Lobbying autism’s diagnostic revision in the DSM-5

Added on 19/12/2024

Type de contenu

Book chapter of the type Perspective ( ; english)

Steven Kapp * , Ari Ne’eman *
Lobbying autism’s diagnostic revision in the DSM-5 , published in: Autistic community and the neurodiversity movement: Stories from the frontline 28 pages , doi: 10.1007/978-981-13-8437-0_13

*All co-authors had publicly identified as autistic. [Learn more about this mention]

Summary/Presentation

[First lines]
Defining the boundaries of autism has always been a complex task, shaped by a wide variety of scientific, social, political, and economic factors. Those boundaries shape the lives of autistic people, influencing not only who gets diagnosed but often providing significant and important context to clinical decisions about service provision and “treatment” along with setting the stage for lifelong diagnostic and service disparities on the basis of gender, race, class, and age.
Because autistic people are shaped by the diagnostic process, one of the Autistic Self Advocacy Network’s priorities—as the leading organization run by and for autistic people—was to shape that process in return. We sought to do this with a variety of goals in mind: to address existing diagnostic disparities, improve access to service provision where diagnostic distinctions interfered, and to prevent a loss in access to legal protections, social legitimacy, and service provision by the narrowing of the diagnosis. While the Neurodevelopmental Disorders Workgroup charged with revising the autism diagnosis in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5; American Psychiatric Association [1]) consisted of researchers who conducted analyses and whose decisions received reviews from academic scholars [2], the process was still a political one, subject to efforts to influence the outcome. As a representative acknowledged, “This is not science – this is a committee” [3]. Furthermore, we maintain that the scientific and research processes are framed and mediated by larger social and political ones, and thus that dedicated advocacy and lobbying could influence the resulting diagnosis. In this, we were absolutely correct.
ASAN’s advocacy work regarding the DSM-5 was led by the two authors, Ari Ne’eman (ASAN’s co-founder and then President) and Dr. Steven K. Kapp (then a doctoral student at the University of California, Los Angeles and ASAN chapter Co-Director). While the organization was pursuing political and policy goals, we sought to ensure that ASAN’s advocacy would be well-grounded in the research literature so as to maximize the likelihood of success and ensure the organization’s credibility.

For your information:

(1) References in blue are resources listed on our site.

(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site.

(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.

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  • M. Mazurek, F. Lu, E. Macklin, B. Handen (2019). "Factors associated with DSM-5 severity level ratings for autism spectrum disorder". Autism 23. doi:10.1177/1362361318755318

  • M. Mazurek, F. Lu, H. Symecko, E. Butter, N. Bing, R. Hundley, M. Poulsen, S. Kanne, E. Macklin, B. Handen (2017). "A Prospective Study of the Concordance of DSM-IV and DSM-5 Diagnostic Criteria for Autism Spectrum Disorder". Journal of Autism and Developmental Disorders 47. doi:10.1007/s10803-017-3200-7

  • M. Mehling, M. Tassé (2016). "Severity of Autism Spectrum Disorders: Current Conceptualization, and Transition to DSM-5". Journal of Autism and Developmental Disorders 46. doi:10.1007/s10803-016-2731-7

  • M. Moore (2014). "On The Spectrum: Autistics, Functioning, and Care". (Doctoral dissertation, UC Santa Cruz)

  • N. Mukaddes, T. Mutluer, B. Ayik, A. Umut (2017). "What happens to children who move off the autism spectrum? Clinical follow‐up study". Pediatrics International 59. doi:10.1111/ped.13202

  • A. Ne'eman*, S. Kapp* (2012). "What are the stakes? An analysis of the impact of the DSM-5 draft autism criteria on law, policy and service provision". Washington, DC: Autistic Self Advocacy Network.

  • M. Olsson, J. Westerlund, S. Lundström, M. Giacobini, E. Fernell, C. Gillberg (2015). "'Recovery' from the diagnosis of autism – and then?". Neuropsychiatric Disease and Treatment 11. doi:10.2147/ndt.s78707

  • S. Swedo, G. Baird, E. Cook, F. Happé, J. Harris, W. Kaufmann, B. King, C. Lord, J. Piven, S. Rogers, S. Spence, A. Wetherby, H. Wright (2012). "Commentary from the DSM-5 Workgroup on Neurodevelopmental Disorders.". Journal of the American Academy of Child and Adolescent Psychiatry doi:10.1016/j.jaac.2012.02.013

  • A. Weitlauf, K. Gotham, A. Vehorn, Z. Warren (2014). "Brief Report: DSM-5 'Levels of Support:' A Comment on Discrepant Conceptualizations of Severity in ASD". Journal of Autism and Developmental Disorders 44. doi:10.1007/s10803-013-1882-z

  • C. Wilson, N. Gillan, D. Spain, D. Robertson, G. Roberts, C. Murphy, S. Maltezos, J. Zinkstok, K. Johnston, C. Dardani, C. Ohlsen, P. Deeley, M. Craig, M. Mendez, F. Happé, D. Murphy (2013). "Comparison of ICD-10R, DSM-IV-TR and DSM-5 in an Adult Autism Spectrum Disorder Diagnostic Clinic". Journal of Autism and Developmental Disorders 43. doi:10.1007/s10803-013-1799-6

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