Abstract
Interoceptive awareness refers to one’s ability to detect, discriminate, and regulate internal bodily and mental processes. Interoceptive challenges in ASD remain under researched and poorly understood. In this study, we analyzed texts of adults who self-identify as autistic describing their interoceptive challenges. Many individuals described limited awareness of hunger, satiation, or thirst, which contributed to eating disordered behavior in some instances. Others described limited awareness or difficulty understanding affective arousal, pain or illness, and difficulty differentiating benign body signals from signals that represent medical concerns. Findings from this study call for increased research attention on this topic, and a need for valid and objective measures for assessing interoception in ASD.
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References
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (DSM-5®). Arlington: American Psychiatric Publishing.
Babbie, E., & Benaquisto, L. (2009). Fundaments of social research. San Francisco: Cengage Learning.
Barrett, L. F., & Simmons, W. K. (2015). Interoceptive predictions in the brain. Nature Reviews Neuroscience, 16(7), 419–429.
Belmonte, M. K., & Yurgelun-Todd, D. A. (2003). Functional anatomy of impaired selective attention and compensatory processing in autism. Cognitive Brain Research, 17(3), 651–664.
Bird, G., & Cook, R. (2013). Mixed emotions: The contribution of alexithymia to the emotional symptoms of autism. Translational Psychiatry, 3(7), e285.
Brown, A. C., Chouinard, P. A., & Crewther, S. G. (2017). Vision research literature may not represent the full intellectual range of autism spectrum disorder. Frontiers in Human Neuroscience, 11, 57.
Burack, J. A. (1994). Selective attention deficits in persons with autism: Preliminary evidence of an inefficient attentional lens. Journal of Abnormal Psychology, 103(3), 535.
Clark, D. M., et al. (1997). Misinterpretation of body sensations in panic disorder. Journal of Consulting and Clinical Psychology, 65(2), 203.
Corbin, J., & Strauss, A. (2015). Basics of qualitative research (4th ed.). Thousand Oaks: Sage.
Craig, A. D. (2002). How do you feel? Interoception: The sense of the physiological condition of the body. Nature Reviews Neuroscience, 3(8), 655–666.
Craig, A. D. (2009). How do you feel—Now? The anterior insula and human awareness. Nature Reviews Neuroscience, 10(1), 59.
Critchley, H. D., & Harrison, N. A. (2013). Visceral influences on brain and behavior. Neuron, 77(4), 624–638.
Critchley, H. D., Wiens, S., Rotshtein, P., Öhman, A., & Dolan, R. J. (2004). Neural systems supporting interoceptive awareness. Nature Neuroscience, 7(2), 189.
Croen, L. A., et al. (2015). The health status of adults on the autism spectrum. Autism, 19(7), 814–823.
Dum, R. P., Levinthal, D. J., & Strick, P. L. (2016). Motor, cognitive, and affective areas of the cerebral cortex influence the adrenal medulla. Proceedings of the National Academy of Sciences, 113(35), 9922–9927.
Fiene, L., & Brownlow, C. (2015). Investigating interoception and body awareness in adults with and without autism spectrum disorder. Autism Research, 8(6), 709–716.
Fiene, L., Ireland, M., & Brownlow, C. (2018). The Interoception Sensory Questionnaire (ISQ): A scale to measure interoceptive challenges in adults. Journal of Autism and Developmental Disorders, 48(10), 3354–3366.
Furman, D. J., Waugh, C. E., Bhattacharjee, K., Thompson, R. J., & Gotlib, I. H. (2013). Interoceptive awareness, positive affect, and decision making in major depressive disorder. Journal of Affective Disorders, 151(2), 780–785.
Füstös, J., Gramann, K., Herbert, B. M., & Pollatos, O. (2012). On the embodiment of emotion regulation: Interoceptive awareness facilitates reappraisal. Social Cognitive and Affective Neuroscience, 8(8), 911–917.
Gaigg, S. B., Cornell, A. S., & Bird, G. (2018). The psychophysiological mechanisms of alexithymia in autism spectrum disorder. Autism, 22(2), 227–231.
