The autism "epidemic" Ethical, legal, and social issues in a developmental spectrum disorder

被引:29
作者
Graf, William D. [1 ,2 ]
Miller, Geoffrey [3 ]
Epstein, Leon G. [4 ]
Rapin, Isabelle [5 ]
机构
[1] Connecticut Childrens Med Ctr, Div Neurol, Dept Pediat, Farmington, CT 06032 USA
[2] Univ Connecticut, Farmington, CT 06030 USA
[3] Yale Univ, Sch Med, Dept Pediat, New Haven, CT 06510 USA
[4] Northwestern Univ, Feinberg Sch Med, Dept Pediat, Chicago, IL 60611 USA
[5] Albert Einstein Coll Med, Saul R Korey Dept Neurol, Dept Pediat, Rose F Kennedy Ctr Res Intellectual & Dev Disabil, Bronx, NY 10467 USA
关键词
DISABILITIES MONITORING NETWORK; DIAGNOSTIC SUBSTITUTION; PREVALENCE; CHILDREN; RISK; CLASSIFICATION; IDENTIFICATION; INTERVENTION; MORBIDITY; SUBTYPES;
D O I
10.1212/WNL.0000000000003791
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
Classic autism has gradually evolved into the concept of a larger "spectrum disorder." The rising prevalence of autism and autism spectrum disorder (autism/ASD) diagnoses can be largely attributed to broader diagnostic criteria, adoption of dimensional assessment strategies, increased awareness, linking of services to diagnosis, and the inclusion of milder neurodevelopmental differences bordering on normality. The spectrum disorder diagnosis raises numerous bioethical issues for individuals and society. Three groups of caregivers have important ethical, legal, and social obligations to individuals with autism/ASD: (1) families and advocates of individuals with autism/ASD; (2) health care and other professionals; and (3) governments. Each group may have different views of autism/ASD diagnostic criteria, screening, testing, and the effectiveness of various interventions. All see timely diagnosis as desirable, but earlier diagnosis may not be better, morally or practically. The growing practice of genetic testing in milder ASD raises ethical questions because of its uncertain scientific validity and limited clinical utility. Individuals with autism/ASD have various kinds of needs but all want acceptance and most deserve better accommodations. Governments struggle to provide a fair allocation of appropriate special education and supportive services. This article examines the evolving dimensions of the autism/ASD diagnosis, outlines certain bioethics principles related to its evaluation and management, reviews relevant laws and disability rights, and emphasizes the societal obligation to recognize neurodevelopmental variation and human neurodiversity. Future directions in the evaluation and care of autism/ASD should attempt to integrate the roles and responsibilities of all agents caring for each unique autistic individual.
引用
收藏
页码:1371 / 1380
页数:10
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