Current and lifetime somatic symptom burden among transition‐aged autistic young adults

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Williams, Z. J. & Gotham, K. (2022). Current and lifetime somatic symptom burden among transition‐aged autistic young adults. Autism Research, 15(4), 761-770. https://doi.org/10.1002/aur.2671

Publication date: 12 Jan 2022 Added to AutiHub: 7 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
2
Publication authors identified as autistic
1 / 2 (50.0%)
  1. Zachary J. Williams *
  2. Katherine Gotham

Abstract

Somatic symptoms are the most common cause of outpatient medical visits in the general population, yet their presence and severity in individuals on the autism spectrum has rarely been studied. We sought to assess the prevalence, impact, and clinical correlates of 14 commonly reported somatic symptoms in a sample of 290 transition-aged autistic young adults (mean [SD] age: 23.10 [2.38] years, range 18-26; 76.7% diagnosed with autism before age 18) recruited from the Simons Foundation SPARK participant pool. A modified version of the Patient Health Questionnaire-15 was used to assess somatic symptom prevalence/impact, along with measures of depression, anxiety, autistic traits, and quality of life. Somatic symptom burden was much higher in autistic young adults than previously reported in the general population. The most commonly reported current symptoms were fatigue (72.8%), sleep problems (69.0%), and menstrual problems (61.4% of females). Moderate or severe symptom levels were reported by 53.9% of females and 18.75% of males in our cohort, with the odds of females endorsing any given symptom being 2-4 times greater than males. Both individual symptoms and total symptom burden were related to higher levels of depression, anxiety, and autistic traits, along with lower quality of life. Despite little research on this topic previously, somatic symptoms are highly prevalent in autistic young adults, particularly women. Future research is needed to investigate links between somatic symptoms, medical and psychiatric morbidity, and health care utilization in the autistic population. LAY SUMMARY: Somatic symptoms (i.e., physical symptoms such as such as pain, weakness, stomachache, or shortness of breath) are highly prevalent in the general population and account for a large proportion of health care costs. However, few studies have investigated how often these symptoms are reported by autistic adults or their associations with other clinical and demographic variables. Based on self-report data from 290 young autistic adults, we found very high rates of bothersome somatic symptoms in this population, with females endorsing all symptoms at substantially higher rates than males. Somatic symptoms were also associated with worse mental health and quality of life, suggesting that they represent an overlooked contributor to poor health outcomes in the autistic adult population.

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Cited references
40
Total cited references integrated for this publication.
Cited references with an identified autistic author
7 / 40 (17.5%)
Cited author occurrences identified as autistic
7 / 370 (1.9%)
Among occurrences linked to AutiHub author records: 7 / 61 (11.5%). Distinct cited authors identified as autistic: 2 / 340 (0.6%).
Cited author occurrences linked to AutiHub author records
61 / 370 (16.5%)
Distinct linked cited authors: 43 / 340 (12.6%)
Linked cited-author occurrences not identified as autistic
54 / 61 (88.5%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 54 / 370 (14.6%). Distinct linked cited authors not identified as autistic: 41 / 43 (95.3%).
1 cited bibliography entry could not be fully enriched from DOI metadata.
Crossref: not found (1)
  1. Muhammad Yunus (2015). Editorial Review (Thematic Issue: An Update on Central Sensitivity Syndromes and the Issues of Nosology and Psychobiology) . Current Rheumatology Reviews, 11(2), 70-85. Bentham Science Publishers Ltd..
    Type: Article DOI: 10.2174/157339711102150702112236 OpenAlex: https://openalex.org/W843849817
    Crossref OpenAlex OpenCitations
  2. Jennifer Ames , Maria L Massolo , Meghan N Davignon , Yinge Qian , Lisa A. Croen (2021). Healthcare service utilization and cost among transition-age youth with autism spectrum disorder and other special healthcare needs . Autism, 25(3), 705-718. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320931268 OpenAlex: https://openalex.org/W3037111357
    Crossref OpenAlex OpenCitations
  4. Roselind Lieb , Hildegard Pfister , Marianne Mastaler , Hans‐Ulrich Wittchen (2000). Somatoform syndromes and disordersin a representative population sample of adolescents and young adults: prevalence, comorbidity and impairments . Acta Psychiatrica Scandinavica, 101(3), 194-208. Wiley.
