American Journal of Law & Medicine

Autism in the U.S.: social movement and legal change.

Abstract--The social movement surrounding autism in the U.S. 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.


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, once understood as central to the diagnosis, 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 catastrophe (10) or as a condition that is not fully human. (11) But the metaphor of alien invasion has an enduring grip on collective consciousness (12) and survives in popular accounts as well as personal narratives. (13)

Tragic tropes are not the only source of autism's importance in public discourse. In contrast to the image of invasion is another, equally important picture, which is utterly peaceful and inspiring. In his pioneering work, Austrian psychiatrist Leo Kanner gave an aesthetic dimension to the diagnosis of autism by noticing how beautiful his patients often were. (14) His casual remarks originated the belief that beauty, talent for music, and graceful movements were normal complements to the autistic child's fascination with himself. (15) Autism is also quite prevalent in Silicon Valley, and according to some it runs in families of great musicians and mathematicians. (16) Part of its appeal rests upon the belief that it is home to genius, and that each of us would benefit from having bits of it: extraordinary ability to focus, untrammeled concentration, or perception of patterns that escape everyone else. In this light, autism sits comfortably on a spectrum that comprises the entire human condition, not just a subset of it. It replaces the old and ugly label of mental retardation with something that is both terrifying and terrific, a mental condition that is incapacitating and yet flirts irresistibly with genius. (17)

Susan Sontag argues effectively that metaphors may vilify suffering and ultimately impede a rational, purposeful approach to the reality of pathology. (18) On the other hand, Sontag herself lays the ground for understanding the tremendous cognitive salience of metaphors, and the massive mobilization of resources that images of illness may prompt. (19) Autism's unusual combination of conceptually opposite but equally powerful images--terror and innocence, incapacity and genius, handicap and excellence--has already impacted the legal system in multiple ways and is likely to do more so in the coming decades.

Autism is transforming the way we think about disability; it is affecting the balance between medical insurance coverage and educational services; it is creating new markets that beg for regulatory intervention; it is challenging traditional assumptions about retribution and punishment; it is prompting a massive investment of public and private resources; it is changing the aesthetics of suffering, and in so doing, it is rearranging legislative priorities. These pages are devoted, in the first place, to setting the stage for studying this phenomenon. And if indeed it is the case that autism has warped law as we have known it, then it is time to ask what the law of autism reveals about the nature of our legal system as a whole. Changes have been occurring in multiple and often unrelated sectors of the legal system, prompted at times by collective deliberation and, at other times, by mere political contingencies. The field needs mapping, cross-references and conceptualization. (20) What follows is an attempt in the first place to correct the fragmentation of the autism picture by bringing together its many pieces.

A further goal of this essay is to focus on the distributive implications of granting autism special recognition at law. From the viewpoint of Richard Roy Grinker, anthropologist and parent of a child with autism, the story of autism in the U.S. legal system at the dawn of the new millennium is one of great egalitarian momentum. In his view,

   the newer, higher, more accurate statistics on autism are a sign
   that we are finally seeing and appreciating a kind of human
   difference that we once turned away from[.] The result of the new
   rates is that we are fortunately seeing more research, more
   philanthropy, and more understanding of how families struggle to
   cope. (21)

In the same vein, philosopher Ian Hacking refers to the increasing integration of autistic people in society as "a very substantial human achievement" and asserts that "the social history of this progress is a promising tale of hard work, a ray of light." (22)

Indeed, at several points in the following pages, we shall see how autism lends strength to truly progressive claims, directing resources to the neediest pockets of our society. Advocates' tireless quest for pediatric screening, aimed at identifying developmental disabilities as early as possible in children of all social backgrounds, is a most vivid instantiation of the movement's redistributive strength. (23) At a more general level, autism can be credited with a veritable advancement in the understanding of difference. (24) Since the spectrum of autistic disorders is ample enough to include persons of high accomplishment, the line between the ill other and the healthy self is blurred. The very concept of cognitive impairment dissipates, leaving in its place a vision of a more advanced society, where human beings are allowed to flourish for who they are and are helped to reach their potential without preconceptions. (25) The post-modern concept of neuro-diversity, with its promise of inclusion and its philosophical acceptance of variation, may find in autism a perfect home. This is indeed a ray of light.

