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“You Can't Possibly Have ADHD”: Exploring Validation and Tensions around Diagnosis within Unbounded ADHD Social Media Communities

Authors:

Kathryn E. RinglandAuthors Info & Claims

ASSETS '23: Proceedings of the 25th International ACM SIGACCESS Conference on Computers and Accessibility

Article No.: 29, Pages 1 - 17

https://doi.org/10.1145/3597638.3608400

Published: 22 October 2023 Publication History

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Abstract

Despite a common misconception that Attention-Deficit Hyperactivity Disorder (ADHD) is a childhood disorder, symptoms often persist into adulthood and many adults remain undiagnosed for a variety of reasons. Increased adoption of social media such as Instagram, TikTok, and Twitter has led to increased representation of neurodivergent community members with ADHD. As a result of the COVID-19 pandemic and increased social media use, many have come to recognize themselves in content made by social media members with ADHD and thus sought diagnoses of their own. Social media provides a valuable source of information, first-hand experiences, support, and validation through shared experiences. These networks, which we call “unbounded Online Health Communities”, have encouraged patients to advocate for themselves using information and support they have received from online ADHD communities. To understand these communities better and privilege the lived experiences of people with ADHD, we conduct a digital ethnography of three social media platforms to explore community content, specifically around acceptance, diagnoses, and tensions with the medical community. We discuss these informal online health communities as a source of knowledge, different, but no less important than that of traditional Online Health Communities and further the view of these communities as a valuable resource of shared expertise.

References

[1]

[n. d.]. Individuals with Disabilities Education Act (IDEA). https://sites.ed.gov/idea/

[2]

ADA. 2021. Introduction to the Americans with Disabilities Act. https://beta.ada.gov/topics/intro-to-ada/

[3]

Lenard A Adler and Hong C Chua. 2002. Management of ADHD in adults. Journal of Clinical Psychiatry 63 (2002), 29–35.

[4]

Legal Aid at Work. [n. d.]. Disabilities in Higher Education. https://legalaidatwork.org/factsheet/disabilities-in-higher-education/

[5]

Deanna J Attai, Michael S Cowher, Mohammed Al-Hamadani, Jody M Schoger, Alicia C Staley, and Jeffrey Landercasper. 2015. Twitter social media is an effective tool for breast cancer patient education and support: patient-reported outcomes by survey. Journal of medical Internet research 17, 7 (2015), e4721.

[6]

John Z Ayanian, Joel S Weissman, Scott Chasan-Taber, and Arnold M Epstein. 1999. Quality of care by race and gender for congestive heart failure and pneumonia. Medical care (1999), 1260–1269.

[7]

Alastair Baker. 2001. Crossing the quality chasm: a new health system for the 21st century. Vol. 323. British Medical Journal Publishing Group.

[8]

Sairam Balani and Munmun De Choudhury. 2015. Detecting and characterizing mental health related self-disclosure in social media. In Proceedings of the 33rd Annual ACM Conference Extended Abstracts on Human Factors in Computing Systems. 1373–1378.

Digital Library

[9]

James Baldwin, Teresa Brunsdon, Jotham Gaudoin, and Laurence Hirsch. 2018. Towards a social media research methodology: Defining approaches and ethical concerns. International journal on advances in life sciences 10 (2018).

[10]

Ashleigh Barraclough. 2022. ADHD diagnosis wait times are being blown out by the pandemic, experts say. ABC News (May 2022). https://www.abc.net.au/news/2022-05-24/adhd-diagnosis-wait-times-blown-out-pandemic/101018152

[11]

Corey H Basch, Bhavya Yalamanchili, and Joseph Fera. 2022. # Climate change on TikTok: a content analysis of videos. Journal of community health 47, 1 (2022), 163–167.

[12]

Ellen L Bassuk, Justine Hanson, R Neil Greene, Molly Richard, and Alexandre Laudet. 2016. Peer-delivered recovery support services for addictions in the United States: A systematic review. Journal of substance abuse treatment 63 (2016), 1–9.

[13]

Clare Bellhouse, Meredith Temple-Smith, Shaun Watson, and Jade Bilardi. 2019. “The loss was traumatic… some healthcare providers added to that”: Women’s experiences of miscarriage. Women and Birth 32, 2 (2019), 137–146.

[14]

Cynthia L. Bennett and Daniela K. Rosner. 2019. The Promise of Empathy: Design, Disability, and Knowing the "Other". In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, 1–13. https://doi.org/10.1145/3290605.3300528

Digital Library

[15]

Alex Bish. 2023. Five-year wait for adult ADHD assessment in the South East. BBC News (Mar 2023). https://www.bbc.com/news/uk-england-kent-65020111

[16]

Tom Boellstorff, Bonnie Nardi, Celia Pearce, and Tina L Taylor. 2012. Ethnography and virtual worlds. In Ethnography and Virtual Worlds. Princeton University Press.

[17]

Rebecca Bondü and Günter Esser. 2015. Justice and rejection sensitivity in children and adolescents with ADHD symptoms. European child & adolescent psychiatry 24, 2 (2015), 185–198.

[18]

Stella Bullo. 2018. Exploring disempowerment in women’s accounts of endometriosis experiences. Discourse & Communication 12, 6 (2018), 569–586.