    Type: Article DOI: 10.1034/j.1600-0447.2000.101003194.x OpenAlex: https://openalex.org/W1982843138
    Crossref OpenAlex OpenCitations
  5. Geir Bjørklund , Lyudmila Pivina , Maryam Dadar , Nagwa A. Meguid , Yuliya Semenova , Mona Anwar et al. (2020). Gastrointestinal alterations in autism spectrum disorder: What do we know? Neuroscience & Biobehavioral Reviews, 118, 111-120. Elsevier BV.
    Type: Article DOI: 10.1016/j.neubiorev.2020.06.033 OpenAlex: https://openalex.org/W3039216035
    Crossref OpenAlex OpenCitations
  6. Ulf Olsson , Fritz Drasgow , Neil J. Dorans (1982). The Polyserial Correlation Coefficient . Psychometrika, 47(3), 337-347. Cambridge University Press (CUP).
    Type: Article DOI: 10.1007/bf02294164 OpenAlex: https://openalex.org/W2086604918
    Crossref OpenAlex OpenCitations
  7. Micah Mazurek , Roma A. Vasa , Luther G. Kalb , Stephen M. Kanne , Daniel Rosenberg , Amy Keefer et al. (2013). Anxiety, Sensory Over-Responsivity, and Gastrointestinal Problems in Children with Autism Spectrum Disorders . Journal of Abnormal Child Psychology, 41(1), 165-176. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10802-012-9668-x OpenAlex: https://openalex.org/W2035020487
    Crossref OpenAlex OpenCitations
  8. JOHN V. CAMPO , LINDA JANSEN-McWILLIAMS , DIANE M. COMER , KELLY J. KELLEHER (1999). Somatization in Pediatric Primary Care: Association With Psychopathology, Functional Impairment, and Use of Services . Journal of the American Academy of Child & Adolescent Psychiatry, 38(9), 1093-1101. Elsevier BV.
    Type: Article DOI: 10.1097/00004583-199909000-00012 OpenAlex: https://openalex.org/W2086594224
    Crossref OpenAlex OpenCitations
  9. Xiao-Lei Yang , Shuang Liang , Ming-Yang Zou , Cai-Hong Sun , Pan-Pan Han , Xi-Tao Jiang et al. (2018). Are gastrointestinal and sleep problems associated with behavioral symptoms of autism spectrum disorder? Psychiatry Research, 259, 229-235. Elsevier BV.
    Type: Article DOI: 10.1016/j.psychres.2017.10.040 OpenAlex: https://openalex.org/W2765168094
    Crossref OpenAlex OpenCitations
  10. Kurt Kroenke , Robert L. Spitzer , Janet B.W. Williams , Bernd Löwe (2010). The Patient Health Questionnaire Somatic, Anxiety, and Depressive Symptom Scales: a systematic review . General Hospital Psychiatry, 32(4), 345-359. Elsevier BV.
    Type: Article DOI: 10.1016/j.genhosppsych.2010.03.006 OpenAlex: https://openalex.org/W2057468507
    Crossref OpenAlex OpenCitations
  11. Constantino J. N. (2012). Social Responsiveness Scale Second Edition (SRS-2): Manual . Social Responsiveness Scale–Second edition (SRS-2): Manual.
    Type: Other
    Crossref
  12. Andreas Hinz , Jochen Ernst , Heide Glaesmer , Elmar Brähler , Franziska G. Rauscher , Katja Petrowski et al. (2017). Frequency of somatic symptoms in the general population: Normative values for the Patient Health Questionnaire-15 (PHQ-15) . Journal of Psychosomatic Research, 96, 27-31. Elsevier BV.
