Аутистические черты, прототипы, фенотипы, спектр и идентичности: переосмысление понимания аутизма с Г.Е. Сухаревой,
Аннотация
Контекст и актуальность. Изменения в диагностических критериях аутизма, особенно в пятом издании Диагностического и статистического руководства по психическим расстройствам, повысили чувствительность диагностики, но одновременно размыли границы между аутизмом как нейробиологическим состоянием и аутизмом как социальной идентичностью. Это вызывает вопросы о том, как диагноз аутизма влияет на социальные ярлыки, доступность поддержки и на понимание когнитивных различий. Цель. В настоящем исследовании проведен критический анализ доминирующих дефицитарных определений аутизма, и изучаются альтернативные исторические и социокультурные подходы, подчеркивающие сильные стороны и расхождения в определениях. Гипотеза. Современные диагностические модели недостаточно отражают сложность аутизма и закрепляют редукционистские, медикализированные парадигмы. Переосмысление консервативных клинических прототипов и социокультурных представлений поможет создать концепции аутизма, более инклюзивные и ориентированные на сильные стороны людей. Методы и материалы. Теоретический и междисциплинарный анализ опирается на классификационные системы психиатрии, ранние клинические описания, современные исследования аутизма и феноменологические наблюдения в образовательной среде. Используются конструктивистская эпистемология, критический реализм и эпистемологический плюрализм. Результаты. Анализ выявляет концептуальные расхождения между «нейробиологическим аутизмом» и «социальным аутизмом». Также подчеркивается значимость ранних моделей, подходов Груни Ефимовны Сухаревой к объяснению гендерных различий и когнитивного разнообразия. Выводы. В доминирующих классификациях патологизируются различия и игнорируются когнитивные ресурсы людей. Переосмысление границ между диагнозом, когницией и социальной идентификацией может способствовать созданию недискриминационных практик в образовании, здравоохранении и социальной политике.
Литература
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). American Psychiatric Association. https://doi.org/10.1176/appi.books.9780890423349
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Association. https://doi.org/10.1176/appi.books.9780890425596
Antibi, A. (2003). La constante macabre — Ou comment a-t-on découragé des générations d’élèves? Nathan. ISBN 10 : 2098996047. ISBN 13 : 9782098996045
Anttila, V., Bulik-Sullivan, B., Finucane, H.K., Walters, R.K., Bras, J., Duncan, L., Escott-Price, V., Falcone, G.J., Gormley, P., Malik, R., Patsopoulos, N.A., Ripke, S., Wei, Z., Yu, D., Lee, P.H., Turley, P., Grenier-Boley, B., Chouraki, V., Kamatani, Y., Berr, C. (2018). Analysis of shared heritability in common disorders of the brain. Science, 360(6395), eaap8757. https://doi.org/10.1126/science.aap8757
Asperger, H. (1944). Die “autistischen Psychopathen” im Kindesalter. Archiv fór Psychiatrie und Nervenkrankheiten, 117(1), 76—136. https://doi.org/10.1007/BF01837709
Baron-Cohen, S. (2017). Editorial perspective: Neurodiversity — a revolutionary concept for autism and psychiatry. Journal of Child Psychology and Psychiatry, 58(6), 744—747. https://doi.org/10.1111/jcpp.12703
Best, C., Arora, S., Porter, F., Doherty, M. (2015). The relationship between subthreshold autistic traits, ambiguous figure perception and divergent thinking. Journal of Autism and Developmental Disorders, 45(12), 4064—4073. https:// doi.org/10.1007/s10803-015-2518-2
Bleuler, E. (1911). Dementia Praecox oder Gruppe der Schizophrenien. Leipzig & Wien.
Botha, M., Frost, D.M. (2020). Extending the minority stress model to understand mental health problems experienced by the autistic population. Society and Mental Health, 10(1), pp. 20—34. https://doi.org/10.1177/2156869318804297
Bourdieu, P. (1986). Ce que parler veut dire. Minuit. ISBN 10 : 2213012164. ISBN 13 : 978-2213012162
Cabana-Domínguez, J., Torrico, B., Reif, A., Fernàndez-Castillo, N., Cormand, B. (2022). Comprehensive exploration of the genetic contribution of the dopaminergic and serotonergic pathways to psychiatric disorders. Translational Psychiatry, 12(1), 11. https://doi.org/10.1038/s41398-021-01771-3
Charman, T., Pickles, A., Simonoff, E., Chandler, S., Loucas, T., Baird, G. (2011). IQ in children with autism spectrum disorders: Data from the Special Needs and Autism Project (SNAP). Psychological Medicine, 41(3), 619—627. https:// doi.org/10.1017/S0033291710000991
Chown, N. (2019). Are the “autistic traits” and “broader autism phenotype” concepts real or mythical? Autism Policy and Practice, 2(1), 46—63.
