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Autism in the US: Social Movement and Legal Change Daniela Caruso Boston Univeristy School of Law

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Autism in the US: Social Movement and Legal Change Daniela Caruso Boston Univeristy School of Law Boston University School of Law Scholarly Commons at Boston University School of Law Faculty Scholarship 2010 Autism in the US: Social Movement and Legal Change Daniela Caruso Boston Univeristy School of Law Follow this and additional works at: https://scholarship.law.bu.edu/faculty_scholarship Part of the Education Law Commons Recommended Citation Daniela Caruso, Autism in the US: Social Movement and Legal Change, 36 American Journal of Law and Medicine (2010). Available at: https://scholarship.law.bu.edu/faculty_scholarship/571 This Article is brought to you for free and open access by Scholarly Commons at Boston University School of Law. It has been accepted for inclusion in Faculty Scholarship by an authorized administrator of Scholarly Commons at Boston University School of Law. For more information, please contact [email protected]. AUTISM IN THE US: SOCIAL MOVEMENT AND LEGAL CHANGE Boston University School of Law Working Paper No. 10-07 (March 23, 2010) Daniela Caruso This paper can be downloaded without charge at: http://www.bu.edu/law/faculty/scholarship/workingpapers/2010.html DANIELA CARUSO AUTISM IN THE US: SOCIAL MOVEMENT AND LEGAL CHANGE 36 AMERICAN JOURNAL OF LAW AND MEDICINE __ (2010) Abstract - The social movement surrounding autism in the US has been rightly defined a ray of light in the history of social progress. The movement is inspired by a true understanding of neuro-diversity and is capable of bringing about desirable change in political discourse. At several points along the way, however, the legal reforms prompted by the autism movement have been grafted onto preexisting patterns of inequality in the allocation of welfare, education, and medical services. In a context most recently complicated by economic recession, autism-driven change bears the mark of political and legal fragmentation. Distributively, it yields ambivalent results that have not yet received systemic attention. This article aims to fill this analytical vacuum by offering, first, a synoptic view of the several legal transformations brought about or advocated for by the autism movement and, second, a framework for investigating their distributive consequences. Professor of Law, Boston University. Thanks for insights and comments to Bill Alford, George Annas, Paulo Barrozo, Glen Cohen, Kris Collins, Fengming Cui, Michael Harper, Allison Hoffman, Duncan Kennedy, Pnina Lahav, Gillian Lester, Linda McClain, Silvio Micali, Fran Miller, Martha Minow, Abby Moncrieff, Maureen O’Rourke, Kevin Outterson, Vlad Perju, Chris Robertson, Sarah Robinson, David Rossman, Talha Sayed, Miguel Schor, Kate Silbaugh, Ken Simons, Michael Stein, Helen Tager- Flusberg, Katie Young, students and guest-lecturers in the inter-disciplinary seminar “Autism and Society” (Boston University, Spring 2009), participants in faculty workshops at the law schools of Boston University and Suffolk University, in a workshop of the Harvard Project on Disabilities, and in the conference Autism: Science, Law & Public Policy (Boston University, Spring 2009). Thanks to Aaron Schue, Daniel Devoe, Hannah Lubin, Joan Bennett, Patrick Jiang and Caroline Bruno for excellent research assistance. This work, ever in progress, is dedicated to my children, one of whom has a diagnosis of autism. Errors are mine. I. INTRODUCTION ................................................................................................................. II. AUTISM AND SOCIAL MOVEMENT ..................................................................................... A. DEFINING AND COUNTING .................................................................................................. B. IMAGES OF AUTISM ........................................................................................................... C. EVOLUTION AND SPLINTERING .......................................................................................... D. AUTISM AND DISABILITY DISCOURSE ................................................................................ III. JUDICIAL DISCOURSE: CONFLICT MANAGEMENT AND AFFIRMATION .............................. A. THE OMNIBUS AUTISM PROCEEDING ................................................................................. B. CRIME AND AUTISM .......................................................................................................... 1. EMPATHY AND MORAL AGENCY ................................................................................... 