[19]

CDC. 2021. What is ADHD?https://www.cdc.gov/ncbddd/adhd/facts.html

[20]

CHADD. [n. d.]. The ADHD Diagnostic Process. https://chadd.org/for-professionals/the-adhd-diagnostic-process/

[21]

Judi Chamberlin. 1978. On our own: Patient-controlled alternatives to the mental health system.McGraw-Hill.

[22]

Stevie Chancellor, Michael L Birnbaum, Eric D Caine, Vincent MB Silenzio, and Munmun De Choudhury. 2019. A taxonomy of ethical tensions in inferring mental health states from social media. In Proceedings of the conference on fairness, accountability, and transparency. 79–88.

Digital Library

[23]

Stevie Chancellor, Steven A. Sumner, Corinne David-Ferdon, Tahirah Ahmad, and Munmun De Choudhury. 2021. Suicide Risk and Protective Factors in Online Support Forum Posts: Annotation Scheme Development and Validation Study. JMIR Mental Health 8, 11 (Nov. 2021), e24471. https://doi.org/10.2196/24471 Company: JMIR Mental Health Distributor: JMIR Mental Health Institution: JMIR Mental Health Label: JMIR Mental Health Publisher: JMIR Publications Inc., Toronto, Canada.

[24]

Stevie Chancellor, Steven A Sumner, Corinne David-Ferdon, Tahirah Ahmad, Munmun De Choudhury, 2021. Suicide risk and protective factors in online support forum posts: annotation scheme development and validation study. JMIR mental health 8, 11 (2021), e24471.

[25]

Zheng Chang, Brian M D’Onofrio, Patrick D Quinn, Paul Lichtenstein, and Henrik Larsson. 2016. Medication for attention-deficit/hyperactivity disorder and risk for depression: a nationwide longitudinal cohort study. Biological psychiatry 80, 12 (2016), 916–922.

[26]

Kathy Charmaz. 2006. Constructing grounded theory: A practical guide through qualitative analysis. sage.

[27]

Munmun De Choudhury and Sushovan De. 2014. Mental Health Discourse on reddit: Self-Disclosure, Social Support, and Anonymity. In ICWSM.

[28]

Winston Chung, Sheng-Fang Jiang, Diana Paksarian, Aki Nikolaidis, F Xavier Castellanos, Kathleen R Merikangas, and Michael P Milham. 2019. Trends in the prevalence and incidence of attention-deficit/hyperactivity disorder among adults and children of different racial and ethnic groups. JAMA network open 2, 11 (2019), e1914344–e1914344.

[29]

Nicole Clark. 2021. No One’s Ever Talked to Me About This Before. New York Times (May 2021). https://www.nytimes.com/2021/05/24/style/adhd-online-creators-diagnosis.html

[30]

T Clark, C Feehan, C Tinline, and P Vostanis. 1999. Autistic symptoms in children with attention deficit-hyperactivity disorder. European child & adolescent psychiatry 8, 1 (1999), 50–55.

[31]

Tumaini R Coker, Marc N Elliott, Sara L Toomey, David C Schwebel, Paula Cuccaro, Susan Tortolero Emery, Susan L Davies, Susanna N Visser, and Mark A Schuster. 2016. Racial and ethnic disparities in ADHD diagnosis and treatment. Pediatrics 138, 3 (2016).

[32]

Marissa K Constand, Joy C MacDermid, Vanina Dal Bello-Haas, and Mary Law. 2014. Scoping review of patient-centered care approaches in healthcare. BMC health services research 14, 1 (2014), 1–9.

[33]

Patrick W Corrigan and Deepa Rao. 2012. On the self-stigma of mental illness: Stages, disclosure, and strategies for change. The Canadian Journal of Psychiatry 57, 8 (2012), 464–469.

[34]

Samuele Cortese, Philip Asherson, Edmund Sonuga-Barke, Tobias Banaschewski, Daniel Brandeis, Jan Buitelaar, David Coghill, David Daley, Marina Danckaerts, Ralf W Dittmann, 2020. ADHD management during the COVID-19 pandemic: guidance from the European ADHD Guidelines Group. The Lancet Child & Adolescent Health 4, 6 (2020), 412–414.

[35]

Søren Dalsgaard, James F Leckman, Preben Bo Mortensen, Helena Skyt Nielsen, and Marianne Simonsen. 2015. Effect of drugs on the risk of injuries in children with attention deficit hyperactivity disorder: a prospective cohort study. The Lancet Psychiatry 2, 8 (2015), 702–709.

[36]

Raminta Daniulaityte, Robert Carlson, Russel Falck, Delroy Cameron, Sujan Perera, Lu Chen, and Amit Sheth. 2013. “I just wanted to tell you that loperamide WILL WORK”: a web-based study of extra-medical use of loperamide. Drug and alcohol dependence 130, 1-3 (2013), 241–244.

[37]

Munmun De Choudhury, Emre Kiciman, Mark Dredze, Glen Coppersmith, and Mrinal Kumar. 2016. Discovering shifts to suicidal ideation from mental health content in social media. In Proceedings of the 2016 CHI conference on human factors in computing systems. 2098–2110.

