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Tuesday, November 27, 2012

The Interest Group Politics of Autism

Autism illustrates three major points about interest group politics:
  1. Changes in the perceived extent of a problem lead to changes in interest group activity.
  2. 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.
  3. 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.
 The "Early History" of Autism
  • 1943:  American psychiatrist Leo Kanner publishes “Autistic Disturbances of Affective Contact(Nervous Child 2 (1943): 217-250), identifying autism as a childhood psychiatric disorder.
  • 1948:  In another article, Kanner says that autistic children “were kept neatly in refrigerators which did not defrost.”  Time popularizes the idea in an article titled "Frosted Children."
  • 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 gains even more attention for the "refrigerator mother" theory.
  • 1960:  Armstrong Circle Theater presents “The HiddenWorld,” a highly favorable dramatization of Bettelheim's work, with actor Peter von Zerneck portraying Bettelheim.
  • 1964:  Bernard Rimland publishes Infantile Autism, a book summarizing current research and refuting the "refrigerator mother" theory.
  • 1965: Psychologist Ole Ivar Lovaas develops the 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.”
  • 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.
The Disability Rights Movement and the Law
  • 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.” See chapter 4 of Fleischer and Zames.
  • 1975: Congress passes the Education of All Handicapped Children Act (PL 94-142) requiring free, appropriate public education in the least restrictive setting.  The law later gets the more familiar name of the Individuals with Disabilities Education Act.  See chapter 11 of Flesicher and Zames.
  • 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. See p. 189 of Fleischer and Zames. 
  • 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.” See chapter 6 of Fleischer and Zames.
  • 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 controversial study in the Lancet about MMR vaccinated children diagnosed with autism spectrum disorders.
  • 2000:  President Clinton signs the Children's Health Act, founding an autism research coordinating committee.
  • 2002: Wakefield tells the House Government Reform and Oversight committee that there is “compelling evidence” of a link between vaccines and autism, even though studies have already discredited his research.
Autism Takes Off

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.





The Interest Group Universe

Peak Associations
Anti-Vaccine Activists
Pro-Science Groups
Self-Advocates
Professional Organizations

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