“I’m trying to reach out, I’m trying to find my people” – A mixed-methods investigation of loneliness and loneliness distress in autistic adults

Metadata sources used for this reference

OpenAlex Crossref
Learn more about the sources used

Quadt, L., Williams, G., Mulcahy, J., Silva, M., Larsson, D. E. O., Arnold, A., Critchley, H., & Garfinkel, S. N. (2021). “I’m trying to reach out, I’m trying to find my people” – A mixed-methods investigation of loneliness and loneliness distress in autistic adults [Preprint]. Center for Open Science. https://doi.org/10.31234/osf.io/7ckeq

Publication date: 27 Oct 2021 Added to AutiHub: 7 Jul 2026 Type: Preprint Article language: English
OpenAlex source Publisher source (DOI) Full text

This publication is integrated into AutiHub through:

Authors

Publication authors
8
Publication authors identified as autistic
1 / 8 (12.5%)
  1. Lisa Quadt
  2. Gemma Williams *
  3. James Mulcahy
  4. Marta Silva
  1. Dennis E O Larsson
  2. Andy Arnold
  3. Hugo Critchley
  4. Sarah N. Garfinkel

Abstract

Rates of loneliness are substantially higher among autistic individuals compared to the non-autistic population. This observation refutes the persistent stereotype that autistic individuals are not motivated to seek meaningful social relationships. In this two-part, mixed-methods study, we sought to quantify the level of distress associated with loneliness in autistic and non-autistic adults and gain qualitative insight into autistic experiences of loneliness. In Study A, N=209 participants completed questionnaire ratings of their level of loneliness, associated distress, trait anxiety, depression, and sensory sensitivity. In Study B, nine autistic adults took part in ten-minute, unstructured dyadic conversations around the topic of loneliness. We derived a qualitative understanding of autistic individuals’ experience of loneliness, enriched by inductive and deductive analyses. The autistic group scored significantly higher across all measures and both groups displayed strong correlations between loneliness and loneliness distress. The effect of loneliness on anxiety was mediated by increased sensory sensitivity in the autistic group. Our results oppose the ‘social motivation deficit’ hypothesis and we instead frame our findings within the larger context of ‘ethical loneliness’, concluding that to enable meaningful and inclusive social interaction, a societal effort is needed to create spaces that consider the sensory needs of all neurotypes.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:31.