Digital Library

[38]

Michael Ann DeVito. 2022. How transfeminine TikTok creators navigate the algorithmic trap of visibility via folk theorization. Proceedings of the ACM on Human-Computer Interaction 6, CSCW2 (2022), 1–31.

Digital Library

[39]

Brianna Dym and Casey Fiesler. 2020. Ethical and Privacy Considerations for Research Using Online Fandom Data.Transformative works and cultures 33 (2020).

[40]

Fifth Edition 2013. Diagnostic and statistical manual of mental disorders. Am Psychiatric Assoc 21, 21 (2013), 591–643.

[41]

Moa Eriksson Krutrök. 2021. Algorithmic closeness in mourning: Vernaculars of the hashtag# grief on TikTok. Social Media+ Society 7, 3 (2021), 20563051211042396.

[42]

Adol Esquivel, Funda Meric-Bernstam, and Elmer V Bernstam. 2006. Accuracy and self correction of information received from an internet breast cancer list: content analysis. Bmj 332, 7547 (2006), 939–942.

[43]

Stephen V Faraone, Tobias Banaschewski, David Coghill, Yi Zheng, Joseph Biederman, Mark A Bellgrove, Jeffrey H Newcorn, Martin Gignac, Nouf M Al Saud, Iris Manor, 2021. The world federation of ADHD international consensus statement: 208 evidence-based conclusions about the disorder. Neuroscience & Biobehavioral Reviews (2021).

[44]

Stephen V Faraone and Joseph Biederman. 2005. What is the prevalence of adult ADHD? Results of a population screen of 966 adults. Journal of attention disorders 9, 2 (2005), 384–391.

[45]

Stephen V Faraone, Joseph Biederman, and Eric Mick. 2006. The age-dependent decline of attention deficit hyperactivity disorder: a meta-analysis of follow-up studies. Psychological medicine 36, 2 (2006), 159–165.

[46]

Barbara T Felt, Bernard Biermann, Jennifer G Christner, Param Kochhar, and Richard Van Harrison. 2014. Diagnosis and management of ADHD in children. American Family Physician 90, 7 (2014), 456–464.

[47]

Ashley Fetters. 2018. The Doctor Doesn’t Listen to Her. But the Media Is Starting To.https://www.theatlantic.com/family/archive/2018/08/womens-health-care-gaslighting/567149/ Section: Family.

[48]

Jessica L. Feuston and Anne Marie Piper. 2019. Everyday Experiences: Small Stories and Mental Illness on Instagram. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, 1–14. https://doi.org/10.1145/3290605.3300495

Digital Library

[49]

Jessica L. Feuston, Alex S. Taylor, and Anne Marie Piper. 2020. Conformity of Eating Disorders through Content Moderation. Proceedings of the ACM on Human-Computer Interaction 4, CSCW1 (May 2020), 1–28. https://doi.org/10.1145/3392845

Digital Library

[50]

Casey Fiesler, Cliff Lampe, and Amy S Bruckman. 2016. Reality and perception of copyright terms of service for online content creation. In Proceedings of the 19th ACM conference on computer-supported cooperative work & social computing. 1450–1461.

Digital Library

[51]

Casey Fiesler and Nicholas Proferes. 2018. “Participant” perceptions of Twitter research ethics. Social Media+ Society 4, 1 (2018), 2056305118763366.

[52]

Andrew Flower, Felicity L Bishop, and George Lewith. 2014. How women manage recurrent urinary tract infections: an analysis of postings on a popular web forum. BMC family practice 15, 1 (2014), 1–8.

[53]

Sarah Fraser. 2021. The toxic power dynamics of gaslighting in medicine. Canadian Family Physician 67, 5 (2021), 367.

[54]

Daniel Geller, Carter Petty, Fe Vivas, Jessica Johnson, David Pauls, and Joseph Biederman. 2007. Examining the relationship between obsessive-compulsive disorder and attention-deficit/hyperactivity disorder in children and adolescents: a familial risk analysis. Biological Psychiatry 61, 3 (2007), 316–321.

[55]

Stacie E Geller, Marci Goldstein Adams, and Molly Carnes. 2006. Adherence to federal guidelines for reporting of sex and race/ethnicity in clinical trials. Journal of Women’s Health 15, 10 (2006), 1123–1131.

[56]

Stacie E Geller, Abby Koch, Beth Pellettieri, and Molly Carnes. 2011. Inclusion, analysis, and reporting of sex and race/ethnicity in clinical trials: have we made progress?Journal of women’s health 20, 3 (2011), 315–320.

[57]

Camilla Gesi, Giovanni Migliarese, Sara Torriero, Martina Capellazzi, Anna Caterina Omboni, Giancarlo Cerveri, and Claudio Mencacci. 2021. Gender differences in misdiagnosis and delayed diagnosis among adults with autism spectrum disorder with no language or intellectual disability. Brain Sciences 11, 7 (2021), 912.

[58]

David C Giles and Julie Newbold. 2011. Self-and other-diagnosis in user-led mental health online communities. Qualitative Health Research 21, 3 (2011), 419–428.

[59]

Rosalie Gillett, Zahra Stardust, and Jean Burgess. 2022. Safety for Whom? Investigating How Platforms Frame and Perform Safety and Harm Interventions. Social Media+ Society 8, 4 (2022), 20563051221144315.

