The importance of involving experts-by-experience with different psychiatric diagnoses when revising diagnostic criteria

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Fellowes, S. (2023). The importance of involving experts-by-experience with different psychiatric diagnoses when revising diagnostic criteria. Synthese, 202(6). https://doi.org/10.1007/s11229-023-04399-6

Publication date: 22 Nov 2023 Added to AutiHub: 14 Sep 2026 Type: Article Article language: English
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  1. Sam Fellowes *

Abstract

Abstract Philosophers of science have recently called for experts-by-experience to be involved in revising psychiatric diagnoses. They argue that experts-by-experience can have relevant knowledge which is important for considering potential modifications to psychiatric diagnoses. I show how altering one diagnosis can impact individuals with a different diagnosis. For example, altering autism can impact individuals diagnosed with Attention Deficit Hyperactivity Disorder and Schizoid Personality Disorder through co-morbidity and differential diagnostic criteria. Altering autism can impact the population making up the diagnosis of Attention Deficit Hyperactivity Disorder and Schizoid Personality Disorder which can then influence which behaviour each diagnosis covers and which parts of the causal structure each diagnosis covers. Expanding one diagnosis can mean, if differential diagnostic criteria are present, that individuals who have a different diagnosis, or would one day have been diagnosed with that different diagnosis, are instead now diagnosed with the expanded diagnosis. Alternatively, if two diagnoses can be co-morbid then expanding one diagnosis can mean individuals who have a different diagnosis can now also receive the expanded diagnosis. Changing these can then impact the adequacy of symptoms formulated to cover behaviour and causal mechanisms formulated to cover the causal structure. This means experts-by-experience representing a range of diagnoses should be involved in decisions over modifying diagnoses they do not have. For example, Attention Deficit Hyperactivity Disorder individuals should be involved in decisions to modify autism. I discuss practical issues relating to how much say people with a range of diagnoses should have in relation to modifying a diagnosis which they do not have. We should employ a principle of equality whereby the level of say individuals with one diagnosis should have on another diagnosis should be equally reciprocated.

