Autistic individuals may experience loneliness differently from neurotypical people due to challenges in social communication, sensory sensitivities, and unique social preferences.
Despite stereotypes, many autistic people desire social connections but struggle to form and maintain relationships.
This can lead to feelings of isolation and loneliness, which may negatively impact mental health and overall well-being.
Accurately measuring loneliness in autistic adults is crucial for understanding their experiences, developing appropriate interventions, and improving quality of life.
However, standard loneliness measures may not capture the nuanced experiences of autistic individuals, highlighting the need for autism-specific assessment tools.
Grace, K., Remington, A., Davies, J., & Crane, L. (2024). Evaluating measures to assess loneliness in autistic adults. Autism, 28(8), 1959-1971. https://doi.org/10.1177/13623613231217056
Key Points
- The primary methods of assessing loneliness in autistic adults include the UCLA Loneliness Scale Version 3 and the Social and Emotional Loneliness Scale for Adults (SELSA).
- Factors like unclear wording, failure to distinguish between autism characteristics and loneliness, and the static nature of questions significantly affect the accuracy and appropriateness of these measures for autistic adults.
- The research, while enlightening, has certain limitations such as a predominantly White sample and potential self-selection bias.
- Loneliness in autistic adults is a universal concern, impacting mental health and quality of life, making accurate measurement crucial for developing effective interventions.
Rationale
Loneliness is a distressing emotional state associated with negative physical and mental health outcomes (Cacioppo et al., 2015; Wang et al., 2018).
Autistic adults may be particularly at risk of experiencing loneliness (Grace et al., 2022). However, existing loneliness measures have been developed for the general population and may not accurately capture the unique experiences of autistic adults.
Previous research on quality of life (Mason et al., 2022; McConachie et al., 2018, 2020) and suicidality (Cassidy et al., 2020) has shown that autistic adults may interpret questionnaire items differently from the general population.
This study aims to examine if, and how accurately, existing loneliness measures capture the experiences of loneliness in autistic adults and to gather autistic adults’ views on these measures.
This research is crucial for developing more appropriate tools to assess loneliness in the autistic population, which can inform interventions and support strategies.
Method
The study employed a mixed-methods approach, combining quantitative analysis of loneliness scores with qualitative analysis of participants’ feedback on the loneliness measures.
Procedure
Participants completed an online survey comprising demographic information, two widely-used loneliness measures (UCLA Loneliness Scale Version 3 and SELSA), and a direct measure of loneliness.
After completing each measure, participants provided open-text comments on their thoughts about the questionnaire.
Sample
The final sample included 203 autistic adults living in the UK.
Most participants were formally diagnosed (84.7%), female (57.1%), and from a White ethnic background (90.1%).
Ages ranged from 18 to 73 years (mean = 40.7 years).
Measures
- UCLA Loneliness Scale Version 3: A 20-item self-report scale assessing frequency and intensity of loneliness experiences.
- Social and Emotional Loneliness Scale for Adults (SELSA): A 37-item self-report scale assessing intimate and relational aspects of loneliness.
- Direct measure of loneliness: A single-item self-report scale asking “How often do you feel lonely?”
Statistical measures
The researchers conducted correlations between scores on the different loneliness measures and used reflexive thematic analysis to analyze qualitative responses.
Results
Hypothesis 1: Existing loneliness measures (UCLA and SELSA) will correlate with autistic adults’ subjective experiences of loneliness (direct measure).
Result: Confirmed. Both the UCLA scale and SELSA positively correlated with the direct measure of loneliness.
Hypothesis 2: Autistic adults will report difficulties in completing existing loneliness measures.
Result: Confirmed. Qualitative analysis revealed three main themes in participants’ feedback:
Theme 1: Conflating loneliness and autism
Participants felt that some items could lead to incorrect assumptions about loneliness due to underlying assumptions about neurotypical behavior.
For example:
“Where [the UCLA scale] says ‘How often do you feel isolated from others?’, I’ve said ‘Often’, but for me that’s the goal. Managing to avoid other people is success to me, but I think someone reading this survey would possibly read my answer as a negative instead of the positive I see it as” (P46).
Theme 2: Loneliness is not a static trait
Participants explained that loneliness can change over time and depending on context, which the questionnaires did not account for:
“A lot depends on the mood or situation of others at the time when I’d like their support” (P63).
Theme 3: Unclear wording
Many participants noted issues with the format of various questions, including undefined terms and inadequate response options:
“What exactly is the difference between often and rarely? Does never really mean never? Or is it a fuzzy never?” (P60).
Insight and depth
This study provides crucial insights into the challenges of measuring loneliness in autistic adults using existing tools.
While the quantitative results suggest that the UCLA and SELSA scales align with autistic adults’ subjective experiences of loneliness, the qualitative findings reveal significant issues with these measures.
The study highlights the importance of considering autism-specific experiences, such as camouflaging and different social preferences, when assessing loneliness in this population.
The findings extend previous research on adapting measures for autistic adults in other domains, such as quality of life and suicidality.
