Autism is the term commonly used to refer to autism spectrum disorders, a group of neurodevelopmental disorders involving sensory processing problems and social and language difficulties. According to the National Institute of Mental Health (NIMH), the exact prevalence of autism is unknown. Estimates range from 1 person in 500 to 1 in 1,000 in this country; and the number of people diagnosed with autism is growing. This article assesses the policy implications of the autism “epidemic.” It begins with an overview of the disability policy—making process in the United States and its implications for autism policy and proceeds to a discussion of the social construction of autism as a policy issue. This is followed by an analysis of federal and state governments' institutional capacity to respond to the autism epidemic.
Get full access to this article
View all access options for this article.
References
1.
Aetna. (2003). Coverage policy bulletin Number 0648. Retrieved July 11, 2003, from http://www.aetna.com/cpb/data/CPBA0648.html
2.
Aman, M.G., Lam, K.S.L., & Collier-Crespin, A. (2003). Prevalence and patterns of use of psychoactive medicines among individuals with autism in the Autism Society of Ohio. Journal of Autism and Developmental Disorders , 33(5), 527—534.
3.
American Academy of Pediatrics. (2001). The pediatrician's role in the diagnosis and management of autistic spectrum disorder in children. Pediatrics, 107(5), 1221—1226.
4.
American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author.
5.
Americans with Disabilities Act of 1990, Public Law101-336.
6.
Bacchi, C. (1999). Women, policy and politics. London: Sage.
7.
Burton to chair subcommittee on human rights and wellness. (2003). Retrieved July 2, 2003, from http://www.house.gov/burton/pr21303.htm
8.
Center for Responsive Politics. (2002). Donor lookup. Retrieved December 23, 2002, from http://www.opensecrets.org/alerts/v6/alertv6_70.asp .
9.
Children's health laws. (2001). Environmental Health Perspectives , 109(6), A271—A273.
10.
Committee on Government Reform. (2003). Retrieved January 10, 2003, from http://www.house.gov/reform/pr.02.12.06.htm
11.
Could new changes be on the horizon for managing autism? (2000). The Brown University Child and Adolescent Behavior Letter, 17, 1—4.
12.
Courchesne, E., Carper, R., & Akshoomoff, N. (2003). Evidence of brain overgrowth in the first year of life in autism. Journal of theAmerican Medical Association, 290, 337—344.
13.
Crabb, C., Antizzo, G., & Sarieddine, L. (2000). Congress and the foreign policy process: Modes of legislative behavior. Baton Rouge : Louisiana University Press.
14.
The doctor as dealmaker? (2002). Retrieved December 25, 2002, from http://www.pnhp.org/news/2002
Feinberg, E., & Vacca, J. (2000). The drama and trauma of creating policies on autism: Critical issues to consider in the new millennium. Focus on Autism and Other Developmental Disabilities, 15(3), 130—137.
17.
GAO (1996). Medicaid waiver program for developmentally disabled is promising but poses some risks. GAO/HEHS, 96—120.
18.
Golden Rule. (2003). Retrieved July 17, 2003, from http://www.goldenrule .com/commoncomponents/Govrela/popnewmandates.shtml
19.
Gross, J. (2004, January 30). As autism cases rise, parents run frenzied maze to get help. New York Times, p. A1.
20.
Harris, J. (2000). Is there a coherent social conception of disability? Journal of MedicalEthics, 26(2), 95—100.
21.
Havassy, B., Alvidrez, J., & Owen, K. (2004). Comparisons of patients with comorbid psychiatric and substance use disorders: Implications for treatment and service delivery . The American Journal of Psychiatry,161(1), 139—145.
22.
Homeland Security Act of 2002, Public Law107-296.
23.
Huffington,A. (2002). Findingthe answer to Washington's hottest whodunit. Retrieved December 5, 2002, from http://www.tms.tribune.com/htmlmail /commentators/articles/1205Huffington.htm
24.
Lee, P., & Estes, C. (Eds.). (2003). The nation's health. Sudbury, MA: Jones and Bartlett.
25.
Madsen, K.M., Hvid, A., Vestergaard, M., Schendel, D., Wolhfahrt, J., Thorsen, P., et al. (2002). A population-based study of measles, mumps, and rubella vaccination and autism. The New England Journal of Medicine, 347(19), 1477—1482.