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Cited references
32
With a DOI
25
Without a DOI, from raw bibliography text
7
1 / 32 (3.1%) cited references include at least one author identified as autistic.
References with data to complete
8 / 32 (25.0%)
References with detected author names
29 / 32 (90.6%)
Without detected author names
3
Without a structured title
7
Without a stable identifier
7
References with raw author names still to review
2
References with external metadata lookup issues
0
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Author names detected in the cited bibliography
71
From DOI or external metadata
71
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
2
4 / 71 (5.6%) names are linked to an author already present in AutiHub. 67 / 71 (94.4%) names are not yet linked.
Names linked to a person identified as autistic
1 / 71 (1.4%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 1 / 4 (25.0%). Distinct people identified as autistic: 1 / 71 (1.4%).
  1. Stuart A. Kirk , David Cohen , Tomi Gomory (2015). DSM-5: The Delayed Demise of Descriptive Diagnosis . In History, Philosophy and Theory of the Life Sciences (pp. 63-81). Springer Netherlands.
    Type: Book chapter DOI: 10.1007/978-94-017-9765-8_4 OpenAlex: https://openalex.org/W1479864079
    Crossref OpenAlex OpenCitations
  2. M Antshel, Kevin (2019). Antshel, Kevin, M., & Russo, N. (2019). Autism Spectrum disorders and ADHD: Overlapping Phenomenology, Diagnostic issues, and treatment considerations. Current Psychiatry Reports, 21(34), 1–11. Current Psychiatry Reports, 21(34), 1.
    Type: Other
    Crossref
  3. Valentina Petrolini , Agustín Vicente (2022). The challenges raised by comorbidity in psychiatric research: The case of autism . Philosophical Psychology, 35(8), 1234-1263. Informa UK Limited.
    Type: Article DOI: 10.1080/09515089.2022.2052829 OpenAlex: https://openalex.org/W4220652177
    Crossref OpenAlex OpenCitations
  4. Susan Dickerson Mayes , Susan L. Calhoun , Rebecca D. Mayes , Sarah Molitoris (2012). Autism and ADHD: Overlapping and discriminating symptoms . Research in Autism Spectrum Disorders, 6(1), 277-285. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2011.05.009 OpenAlex: https://openalex.org/W1989444913
    Crossref OpenAlex OpenCitations
  5. APA. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Association.
    Type: Other
    Crossref
  6. Rebecca A. Johnson , Marna S. Barrett , Dominic A. Sisti (2013). The Ethical Boundaries of Patient and Advocate Influence on DSM-5 . Harvard Review of Psychiatry, 21(6), 334-344. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/hrp.0000000000000010 OpenAlex: https://openalex.org/W2025462124
    Crossref OpenAlex OpenCitations
  7. Regina Taurines , Christina Schwenck , Eva Westerwald , Michael Sachse , Michael Siniatchkin , Christine Freitag (2012). ADHD and autism: differential diagnosis or overlapping traits? A selective review . ADHD Attention Deficit and Hyperactivity Disorders, 4(3), 115-139. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s12402-012-0086-2 OpenAlex: https://openalex.org/W1997676278
    Crossref OpenAlex OpenCitations
  8. Worth Boone , Gualtiero Piccinini (2016). Mechanistic Abstraction . Philosophy of Science, 83(5), 686-697. Cambridge University Press (CUP).
    Type: Article DOI: 10.1086/687855 OpenAlex: https://openalex.org/W4248035571
    Crossref OpenAlex OpenCitations
  9. Lindley Darden (2002). Strategies for Discovering Mechanisms: Schema Instantiation, Modular Subassembly, Forward/Backward Chaining . Philosophy of Science, 69(S3), S354-S365. Cambridge University Press (CUP).
    Type: Article DOI: 10.1086/341858 OpenAlex: https://openalex.org/W2000277421
    Crossref OpenAlex OpenCitations
  10. Tereza-Maria Booules-Katri , Carla Pedreño , Jose-Blás Navarro , Montserrat Pamias , Jordi E. Obiols (2019). Theory of Mind (ToM) Performance in High Functioning Autism (HFA) and Schizotypal–Schizoid Personality Disorders (SSPD) Patients . Journal of Autism and Developmental Disorders, 49(8), 3376-3386. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04058-1 OpenAlex: https://openalex.org/W2944860128
    Crossref OpenAlex OpenCitations
  11. Coralie Chevallier , Julie Grèzes , Catherine Molesworth , Sylvie Berthoz , Francesca Happé (2012). Brief Report: Selective Social Anhedonia in High Functioning Autism . Journal of Autism and Developmental Disorders, 42(7), 1504-1509. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-011-1364-0 OpenAlex: https://openalex.org/W2071499781
    Crossref OpenAlex OpenCitations
  12. Anke Bueter (2019). Epistemic Injustice and Psychiatric Classification . Philosophy of Science, 86(5), 1064-1074. Cambridge University Press (CUP).
    Type: Article DOI: 10.1086/705443 OpenAlex: https://openalex.org/W2956485282
    Crossref OpenAlex OpenCitations
  13. Fereshteh Roshani , Reza Piri , Ayyoub Malek , Tanja Maria Michel , Manouchehr Seyedi Vafaee (2020). Comparison of cognitive flexibility, appropriate risk-taking and reaction time in individuals with and without adult ADHD . Psychiatry Research, 284, 112494. Elsevier BV.
    Type: Article DOI: 10.1016/j.psychres.2019.112494 OpenAlex: https://openalex.org/W2962747307
