Abstract
Background:
Loneliness—a subjective experience of social isolation—is a major public health concern, as loneliness correlates with mental and physical health problems. Autistic adults are more likely to experience loneliness than nonautistic adults. However, we do not know much about how autistic adults cope with loneliness.
Methods:
This study involved focus groups and one-on-one interviews with autistic adults (n = 13), as well as autism professionals (n = 5). Our team used qualitative content analysis to code transcripts for (1) strategies used by autistic adults to cope with loneliness, and (2) perceived helpfulness of coping strategies.
Results:
Autistic adults commonly reported using problem-solving (e.g., seeking social contact) and accommodation (e.g., finding distractions)-coping strategies. Autism professionals frequently identified instrumental aid (e.g., seeking help from a mental health expert) strategies as methods that their autistic clients used and/or might find helpful when coping with loneliness. Although the perceived helpfulness of each strategy varied between individuals, overall, autistic adults found seeking social contact as the most helpful coping strategy.
Conclusion:
The study has the potential to impact the autistic community by identifying instrumental actions as helpful coping mechanisms that autistic people may wish to use to address loneliness, particularly through digital modes of communication with close relationships. Autistic adults did not find all coping strategies to be universally helpful or unhelpful. Prioritizing individual preferences of autistic adults remains critical when designing tailored supports for autistic adults coping with loneliness.
Community Brief
Why is this an important issue?
Loneliness is common and can result in serious mental and physical health issues. Many autistic adults feel lonely. We do not know much about how they cope with loneliness.
What was the purpose of this study?
We aimed to better understand how autistic adults cope with loneliness. We also wanted to find out about how useful they perceived their coping strategies to be.
What did the researchers do?
We spoke with 13 autistic adults and 5 autism-focused professionals about coping with loneliness. During these sessions, we asked participants open-ended questions. Participants were free to answer in as much detail or as broadly as they liked. We used transcripts from these discussions to identify patterns in how participants responded.
What were the results and conclusions of the study?
We found that autistic adults use a variety of coping strategies, some more useful than others. Most autistic adults said they used temporary distraction strategies. Most autism professionals said their autistic clients sought help from therapists or mental health professionals as a useful coping strategy. Both autistic adults and autism professionals said that reaching out to another person, such as a close friend or family member, seemed to be most helpful for coping with loneliness.
What is new or controversial about these findings?
We know from previous studies that loneliness is problematic for autistic adults, but we do not know much about how autistic adults cope with feeling lonely. We are only aware of one study that has explored this topic. The current study builds on this previous one by asking participants directly about which coping strategies they used and how useful they were. We also included the perspectives of autism professionals.
What are potential weaknesses in the study?
This study included a small number of participants, including autistic adults and professionals who worked with autistic adults. Participants were not very diverse in terms of gender or racial/ethnic identity. The study also did not include autistic individuals who require more daily support or use nonspeaking modes of communication.
How will these findings help autistic adults now or in the future?
Our findings can help autistic adults by improving understanding of how some autistic adults cope with loneliness. This knowledge may help autistic adults who feel lonely make decisions about which coping strategies to try.
Loneliness is broadly defined as a negative emotional experience resulting from a perceived discrepancy between desired and actual social relationships. 1 Autistic adults report higher rates of loneliness compared with nonautistic adults.2–4 Autistic individuals may face increased loneliness and social stress due to living in a world that is not made to fit autistic people’s needs. Mutual misunderstandings and communication differences between autistic and nonautistic people, coupled with environments ill-suited for those with sensory reactivity, may increase the likelihood of interpersonal difficulties.5–7 Given that loneliness is associated with anxiety and depression in autistic people,3,7 researchers, clinicians, and members of the autism community must seek to understand adaptive ways that autistic people can cope with feelings of loneliness.
Empirical evidence indicates that adulthood poses several challenges that may increase the likelihood of loneliness among autistic people. For example, novel social challenges in adulthood may include navigating workplace dynamics based on neurotypical expectations 8 and romantic relationships. 9 In addition, services and supports provided throughout school typically end during the transition to adulthood. 10 Autistic adults have also identified several barriers to socializing, including mental health and logistical difficulties. 11 These factors likely contribute to the increase in loneliness observed from adolescence into adulthood in autism. 4 As such, research shows that many autistic adults wish they had more and/or higher quality social relationships.12,13
In the general adult population, common coping strategies used in response to loneliness include distraction, social engagement, problem solving, and paradoxically, social isolation. 14 These coping strategies vary in helpfulness. In a meta-analysis of literature surrounding coping strategy utility, problem-focused strategies (e.g., addressing the root cause of loneliness) were identified as more helpful than emotion-focused strategies (e.g., managing distress caused by loneliness). 15 Among autistic adults, the authors know of only one other study that focuses on how and what autistic adults—who often have different needs, preferences, and experiences of loneliness than nonautistic people—use to cope with loneliness. 4 Similar to findings in nonautistic adults, this study identified that the most common coping strategies were behavioral distraction (e.g., engaging in hobbies; 51.02%) and instrumental action (e.g., seeking out social contacts; 42.86%). 4 This study, however, did not ask participants which coping strategies were helpful, nor include perspectives from relevant informants, such as clinicians and researchers (professionals) working with autistic adults.