    Type: Article DOI: 10.1016/j.jpsychores.2016.12.017 OpenAlex: https://openalex.org/W2593449903
    Crossref OpenAlex OpenCitations
  13. Micah Mazurek , Amy Keefer , Amy Shui , Roma A. Vasa (2014). One-year course and predictors of abdominal pain in children with autism spectrum disorders: The role of anxiety and sensory over-responsivity . Research in Autism Spectrum Disorders, 8(11), 1508-1515. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2014.07.018 OpenAlex: https://openalex.org/W2081991480
    Crossref OpenAlex OpenCitations
  14. Lisa A. Croen , Ousseny Zerbo , Yinge Qian , Maria L Massolo , Steve Rich , Stephen Sidney et al. (2015). The health status of adults on the autism spectrum . Autism, 19(7), 814-823. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315577517 OpenAlex: https://openalex.org/W2108322879
    Crossref OpenAlex OpenCitations
  15. Meghan N. Davignon , Yinge Qian , Maria L Massolo , Lisa A. Croen (2018). Psychiatric and Medical Conditions in Transition-Aged Individuals With ASD . Pediatrics, 141(Supplement_4), S335-S345. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2016-4300k OpenAlex: https://openalex.org/W2795851903
    Crossref OpenAlex OpenCitations
  16. Amparo Díaz-Román , Junhua Zhang , Richard Delorme , Anita Beggiato , Samuele Cortese (2018). Sleep in youth with autism spectrum disorders: systematic review and meta-analysis of subjective and objective studies . Evidence Based Mental Health, 21(4), 146-154. BMJ.
    Type: Article DOI: 10.1136/ebmental-2018-300037 OpenAlex: https://openalex.org/W2898157129
    Crossref OpenAlex OpenCitations
  17. Pamela Feliciano , Amy M. Daniels , LeeAnne Green Snyder , Amy Beaumont , Alexies Camba , Amy Esler et al. (2018). SPARK: A US Cohort of 50,000 Families to Accelerate Autism Research . Neuron, 97(3), 488-493. Elsevier BV.
    Type: Article DOI: 10.1016/j.neuron.2018.01.015 OpenAlex: https://openalex.org/W2785900161
    Crossref OpenAlex OpenCitations
  18. Rüya-Daniela Kocalevent , Andreas Hinz , Elmar Brähler (2013). Standardization of a screening instrument (PHQ-15) for somatization syndromes in the general population . BMC Psychiatry, 13(1), 91-91. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/1471-244x-13-91 OpenAlex: https://openalex.org/W2111864290
    Crossref OpenAlex OpenCitations
  20. Susan D. Mayes , Peter J. Castagna , Daniel A. Waschbusch (2020). Sex Differences in Externalizing and Internalizing Symptoms in ADHD, Autism, and General Population Samples . Journal of Psychopathology and Behavioral Assessment, 42(3), 519-526. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10862-020-09798-4 OpenAlex: https://openalex.org/W3011207103
    Crossref OpenAlex OpenCitations
  21. Kurt Kroenke (2003). Patients presenting with somatic complaints: epidemiology, psychiatric co‐morbidity and management . International Journal of Methods in Psychiatric Research, 12(1), 34-43. Wiley.
    Type: Article DOI: 10.1002/mpr.140 OpenAlex: https://openalex.org/W2152620642
    Crossref OpenAlex OpenCitations
  22. Bethany Morgan , Fatuma Nageye , Gabriele Masi , Samuele Cortese (2020). Sleep in adults with Autism Spectrum Disorder: a systematic review and meta-analysis of subjective and objective studies . Sleep Medicine, 65, 113-120. Elsevier BV.
    Type: Article DOI: 10.1016/j.sleep.2019.07.019 OpenAlex: https://openalex.org/W2966550280
    Crossref OpenAlex OpenCitations
  23. Arlene Mannion , Geraldine Leader (2016). An investigation of comorbid psychological disorders, sleep problems, gastrointestinal symptoms and epilepsy in children and adolescents with autism spectrum disorder: A two year follow-up . Research in Autism Spectrum Disorders, 22, 20-33. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2015.11.002 OpenAlex: https://openalex.org/W2181199087
    Crossref OpenAlex OpenCitations
  24. Calliope Holingue , Carol Newill , Li‐Ching Lee , Pankaj J. Pasricha , M. Daniele Fallin (2018). Gastrointestinal symptoms in autism spectrum disorder: A review of the literature on ascertainment and prevalence . Autism Research, 11(1), 24-36. Wiley.
    Type: Article DOI: 10.1002/aur.1854 OpenAlex: https://openalex.org/W2752524456
    Crossref OpenAlex OpenCitations
  25. Geraldine Leader , Amy Barrett , Chiara Ferrari , Mia Casburn , Leanne Maher , Katie Naughton et al. (2021). Quality of life, gastrointestinal symptoms, sleep problems, social support, and social functioning in adults with autism spectrum disorder . Research in Developmental Disabilities, 112, 103915. Elsevier BV.