They suggest that similar adaptations may be necessary for loneliness measures to accurately capture the experiences of autistic individuals.
Further research could focus on developing and validating an autism-specific loneliness measure, taking into account the themes identified in this study.
Additionally, exploring how loneliness experiences may differ across various subgroups within the autistic population (e.g., by age, gender, or co-occurring conditions) could provide valuable insights.
Strengths
The study had many methodological strengths, including:
- Mixed-methods approach, combining quantitative and qualitative data
- Involvement of autistic researchers in the study design and analysis
- Large sample size for a study focusing on autistic adults
- Use of multiple loneliness measures, including a direct measure
- Detailed qualitative analysis providing rich insights into participants’ experiences
Limitations
The study had several limitations:
- The sample was predominantly White and highly educated, limiting generalizability to the broader autistic population.
- Participants were self-selected, potentially biasing the sample towards those more aware of or affected by loneliness.
- The study lacked a non-autistic comparison group, making it difficult to determine if the identified issues are specific to autistic adults or common to the general population.
- The online survey format may have excluded autistic individuals who have difficulty with written communication or lack internet access.
These limitations suggest that the findings may not be fully representative of the experiences of all autistic adults, particularly those from diverse ethnic backgrounds or with different communication needs.
Implications
The results have significant implications for both research and clinical practice:
- Researchers should be cautious when using existing loneliness measures with autistic populations and consider developing autism-specific adaptations.
- Clinicians should be aware that standard loneliness measures may not accurately capture the experiences of their autistic clients and should engage in more in-depth discussions about loneliness.
- The development of more appropriate loneliness measures could lead to better identification of autistic adults at risk of loneliness-related mental health issues.
- Understanding the unique aspects of loneliness in autism could inform more effective interventions and support strategies.
Variables that may influence the results include:
- Individual differences in autism presentation and co-occurring conditions
- Cultural and societal factors affecting perceptions of loneliness
- Age and life stage, which may impact social expectations and experiences
References
Primary reference
Grace, K., Remington, A., Davies, J., & Crane, L. (2024). Evaluating measures to assess loneliness in autistic adults. Autism, 28(8), 1959-1971. https://doi.org/10.1177/13623613231217056
Other references
Cacioppo, S., Grippo, A. J., London, S., Goossens, L., & Cacioppo, J. T. (2015). Loneliness: Clinical import and interventions. Perspectives on psychological science, 10(2), 238-249. https://doi.org/10.1177/1745691615570616
Cassidy, S. A., Bradley, L., Cogger-Ward, H., Shaw, R., Bowen, E., Glod, M., … & Rodgers, J. (2020). Measurement properties of the suicidal behaviour questionnaire-revised in autistic adults. Journal of autism and developmental disorders, 50, 3477-3488. https://doi.org/10.1007/s10803-020-04431-5
Grace, K., Remington, A., Lloyd-Evans, B., Davies, J., & Crane, L. (2022). Loneliness in autistic adults: A systematic review. Autism, 26(8), 2117-2135. https://doi.org/10.1177/13623613221077721
Mason, D., Rodgers, J., Garland, D., Wilson, C., Parr, J. R., & McConachie, H. (2022). Measuring quality of life in autistic adults: The reliability and validity of the Brief Version of the World Health Organization Quality of Life scale. AMRC Open Research, 4, 3.
McConachie, H., Mason, D., Parr, J. R., Garland, D., Wilson, C., & Rodgers, J. (2018). Enhancing the validity of a quality of life measure for autistic people. Journal of autism and developmental disorders, 48, 1596-1611. https://doi.org/10.1007/s10803-017-3402-z
McConachie, H., Wilson, C., Mason, D., Garland, D., Parr, J. R., Rattazzi, A., … & Magiati, I. (2020). What is important in measuring quality of life? Reflections by autistic adults in four countries. Autism in Adulthood, 2(1), 4-12. https://doi.org/10.1089/aut.2019.0008
Wang, J., Mann, F., Lloyd-Evans, B., Ma, R., & Johnson, S. (2018). Associations between loneliness and perceived social support and outcomes of mental health problems: a systematic review. BMC psychiatry, 18, 1-16. https://doi.org/10.1186/s12888-018-1736-5
Keep Learning
Socratic questions for a college class to discuss this paper:
- How might the experience of loneliness differ between autistic and non-autistic individuals, and how could these differences impact the measurement of loneliness?
- What are the potential consequences of using inappropriate loneliness measures for autistic adults in research and clinical settings?
- How could researchers balance the need for standardized measures with the unique experiences of autistic individuals when developing new assessment tools?
- In what ways might cultural factors influence the experience and expression of loneliness in autistic adults, and how could these be accounted for in future research?
- How might the findings of this study inform the development of interventions to address loneliness in autistic adults?
- What ethical considerations should researchers keep in mind when studying sensitive topics like loneliness in potentially vulnerable populations?
- How could the involvement of autistic individuals in the research process, beyond being participants, enhance the quality and relevance of studies on autism?
- In what ways might the concept of neurodiversity challenge traditional approaches to measuring and addressing loneliness in autistic individuals?