2. AUTISM AS IDENTITY ................................................................................................... C. AUTISM AND EMPLOYMENT DISCRIMINATION .................................................................... IV. THE QUEST FOR TREATMENT AND LEGAL CHANGE .......................................................... A. EDUCATION ........................................................................................................................ 1. LITIGATING AUTISM IN SCHOOL.................................................................................... 2. SCHOOL LITIGATION AND THE PROBLEM OF DISTRIBUTIVE EQUITY ............................. 3. AUTISM AND VOUCHERS ............................................................................................... 4. NORMALIZATION ........................................................................................................... B. THE HEALTH SECTOR ......................................................................................................... 1. ABA REIMBURSEMENT CLAIMS IN COURT ................................................................... 2. MANDATED BENEFITS ................................................................................................... 3. MEDICAID AND RECESSION ........................................................................................... 4. RETRENCHING ............................................................................................................... V. AN INTERIM ASSESSMENT ................................................................................................ 1 I. INTRODUCTION A 1950s masterpiece of science fiction — The Invasion of the Body Snatchers — tells the unsettling story of a town occupied by aliens. 1 Due to mysterious forces, androids take the place of real human beings.2 Semblances are identical, but souls are gone. In the last and most terrifying scene of the movie, the main character realizes that his girlfriend – his only companion in the desperate struggle to repel the invaders – is also gone.3 In her place is left an equally beautiful woman, whose eyes look elsewhere and whose voice is distant. The scene depicts solitude at its deepest. Until recently, autism prompted similarly tragic feelings.4 The diagnosis of an autism spectrum disorder meant that your baby, the person with whom you expected to have the closest possible connection in this world, would never understand why you were crying.5 The impossibility of emotional bonding, understood as central to the diagnosis, 1 INVASION OF THE BODY SNATCHERS (Walter Wanger Productions 1956). 2 Id. 3 Id. 4 See STUART MURRAY, REPRESENTING AUTISM: CULTURE, NARRATIVE, FASCINATION 209 (2008). “Like cancer, autism is often seen as a remorseless attacker of innocents, a destroyer of lives and families.” Id. See also SUSAN SONTAG, ILLNESS AS METAPHOR (1978), reprinted in SUSAN SONTAG, ILLNESS AS METAPHOR AND AIDS AND ITS METAPHORS 3, at 68 (1990). Sontag refers to the movie “Invasion of the Body Snatchers” to describe, critically, a common image of cancer in the 1970s. Id. 5 The fourth edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), now under revision, listed among the marks of autism a “lack of … emotional reciprocity,” id. at 20. See also Michael E. Waterstone & Michael Ashley Stein, Disabling Prejudice, 102 NW. U. L. REV. 1351, 1352 (2008) (reporting, critically, an instance of the common assumption that people with autism do not feel). 2 made it so heart-wrenching as to evoke science-fictional scenarios: alien invasions and snatched bodies.6 Advances in psychiatric science are proving such analogies misguided.7 Autism, while affecting one’s ability to understand others’ viewpoints,8 leaves ample room for shared emotions. 9 Accordingly, many commentators have opposed the portrayal of autism as a catastrophe10 or as a condition that is not fully human.11 But the metaphor of 6 ROY RICHARD GRINKER, UNSTRANGE MINDS: REMAPPING THE WORLD OF AUTISM 5 (2007) (noting that the talk of an “autism epidemic” “implies danger and incites fear, calling up associations with plagues that can sweep through the streets . threatening the ones you love. With autism, the label of “epidemic” sounds both frightening and tragic.”). 7 The fifth edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM), currently in draft form, refers to “lack of social reciprocity” but no longer lists deficits in “emotional reciprocity” among the diagnostic criteria for autism. DSM-5 Proposed Revisions, 299.00 Autistic Disorder, http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94. 8 A prevailing theory of the primary deficits of autism is the “Theory of Mind” thesis, which holds that autism results in a failure to recognize intentional states of others. See DEBORAH R. BARNBAUM, THE ETHICS OF AUTISM: AMONG THEM, BUT NOT OF THEM 19, 21 (2008). 9 Jim Sinclair, Don’t Mourn for Us, OUR VOICE (Autism Network Int’l, Syracuse,
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