Cook, J., Hull, L., Crane, L., Mandy, W. (2021). Camouflaging in autism: A systematic review. Clinical Psychology Review, 89, 102080. https://doi.org/10.1016/j.cpr.2021.102080
Cook, M.L., Zhang, Y., Constantino, J.N. (2020). On the continuity between autistic and schizoid personality disorder trait burden: A prospective study in adolescence. The Journal of Nervous and Mental Disease, 208(2), 94—100. https://doi. org/10.1097/NMD.0000000000001105
Corrigan, P.W., Rao, D. (2012). On the self-stigma of mental illness: Stages, disclosure, and strategies for change. Canadian Journal of Psychiatry, 57(8), 464—469. https://doi.org/10.1177/070674371205700804
Cosgrove, L., Krimsky, S. (2012). A comparison of DSM-IV and DSM-5 panel members’ financial associations with industry: A pernicious problem persists. PLoS Medicine, 9(3), e1001190. https://doi.org/10.1371/journal.pmed.1001190
Crawshaw, D. (2023). Should we continue to tell autistic people that their brains are different? Psychological Medicine. Advance online publication. https://doi.org/10.1177/00332941231174391
Cross-Disorder Group of the Psychiatric Genomics Consortium. (2013). Identification of risk loci with shared effects on five major psychiatric disorders: A genome-wide analysis. The Lancet, 381(9875), 1371—1379. https://doi.org/10.1016/ S0140-6736(12)62129-1
Davis, L.C., Diianni, A.T., Drumheller, S.R., Elansary, N.N., D’Ambrozio, G.N., Herrawi, F., Cosgrove, L. (2024). Undisclosed financial conflicts of interest in DSM-5-TR: Cross sectional analysis. BMJ, 384, e076902. https://doi. org/10.1136/bmj-2023-076902
Dumas, J.E. (2013). Psychopathologie de l’enfant et de l’adolescent. De Boeck Supórieur.
Dwyer, P. (2022). Stigma, incommensurability, or both? Pathology-first, person-first, and identity-first language and the challenges of discourse in divided autism communities. Journal of Developmental & Behavioral Pediatrics, 43(2), 111—113. https://doi.org/10.1097/DBP.0000000000001054
Fernandes, F.D., Amato, C.A. (2013). Applied behavior analysis and autism spectrum disorders: Literature review. CoDAS, 25(3), 289—296. https://doi.org/10.1590/s2317-17822013000300016
Feyerabend, P. (1975). Against method: Outline of an anarchistic theory of knowledge. New Left Books. ISBN 10 : 0902308912. ISBN 13 : 9780902308916
Foucault, M. (1972). Histoire de la folie à l’âge Classique. Gallimard. ISBN 10 : 2070295826. ISBN 13 : 978-2070295821
Frankl, G. (1957). Autism in childhood: An attempt of an analysis (Unpublished manuscript). Lawrence, K.S.: Kenneth Spencer Research Library, The University of Kansas.