Our study aimed to use qualitative analyses to (1) identify strategies used to cope with loneliness from the perspectives of autistic adults and autism professionals, and (2) to characterize the perceived helpfulness of such strategies. Given that stakeholders have identified mental well-being as a top research priority,16,17 the goals of this study are aligned with the interests of the autism community. Results could inform efforts to improve quality of life and health outcomes for autistic adults.
Methods
Participants
We recruited participants via e-mailing lists to autism experts in the United States in spring of 2023. Participants consisted of autistic adults (n = 13) and autism professionals (n = 5). Eligibility criteria for autistic adults included having an autism diagnosis, being at least 18 years old, having a third grade reading level or higher, and being fluent in English. Eligibility criteria for autism professionals included having a minimum of 3 years of experience working with autistic adults in clinical or research contexts, and being fluent in English. All received a $30 digital gift card as compensation. The UCLA Institutional Review Board approved the study protocol.
Autistic adults ranged from age 20 to 55 (M = 30.46; SD = 10.03). 53.8% identified as women, and nearly a fourth (23.1%) identified as Hispanic. Approximately three-fourths of autistic adults (76.92%) had at least a bachelor’s degree. Professionals ranged from age 28 to 44 (M = 34.20; SD = 7.69). All identified as women and held a doctoral degree. On average, professionals had 13.6 years of experience working with autistic adults and spent 68.4% of their time doing clinical work in psychology or psychiatry-related fields. See Table 1 for demographic characteristics.
Demographic Characteristics of Participants
Procedure
The study team offered participants the option to participate in a focus group (a discussion group of up to five participants) or one-on-one interview with a researcher. Nine autistic adults and two autism professionals selected individual interviews; four autistic adults and three professionals preferred to do focus groups (we ran focus groups for autistic adults and professionals separately). The study team held all focus groups and interviews via Zoom. We collected these data as part of a larger loneliness measure development study, so focus groups and interviews consisted of a general discussion of loneliness, a presentation on our proposed conceptual model of loneliness, questions on the construct of loneliness, and questions about coping with loneliness—the latter being the focus of this study. We asked autistic adults the following questions: “What do you usually do to feel better when you feel lonely? How much does it help?” Similarly, we asked professionals the following: “What strategies have you seen autistic clients or patients use to feel better when they feel lonely, how much do these strategies help, and what do you think would be helpful for autistic adults who are feeling lonely?”
The authors recorded and transcribed interviews and groups using the Zoom transcription function, and reviewed transcripts for accuracy. We conducted deductive qualitative content analysis of participants’ responses using the following steps: (1) becoming familiar with the data, (2) applying the coding scheme used in previous studies of autistic and nonautistic people,4,14,18 (3) comparing codes and resolving discrepancies through consensus discussions, and (4) reporting results. 19 We classified all participant responses within one of 12 families of coping, each of which contained one or more coping strategies. Within the behavioral distraction code, we coded types of distraction activities. For instrumental action, we coded the mode(s) of social contact and the type of contact person. We coded perceived helpfulness of coping strategies on a scale from 1 (not helpful at all) to 5 (very helpful). The first and second author double coded the data, all of which fit within the existing coding scheme.
Author positionality
We feel it is critical to acknowledge our positionality as authors, as background and experiences can impact analysis and interpretation of qualitative data. All authors acknowledge their positions as highly educated women in academia. The lead author (D.J.S.) identifies as autistic and Asian American. Two authors (H.K.S. and C.L.) identify as non-Hispanic White, hold doctorate degrees, and work with autistic children and adults in clinical practice.