[60]

Ylva Ginsberg, Javier Quintero, Ernie Anand, Marta Casillas, and Himanshu P Upadhyaya. 2014. Underdiagnosis of attention-deficit/hyperactivity disorder in adult patients: a review of the literature. The primary care companion for CNS disorders 16, 3 (2014), 23591.

[61]

KIMBERLY Giuliano and ERIC Geyer. 2017. ADHD: Overdiagnosed and overtreated, or misdiagnosed and mistreated. Cleveland Clinic journal of medicine 84, 11 (2017), 873.

[62]

Barney G Glaser. 1992. Basics of grounded theory analysis: Emergence vs forcing. Sociology press.

[63]

Teddy G Goetz and Noah Adams. 2022. The transgender and gender diverse and attention deficit hyperactivity disorder nexus: A systematic review. Journal of Gay & Lesbian Mental Health (2022), 1–18.

[64]

Sarah M Greene, Leah Tuzzio, and Dan Cherkin. 2012. A framework for making patient-centered care front and center. The Permanente Journal 16, 3 (2012), 49.

[65]

Paul H Grunberg, Cindy-Lee Dennis, Deborah Da Costa, and Phyllis Zelkowitz. 2018. Infertility patients’ need and preferences for online peer support. Reproductive biomedicine & society online 6 (2018), 80–89.

[66]

Hanna Grundstrom, Hanna Danell, Emma Skold, and Siw Alehagen. 2020. " A protracted struggle"-a qualitative blog study of endometriosis healthcare experiences in Sweden. Australian Journal of Advanced Nursing, The 37, 4 (2020), 20–27.

[67]

Jennifer Grygiel and Nina Brown. 2019. Are social media companies motivated to be good corporate citizens? Examination of the connection between corporate social responsibility and social media safety. Telecommunications policy 43, 5 (2019), 445–460.

Digital Library

[68]

Tonje Gundersen. 2011. ‘One wants to know what a chromosome is’: the internet as a coping resource when adjusting to life parenting a child with a rare genetic disorder. Sociology of health & illness 33, 1 (2011), 81–95.

[69]

Michele P Hamm, Annabritt Chisholm, Jocelyn Shulhan, Andrea Milne, Shannon D Scott, Lisa M Given, and Lisa Hartling. 2013. Social media use among patients and caregivers: a scoping review. BMJ open 3, 5 (2013), e002819.

[70]

Valerie Hase, Karin Boczek, and Michael Scharkow. 2022. Adapting to Affordances and Audiences? A Cross-Platform, Multi-Modal Analysis of the Platformization of News on Facebook, Instagram, TikTok, and Twitter. Digital Journalism (2022), 1–22.

[71]

Tali Heiman. 2017. The Internet Forums as Tool for Coping and Consultation of Mothers’ with Their Child with ADHD. Psychology Research 7, 1 (2017), 29–41.

[72]

Stephen P Hinshaw, Elizabeth B Owens, Christine Zalecki, Suzanne Perrigue Huggins, Adriana J Montenegro-Nevado, Emily Schrodek, and Erika N Swanson. 2012. Prospective follow-up of girls with attention-deficit/hyperactivity disorder into early adulthood: continuing impairment includes elevated risk for suicide attempts and self-injury.Journal of consulting and clinical psychology 80, 6 (2012), 1041.

[73]

Mao-Hsiu Hua, Kai-Lin Huang, Ju-Wei Hsu, Ya-Mei Bai, Tung-Ping Su, Shih-Jen Tsai, Cheng-Ta Li, Wei-Chen Lin, Tzeng-Ji Chen, and Mu-Hong Chen. 2021. Early pregnancy risk among adolescents with ADHD: a nationwide longitudinal study. Journal of attention disorders 25, 9 (2021), 1199–1206.

[74]

Kathleen E Hupfeld, Tessa R Abagis, and Priti Shah. 2019. Living “in the zone”: hyperfocus in adult ADHD. ADHD Attention Deficit and Hyperactivity Disorders 11, 2 (2019), 191–208.

[75]

Kevin O Hwang, Allison J Ottenbacher, Angela P Green, M Roseann Cannon-Diehl, Oneka Richardson, Elmer V Bernstam, and Eric J Thomas. 2010. Social support in an Internet weight loss community. International journal of medical informatics 79, 1 (2010), 5–13.

[76]

K. C. Ifeanyi. 2022. Your doctor is moonlighting on TikTok as an influencer. https://www.fastcompany.com/90735760/your-doctor-is-moonlighting-on-tiktok-as-an-influencer

[77]

Maia Jacobs, Galina Gheihman, Krzysztof Z Gajos, and Anoopum S Gupta. 2019. " I think we know more than our doctors" How Primary Caregivers Manage Care Teams with Limited Disease-related Expertise. Proceedings of the ACM on Human-Computer Interaction 3, CSCW (2019), 1–22.

[78]

Andreas Jangmo, Amanda Stålhandske, Zheng Chang, Qi Chen, Catarina Almqvist, Inna Feldman, Cynthia M Bulik, Paul Lichtenstein, Brian D’Onofrio, Ralf Kuja-Halkola, 2019. Attention-deficit/hyperactivity disorder, school performance, and effect of medication. Journal of the American Academy of Child & Adolescent Psychiatry 58, 4 (2019), 423–432.