Frigaux, A., Vacant, C., Evrard, R. (2022). Le devenir autiste au féminin : difficultés diagnostiques et ressources subjectives. Une revue de littérature. L’Évolution Psychiatrique. https://doi.org/10.1016/j.evopsy.2022.06.001
Grzadzinski, R., Dick, C., Lord, C., Bishop, S. (2016). Parent-reported and clinician-observed autism spectrum disorder (ASD) symptoms in children with attention deficit/hyperactivity disorder (ADHD): Implications for practice under DSM-5. Molecular Autism, 7, Article 7. https://doi.org/10.1186/s13229-016-0072-1
Haltigan, J.D., Pringsheim, T.M., Rajkumar, G. (2023). Social media as an incubator of personality and behavioral psychopathology: Symptom and disorder authenticity or psychosomatic social contagion? Comprehensive Psychiatry, 121, 152362. https://doi.org/10.1016/j.comppsych.2022.152362
Hughes, J.A. (2021). Does the heterogeneity of autism undermine the neurodiversity paradigm? Bioethics, 35(1), 47—60. https://doi.org/10.1111/bioe.12780
Hull, L., Petrides, K. V., Allison, C., Smith, P., Baron-Cohen, S., Lai, M. C., Mandy, W. (2017). “Putting on my best normal”: Social camouflaging in adults with autism spectrum conditions. Journal of Autism and Developmental Disorders, 47(8), 2519—2534. https://doi.org/10.1007/s10803-017-3166-5
Hyman, S.E. (2021). Psychiatric disorders: Grounded in human biology but not natural kinds. Perspectives in Biology and
Medicine, 64(1), 6—28. https://doi.org/10.1353/pbm.2021.0002
Ingersoll, B., Wainer, A. (2014). The broader autism phenotype. In F.R. Volkmar, S.J. Rogers, R. Paul, K.A. Pelphrey (Eds.), Handbook of autism and pervasive developmental disorders: Diagnosis, development, and brain mechanisms. pp. 28—56. John Wiley & Sons. https://doi.org/10.1002/9781118911389.hautc02
Jaarsma, P., Welin, S. (2012). Autism as a natural human variation: Reflections on the claims of the neurodiversity movement. Health Care Analysis, 20(1), 20—30. https://doi.org/10.1007/s10728-011-0169-9
Jones, E.E., Berglas, S. (1978). Control of attributions about the self through self-handicapping strategies: The appeal of alcohol and the role of underachievement. Personality and Social Psychology Bulletin, 4(2), 200—206. https://doi. org/10.1177/014616727800400205
Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217—250.
Kanner, L. (1971). Follow-up study of eleven autistic children originally reported in 1943. Journal of Autism and Childhood Schizophrenia, 1(2), 119—145. https://doi.org/10.1007/bf01537953
Klang, A., Westerberg, B., Humble, M.B., Bejerot, S. (2022). The impact of schizotypy on quality of life among adults with autism spectrum disorder. BMC Psychiatry, 22(1). https://doi.org/10.1186/s12888-022-03841-2
Kolditz, T.A., Arkin, R.M. (1982). An impression management interpretation of the self-handicapping strategy. Journal of Personality and Social Psychology, 43(3), 492—502. https://doi.org/10.1037/0022-3514.43.3.492
Kushki, A., Anagnostou, E., Hammill, C., Duez, P., Brian, J., Iaboni, A., Schachar, R., Crosbie, J., Arnold, P., Lerch, J.P. (2019). Examining overlap and homogeneity in ASD, ADHD, and OCD: a data-driven, diagnosis-agnostic approach. Translational Psychiatry, 9(1). https://doi.org/10.1038/s41398-019-0631-2
Lai, M.C., Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. The Lancet Psychiatry, 2(11), 1013—1027. https://doi.org/10.1016/S2215-0366(15)00277-1
Landry, A. (2022). Les risques de s’autodiagnostiquer un trouble de santé mentale avec les réseaux sociaux. Radio-Canada. https://ici.radio-canada.ca/recit-numerique/4500/autodiagnostic-reseaux-sociaux-sante-mentale (viewed: 05.06.2025)
Leblond, C.S., Le, T.-L., Malesys, S., Cliquet, F., Tabet, A.-C., Delorme, R., Rolland, T., & Bourgeron, T. (2021). Operative list of genes associated with autism and neurodevelopmental disorders based on database review. Molecular and Cellular Neuroscience, 113, 103623. https://doi.org/10.1016/j.mcn.2021.103623
