Lobbying Autism’s Diagnostic Revision in the DSM-5

Abstract

From 2009 to 2012, the Autistic Self Advocacy Network (ASAN) advocated to influence the DSM-5’s revision of the diagnostic criteria for autism. ASAN succeeded in substantially influencing the final criteria and accompanying text. It worked to address community concerns that the apparent narrowing of diagnostic criteria might “miss” autistic people while nonetheless supporting the shift to a unified autism diagnosis. The historic activism took place through both public and private communications with the workgroup. ASAN achieved significant partial successes in protecting access to diagnosis, addressing disparities in diagnosis for marginalized groups, and blocking harmful proposals. Nonetheless, the lack of formal autistic representation within the process limited ASAN’s impact, leading to criteria that are likely still too narrow and a problematic severity scale.