Cited references
61
Total cited references integrated for this publication.
Cited references with an identified autistic author
8 / 61 (13.1%)
Cited author occurrences identified as autistic
8 / 210 (3.8%)
Among occurrences linked to AutiHub author records: 8 / 69 (11.6%). Distinct cited authors identified as autistic: 4 / 186 (2.2%).
Cited author occurrences linked to AutiHub author records
69 / 210 (32.9%)
Distinct linked cited authors: 47 / 186 (25.3%)
Linked cited-author occurrences not identified as autistic
61 / 69 (88.4%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 61 / 210 (29.0%). Distinct linked cited authors not identified as autistic: 43 / 47 (91.5%).
3 cited bibliography entries could not be fully enriched from DOI metadata.
Crossref: not found (3)
  1. Theo van Tilburg (2023). manual De Jong GIerveld Loneliness Scale . Data Archiving and Networked Services (DANS). OSF.
    Type: Article DOI: 10.17605/osf.io/u6gck OpenAlex: https://openalex.org/W1485865686 Crossref: not found
    OpenAlex
  2. Charles D. Spielberger (2010). State‐Trait Anxiety Inventory . The Corsini Encyclopedia of Psychology, 1-1. Wiley.
    Type: Other DOI: 10.1002/9780470479216.corpsy0943 OpenAlex: https://openalex.org/W1569173481
    OpenAlex
  3. Borwin Bandelow , Sophie Michaelis (2015). Epidemiology of anxiety disorders in the 21st century . Dialogues in Clinical Neuroscience, 17(3), 327-335. Informa UK Limited.
    Type: Article DOI: 10.31887/dcns.2015.17.3/bbandelow OpenAlex: https://openalex.org/W1790118405
    OpenAlex
  4. Simon Watts (2014). User Skills for Qualitative Analysis: Perspective, Interpretation and the Delivery of Impact . Qualitative Research in Psychology, 11(1), 1-14. Informa UK Limited.
    Type: Article DOI: 10.1080/14780887.2013.776156 OpenAlex: https://openalex.org/W1864706730
    OpenAlex
  6. Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.
    Type: Article DOI: 10.1191/1478088706qp063oa OpenAlex: https://openalex.org/W1979290264
    OpenAlex
  7. Susan W. White , Roxann Roberson-Nay (2009). Anxiety, Social Deficits, and Loneliness in Youth with Autism Spectrum Disorders . Journal of Autism and Developmental Disorders, 39(7), 1006-1013. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-009-0713-8 OpenAlex: https://openalex.org/W1983410255
    OpenAlex
  8. Julie Causton-Theoharis , Christine Ashby , Meghan Cosier (2009). Islands of Loneliness: Exploring Social Interaction Through the Autobiographies of Individuals With Autism . Intellectual and Developmental Disabilities, 47(2), 84-96. Informa UK Limited.
    Type: Article DOI: 10.1352/1934-9556-47.2.84 OpenAlex: https://openalex.org/W1995863584
    OpenAlex
  9. Tara R. Buck , Joseph Viskochil , Megan Farley , Hilary Coon , William M. McMahon , Jubel Morgan et al. (2014). Psychiatric Comorbidity and Medication Use in Adults with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 44(12), 3063-3071. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-014-2170-2 OpenAlex: https://openalex.org/W1997388980
    OpenAlex
  10. Nirit Bauminger , Connie Kasari (2000). Loneliness and Friendship in High-Functioning Children with Autism . Child Development, 71(2), 447-456. Oxford University Press (OUP).
    Type: Article DOI: 10.1111/1467-8624.00156 OpenAlex: https://openalex.org/W2007157474
    OpenAlex
  11. Enrico DiTommaso , Barry Spinner (1993). The development and initial validation of the Social and Emotional Loneliness Scale for Adults (SELSA) . Personality and Individual Differences, 14(1), 127-134. Elsevier BV.
    Type: Article DOI: 10.1016/0191-8869(93)90182-3 OpenAlex: https://openalex.org/W2015564302
    OpenAlex
  12. Nirit Bauminger , Marjorie Solomon , Anat Aviezer , Kelly Heung , Lilach Gazit , John Brown et al. (2008). Children with Autism and Their Friends: A Multidimensional Study of Friendship in High-Functioning Autism Spectrum Disorder . Journal of Abnormal Child Psychology, 36(2), 135-150. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10802-007-9156-x OpenAlex: https://openalex.org/W2029186288
    OpenAlex
  13. Robert S. Weiss (1974). Loneliness: the experience of emotional and social isolation .
    Type: Book OpenAlex: https://openalex.org/W2041367957
    OpenAlex
  14. Coralie Chevallier , Gregor Kohls , Vanessa Troiani , Edward S. Brodkin , Robert T. Schultz (2012). The social motivation theory of autism . Trends in Cognitive Sciences, 16(4), 231-239. Elsevier BV.