[79]

Heidi L Janz. 2019. Ableism: the undiagnosed malady afflicting medicine. CMAJ 191, 17 (2019), E478–E479.

[80]

Alison Kafer. 2013. Feminist, queer, crip. Indiana University Press.

[81]

Nadia Karizat, Dan Delmonaco, Motahhare Eslami, and Nazanin Andalibi. 2021. Algorithmic folk theories and identity: How TikTok users co-produce Knowledge of identity and engage in algorithmic resistance. Proceedings of the ACM on Human-Computer Interaction 5, CSCW2 (2021), 1–44.

Digital Library

[82]

Natasja Kingod, Bryan Cleal, Ayo Wahlberg, and Gitte R Husted. 2017. Online peer-to-peer communities in the daily lives of people with chronic illness: a qualitative systematic review. Qualitative health research 27, 1 (2017), 89–99.

[83]

Daniel Klug, Yiluo Qin, Morgan Evans, and Geoff Kaufman. 2021. Trick and please. A mixed-method study on user assumptions about the TikTok algorithm. In 13th ACM Web Science Conference 2021. 84–92.

Digital Library

[84]

John Koetsier. 2021. Top 10 Most Downloaded Apps And Games Of 2021: TikTok, Telegram Big Winners. https://www.forbes.com/sites/johnkoetsier/2021/12/27/top-10-most-downloaded-apps-and-games-of-2021-tiktok-telegram-big-winners/ Section: Consumer Tech.

[85]

Wenwen Kong, Shijie Song, Yuxiang Chris Zhao, Qinghua Zhu, Ling Sha, 2021. TikTok as a health information source: assessment of the quality of information in diabetes-related Videos. Journal of Medical Internet Research 23, 9 (2021), e30409.

[86]

Mirka Koro-Ljungberg and Regina Bussing. 2009. The management of courtesy stigma in the lives of families with teenagers with ADHD. Journal of Family Issues 30, 9 (2009), 1175–1200.

[87]

Adam DI Kramer, Jamie E Guillory, and Jeffrey T Hancock. 2014. Experimental evidence of massive-scale emotional contagion through social networks. Proceedings of the National Academy of Sciences 111, 24 (2014), 8788–8790.

[88]

Matthew S Lebowitz. 2016. Stigmatization of ADHD: a developmental review. Journal of Attention Disorders 20, 3 (2016), 199–205.

[89]

Dandan Liang, Ruiying Jia, Xiang Zhou, Guangli Lu, Zhen Wu, Jingfen Yu, Zihui Wang, Haitao Huang, Jieyu Guo, and Chaoran Chen. 2021. The effectiveness of peer support on self-efficacy and self-management in people with type 2 diabetes: A meta-analysis. Patient Education and Counseling 104, 4 (2021), 760–769.

[90]

Linda Lundin. 2020. Parental narratives online about ADHD. Social Work in Mental Health 18, 6 (2020), 684–703.

[91]

Prashant Mahajan, Tanima Basu, Chih-Wen Pai, Hardeep Singh, Nancy Petersen, M Fernanda Bellolio, Samir K Gadepalli, and Neil S Kamdar. 2020. Factors associated with potentially missed diagnosis of appendicitis in the emergency department. JAMA network open 3, 3 (2020), e200612–e200612.

[92]

Sumaira H Malik and Neil S Coulson. 2011. A comparison of lurkers and posters within infertility online support groups. CIN: Computers, Informatics, Nursing 29, 10 (2011), 564–573.

[93]

Jennifer Mankoff, Gillian R. Hayes, and Devva Kasnitz. 2010. Disability studies as a source of critical inquiry for the field of assistive technology. In Proceedings of the 12th international ACM SIGACCESS conference on Computers and accessibility - ASSETS ’10. ACM Press, Orlando, Florida, USA, 3. https://doi.org/10.1145/1878803.1878807

Digital Library

[94]

Deborah Marks. 1997. Models of disability. Disability and rehabilitation 19, 3 (1997), 85–91.

[95]

Thomas J Maronick 2014. Do Consumers Read Terms of Service Agreements When Installing Software?-A Two-Study Empirical Analysis. International Journal of Business and Social Research 4, 6 (2014), 137–145.

[96]

Rafael Massuti, Carlos Renato Moreira-Maia, Fausto Campani, Márcio Sônego, Julia Amaro, Gláucia Chiyoko Akutagava-Martins, Luca Tessari, Guilherme V Polanczyk, Samuele Cortese, and Luis Augusto Rohde. 2021. Assessing undertreatment and overtreatment/misuse of ADHD medications in children and adolescents across continents: A systematic review and meta-analysis. Neuroscience & Biobehavioral Reviews 128 (2021), 64–73.

[97]

Louis S Matza, Clark Paramore, and Manishi Prasad. 2005. A review of the economic burden of ADHD. Cost effectiveness and resource allocation 3, 1 (2005), 1–9.

[98]

Nicola Mead and Peter Bower. 2000. Patient-centredness: a conceptual framework and review of the empirical literature. Social science & medicine 51, 7 (2000), 1087–1110.

