁷⁶ Educators might facilitate opportunities for autistic students to interact with other autistic students. This would attempt to counter predominant narratives of autism being a disorder or a morbidity, with extremely high co-occurrence with mental ill-health or loneliness.

These findings also give the following clear recommendations to educators of autistic students: to describe explicitly and model what is expected in different interactions, such as within email communication, and in-person meetings. Also, to have multiple methods for being contacted, and multiple ways of hearing about available support. If in doubt, educators can ask the students what would help them, though this should not place responsibility on the student to understand what is possible within the remit of support services.

These actions would inform a culture of inclusion, as has been recommended by neurodivergent students and researchers.⁷⁷ We can also anticipate a developmental trajectory of learning identity—we can understand that students are being expected to advocate for themselves, what they need to benefit their learning and their broader well-being. The higher education context has the potential to foster the conditions for self-acceptance, though this does not happen in isolation of other environments or wider societal contexts.

Strengths and limitations

On reflection, we recommend the use of blog data in providing naturalistic and rich insight into personal experiences, with the approach being non-intrusive to authors who write about experiences of their choosing, with the intention of educating others, with reduced interference or bias from researchers.⁴⁰ The blogs were, themselves, a means for the authors to describe and offer explanations on personally meaningful topics.⁴³

We recommend consideration of such creative methods to researchers.^5,35,36 However, a limitation of accessing retrospective data is that there is no way to follow up with participants if their meaning is unclear or misunderstood, which is particularly challenging when researchers and participants might hold different norms and expectations of each other because of neurodiversity.⁶⁷ We also anticipate that this sample offers limited representation of all autistic people.

Blog authors represent those with particular technical knowledge and interest in online media and motivation to share personal experiences. For the topic of social connection, these data might favor the viewpoints of those who are more socially motivated.³⁸ In being able to blog, the authors may also have a range of other privileges, which were unknown to the researchers. These collective findings show the need to update our understanding of social connectedness with autistic-led research.

Authorship Confirmation Statement

All authors contributed to the study conception and design. Data collection and analyses were performed by S.A., H.P., and B.W. with oversight from S.P. The first draft of the manuscript was written by S.P., and all authors commented on previous versions of the manuscript. All authors approved the final manuscript.

Author Disclosure Statement

The authors have no relevant financial or non-financial interests to disclose.

Funding Information

The authors declare that no funds, grants, or other support were received during the preparation of this manuscript.