Link, B.G., Cullen, F.T., Struening, E., Shrout, P.E., Dohrenwend, B.P. (1989). A modified labeling theory approach to mental disorders: An empirical assessment. American Sociological Review, 54(3), 400—423. https://doi. org/10.2307/2095613
Ludwig, F. (2022). The deindividuation resister hypothesis. http://franklludwig.com/deindividuationresisters.html (viewed: 05.06.2025)
Maddox, B.B., Brodkin, E.S., Calkins, M.E., Shea, K., Mullan, K., Hostager, J., Mandell, D.S., Miller, J.S. (2017). The Accuracy of the ADOS-2 in Identifying Autism among Adults with Complex Psychiatric Conditions. Journal of Autism and Developmental Disorders, 47(9), 2703—2709. https://doi.org/10.1007/s10803-017-3188-z
Manouilenko, I., Bejerot, S. (2015). Sukhareva — Prior to Asperger and Kanner. Nordic Journal of Psychiatry, 69(6), 479—482. https://doi.org/10.3109/08039488.2015.1005022
Martin, J., Hamshere, M.L., Stergiakouli, E., O’Donovan, M.C., Thapar, A. (2014). Genetic risk for attention-deficit/ hyperactivity disorder contributes to neurodevelopmental traits in the general population. Biological Psychiatry, 76(8), 664—671. https://doi.org/10.1016/j.biopsych.2014.02.013
Mead, G.H., Becker, H.S. (2011). Labeling Theory: Social constructionism, social stigma, deinstitutionalisation. Books LLC. ISBN 10 : 1234583348. ISBN 13 : 978-1234583347
Mottron, L. (2021). A radical change in our autism research strategy is needed: Back to prototypes. Autism Research, 14(10), 2213—2220. https://doi.org/10.1002/aur.2494
Nietzsche, F. (1976). Œuvres philosophiques complètes, XIII : Fragments posthumes : (Automne 1887 — Mars 1888). Gallimard. ISBN 10 : 2070294196. ISBN 13 : 978-2070294190
Pellicano, E., den Houting, J. (2022). Annual research review: Shifting from ‘normal science’ to neurodiversity in autism science. Journal of Child Psychology and Psychiatry, 63(4), 381—396. https://doi.org/10.1111/jcpp.13534
Plato (1943). Plato’s The Republic. Modern Library.
Plomin, R. (2018). Blueprint: How DNA makes us who we are. MIT Press. ISBN 10 : 0262039168. ISBN 13 : 978-0262039161
Popper, K.R. (1959). The logic of scientific discovery. Julius Springer, Hutchinson & Co.
Posar, A., Visconti, P. (2017). Tribute to Grunya Efimovna Sukhareva, the woman who first described infantile autism. Journal of Pediatric Neurosciences, 12(3), 300—301. https://doi.org/10.4103/jpn.JPN_46_17
Pulman, A., Taylor, J. (2012). Munchausen by internet: Current research and future directions. Journal of Medical Internet Research, 14(4), e115. https://doi.org/10.2196/jmir.2011
Rebecchi, K. (2023a). Autistic children: Grunya Sukhareva. Kindle Direct Publishing. 114 р. ISBN-10 : 169098676X
Rebecchi, K. (2023b). Autism: The Founding Writings of Hans Asperger. Kindle Direct Publishing. 247 p. ISBN-13 : 979-8858690825
Rebecchi, K. (2023c). Autistic children: Hans Asperger. Kindle Direct Publishing. 147 р. ISBN-13 : 979-8852399045
Rebecchi, K. (2024). “Early childhood autism, Asperger type”, by H. Asperger (1982). History of psychiatry, 35(3-4), 363—376. https://doi.org/10.1177/0957154X241248261
Reese, S.D. (2022). Writing the conceptual article: A practical guide. Digital Journalism, 10(10), 1—16. https://doi.org/1 0.1080/21670811.2021.2009353
Robinson, E.B., Koenen, K.C., McCormick, M.C., Munir, K., Hallett, V., Happó, F., ... Ronald, A. (2011). Evidence that autistic traits show the same etiology in the general population and at the quantitative extremes (5%, 2.5%, and 1%). Archives of General Psychiatry, 68(11), 1113—1121. https://doi.org/10.1001/archgenpsychiatry.2011.119 normal”: Social camouflaging in adults with autism spectrum conditions. Journal of Autism and Developmental Disorders, 47(8), 2519—2534. https://doi.org/10.1007/s10803-017-3166-5
Rødgaard, E.M., Jensen, K., Miskowiak, K.W., Mottron, L. (2021). Childhood diagnoses in individuals identified as autistics in adulthood. Molecular Autism, 12(1), 73. https://doi.org/10.1186/s13229-021-00478-y
