“Trapped in a No-Win Situation”: A Qualitative Exploration of Autistic Adults’ Experiences of Loneliness

Abstract

Background: Loneliness is a major public health concern, affecting individuals’ mental and physical health. Autistic adults self-report higher levels of loneliness compared with non-autistic adults, yet their lived experiences of loneliness remain underexplored. We conducted an online survey of autistic adults in the United Kingdom, to examine this issue further.

Methods: Two hundred and three autistic adults completed our online qualitative survey. We asked participants to define loneliness, and to explain how loneliness affects them, how they manage feelings of loneliness, what helps them overcome loneliness, and if (or how) their experiences of loneliness change over time. We used reflexive thematic analysis to analyze the data, and an autistic researcher led the data analysis process.

Results: We identified four primary themes (encompassing eight subthemes): (1) Internal conflict between the desire for, and barriers to, social connection, (2) barriers to connection for autistic adults (such as sensory environments, lack of societal understanding and acceptance of autism, and lack of shared understanding and experiences), (3) importance of meaningful relationships (including connecting with similar others, spending time with pets/animals, and reliance on one person while fearing the loss of that person), and (4) coming to terms with the realities of autistic experience by accepting one’s autistic identity and no longer resisting the experience of loneliness.

Conclusions: Our findings show that autistic adults face dilemmas as they try to balance their desire for social connection with their limited energy for engaging in social experiences. Our results also highlight the societal and environmental factors that contribute to loneliness in autistic people, such as a perceived lack of acceptance of autistic differences. Finally, we identified potential ways to alleviate loneliness among autistic adults (e.g., connecting with similar others and understanding oneself).

Community Brief

Why is this an important issue?

Loneliness can have a negative impact on a person’s mental and physical health. Autistic adults experience high levels of loneliness compared with non-autistic adults. However, little research has examined autistic adults’ firsthand experiences of loneliness.

What was the purpose of this study?

We aimed to better understand the firsthand experiences of loneliness among autistic adults, given the gap in the existing published literature.

What did the researchers do?

We conducted an online survey involving 203 autistic adults from the United Kingdom. We asked them to define loneliness, and to explain how loneliness affects them, how they cope with loneliness, and if (or how) their experience of loneliness changes over time. An autistic researcher led the analysis using a technique called reflexive thematic analysis, which involves looking for patterns within a dataset.

What were the results of the study?

We found four main themes that describe autistic adults’ experiences of loneliness. First, autistic adults reported feeling tensions between their desire for social connections and the difficulties they experienced in achieving such connections. Second, our participants elaborated on the many and varied barriers to achieving social connections, including disabling sensory environments, a lack of societal understanding and acceptance of autism, and challenges in finding and connecting with similar others. Third, autistic adults emphasized the importance of finding and maintaining meaningful relationships, whether through connecting with others who share similar experiences, or spending time with pets or animals. Autistic adults also tended to report relying heavily on one close person, even though this strategy was accompanied by a fear of losing that person. Finally, our participants discussed the need to come to terms with the reality of the autistic experience of loneliness, through a process of accepting one’s autistic identity and by no longer resisting the autistic experience of loneliness.

What do these findings add to what was already known?

This study highlights that a key aspect of loneliness for autistic adults involves a conflict between their desire for social connections and the barriers they face in realizing these connections. This work expands existing knowledge by emphasizing several crucial aspects of the autistic experience. First, autistic adults discussed the frustration involved in wanting social connections while needing to manage their limited energy for engaging in social connections. Second, autistic adults reported that feelings of not fitting in or not being understood/misunderstood, coupled with a lack of societal understanding and acceptance of autism, underpin loneliness in autistic adults. Third, autistic adults reported that connecting with similar others and accepting one’s autistic differences help lessen loneliness.

What are potential weaknesses in the study?

Our sample may not be representative of the broader autistic population. For example, participants largely identified as White and were able to communicate verbally. Conducting an online survey also excluded individuals without internet access, and likely focused on those with online community connections.

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

Our findings suggest that the avoidance of social interactions does not necessarily reflect autistic adults’ reluctance to engage, but rather their need to manage social exhaustion to protect their well-being. As such, these findings challenge widely held assumptions about autistic people. The findings also have important clinical implications, in terms of supporting autistic adults who seek support for loneliness.