    Type: Article DOI: 10.1016/j.tics.2012.02.007 OpenAlex: https://openalex.org/W2091028497
    OpenAlex
  15. Ashley Robertson , David R. Simmons (2013). The Relationship between Sensory Sensitivity and Autistic Traits in the General Population . Journal of Autism and Developmental Disorders, 43(4), 775-784. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-012-1608-7 OpenAlex: https://openalex.org/W2096113836
    OpenAlex
  16. Jenny De Jong Gierveld , Theo Van Tilburg (2006). A 6-Item Scale for Overall, Emotional, and Social Loneliness . Research on Aging, 28(5), 582-598. SAGE Publications.
    Type: Article DOI: 10.1177/0164027506289723 OpenAlex: https://openalex.org/W2096847786
    OpenAlex
  17. Simon Baron-Cohen , Sally Wheelwright , Richard Skinner , Joanne Martin , Emma Clubley (2001). The Autism-Spectrum Quotient (AQ): Evidence from Asperger Syndrome/High-Functioning Autism, Males and Females, Scientists and Mathematicians . Journal of Autism and Developmental Disorders, 31(1), 5-17. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1023/a:1005653411471 OpenAlex: https://openalex.org/W2100254283
    OpenAlex
  18. Sarah J. Tracy (2010). Qualitative Quality: Eight “Big-Tent” Criteria for Excellent Qualitative Research . Qualitative Inquiry, 16(10), 837-851. SAGE Publications.
    Type: Article DOI: 10.1177/1077800410383121 OpenAlex: https://openalex.org/W2103879113
    OpenAlex
  19. Kurt Kroenke , Robert L. Spitzer , Janet B. W. Williams (2001). The PHQ-9 . Journal of General Internal Medicine, 16(9), 606-613. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1046/j.1525-1497.2001.016009606.x OpenAlex: https://openalex.org/W2132322340
    OpenAlex
  20. Stephanie Cacioppo , Angela J. Grippo , Sarah London , Luc Goossens , John T. Cacioppo (2015). Loneliness . Perspectives on Psychological Science, 10(2), 238-249. SAGE Publications.
    Type: Article DOI: 10.1177/1745691615570616 OpenAlex: https://openalex.org/W2137123520
    OpenAlex
  21. Teresa Tavassoli , Lucy J Miller , Sarah A Schoen , Darci M Nielsen , Simon Baron-Cohen (2014). Sensory over-responsivity in adults with autism spectrum conditions . Autism, 18(4), 428-432. SAGE Publications.
    Type: Article DOI: 10.1177/1362361313477246 OpenAlex: https://openalex.org/W2153654111
    OpenAlex
  22. Daniel W. Russell (1996). UCLA Loneliness Scale (Version 3): Reliability, Validity, and Factor Structure . Journal of Personality Assessment, 66(1), 20-40. Informa UK Limited.
    Type: Article DOI: 10.1207/s15327752jpa6601_2 OpenAlex: https://openalex.org/W2160788840
    OpenAlex
  23. Micah Mazurek (2014). Loneliness, friendship, and well-being in adults with autism spectrum disorders . Autism, 18(3), 223-232. SAGE Publications.
    Type: Article DOI: 10.1177/1362361312474121 OpenAlex: https://openalex.org/W2161515436
    OpenAlex
  24. (2016). Ethical loneliness: the injustice of not being heard . Choice Reviews Online, 53(06), 53-2600-53-2600. American Library Association.
    Type: Article DOI: 10.5860/choice.194466 OpenAlex: https://openalex.org/W2336904348
    OpenAlex
  25. Damian Milton * , Michael Bracher (2013). Autistics speak but are they heard . Medical Sociology, 7(2), 61.
    Type: Article OpenAlex: https://openalex.org/W2337764906
    OpenAlex
  26. Nicole K Valtorta , Mona Kanaan , Simon Gilbody , Barbara Hanratty (2016). Loneliness, social isolation and social relationships: what are we measuring? A novel framework for classifying and comparing tools . BMJ Open, 6(4), e010799. BMJ.
    Type: Article DOI: 10.1136/bmjopen-2015-010799 OpenAlex: https://openalex.org/W2341545815
    OpenAlex
  27. Mikle South , Jacqui Rodgers (2017). Sensory, Emotional and Cognitive Contributions to Anxiety in Autism Spectrum Disorders . Frontiers in Human Neuroscience, 11, 20. Frontiers Media SA.
    Type: Article DOI: 10.3389/fnhum.2017.00020 OpenAlex: https://openalex.org/W2582531027
    OpenAlex
  28. Noah J. Sasson , Daniel J. Faso , Jack Nugent , Sarah Lovell , Daniel P. Kennedy , Ruth B. Grossman (2017). Neurotypical Peers are Less Willing to Interact with Those with Autism based on Thin Slice Judgments . Scientific Reports, 7(1), 40700-40700. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/srep40700 OpenAlex: https://openalex.org/W2585989266
    OpenAlex