Garfinkel, S. N., Seth, A. K., Barrett, A. B., Suzuki, K., & Critchley, H. D. (2015). Knowing your own heart: Distinguishing interoceptive accuracy from interoceptive awareness. Biological Psychology, 104, 65–74.
Garfinkel, S. N., Tiley, C., O’Keeffe, S., Harrison, N. A., Seth, A. K., & Critchley, H. D. (2016). Discrepancies between dimensions of interoception in autism: Implications for emotion and anxiety. Biological Psychology, 114, 117–126.
Goldman, A. I., & Sripada, C. S. (2005). Simulationist models of face-based emotion recognition. Cognition, 94(3), 193–213.
Griffin, C., Lombardo, M. V., & Auyeung, B. (2016). Alexithymia in children with and without autism spectrum disorders. Autism Research, 9(7), 773–780.
Hill, E., Berthoz, S., & Frith, U. (2004). Brief report: Cognitive processing of own emotions in individuals with autistic spectrum disorder and in their relatives. Journal of Autism and Developmental Disorders, 34(2), 229–235.
Jänig, W. (1996). Neurobiology of visceral afferent neurons: Neuroanatomy, functions, organ regulations and sensations. Biological Psychology, 42(1–2), 29–51.
Kanbara, K., & Fukunaga, M. (2016). Links among emotional awareness, somatic awareness and autonomic homeostatic processing. BioPsychoSocial Medicine, 10(1), 1–11.
Kever, A., Pollatos, O., Vermeulen, N., & Grynberg, D. (2015). Interoceptive sensitivity facilitates both antecedent-and response-focused emotion regulation strategies. Personality and Individual Differences, 87, 20–23.
Khalsa, S. S., Rudrauf, D., Sandesara, C., Olshansky, B., & Tranel, D. (2009). Bolus isoproterenol infusions provide a reliable method for assessing interoceptive awareness. International Journal of Psychophysiology, 72(1), 34–45.
Khalsa, S. S., et al. (2018). Interoception and mental health: A roadmap. Biological Psychiatry: Cognitive Neuroscience and Neuroimaging, 3(6), 501–513.
Knapp-Kline, K., & Kline, J. P. (2005). Heart rate, heart rate variability, and heartbeat detection with the method of constant stimuli: Slow and steady wins the race. Biological Psychology, 69(3), 387–396.
Lane, R. D., Weihs, K. L., Herring, A., Hishaw, A., & Smith, R. (2015). Affective agnosia: Expansion of the alexithymia construct and a new opportunity to integrate and extend Freud’s legacy. Neuroscience & Biobehavioral Reviews, 55, 594–611.
Mandell, D. S. (2008). Psychiatric hospitalization among children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 38(6), 1059–1065. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/17975720. https://doi.org/10.1007/s10803-007-0481-2.
Mash, L. E., Schauder, K. B., Cochran, C., Park, S., & Cascio, C. J. (2017). Associations between interoceptive cognition and age in autism spectrum disorder and typical development. Journal of Cognitive Education and Psychology, 16(1), 23–37.
Matson, J. L., & Shoemaker, M. (2009). Intellectual disability and its relationship to autism spectrum disorders. Research in Developmental Disabilities, 30(6), 1107–1114.
Mazefsky, C. A., & White, S. W. (2014). Emotion regulation: Concepts & practice in autism spectrum disorder. Child and Adolescent Psychiatric Clinics of North America, 23(1).
Mazefsky, C. A., et al. (2013). The role of emotion regulation in autism spectrum disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 52(7), 679–688. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/23800481. https://doi.org/10.1016/j.jaac.2013.05.006.
Mehling, W. E. (2016). Differentiating attention styles and regulatory aspects of self-reported interoceptive sensibility. Philosophical Transactions of the Royal Society B: Biological Sciences, 371(1708), 20160013.
Mehling, W. E., Gopisetty, V., Daubenmier, J., Price, C. J., Hecht, F. M., & Stewart, A. (2009). Body awareness: Construct and self-report measures. PLoS One, 4(5), e5614.