But a comprehensive reading of the "social history of this progress" reveals a more nuanced and multi-layered scenario--one in which the body of policy-making generated by the autism movement oscillates uncomfortably, at times pursuing broader redistributive objectives, and at other times retrenching by necessity behind narrower advocacy goals. Some of the sociolegal transformations advocated for by the movement are symptoms of a higher commitment to inclusion of traditionally marginalized individuals and groups. Other changes fail to yield adequate redistribution even within the pool of children on the autism spectrum. Autism's call for difficult policy choices and intelligent allocation of finite resources bears the marks of this distributive ambiguity.

Towards the dual goal of this article--mapping autism onto the legal system and highlighting the distributive implications of autism-driven changes in law and policy--Part II analyzes the birth and growth of the autism social movement, investigates the reasons for its relative success, and explores its internal dynamics. Part III analyzes conflicts among the various strands of the movements through the lens of judicial opinions in matters of torts, crimes, and ADA claims. The discussion of a few recent cases is meant to highlight the role played by courts in reinforcing the visibility of the movement and in articulating its often conflicting goals.

Part IV delves into the fields of education law and health care reform, both of which are politically hot terrains where the battle for autism-specific benefits is being fought. Here, the autism movement interacts with underlying political dynamics and is significantly affected by market forces. I track the particular flow of money generated by the phenomenology of autism in the U.S., including funding of research and treatment, investment in special education, legislative regulation of health insurance, and market responses to the rise of autism rates.

Part V provides an assessment of the legal and judicial developments surveyed in Parts II to IV, commenting on ongoing policy shifts and on the trends which the autism movement is setting in motion or simply reinforcing. These pages offer no single policy proposal, no univocal solution to the distributive dilemmas raised by autism in matters of education, health, and welfare law, research funding, and societal inclusion of diversity. This is rather a plea for a broader and deeper reflection on the legal and political meaning of autism advocacy. Autism is here to stay for the medium or long term, and if we fail to understand the way it marbles our legal system, we will ultimately hurt its cause. Without panoramic analysis, autism may fall prey to the cycle of embrace and rejection that has historically characterized the American approach to mental illness. (26) It may become, at best, an area of true care and understanding, but one that nests distributive inequalities among individuals with autism, or that legitimizes the neglect of other miseries. Dissecting the "ray of light" and critically exploring its reach may be the only way to keep it shining.


This Part sketches the story of the autism movement with an eye to its impact on law making, both in court and in the legislative arena. (27) Autism emerged as a distinct psychiatric phenomenon in the 1940s and has since acquired much cognitive salience. (28) The movement's growth into an established center of advocacy has brought about its splintering into subgroups, each marked by a distinct agenda. Unsurprisingly, courts have been vehicles of articulation for such multiple viewpoints and, by giving them voice, have prevented their splintering away from the movement.


An article written by Dr. Leo Kanner of the Johns Hopkins Hospital in 1943 marks the birth of autism in the world of psychiatry. (29) Kanner used the label 'infantile autism' to describe an unusual psychiatric syndrome, characterized by an inability to relate to people, a failure to develop speech or an abnormal use of language, deviant responses to environmental objects and events, excellent rote memory, and an obsession with repetition and sameness. (30)

Hans Asperger, like Kanner, was born in Austria and wrote his seminal contribution to the understanding of autism spectrum disorders in the mid 1940s. (31) His take on autism, however, was different. He focused on the most high-functioning end of the spectrum and observed that certain individuals, while lacking common intuition, empathy, and flexibility, were capable of turning their difficulties into gifts, their obsessions into skills, and their perseveration into talent. Asperger's work, written in German, remained unknown to most for several decades, but was translated into English in the early 1990s and quickly gained popularity among autism researchers and activists. (32)