    Crossref OpenAlex OpenCitations
  14. Kenneth S. Kendler (2010). Advances in Our Understanding of Genetic Risk Factors for Autism Spectrum Disorders . American Journal of Psychiatry, 167(11), 1291-1293. American Psychiatric Association Publishing.
    Type: Article DOI: 10.1176/appi.ajp.2010.10081160 OpenAlex: https://openalex.org/W2053117085
    Crossref OpenAlex OpenCitations
  15. Anke Bueter (2021). Public epistemic trustworthiness and the integration of patients in psychiatric classification . Synthese, 198(S19), 4711-4729. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11229-018-01913-z OpenAlex: https://openalex.org/W2891166798
    Crossref OpenAlex OpenCitations
  17. Steven E. Hyman (2010). The Diagnosis of Mental Disorders: The Problem of Reification . Annual Review of Clinical Psychology, 6(1), 155-179. Annual Reviews.
    Type: Article DOI: 10.1146/annurev.clinpsy.3.022806.091532 OpenAlex: https://openalex.org/W2133304638
    Crossref OpenAlex OpenCitations
  18. BN Cuthbert (2013). Cuthbert, B. N., & Insel, Thomas, R. (2013). Towards the future of psychiatric diagnosis: The seven pillars of RDoC. BMC Medicine, 11(126), 1–8. BMC Medicine, 11(126), 1.
    Type: Other
    Crossref
  19. Jeffrey Poland (2014). Deeply Rooted Sources of Error and Bias in Psychiatric Classification . In Classifying Psychopathology (pp. 29-64). The MIT Press.
    Type: Book chapter DOI: 10.7551/mitpress/8942.003.0004 OpenAlex: https://openalex.org/W4235776838
    Crossref OpenAlex OpenCitations
  20. K. S. Kendler , P. Zachar , C. Craver (2011). What kinds of things are psychiatric disorders? Psychological Medicine, 41(6), 1143-1150. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s0033291710001844 OpenAlex: https://openalex.org/W2140530754
    Crossref OpenAlex OpenCitations
  21. Brenda Happell , Sarah Gordon , Julia Bocking , Pete Ellis , Cath Roper , Jackie Liggins et al. (2018). Mental Health Researchers’ Views About Service User Research: A Literature Review . Issues in Mental Health Nursing, 39(12), 1010-1016. Informa UK Limited.
    Type: Article DOI: 10.1080/01612840.2018.1475524 OpenAlex: https://openalex.org/W2900521909
    Crossref OpenAlex OpenCitations
  22. James A. Overton (2011). Mechanisms, Types, and Abstractions . Philosophy of Science, 78(5), 941-954. Cambridge University Press (CUP).
    Type: Article DOI: 10.1086/662274 OpenAlex: https://openalex.org/W2318294655
    Crossref OpenAlex OpenCitations
  23. P Friesen (2019). Friesen, P., Lignou, S., Sheehan, M., & Singh, I. (2019). Measuring the impact of participatory research in psychiatry: How the search for epistemic justifications obscures ethical considerations. Health Expectations, 24(1), 54–61. Health Expectations, 24(1), 54.
    Type: Other
    Crossref
  24. Şerife Tekin (2022). Participatory Interactive Objectivity in Psychiatry . Philosophy of Science, 89(5), 1166-1175. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/psa.2022.47 OpenAlex: https://openalex.org/W4281493264
    Crossref OpenAlex OpenCitations
  25. Daniel A. Weiskopf (2017). An ideal disorder? Autism as a psychiatric kind . Philosophical Explorations, 20(2), 175-190. Informa UK Limited.
    Type: Article DOI: 10.1080/13869795.2017.1312500 OpenAlex: https://openalex.org/W2611424634
    Crossref OpenAlex OpenCitations
  26. Hacking, I. (1995). The Looping effects of Human kinds. In D. Sperber, D. Premack, & J. Premack, Ann (Eds.), Causal cognitions: A multi-disciplinary debate (pp. 351 – 83). Oxford University Press.
    Type: Other
    Crossref
  27. Kevin M. Antshel , Natalie Russo (2019). Autism Spectrum Disorders and ADHD: Overlapping Phenomenology, Diagnostic Issues, and Treatment Considerations . Current Psychiatry Reports, 21(5), 1. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11920-019-1020-5 OpenAlex: https://openalex.org/W2923605635
    OpenAlex
  28. Carina Sangill , Niels Buus , Lisbeth Hybholt , Lene Lauge Berring (2019). Service user's actual involvement in mental health research practices: A scoping review . International Journal of Mental Health Nursing, 28(4), 798-815. Wiley.
    Type: Article DOI: 10.1111/inm.12594 OpenAlex: https://openalex.org/W2926648493
    Crossref OpenAlex OpenCitations
  29. Phoebe Friesen , Sapfo Lignou , Mark Sheehan , Ilina Singh (2021). Measuring the impact of participatory research in psychiatry: How the search for epistemic justifications obscures ethical considerations . Health Expectations, 24(S1), 54-61. Wiley.
    Type: Article DOI: 10.1111/hex.12988 OpenAlex: https://openalex.org/W2996436255
    OpenAlex
  30. Diana Rose (2019). Rose, D., & Kalathil, J. (2019). Power, privilege and Knowedge: The untenable Promise of co-production in Mental Health. Frontiers in Sociology, 4(57), 1–11. Frontiers in Sociology, 4(57), 1.
    Type: Other
    Crossref
  31. (2013). Current Psychiatry Reports . Current Psychiatry Reports. Springer Science and Business Media LLC.
    Type: Other DOI: 10.1007/11920.1535-1645 OpenAlex: https://openalex.org/W4245322670
    OpenAlex
  32. J Stein, Dan (2013). Stein, Dan, J., & Phillips, Katherine, A. (2013). Patient advocacy and DSM-5. BMC Medicine, 11(13), 1–5. BMC Medicine, 11(13), 1.
    Type: Other
    Crossref