26.
McCombs, M. (1997). Building consensus: The news media's agenda-setting roles. Political Communication, 14, 433—443.
27.
McCracken, J.T., McGough, J., Shah, B., Cronin, P., Hong, D., Aman, M.G., et al. (2002). Risperidone in children with autism and serious behavioral problems. The New England Journal of Medicine , 347, 314—321.
28.
Mental Health Parity Act of 1996, Public Law104-204.
29.
National Alliance for the Mentally Ill. (2003). State mental illness parity laws. Retrieved July 15, 2003, from http://www.nami.org/policy /stateparitychart.html
30.
National Conference of State Legislatures. (2003). Managed care and mandated coverage. Retrieved July 17, 2003, from http://www.ncsl.org /programs/health/mcmandates.htm
31.
National Institute of Mental Health. (2003). Unraveling autism. Retrieved July 18, 2003, from http://www.nimh.nih.gov/publicat/unravel.cfm
32.
National Mental Health Association. (2004). It is time to pass comprehensive health insurance parity. Retrieved March 31, 2004, from http://www .nmha.org/state/parity/index.cfm
33.
Newer antipsychotic medication helps curb some of the behavioral problems associated with autism. (2002). Retrieved February 12, 2004, from http://www.yale.edu/opa/v31.n.3/story11.html
34.
Percy, S.L. (2001). Challenges and dilemmas in implementing the Americans with Disabilities Act: Lessons from the first decade. Policy Studies Journal, 29(4), 633—641.
35.
Pericak-Vance, M.A. (2003). Discovering the genetics of autism. USA Today Magazine, 131(2692), 56.
36.
Personnel development grants serve students with autism. (2003). Retrieved February24, 2004, from http://www.cenmi.org/LeadingChange/2003_05 /2003_05_article16.1sp
37.
Pfeiffer, D. (1993). Overview of the disability movement: History, legislative record, and political implications. Policy Studies Journal: The Journal of the Policy Studies Organization, 21(4), 724—734.
38.
Rehabilitation Act of 1973, Public Law93-112.
39.
Ronder, R., Kastner, T., Parker, S., & Walsh, K. (1999). Serving people with developmental disabilities in medicaid managed care. Managed Care Quarterly, 7(2), 23—30.
40.
Scotch, R.K. (2002). Paradigms of American social research on disability: What's new?Disability Studies Quarterly, 22(2), 23—34.
41.
Senator Paul Wellstone Mental Health Equitable Treatment Act, H.R.953, S. 486
42.
Sheehan, S. (2003). The autism fight. New Yorker, 99, 76—87.
43.
Simpson, R. (2003). Policy-related research issues and perspectives. Focus on Autism and Other Developmental Disabilities, 18(3), 192—196 .
44.
Smith, M.D., & Juhrs, P. (2004). Achieving and maintaining community integrated employment for persons severely disabled by autism. Retrieved February 24, 2004 , from http://www.csaac.org/pub-achv.htm
45.
Stone, D.A. (2001). Causal stories and the formation of policy agendas . Political Science Quarterly, 104(2), 281—300.
46.
Switzer, J.V. (1994). Environmental politics: Domestic and global dimensions . New York: St. Martin's Press .
47.
Switzer, J.V. (2001). The Americans with Disabilities Act: Ten years later. Policy Studies Journal: The Journal of the Policy Studies Organization, 29(4), 629—632.
48.
Teays, W., & Purdy, L. (Eds.). (2001). Bioethics, justice, and health care. Belmont, CA: Wadsworth/Thomson Learning.
49.
What is hyperlexia? (2004). Retrieved March 31,2004, from http://www .hyperlexia.org
50.
Yeargin-Allsopp, M., Rice, C., Karapurkar, T., Doernbery, N., Boyle, C., & Murphy, C. (2003). Prevalence of autism in a US metropolitan area. Journal of theAmerican Medical Association, 289(1), 49—55.
51.
Yell, M., & Katsiyannis, A. (2003). Critical issues and trends in the education of students with autism spectrum disorders: Introduction to the special issue. Focus on Autism and Other Developmental Disorders, 18(3), 138—139.