Not everyone agrees that autism and Asperger's Syndrome are manifestations of the same pathology (differing in degree but not in substance). (33) While severe autism is completely incapacitating, individuals with Asperger's Syndrome can be well integrated in their community, and oftentimes make fundamental contributions in their professional fields. Postmortem diagnoses are doubtful, but Albert Einstein's life story, which begins with tales of delayed speech and abysmal performance at school, suggests that the most accomplished scientist of all time might have suffered from Asperger-like symptoms. (34) Yet, severe autism and Asperger's Syndrome remain closely linked in popular and political discourse, and scientists are increasingly inclined to subsume both under a common spectrum of disorders (ASD). (35) The figures illustrating both incidence and prevalence of autism are alarming. Whether or not autism qualifies as an epidemic, (36) numbers are unsettling: today, one in 110 children in the U.S. have a diagnosis of ASD. (37)

Such figures, however, are aggregate, while a diagnosis of autism can mean a number of different things. Autism is an undefined and variable cluster of multiple symptoms: cognitive, communicative, and sensory. (38) Individuals identified as autistic may suffer acutely from some symptoms and mildly from others, so that it is very hard to know where to place them along the spectrum. The movement draws strength from all camps, including those of parents who have been waiting for years for their children's first words, and parents who demand extra care for their academically talented but socially impaired adolescents.

Gauging the relative prevalence of autism in any given ethnicity is also a difficult task. (39) There is no blood test or genetic marker for autism, (40) and diagnoses are based only on neuro-psychological tests and clinical observations. Defining a person as more or less neuro-typical is a function of both lay and medical culture, and cultural variations are so extreme as to escape modeling. (41) The shape and structure of the autism movement are heavily impacted by the still nebulous and impressionistic definition of autistic disorders.


Kanner's 'discovery' became an object of great interest for psychoanalysts. Kanner's work blamed "refrigerator mothers," women incapable of bonding with their babies and teaching them the basics of empathy. (42) Through the later work of child psychologist Bruno Bettelheim, Kanner's theory became popular and remained unchallenged through the mid-60s. (43) Another reading of the syndrome came from the myth of Narcissus, used in psychology to describe self-absorbed personalities whose overgrown egos interfere with relational abilities. (44) This approach did not emphasize poor parenting, but it did continue to analyze autism within the boundaries of psychoanalysis. It was only in 1964 that Bernard Rimland put forth an alternative explanation of the syndrome, based not on psychodynamics but rather on neurobiology. (45) In 1965, Rimland founded the American Society for Autism (ASA) which is, to this day, a major center of advocacy.

Following Rimland's work, activism in the name of autism began to flourish thanks to both grassroots efforts and power houses. Some groups, most visibly Cure Autism Now (CAN) and the National Alliance for Autism Research (NAAR), coalesced around genetic research and investigation of toxic substances potentially related to the surge of autism. (46) It is no coincidence that such movements emerged in a context of burgeoning environmental activism. (47) Many other capillary initiatives focused instead on the reality of living with autism by developing information centers for parents of newly diagnosed children and by starting awareness campaigns aimed at educating the public about this poorly-understood phenomenon. (48)

Today, the core of the autism movement is characterized by the presence of large organizations such as ASA and Autism Speaks. (49) The former retains with pride its "senior" status. (50) The latter, Autism Speaks, was founded in 2005 and later merged with both CAN and the NAAR to become "the nation's largest autism advocacy organization." (51) Within Autism Speaks, divergences have arisen around the issue of vaccines-related research. (52) As the organization leans towards supporting further investigation of this issue, other groups take distance from it and promote markedly different lines of scientific queries. (53)