[99]

John T Mitchell, Maggie M Sweitzer, Angela M Tunno, Scott H Kollins, and F Joseph McClernon. 2016. “I use weed for my ADHD”: a qualitative analysis of online forum discussions on cannabis use and ADHD. PloS one 11, 5 (2016), e0156614.

[100]

Mohammad-Reza Mohammadi, Hadi Zarafshan, Ali Khaleghi, Nastaran Ahmadi, Zahra Hooshyari, Seyed-Ali Mostafavi, Ameneh Ahmadi, Seyyed-Salman Alavi, Alia Shakiba, and Maryam Salmanian. 2021. Prevalence of ADHD and its comorbidities in a population-based sample. Journal of attention disorders 25, 8 (2021), 1058–1067.

[101]

Melinda Wenner Moyer. 2022. Women Are Calling Out ‘Medical Gaslighting’. The New York Times (March 2022). https://www.nytimes.com/2022/03/28/well/live/gaslighting-doctors-patients-health.html

[102]

Michael J Muller and Sandra Kogan. 2010. Grounded theory method in HCI and CSCW. Cambridge: IBM Center for Social Software 28, 2 (2010), 1–46.

[103]

Diane M Neal and Pamela J McKenzie. 2011. Putting the pieces together: endometriosis blogs, cognitive authority, and collaborative information behavior. Journal of the Medical Library Association: JMLA 99, 2 (2011), 127.

[104]

Lisa Neal, Kate Oakley, Gitte Lindgaard, David Kaufman, Jan Marco Leimeister, and Ted Selker. 2007. Online health communities. In CHI’07 Extended Abstracts on Human Factors in Computing Systems. 2129–2132.

[105]

David E Newman-Toker, Ernest Moy, Ernest Valente, Rosanna Coffey, and Anika L Hines. 2014. Missed diagnosis of stroke in the emergency department: a cross-sectional analysis of a large population-based sample. Diagnosis 1, 2 (2014), 155–166.

[106]

BBC News. 2021. TikTok named as the most downloaded app of 2020. BBC News (Aug. 2021). https://www.bbc.com/news/business-58155103

[107]

Ayah Nuriddin, Graham Mooney, and Alexandre IR White. 2020. Reckoning with histories of medical racism and violence in the USA. The Lancet 396, 10256 (2020), 949–951.

[108]

Jonathan A Obar and Anne Oeldorf-Hirsch. 2020. The biggest lie on the internet: Ignoring the privacy policies and terms of service policies of social networking services. Information, Communication & Society 23, 1 (2020), 128–147.

[109]

Kathleen O’Leary, Arpita Bhattacharya, Sean A Munson, Jacob O Wobbrock, and Wanda Pratt. 2017. Design opportunities for mental health peer support technologies. In Proceedings of the 2017 ACM conference on computer supported cooperative work and social computing. 1470–1484.

Digital Library

[110]

Craig A Olsson, Mark F Boyce, John W Toumbourou, and Susan M Sawyer. 2005. The role of peer support in facilitating psychosocial adjustment to chronic illness in adolescence. Clinical Child Psychology and Psychiatry 10, 1 (2005), 78–87.

[111]

Anjali Om, Bobby Ijeoma, Sara Kebede, and Albert Losken. 2021. Analyzing the quality of aesthetic surgery procedure videos on TikTok. Aesthetic surgery journal 41, 12 (2021), 2078–2083.

[112]

Florin Oprescu, Shelly Campo, John Lowe, Julie Andsager, Jose A Morcuende, 2013. Online information exchanges for parents of children with a rare health condition: key findings from an online support community. Journal of medical Internet research 15, 1 (2013), e2423.

[113]

Siobhan Bernadette Laura O’Connell, Eden Noah Gelgoot, Paul Henry Grunberg, Joy Schinazi, Deborah Da Costa, Cindy-Lee Dennis, Zeev Rosberger, and Phyllis Zelkowitz. 2021. ‘I felt less alone knowing I could contribute to the forum’: psychological distress and use of an online infertility peer support forum. Health Psychology and Behavioral Medicine 9, 1 (2021), 128–148.

[114]

Christian Paz. 2022. When Your Doctor Is on TikTok. https://www.theatlantic.com/politics/archive/2022/01/tiktok-doctors-debunking-pandemic-lies/621346/ Section: Politics.

[115]

Celia Pearce. 2011. Communities of play: Emergent cultures in multiplayer games and virtual worlds. MIT press.

Digital Library

[116]

David M Peña-Guzmán and Joel Michael Reynolds. 2019. The harm of ableism: Medical error and epistemic injustice. Kennedy Institute of Ethics Journal 29, 3 (2019), 205–242.

[117]

Paul N Pfeiffer, Michele Heisler, John D Piette, Mary AM Rogers, and Marcia Valenstein. 2011. Efficacy of peer support interventions for depression: a meta-analysis. General hospital psychiatry 33, 1 (2011), 29–36.

[118]

Vivek S Prakash, Neel A Mansukhani, Irene B Helenowski, Teresa K Woodruff, and Melina R Kibbe. 2018. Sex bias in interventional clinical trials. Journal of Women’s Health 27, 11 (2018), 1342–1348.