Mul, C.-l., Stagg, S. D., Herbelin, B., & Aspell, J. E. (2018). The feeling of me feeling for you: Interoception, alexithymia and empathy in autism. Journal of Autism and Developmental Disorders, 48(9), 2953–2967.
Murphy, J., Brewer, R., Catmur, C., & Bird, G. (2017). Interoception and psychopathology: A developmental neuroscience perspective. Developmental Cognitive Neuroscience, 23, 45–56.
Murphy, J., Brewer, R., Hobson, H., Catmur, C., & Bird, G. (2018a). Is alexithymia characterised by impaired interoception? Further evidence, the importance of control variables, and the problems with the Heartbeat Counting Task. Biological Psychology, 136, 189–197.
Murphy, J., Catmur, C., & Bird, G. (2018b). Alexithymia is associated with a multidomain, multidimensional failure of interoception: Evidence from novel tests. Journal of Experimental Psychology: General, 147(3), 398.
Murphy, J., Geary, H., Millgate, E., Catmur, C., & Bird, G. (2018c). Direct and indirect effects of age on interoceptive accuracy and awareness across the adult lifespan. Psychonomic Bulletin & Review, 25(3), 1193–1202.
Murphy, J., Brewer, R., Plans, D., Khalsa, S. S., Catmur, C., & Bird, G. (2020). Testing the independence of self-reported interoceptive accuracy and attention. Quarterly Journal of Experimental Psychology, 73(1), 115–133.
Mussgay, L., Klinkenberg, N., & Rüddel, H. (1999). Heart beat perception in patients with depressive, somatoform, and personality disorders. Journal of Psychophysiology, 13(1), 27.
Nicholson, T. M., Williams, D. M., Grainger, C., Christensen, J. F., Calvo-Merino, B., & Gaigg, S. B. (2018). Interoceptive impairments do not lie at the heart of autism or alexithymia. Journal of Abnormal Psychology, 127(6), 612.
Niedenthal, P. M. (2007). Embodying emotion. Science, 316(5827), 1002–1005.
Noel, J. P., Lytle, M., Cascio, C., & Wallace, M. T. (2018). Disrupted integration of exteroceptive and interoceptive signaling in autism spectrum disorder. Autism Research, 11(1), 194–205.
NVivo (Version 12). (2019). QSR International Pty. Ltd.
O’Brien, W. H., Reid, G. J., & Jones, K. R. (1998). Differences in heartbeat awareness among males with higher and lower levels of systolic blood pressure. International Journal of Psychophysiology, 29(1), 53–63.
Paulus, M. P., & Stein, M. B. (2010). Interoception in anxiety and depression. Brain Structure and Function, 214(5–6), 451–463.
Plaisted, K., Swettenham, J., & Rees, L. (1999). Children with autism show local precedence in a divided attention task and global precedence in a selective attention task. Journal of Child Psychology and Psychiatry, 40(5), 733–742.
Pollatos, O., Traut-Mattausch, E., & Schandry, R. (2009). Differential effects of anxiety and depression on interoceptive accuracy. Depression and Anxiety, 26(2), 167–173.
Quattrocki, E., & Friston, K. (2014). Autism, oxytocin and interoception. Neuroscience & Biobehavioral Reviews, 47, 410–430.
Roberts, N., & Birmingham, E. (2017). Mentoring university students with ASD: A mentee-centered approach. Journal of Autism and Developmental Disorders, 47(4), 1038–1050.
Robertson, A. E., & Simmons, D. R. (2013). The relationship between sensory sensitivity and autistic traits in the general population. Journal of Autism and Developmental Disorders, 43(4), 775–784.
Rouse, C. H., Jones, G. E., & Jones, K. R. (1988). The effect of body composition and gender on cardiac awareness. Psychophysiology, 25(4), 400–407.
Saarela, M. V., Hlushchuk, Y., Williams, A. C. d. C., Schürmann, M., Kalso, E., & Hari, R. (2006). The compassionate brain: Humans detect intensity of pain from another’s face. Cerebral Cortex, 17(1), 230–237.
Schandry, R. (1981). Heart beat perception and emotional experience. Psychophysiology, 18(4), 483–488.
