Autistic individualsmay experience loneliness differently from neurotypical people due to challenges insocial communication,sensory sensitivities, and unique social preferences.
Despite stereotypes, many autistic people desire social connections but struggle to form andmaintain 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.
Key Points
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.
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
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 thequantitative resultssuggest 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 ascamouflagingand 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.
Strengths
The study had many methodological strengths, including:
Limitations
The study had several limitations:
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:
Variables that may influence the results include:
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
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
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Saul McLeod, PhD
BSc (Hons) Psychology, MRes, PhD, University of Manchester
Saul McLeod, PhD., is a qualified psychology teacher with over 18 years of experience in further and higher education. He has been published in peer-reviewed journals, including the Journal of Clinical Psychology.
Olivia Guy-Evans, MSc
BSc (Hons) Psychology, MSc Psychology of Education
Olivia Guy-Evans is a writer and associate editor for Simply Psychology. She has previously worked in healthcare and educational sectors.