  29. Jamie Ward , Claire Hoadley , James E. A. Hughes , Paula Smith , Carrie Allison , Simon Baron-Cohen et al. (2017). Atypical sensory sensitivity as a shared feature between synaesthesia and autism . Scientific Reports, 7(1), 41155. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/srep41155 OpenAlex: https://openalex.org/W2593304235
    OpenAlex
  30. David Jackson‐Perry (2017). Autism and Asperger syndrome in adults . Disability & Society, 32(8), 1280-1282. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2017.1362181 OpenAlex: https://openalex.org/W2742673435
    OpenAlex
  31. Darren Hedley , Mirko Uljarević , Mathilda Wilmot , Amanda L. Richdale , Cheryl Dissanayake (2018). Understanding depression and thoughts of self-harm in autism: A potential mechanism involving loneliness . Research in Autism Spectrum Disorders, 46, 1-7. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2017.11.003 OpenAlex: https://openalex.org/W2768352759
    OpenAlex
  32. Ling-Yi Lin , Pai-Chuan Huang (2019). Quality of life and its related factors for adults with autism spectrum disorder . Disability and Rehabilitation, 41(8), 896-903. Informa UK Limited.
    Type: Article DOI: 10.1080/09638288.2017.1414887 OpenAlex: https://openalex.org/W2772050964
    OpenAlex
  33. Chloe C. Hudson , Layla Hall , Kate L. Harkness (2019). Prevalence of Depressive Disorders in Individuals with Autism Spectrum Disorder: a Meta-Analysis . Journal of Abnormal Child Psychology, 47(1), 165-175. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10802-018-0402-1 OpenAlex: https://openalex.org/W2792899115
    OpenAlex
  34. Darren Hedley , Mirko Uljarević , Kitty‐Rose Foley , Amanda L. Richdale , Julian N Trollor (2018). Risk and protective factors underlying depression and suicidal ideation in Autism Spectrum Disorder . Depression and Anxiety, 35(7), 648-657. Wiley.
    Type: Article DOI: 10.1002/da.22759 OpenAlex: https://openalex.org/W2802741176
    OpenAlex
  35. Vikram K. Jaswal , Nameera Akhtar (2019). Being versus appearing socially uninterested: Challenging assumptions about social motivation in autism . Behavioral and Brain Sciences, 42, Article e82, 1. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s0140525x18001826 OpenAlex: https://openalex.org/W2809138493
    OpenAlex
  36. Ewelina Rydzewska , Laura Anne Hughes-McCormack , Christopher Gillberg , Angela Henderson , Cecilia MacIntyre , Julie Rintoul et al. (2018). Prevalence of long-term health conditions in adults with autism: observational study of a whole country population . BMJ Open, 8(8), e023945. BMJ.
    Type: Article DOI: 10.1136/bmjopen-2018-023945 OpenAlex: https://openalex.org/W2888934327
    OpenAlex
  37. Ya-Cing Syu , Ling-Yi Lin (2018). Sensory Overresponsivity, Loneliness, and Anxiety in Taiwanese Adults with Autism Spectrum Disorder . Occupational Therapy International, 2018, 1-7. Wiley.
    Type: Article DOI: 10.1155/2018/9165978 OpenAlex: https://openalex.org/W2888947683
    OpenAlex
  38. Matthew J Hollocks , Jian Wei Lerh , Iliana Magiati , Richard Meiser-Stedman , Traolach Brugha (2019). Anxiety and depression in adults with autism spectrum disorder: a systematic review and meta-analysis . Psychological Medicine, 49(4), 559-572. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s0033291718002283 OpenAlex: https://openalex.org/W2889987209
    OpenAlex
  39. Carolina Baeza-Velasco , David Cohen , Claude Hamonet , Elodie Vlamynck , Lautaro Diaz , Cora Cravero et al. (2018). Autism, Joint Hypermobility-Related Disorders and Pain . Frontiers in Psychiatry, 9, 656-656. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyt.2018.00656 OpenAlex: https://openalex.org/W2903961522
    OpenAlex
  40. A. Muskett , S. Radtke , Susan W. White , Thomas H. Ollendick (2019). Autism Spectrum Disorder and Specific Phobia: the Role of Sensory Sensitivity: Brief Review . Review Journal of Autism and Developmental Disorders, 6(3), 289-293. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-019-00159-w OpenAlex: https://openalex.org/W2913902177
    OpenAlex
  41. Susan Fletcher-Watson , Francesca Happé (2019). Autism: A New Introduction to Psychological Theory and Current Debate .
    Type: Book OpenAlex: https://openalex.org/W2914599441
    OpenAlex
  42. Gillian A. Matthews , Kay M. Tye (2019). Neural mechanisms of social homeostasis . Annals of the New York Academy of Sciences, 1457(1), 5-25. Wiley.
    Type: Article DOI: 10.1111/nyas.14016 OpenAlex: https://openalex.org/W2921413914
    OpenAlex