The strategy of Autism Speaks is one of broad information and mobilization. (54) Walks for autism, organized both nationally and locally, help generate awareness, and also bring meaningful subsidies to the cause. Until recently, funding for autism lagged behind when compared to other disabling conditions. (55) Today, donations to the cause are pouring in, and several celebrities are involved in very effective fund-raising. (56) Predictably, "political contingency and the vagaries of fashion" also contribute to the relative success of the autism movement. (57) The fact that media moguls have become personally involved in autism matters certainly has helped the cause. (58) The movement, once peripheral and radical in tone, has now espoused stable organizational models and achieved main-stream status. (59)

Most recently, activists have adopted the language of civil rights. (60) Rhetorically, the move functions to link the autism movement to an old tradition of political activism, aimed at granting oppressed minorities legal status and entitlements. (61) The goal is then one of resource mobilization, which requires working "side by side--sometimes in competition, sometimes in collaboration--with traditional political institutions." (62)

Steeped in economic utility and rights discourse, the movement has been able to make important strides in matters of federal funding for research and treatment options. The Children's Health Act of 2000 (Health Act), (63) its first tangible victory at the federal level, directed federal agencies to undertake a long-term national study of children's health and development as related to environmental exposures. The Health Act explicitly identified autism as a major target of research; (64) CAN's advocacy was instrumental to its passage. (65) The 2006 Combating Autism Act (CAA) was an even more momentous achievement (66) as it focused on autism only. The CAA provided for approximately $950 million in spending on autism over five years, divided among research and other programs, and was subsequently funded accordingly. (67) The new administration is on the same track. In President Obama's 2011 budget proposal, overall federal research and development funding is set to decline slightly from 2010 levels, but funding for autism research is actually set to increase. (68) In addition, the U.S. Department of Defense has established its own Autism Research Program. (69) The involvement of the Department of Defense curiously highlights the military emergency mode that pervades the dominant strand of the autism social movement. The force of the autism movement is, in relative terms, remarkable. (70)


When a social movement embraces the rhetoric of civil rights, or when, in Janet Halley's words, a movement starts to rely on "race-like arguments," issues of identity are bound to arise. (71) Autism can be and has been defined as a closed class, a finite set of human beings possessing immutable characteristics. (72) Clear advantages to this strategy are the strength of the group's claim to equality, the resonance of large numbers, and the power of well-oiled argumentation. The drawback is the emergence of a stereotype that is not intrinsically negative and may well be poetic and romanticized, but is nonetheless undesirable for two reasons. First, it does not do justice to all those on the autistic spectrum who feel misrepresented by the dominant image of the syndrome. Second, it locks in the idea that autistic individuals are different from the rest of humanity. (73) Campaigning in the name of a group brings the group to life as a "discrete and insular" entity. (74) Activism creates difference at the same time as it calls for sameness at law. (75)

With the promise of special recognition and ad-hoc entitlements comes disagreement within the autism movement. (76) At one extreme end of the spectrum of opinions one finds the "neuro-diversity" or "autism rights" camp, where autism simply is not an illness, and where the very idea of cure is an assault on identity. (77) First epitomized by Jim Sinclair's "don't mourn for us" message, (78) this group deems the attempt to cure autism by means of behavioral intervention as hideous as the 1960s psychiatric treatment of homosexuality. (79) Several websites espouse this view, which is of particular appeal to individuals on the milder end of the autism spectrum. (80) In a way that closely resembles the plea of deaf-culture advocates, self-identified bearers of autism spectrum disorders demand acceptance and even admiration for autism's most appealing traits, which range from savant-like musicality to a philosophical detachment from most mundane matters. (81)

The relation between the movement's core and this increasingly established neuro-diversity group is uncomfortable. It is now generally accepted that it is important to let persons with disabilities speak with their own voice. The Interagency Autism Coordinating Committee (IACC), established in 2000 and further empowered by the Combat Autism Act of 2006, includes among its members two adults with autism spectrum disorders. (82) But when members of the neuro-diversity group undermine the value of treatments and of research aimed at eradicating autism, the rest of the movement distances itself from this strand. (83) The critique of behavioral interventions and the downplaying of autism's tragedy find no room in the manifesto of the movement's large base.