    Type: Article DOI: 10.1016/j.ridd.2021.103915 OpenAlex: https://openalex.org/W3135574932
    Crossref OpenAlex OpenCitations
  26. Anne G. Lever , Hilde M. Geurts (2016). Psychiatric Co-occurring Symptoms and Disorders in Young, Middle-Aged, and Older Adults with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 46(6), 1916-1930. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-016-2722-8 OpenAlex: https://openalex.org/W2272786625
    Crossref OpenAlex OpenCitations
  27. Robert E. Kass , Adrian E. Raftery (1995). Bayes Factors . Journal of the American Statistical Association, 90(430), 773-795. Informa UK Limited.
    Type: Article DOI: 10.1080/01621459.1995.10476572 OpenAlex: https://openalex.org/W4211177544
    Crossref OpenAlex OpenCitations
  28. R Core Team (2026). R: A Language and Environment for Statistical Computing . R Foundation for Statistical Computing.
    Type: Article DOI: 10.32614/r.manuals OpenAlex: https://openalex.org/W2582743722
    OpenAlex
  29. Caroline Kassee , Stephanie Babinski , Ami Tint , Yona Lunsky , Hilary K. Brown , Stephanie H. Ameis et al. (2020). Physical health of autistic girls and women: a scoping review . Molecular Autism, 11(1), 84-84. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-020-00380-z OpenAlex: https://openalex.org/W3094995723
    Crossref OpenAlex OpenCitations
  31. Rachel Loomes , Laura Hull , Will Mandy (2017). What Is the Male-to-Female Ratio in Autism Spectrum Disorder? A Systematic Review and Meta-Analysis . Journal of the American Academy of Child & Adolescent Psychiatry, 56(6), 466-474. Elsevier BV.
    Type: Article DOI: 10.1016/j.jaac.2017.03.013 OpenAlex: https://openalex.org/W2604697269
    Crossref OpenAlex OpenCitations
  32. Micah Mazurek , Kristen Dovgan , Ann M. Neumeyer , Beth A. Malow (2019). Course and Predictors of Sleep and Co-occurring Problems in Children with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 49(5), 2101-2115. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-03894-5 OpenAlex: https://openalex.org/W2914987245
    Crossref OpenAlex OpenCitations
  33. Paul Shattuck , Tamara Garfield , Anne M. Roux , Jessica E. Rast , Kristy A. Anderson , Elizabeth McGhee Hassrick et al. (2020). Services for Adults With Autism Spectrum Disorder: a Systems Perspective . Current Psychiatry Reports, 22(3), 13-13. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11920-020-1136-7 OpenAlex: https://openalex.org/W3004564360
    Crossref OpenAlex OpenCitations
  34. Geraldine Leader , Emma Dooley , Sally Whelan , Shawn P. Gilroy , June L. Chen , Autumn Farren Barton et al. (2022). Attention-Deficit/Hyperactivity Disorder Symptoms, Gastrointestinal Symptoms, Sleep Problems, Challenging Behavior, Adaptive Behavior, and Quality of Life in Children and Adolescents with Autism Spectrum Disorder . Developmental Neurorehabilitation, 25(4), 217-228. Informa UK Limited.
    Type: Article DOI: 10.1080/17518423.2021.1964005 OpenAlex: https://openalex.org/W3188774980
    Crossref OpenAlex OpenCitations
  35. Moneek Madra , Roey Ringel , Kara Gross Margolis (2020). Gastrointestinal Issues and Autism Spectrum Disorder . Child and Adolescent Psychiatric Clinics of North America, 29(3), 501-513. Elsevier BV.
    Type: Article DOI: 10.1016/j.chc.2020.02.005 OpenAlex: https://openalex.org/W3014608586
    Crossref OpenAlex OpenCitations
  38. R Core Team. (2021). R: A Language and Environment for Statistical Computing(4. 1. 0) [Computer software]. R Foundation for Statistical Computing https://www . R-project.org/
    Type: Other
    Crossref
  39. Zachary J. Williams * , Carissa J. Cascio , Tiffany G. Woynaroski (2021). Measuring Subjective Quality of Life in Autistic Adults with the PROMIS Global-10 . ResearchGate. Unpublished.
    Type: Article DOI: 10.13140/rg.2.2.19753.72804 OpenAlex: https://openalex.org/W6884983742 Crossref: not found
    Crossref OpenAlex