Rynkiewicz, A., Schuller, B., Marchi, E., Piana, S., Camurri, A., Lassalle, A., Baron-Cohen, S. (2016). An investigation of the ‘female camouflage effect’ in autism using a computerized ADOS-2 and a test of sex/gender differences. Molecular Autism, 7, Article 10. https://doi.org/10.1186/s13229-016-0073-0
Sandbank, M., Bottema-Beutel, K., Crowley, S., Cassidy, M., Dunham, K., Feldman, J.I., Crank, J., Albarran, S.A., Raj, S., Mahbub, P., Woynaroski, T.G. (2020). Project AIM: Autism intervention meta-analysis for studies of young children. Psychological Bulletin, 146(1), 1—29. https://doi.org/10.1037/bul0000215
Sher, D.A., Gibson, J.L. (2021). Pioneering, prodigious and perspicacious: Grunya Efimovna Sukhareva’s life and contribution to conceptualising autism and schizophrenia. European Child & Adolescent Psychiatry. https://doi. org/10.1007/s00787-021-01875-7
Smith, I.C., Reichow, B., Volkmar, F.R. (2015). The effects of DSM-5 criteria on number of individuals diagnosed with autism spectrum disorder: A systematic review. Journal of Autism and Developmental Disorders, 45(8), 2541—2552. https://doi.org/10.1007/s10803-015-2423-8
Sukhareva, G.E. (1926a). Die schizoiden Psychopathien im Kindesalter. (Part 1 of 2). European Neurology, 60(3—4), 235—247. https://doi.org/10.1159/000190478
Sukhareva, G.E. (1926b). Die schizoiden Psychopathien im Kindesalter. (Part 2 of 2). European Neurology, 60(3—4), 248—261. https://doi.org/10.1159/000316609
Sukhareva, G.E. (1927a). Die Besonderheiten der schizoiden Psychopathien bei den Mädchen. (Part 1 of 2). European Neurology, 62(3), 171—185. https://doi.org/10.1159/000166291
Sukhareva, G.E. (1927b). Die Besonderheiten der schizoiden Psychopathien bei den Mädchen. (Part 2 of 2). European Neurology, 62(3), 186—200. https://doi.org/10.1159/000323311
Swedberg, R. (2014). The art of social theory. Princeton University Press. ISBN 10 : 0691155224. ISBN 13 : 978-0691155227
Szasz, T.S. (1976). Fabriquer la folie. Payot. ISBN 10 : 2228116017. ISBN 13 : 9782228116015
Tajfel, H., Turner, J. (2001). An integrative theory of intergroup conflict. In W. G. Austin, S. Worchel (Eds.), Intergroup relations: Essential readings. pp. 94—109. Psychology Press.
Trevisan, D.A., Foss-Feig, J.H., Naples, A.J., Srihari, V., Anticevic, A., McPartland, J.C. (2020). Autism spectrum disorder and schizophrenia are better differentiated by positive symptoms than negative symptoms. Frontiers in Psychiatry, 11, Article 548. https://doi.org/10.3389/fpsyt.2020.00548
Trouw. (2021). Interview Floortje Scheepers: “Mensen zijn ingewikkeld, dus stap af van de labels in de GGZ”. https://www. trouw.nl/wetenschap/mensen-zijn-ingewikkeld-dus-stap-af-van-de-labels-in-de-ggz~b22f963a/ (viewed: 05.06.2025)
Tu, T., Anil Palepu, Schaekermann, M., Saab, K., Freyberg, J., Tanno, R., Wang, A., Li, B., Amin, M., Nenad Tomašev, Azizi, S., Singhal, K., Cheng, Y., Hou, L., Webson, A., Kulkarni, K., Mahdavi, S., Semturs, C., Juraj Gottweis, Barral, J.K. (2024). Towards Conversational Diagnostic AI. ArXiv (Cornell University). https://doi.org/10.48550/arxiv.2401.05654
Volkmar, F.R., Woodbury-Smith, M., Macari, S.L., óien, R.A. (2022). Diagnostic issues and complexities in autism and related conditions. In Differential Diagnosis of Autism Spectrum Disorder. Vol. 1-C1, pp. 144. https://doi.org/10.1093/ med-psych/9780197516881.003.0001
Waterhouse, L. (2009). Autism is a portmanteau syndrome. Neuropsychology Review, 19(2), 275—276. https://doi. org/10.1007/s11065-009-9100-7
Wing, L., Gould, J. (1979). Severe impairments of social interaction and associated abnormalities in children: Epidemiology and classification. Journal of Autism and Developmental Disorders, 9(1), 11—29. https://doi.org/10.1007/BF01531288
Wolff, S. (1996). The first account of the syndrome Asperger described? Translation of a paper entitled “Die schizoiden Psychopathien im Kindesalter” by Dr. G.E. Ssucharewa. European Child & Adolescent Psychiatry, 5(3), 119—132. https:// doi.org/10.1007/BF00571671