  43. W. H. Emons , M. Habibović , S. S. Pedersen (2019). Prevalence of anxiety in patients with an implantable cardioverter defibrillator: measurement equivalence of the HADS-A and the STAI-S . Quality of Life Research, 28(11), 3107-3116. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11136-019-02237-2 OpenAlex: https://openalex.org/W2952081033
    OpenAlex
  44. Emily L. Casanova , Julia L. Sharp , Stephen M. Edelson , Desmond P. Kelly , Estate M. Sokhadze , Manuel F. Casanova (2019). Immune, Autonomic, and Endocrine Dysregulation in Autism and Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorders Versus Unaffected Controls . bioRxiv (Cold Spring Harbor Laboratory). openRxiv.
    Type: Preprint DOI: 10.1101/670661 OpenAlex: https://openalex.org/W2952208560
    OpenAlex
  46. Dawn Ee , Ye In Hwang , Simone Reppermund , Preeyaporn Srasuebkul , Julian N Trollor , Kitty‐Rose Foley et al. (2019). Loneliness in Adults on the Autism Spectrum . Autism in Adulthood, 1(3), 182-193. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2018.0038 OpenAlex: https://openalex.org/W2969135910
    OpenAlex
  47. Karin Asztély , Svenny Kopp , Christopher Gillberg , Margda Waern , Stefan Bergman (2019). Chronic Pain And Health-Related Quality Of Life In Women With Autism And/Or ADHD: A Prospective Longitudinal Study . Journal of Pain Research, Volume 12, 2925-2932. Informa UK Limited.
    Type: Article DOI: 10.2147/jpr.s212422 OpenAlex: https://openalex.org/W2980723690
    OpenAlex
  48. Monica Sunwoo , Jessica O'Connell , Ellie Brown , Ashleigh Lin , Stephen J. Wood , Patrick McGorry et al. (2020). Prevalence and outcomes of young people with concurrent autism spectrum disorder and first episode of psychosis . Schizophrenia Research, 216, 310-315. Elsevier BV.
    Type: Article DOI: 10.1016/j.schres.2019.11.037 OpenAlex: https://openalex.org/W2990603364
    OpenAlex
  49. Gemma Williams * (2020). Perceptual deviants: understanding autistic subjectivities in a (not so) predictable world . University of Brighton Repository (University of Brighton).
    Type: Article OpenAlex: https://openalex.org/W2997184764
    OpenAlex
  50. Nirit Haruvi-Lamdan , Danny Horesh , Shani Zohar , Meital Kraus , Ofer Golan (2020). Autism Spectrum Disorder and Post-Traumatic Stress Disorder: An unexplored co-occurrence of conditions . Autism, 24(4), 884-898. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320912143 OpenAlex: https://openalex.org/W3015082203
    OpenAlex
  52. Lisa Quadt , Giulia Esposito , Hugo Critchley , Sarah N. Garfinkel (2020). Brain-body interactions underlying the association of loneliness with mental and physical health . Neuroscience & Biobehavioral Reviews, 116, 283-300. Elsevier BV.
    Type: Article DOI: 10.1016/j.neubiorev.2020.06.015 OpenAlex: https://openalex.org/W3037565301
    OpenAlex
  55. Lisa Quadt , Sarah N. Garfinkel , James Mulcahy , Dennis E O Larsson , Marta Silva , Anna-Marie Jones et al. (2021). Interoceptive training to target anxiety in autistic adults (ADIE): A single-center, superiority randomized controlled trial . EClinicalMedicine, 39, 101042. Elsevier BV.
    Type: Article DOI: 10.1016/j.eclinm.2021.101042 OpenAlex: https://openalex.org/W3186428487
    OpenAlex
  57. Jenny L. L. Csecs , Valeria Iodice , Charlotte L. Rae , Alice Brooke , Rebecca Simmons , Lisa Quadt et al. (2022). Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain . Frontiers in Psychiatry, 12, 786916-786916. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyt.2021.786916 OpenAlex: https://openalex.org/W4210394959
    OpenAlex
  58. González Moreno, Andrés Santiago (2013). Diagnostic and Statistical Manual of Mental Disorders . American Psychiatric Association.
    Type: Book DOI: 10.1176/appi.books.9780890425596 OpenAlex: https://openalex.org/W4247665917
    OpenAlex
  59. Wolfgang Lenhard , Alexandra Lenhard (2014). Testing the Significance of Correlations . Unpublished.
    Type: Other DOI: 10.13140/rg.2.1.2954.1367 OpenAlex: https://openalex.org/W6941470807 Crossref: not found
    OpenAlex
  60. Lisa Quadt , James E Bartlett (2021). Development and Validation of a Modified Version of the UCLA Loneliness Scale: UCLA Loneliness, Distress, and Contentment Scale (UCLA-LDC) . OSF Preprints (OSF Preprints). OSF Registries.
    Type: Preprint DOI: 10.17605/osf.io/642rn OpenAlex: https://openalex.org/W6944087158 Crossref: not found
    OpenAlex
  61. Stauffer, Jill (n.d.). Ethical loneliness the injustice of not being heard .
    Type: Article OpenAlex: https://openalex.org/W7056642182
    OpenAlex