CMC Interest Groups Course: The Politics of Difference and Identity: The Case of Autism

Papers due by 11:59 pm Sunday.
For Monday, ch. 3 of Cigler.
For Wed of next week, Cigler, ch. 4-5 and NYT article
Last paper assigned Monday, due May 3.

Autism illustrates three major points about interest group politics:

Changes in the perceived extent of a problem lead to changes in interest group activity.
Interest group activity on one issue may foster activity on related issues. In this case, the civil rights movement spawned the disability rights movement, which spawned the autism rights movement.
Interest group activity on any issue is often full of factionalism and conflict among groups. In the case of autism, the conflict includes death threats.

1927: The "civil libertarian" Oliver Wendell Holmes writes the majority opinion in Buck v. Bell, upholding involuntary sterilization of people with mental disabilities: We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with incompetence. It is better for all the world if, instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. Three generations of imbeciles are enough." A lawyer for Nazi war criminals would quote this line at Nuremberg.
1941-42. At the 1941 annual meeting of the American Psychiatric Association, neurologist Foster Kennedy called for the killing of children over the age of five with severe intellectual disabilities. His goal was to relieve "the utterly unfit" and "nature's mistakes" of the "agony of living"
1943: American psychiatrist Leo Kanner publishes “Autistic Disturbances of Affective Contact” (Nervous Child 2 (1943): 217-250), identifying autism as a childhood psychiatric disorder. The first autistic person that he diagnosed -- Donald Triplett ("Donald T." in the article) -- is still alive.
Hans Asperger's role
1959: Bruno Bettelheim publishes “Joey: A Mechanical Boy,” in Scientific American 200 (March 1959): 117-126. A condensed version reaches a larger audience through Reader's Digest. The article highlights the "refrigerator mother" theory.
1964: Bernard Rimland publishes Infantile Autism, a book summarizing current research and refuting Bettelheim.
1965: Psychologist Ole Ivar Lovaas develops Applied Behavior Analysis. The May 7 issue of Life gives it national publicity in “Screams, Slaps, and Love: A Surprising, Shocking Treatment Helps Far-Gone Mental Cripples.” (Rotenberg Center still uses aversives).
1965: Rimland and 60 others form the National Society for Autistic Children (NSAC), later the Autism Society of America.
1967: Bettelheim publishes The Empty Fortress, a book expanding on his theory and criticizing Rimland. Bettelheim is a celebrity who gets many more readers.
1973: Congress passes the Rehabilitation Act of 1973 (P.L. 93-112). Section 504 forbids discrimination against the handicapped "under any program or activity receiving federal financial assistance.”
1975: Congress passes the Education for All Handicapped Children Act (PL 94-142) .
1975: The Developmental Disabilities Assistance and Bill of Rights Act (P.L. 94-103) creates a "bill of rights" for persons with developmental disabilities, funds services, and establishes protection and advocacy organizations in each state. Because of lobbying by NSAC, it includes autism.
1982: The Rowley case (458 U. S. 176) narrows the scope of EAHCA.
1987: Lovaas publishes a study reporting a 47 percent recovery rate with ABA.
1988: Rain Man introduces autism to millions of moviegoers.
1990: President George H.W. Bush signs the Americans with Disabilities Act (P.L. 101-336). mandates that local, state and federal governments and programs be accessible, that businesses with more than 15 employees make "reasonable accommodations" for disabled workers, that public accommodations make "reasonable modifications.”
1990: The Individuals with Disabilities Education Act Amendments (IDEA) (P.L. 101-476) renames the Education of the Handicapped Act and reauthorizes programs under the Act to improve support services. Autism becomes a separate category in IDEA for special education.
1994: The fourth edition of the Diagnostic and Statistical Manual (DSM-IV) expands the definition of autism.
1998: Dr. Andrew Wakefield and others publish a f study in the Lancet about MMR vaccinated children diagnosed with autism spectrum disorders.
2002: Wakefield testifies before the House Government Reform and Oversight committee that there is “compelling evidence” of a link between vaccines and autism.

Children 3 to 21 years old with autism served under Individuals with Disabilities Education Act, Part B (numbers in thousands) Source: Digest of Education Statistics, various years.

Autistic children aged 3 to 21 receiving services under the Individuals with Disabilities Education Act (in thousands)