Results
Characterizing coping strategies
Autistic adults most frequently reported using coping strategies in the accommodation family of coping, primarily in the form of behavioral distraction (69.2%). Autistic adults also reported using strategies from the problem-solving coping family, mostly in the form of instrumental action (42.6%). An autistic adult (gender unlabeled, age 20) highlighted how behavioral distraction helped them take their mind off feeling lonely, saying, I distract myself a lot. I like video games, and they’re…really immersive, so I think just being able to get lost in something is helpful. In terms of instrumental action, one autistic adult (female, age 28) mentioned trying different methods of communication, saying, Usually I try to reach out to people… like, call a friend, text a friend, meet up with someone in person if I can. See Table 2 for frequency of coping strategy identification.
Frequency and Perceived Helpfulness of Coping Strategies Across Both Groups
Based on n = 1.
Dashes indicate missing data (i.e., participants did not specify helpfulness) and/or not applicable data (i.e., no one in that group endorsed that strategy).
When asked about coping strategies their autistic clients reported using and strategies their clients could benefit from, autism professionals most frequently identified support seeking strategies—specifically, instrumental aid (e.g., seeking therapy from a professional; 80%)—followed by problem-solving strategies (60%). One autism professional (female, age 30) highlighted the utility of instrumental aid for autistic clients, saying, I think a lot about the importance of being able to participate in therapy and having somebody that can process those kinds of things with [the client], or…help [the client] come to different solutions or conclusions, or give [the client] ideas for different types of things to practice.
Interestingly, compared with autistic adults, professionals less often identified behavioral distraction (0%) and more frequently identified instrumental aid (60%).
Behavioral distraction: Strategies
Autistic adults identified a variety of behavioral distracters. They most commonly reported using distraction strategies involving electronic activities (e.g., watching TV or movies, playing video games; 55.6%). Autistic adults also reported engaging in nonelectronic leisure activities (e.g., crafting; 30.8%) and vague activities (e.g., “keeping busy”; 23.1%) as other forms of behavioral distraction.
Instrumental action: Sources and modes of contact
Autistic adults identified instrumental action (i.e., initiating social contact) as the second most common coping strategy. Although most did not specify who they would reach out to (30.8%), when participants did specify, they reported reaching out to parents (23.1%), friends (23.1%), and significant others (15.4%). Participants mentioned connection with other autistic or neurodivergent adults to be particularly meaningful. When feeling lonely, one autistic participant (female, age 41) preferred to reach out to their neurodivergent friends, who they termed their “safe people.” The same participant added, “[they’re] people that can relate to me, even though being neurodivergent is very wide spectrum, obviously, and we’re all very different…I think there is this thing that helps people understand a little better when they’re neurodiverse as well.” Similarly, an autism professional (female, age 28) observed that autistic adults in their clinical practice found “connecting with other autistic adults [in] group therapy…[and] just hearing [they are] not alone in [their] experiences [to be]really valuable.”
Of those who reported using instrumental action strategies, participants opted for phone calls (30.8%), followed by texts (23.1%), and in-person contacts (15.4%). The remainder (15.4%) did not specify contact method.
Perceived helpfulness of strategies
Autistic adults found the most helpful coping strategy to be instrumental action, with a median score of 5 (very helpful). They rated behavioral distraction strategies and avoidant strategies (e.g., using drugs) as least helpful, with median scores of 3.5 and 3 (sometimes helpful), respectively. Notably, only one participant reported engaging in avoidant behaviors. Multiple participants referenced the transient impact of different coping strategies. One participant (female, age 39) referenced how behavioral distraction strategies helped to a limited extent, describing, “Crafting helps, but then I inevitably reach a point where I can’t have 400 paintings in the house, so it helps in the moment. I don’t know that it helps long term.” Another autistic adult (female, age 22) contrasted how instrumental action helped more in the long term than distracters, explaining, “I think distraction helps in the moment, but it doesn’t get rid of the more long-term…underlying thoughts or feeling. It makes it feel better in the moment, but it can still creep back. But if I actually talk to someone who’s close to me, that [is] usually longer lasting.”
Participants varied in how helpful they found each coping strategy. One autistic adult described instrumental aid as not helpful, while others indicated the opposite. Similarly, autistic adults’ ratings of behavioral distraction ranged from 2 (not helpful) to 4 (helpful).
Autism professionals rated problem-solving strategies as helpful, with a median of 4.
Discussion
Autistic adults commonly experience feelings of loneliness, 2 yet we do not yet know much about how they cope with such feelings and how helpful they perceive different coping strategies to be. The current study aimed to examine this topic by qualitatively analyzing the use and perceived helpfulness of coping strategies from the perspective of autistic adults and autism professionals. Regarding our first aim, this study saw similar findings to previous studies on autistic adults 4 and nonautistic adults. 14 The two most common coping strategies used by autistic adults in our sample were behavioral distraction and instrumental action, consistent with a prior study examining how autistic adults cope with stress. 20 In contrast, professionals most often identified instrumental aid and problem-solving methods as helpful coping strategies for autistic clients.