[119]

Julie Prescott, Amy Leigh Rathbone, and Gill Brown. 2020. Online peer to peer support: Qualitative analysis of UK and US open mental health Facebook groups. Digital Health 6 (2020), 2055207620979209.

[120]

Patricia O Quinn. 2005. Treating adolescent girls and women with ADHD: Gender-Specific issues. Journal of clinical psychology 61, 5 (2005), 579–587.

[121]

Ujjwal P Ramtekkar, Angela M Reiersen, Alexandre A Todorov, and Richard D Todd. 2010. Sex and age differences in attention-deficit/hyperactivity disorder symptoms and diagnoses: implications for DSM-V and ICD-11. Journal of the American Academy of Child & Adolescent Psychiatry 49, 3 (2010), 217–228.

[122]

Yim Register and Emma S Spiro. 2022. Developing Self-Advocacy Skills through Machine Learning Education: The Case of Ad Recommendation on Facebook. In Proceedings of the International AAAI Conference on Web and Social Media, Vol. 16. 817–828.

[123]

Kathryn E Ringland. 2019. A place to play: the (dis) abled embodied experience for autistic children in online spaces. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems. 1–14.

Digital Library

[124]

Kathryn E Ringland, Arpita Bhattacharya, Kevin Weatherwax, Tessa Eagle, and Christine T Wolf. 2022. ARMY’s Magic Shop: Understanding the Collaborative Construction of Playful Places in Online Communities. In Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems.

Digital Library

[125]

Kathryn E. Ringland, Jennifer Nicholas, Rachel Kornfield, Emily G. Lattie, David C. Mohr, and Madhu Reddy. 2019. Understanding Mental Ill-health as Psychosocial Disability: Implications for Assistive Technology. In The 21st International ACM SIGACCESS Conference on Computers and Accessibility. ACM, Pittsburgh PA USA, 156–170. https://doi.org/10.1145/3308561.3353785

Digital Library

[126]

Kathryn E Ringland, Christine T Wolf, Lynn Dombrowski, and Gillian R Hayes. 2015. Making" Safe" Community-Centered Practices in a Virtual World Dedicated to Children with Autism. In Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing. 1788–1800.

[127]

Angelica Ronald, Emily Simonoff, Jonna Kuntsi, Philip Asherson, and Robert Plomin. 2008. Evidence for overlapping genetic influences on autistic and ADHD behaviours in a community twin sample. Journal of Child psychology and Psychiatry 49, 5 (2008), 535–542.

[128]

Wulf Rössler. 2016. The stigma of mental disorders: A millennia-long history of social exclusion and prejudices. EMBO reports 17, 9 (2016), 1250–1253.

[129]

Nicole Ruggiano, Karen Whiteman, and Natalia Shtompel. 2016. “If I Don’t Like the Way I Feel With a Certain Drug, I’ll Tell Them.” Older Adults’ Experiences With Self-Determination and Health Self-Advocacy. Journal of Applied Gerontology 35, 4 (2016), 401–420.

[130]

Jennifer CH Sebring. 2021. Towards a sociological understanding of medical gaslighting in western health care. Sociology of Health & Illness (2021).

[131]

Reham A Hameed Shalaby and Vincent IO Agyapong. 2020. Peer support in mental health: literature review. JMIR Mental Health 7, 6 (2020), e15572.

[132]

Amie Shoebotham, Neil S Coulson, 2016. Therapeutic affordances of online support group use in women with endometriosis. Journal of medical Internet research 18, 5 (2016), e5548.

[133]

Phyllis Solomon. 2004. Peer support/peer provided services underlying processes, benefits, and critical ingredients.Psychiatric rehabilitation journal 27, 4 (2004), 392.

[134]

Tobias Sonne, Paul Marshall, Carsten Obel, Per Hove Thomsen, and Kaj Grønbæk. 2016. An assistive technology design framework for ADHD. In Proceedings of the 28th Australian Conference on Computer-Human Interaction. 60–70.

Digital Library

[135]

Katta Spiel, Christopher Frauenberger, Os Keyes, and Geraldine Fitzpatrick. 2019. Agency of autistic children in technology research—A critical literature review. ACM Transactions on Computer-Human Interaction (TOCHI) 26, 6 (2019), 1–40.

Digital Library

[136]

Katta Spiel and Kathrin Gerling. 2021. The Purpose of Play: How HCI Games Research Fails Neurodivergent Populations. ACM Transactions on Computer-Human Interaction 28, 2 (April 2021), 1–40. https://doi.org/10.1145/3432245

Digital Library

[137]

Katta Spiel, Eva Hornecker, Rua Mae Williams, and Judith Good. 2022. Adhd and technology research–investigated by neurodivergent readers. In Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems. 1–21.

Digital Library

[138]

Moira Stewart, Judith Belle Brown, Wayne Weston, Ian R McWhinney, Carol L McWilliam, and Thomas Freeman. 2013. Patient-centered medicine: transforming the clinical method. CRC press.

[139]

Anselm Strauss and Juliet M Corbin. 1997. Grounded theory in practice. Sage.

[140]

Yuya Sugawara, Hiroto Narimatsu, Atsushi Hozawa, Li Shao, Katsumi Otani, and Akira Fukao. 2012. Cancer patients on Twitter: a novel patient community on social media. BMC Research Notes 5, 1 (2012), 1–9.