Schauder, K. B., Mash, L. E., Bryant, L. K., & Cascio, C. J. (2015). Interoceptive ability and body awareness in autism spectrum disorder. Journal of Experimental Child Psychology, 131, 193–200.
Scherer, K. R. (2005). What are emotions? And how can they be measured? Social Science Information, 44(4), 695–729.
Seth, A. K., Suzuki, K., & Critchley, H. D. (2012). An interoceptive predictive coding model of conscious presence. Frontiers in Psychology, 2, 395.
Shah, P., Hall, R., Catmur, C., & Bird, G. (2016). Alexithymia, not autism, is associated with impaired interoception. Cortex, 81, 215–220.
Shivkumar, K., et al. (2016). Clinical neurocardiology defining the value of neuroscience-based cardiovascular therapeutics. The Journal of Physiology, 594(14), 3911–3954.
Singer, J. (1999). ‘Why can’t you be normal for once in your life?’ From a ‘problem with no name’ to the emergence of a new category of difference. In M. Corker & S. French (Eds.), Disability discourse (pp. 59–67). Buckingham: Open University Press.
Strigo, I. A., & Craig, A. D. (2016). Interoception, homeostatic emotions and sympathovagal balance. Philosophical Transactions of the Royal Society B: Biological Sciences, 371(1708), 20160010.
Trevisan, D. A., Bowering, M., & Birmingham, E. (2016). Alexithymia, but not autism spectrum disorder, may be related to the production of emotional facial expressions. Molecular Autism 7(1).
Trevisan, D. A., Roberts, N., Lin, C., Birmingham, E., & Hadjikhani, N. (2017). How do adults and teens with self-declared Autism Spectrum Disorder experience eye contact? A qualitative analysis of first-hand accounts. PLOS ONE 12(11), e0188446.
Trevisan, M. R., Bagdasarov, A., Carlos, C., an, S., Hamo, E., Kala, S., McNair, M. L., Parker, T.,Stahl, D., Winkelman, T., Zhou, M., & McPartland, J. C. (2019). A meta-analysis on the relationship between interoceptive awareness and alexithymia: Distinguishing interoceptive accuracy and sensibility. Journal of Abnormal Psychology, 128(8), 765–776.
Whitehead, W. E., Drescher, V. M., Heiman, P., & Blackwell, B. (1977). Relation of heart rate control to heartbeat perception. Biofeedback and Self-Regulation, 2(4), 371–392.
Wiebking, C., Bauer, A., De Greck, M., Duncan, N. W., Tempelmann, C., & Northoff, G. (2010). Abnormal body perception and neural activity in the insula in depression: An fMRI study of the depressed “material me”. The World Journal of Biological Psychiatry, 11(3), 538–549.
Zamariola, G., Vlemincx, E., Corneille, O., & Luminet, O. (2018). Relationship between interoceptive accuracy, interoceptive sensibility, and alexithymia. Personality and Individual Differences, 125, 14–20.
Acknowledgments
This work was supported by the Hilibrand Foundation and the Hartwell Foundation. We thank Alex Plank for his support in using Wrongplanet.net for our analyses.
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This work was supported by the Hilibrand Foundation and the Hartwell Foundation.
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Dominic Trevisan and James McPartland conceptualized and designed the study. Data collection and analysis were performed by Dominic Trevisan and Termara Parker. The first draft of the manuscript was written by Dominic Trevisan and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
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James McPartland consults with BlackThorn Therapeutics, has received research funding from Janssen Research and Development, and receives royalties from Guilford Press, Lambert, and Springer. The other authors have no conflicts of interest to report.
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This study was deemed minimal risk and exempt from oversite by the Yale University Institutional Review Board (Project ID# 2000026330).
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Trevisan, D.A., Parker, T. & McPartland, J.C. First-Hand Accounts of Interoceptive Difficulties in Autistic Adults. J Autism Dev Disord 51, 3483–3491 (2021). https://doi.org/10.1007/s10803-020-04811-x
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DOI: https://doi.org/10.1007/s10803-020-04811-x