Regarding the study’s second aim, autistic adults viewed instrumental action the most helpful coping strategy (more so than behavioral distraction), possibly due to the longer term impact, although helpfulness varied across individuals. In-depth analyses of instrumental action contact methods revealed that many autistic adults in this sample gravitated more toward texts and phone calls as opposed to in-person interactions. Perhaps autistic adults prefer digital communications because of the pacing of digital interactions (e.g., taking time to respond to a text), and/or the less demanding nature of online communication.21,22 In addition, autistic adults commonly reported leveraging connections that are typically considered to be part of someone’s inner social circle, such as close friends or family. This may be due to more acceptance of differences among close contacts, combined with potential fear of being perceived negatively by less familiar connections.13,23 Therefore, we believe supporting autistic adults in seeking social contact with “safe” people through mechanisms that are well-suited to their needs may be key to alleviating loneliness.
Although commonly used, autistic adults described behavioral distraction strategies as less helpful at reducing loneliness than instrumental action. This distinction aligns with the idea of problem-focused (i.e., addressing the core problem) versus emotion-focused (i.e., changing internal experience) coping. 24 As such, distraction techniques may be temporarily helpful, but ideally should be combined with problem-solving strategies focused on long-term impacts.
Many autistic adults reported using self-reliant strategies (e.g., distraction, contacting others), compared with professionals who reported more support-seeking strategies (e.g., clinical support). This difference may speak to availability of resources, such as the lack of suitable mental health services for autistic adults and the presence of systemic barriers. This may have contributed to fewer autistic adults reporting that they used support-seeking strategies.25,26
Implications
We can draw several implications from this study. Given that most of the autistic adult participants perceived instrumental action to be the most helpful coping strategy, autistic adults who feel lonely may find it helpful to foster a social network (e.g., by attending social clubs or peer support groups). Our findings also highlight the variability in helpfulness ratings. It is critical to ensure that preferences of autistic adults are prioritized when designing tailored support. For example, promoting instrumental action would only be relevant for autistic adults who desire more frequent social interactions. Therefore, based on current (albeit limited) evidence, autism professionals should not routinely recommend one-size-fits-all coping strategies for autistic clients seeking help with feeling lonely. Professionals should consider the suitability and helpfulness of loneliness coping strategies before using in clinical practice or designing interventions.
Limitations and directions for future research
The most notable limitation of this study was the relatively small, homogeneous sample. Future studies could benefit from multiple recruitment sources and community outreach to see if the results hold true in larger, more diverse samples. Another limitation was that only autistic adults who speak enrolled in this study. Nonspeaking autistic adults likely use different strategies to cope with loneliness, but their perspectives were not captured in this study. In addition, due to methodological limitations, it was not always clear whether the coping strategies identified by autism professionals were ones that their clients have used or ones they thought their autistic clients would benefit from or a combination of the two. While our anecdotal impression is that participants responded to a combination of both (e.g., they noted their lonely clients seek therapy, and their clients think it is helpful), we cannot definitively make this determination from our data. Future research should seek to tease apart these possibilities. Finally, given that self-stimulatory (stimming) behaviors have been shown to have self-regulatory and soothing effects for intense emotions, 27 certain distraction coping strategies may serve a similar function for autistic adults; this is an interesting concept to explore further.
Conclusion
Our results support the idea that many autistic adults find it helpful to seek social contact and connection with other people to cope with loneliness. These findings counter the myth that autistic adults do not require or desire social connection. Furthermore, given the variability in helpfulness ratings, we encourage individualized approaches when seeking to alleviate loneliness among autistic adults.
Footnotes
Acknowledgments
The authors thank all the participants who contributed to this project. They also thank the members of the Lord Lab for their continued support.
Authorship Confirmation Statement
D.J.S.: Conceptualization (lead), writing—original draft (lead), investigation (equal), visualization (equal), and formal analysis (equal). H.K.S.: Conceptualization (equal), writing—original draft, investigation (lead), visualization (equal), funding acquisition, and formal analysis (equal). C.L.: Writing—reviewing and editing, supervision, and funding acquisition. This article has been given solely to this journal and is not published, in press, or submitted elsewhere.
Author Disclosure Statement
All authors have no conflicts of interest to report relevant to the content of this article.
Funding Information
This work was supported by the Autism Speaks Postdoctoral Fellowship (P.I.: H.K.S.) and the National Institute on Aging [R01AG080599] (PI: C.L.).