[141]

Nicolas Suzor, Molly Dragiewicz, Bridget Harris, Rosalie Gillett, Jean Burgess, and Tess Van Geelen. 2019. Human rights by design: The responsibilities of social media platforms to address gender-based violence online. Policy & Internet 11, 1 (2019), 84–103.

[142]

Mike Thelwall, Meiko Makita, Amalia Mas-Bleda, and Emma Stuart. 2021. “My ADHD hellbrain”: A Twitter data science perspective on a behavioural disorder. Journal of data and information science 6, 1 (2021), 13–34.

[143]

Dias Oliva Thiago, Antonialli Dennys Marcelo, and Alessandra Gomes. 2021. Fighting hate speech, silencing drag queens? artificial intelligence in content moderation and risks to lgbtq voices online. Sexuality & culture 25, 2 (2021), 700–732.

[144]

Emily Thrower, Ingrid Bretherton, Ken C Pang, Jeffrey D Zajac, and Ada S Cheung. 2020. Prevalence of autism spectrum disorder and attention-deficit hyperactivity disorder amongst individuals with gender dysphoria: a systematic review. Journal of autism and developmental disorders 50, 3 (2020), 695–706.

[145]

Alexandra Topping. 2023. UK children waiting 16 months on average for ADHD and autism screening – study. The Guardian (Jul 2023). https://www.theguardian.com/society/2023/jul/17/uk-children-waiting-16-months-on-average-for-adhd-and-autism-screening-study

[146]

Kathlene Tracy and Samantha P Wallace. 2016. Benefits of peer support groups in the treatment of addiction. Substance abuse and rehabilitation 7 (2016), 143.

[147]

Nick Walker. 2014. Neurodiversity: Some Basic Terms & Definitions. https://neuroqueer.com/neurodiversity-terms-and-definitions/

[148]

Anne Walters. 2018. Girls with ADHD: Underdiagnosed and untreated. The Brown University Child and Adolescent Behavior Letter 34, 11 (2018), 8–8.

[149]

Emma Whelan. 2007. ‘No one agrees except for those of us who have it’: endometriosis patients as an epistemological community. Sociology of health & illness 29, 7 (2007), 957–982.

[150]

Andrew Whitehouse and Sarah Pillar. 2023. Autism and ADHD assessment waits are up to 2 years’ long. What can families do in the meantime?http://theconversation.com/autism-and-adhd-assessment-waits-are-up-to-2-years-long-what-can-families-do-in-the-meantime-203232

[151]

Paul Wicks, Michael Massagli, Jeana Frost, Catherine Brownstein, Sally Okun, Timothy Vaughan, Richard Bradley, James Heywood, 2010. Sharing health data for better outcomes on PatientsLikeMe. Journal of medical Internet research 12, 2 (2010), e1549.

[152]

Rua M Williams and Juan E Gilbert. 2019. “Nothing About Us Without Us” Transforming Participatory Research and Ethics in Human Systems Engineering. In Advancing diversity, inclusion, and social justice through human systems engineering. CRC Press, 113–134.

[153]

Anthony Yeung, Enoch Ng, and Elia Abi-Jaoude. 2022. TikTok and Attention-Deficit/Hyperactivity Disorder: A Cross-Sectional Study of Social Media Content Quality. The Canadian Journal of Psychiatry (2022), 07067437221082854.

[154]

Anon Ymous and Judith Good. 2020. “I am just terrified of my future” – Epistemic Violence in Disability Related Technology Research. (2020), 16.

[155]

Dustin Y Yoon, Neel A Mansukhani, Vanessa C Stubbs, Irene B Helenowski, Teresa K Woodruff, and Melina R Kibbe. 2014. Sex bias exists in basic science and translational surgical research. Surgery 156, 3 (2014), 508–516.

[156]

Kaya Yurieff. 2020. Doctors turn to Twitter and TikTok to share coronavirus news. https://www.cnn.com/2020/03/31/tech/social-media-doctors-coronavirus/index.html

[157]

Marco Zenone, Nikki Ow, and Skye Barbic. 2021. TikTok and public health: a proposed research agenda. BMJ global health 6, 11 (2021), e007648.

[158]

Xin Zhao, Stefany J Coxe, Adela C Timmons, and Stacy L Frazier. 2021. Mental Health Information Seeking Online: A Google Trends Analysis of ADHD. Administration and Policy in Mental Health and Mental Health Services Research (2021), 1–17.

[159]

David X Zheng, Anne Y Ning, Melissa A Levoska, Laura Xiang, Christina Wong, and Jeffrey F Scott. 2021. Acne and social media: A cross-sectional study of content quality on TikTok. Pediatric dermatology 38, 1 (2021), 336–338.

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Index Terms

“You Can't Possibly Have ADHD”: Exploring Validation and Tensions around Diagnosis within Unbounded ADHD Social Media Communities
1. Human-centered computing
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ASSETS '23: Proceedings of the 25th International ACM SIGACCESS Conference on Computers and Accessibility

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1163 pages

ISBN:9798400702204

DOI:10.1145/3597638

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Published: 22 October 2023

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