At the other end of the movement are activists invested in challenging the findings of established science and in pushing autism research beyond its currently dominant parameters. (84) Among its most vocal expressions are the on-line publication "Age of Autism" (85) and the organization "Generation Rescue." (86) These advocates stress that we are in the presence of an organic illness of epidemic proportions and vehemently disagree with those who portray autism in lighter tones. (87) In this camp, the focus is on autism as a biomedical (as opposed to psychogenic, psychiatric or behavioral) condition, a source of deep physical and mental suffering whose cause must be eradicated. Vaccines, mercury, and other man-made poisons are the main suspects. (88) Currently, this is the most militant strand of the movement. (89) It blames the medical establishment for too quickly dismissing the hypothesis of a causal link between autism and vaccines, and openly accuses researchers of colluding with the pharmaceutical industry. (90) In this camp, detoxifying diets and 'natural' remedies, which include nutritional supplements, are judged favorably. (91) By contrast, psychiatric drugs are labeled as band-aid solutions that only mask underlying biomedical problems. (92)

At times, very vocal fights have occurred between anti-vaccine (or antitoxins) advocates and other strands of the movement." (93) This splintering, potentially fatal to the movement, has not yet undermined the larger mission of autism advocacy. The two extreme approaches--anti-vaccine and neurodiversity--do not engage each other directly. In fact, they have so little in common that they seem to be talking about different phenomena altogether, and they may well be. As a result, their profound philosophical disagreements have not managed to shake the foundations of the movement's core. In a way, their forceful interventions in the forum of public opinion serve the mainstream cause of keeping autism in the spotlight and yield paradoxical synergies. The core of the autism movement remains, as a result, sufficiently broad-based to bring about legal change. The power of initiative and money allies with the despair of families struck by autism, with a primitive fear of epidemics, with the promise of a window into the mysteries of the brain, and with the aesthetic appeal of extraordinary minds, to produce a model of 21st-century activism.


Taken at face value, the extreme strands of the autism movement might seem to mirror the nature/culture divide that we observe in general disability discourse. In the nature camp, just as within the "cure" fringe of autism activism, the emphasis is on impairment: the physical or mental difference that justifies differential treatment in fact and at law. Difference is "medicalized" and conceived of as pathology. (94) The culture camp of disability advocacy, by contrast, de-emphasizes the biological impairment, celebrates diversity, and attacks the very idea of disability as a purely social construction. (95) The implication of the latter viewpoint is that the impairment, e.g., the inability to walk, would no longer be a disability if society were ready to replace stairs with ramps. (96) As observed, the neuro-diversity strand of the autism movement, which is mostly made of self-identified autistic adults, embraces this viewpoint entirely.

Of course, the discourse on disability can hardly be reduced to such dichotomies and the social model, while prevalent, is laden with internal contradictions. (97) In general, the nature/culture (or biology/society) divide does not map well onto the field of cognitive impairment. (98) Intellectual disability advocates have actually struggled to emphasize, rather than downplay, the biological root of what could otherwise be perceived as despicable behavior. (99) As observed above, at the origin of the autism movement is Bernard Rimland's effort to eradicate the perception that autism is caused by bad parenting, and to replace it with a quest for biological etiology.

But not even the context of intellectual disabilities provides a good lens for studying the autism movement, which proves again and again to be following a trajectory of its own. (100) According to certain accounts of social justice, people with severe intellectual disabilities seem to have a lesser claim to public resources than other groups. (101) In a contractarian perspective, for instance, they do not count as net contributors and are therefore excluded from the paradigm of reciprocity. (102) Advocacy for those with severe mental impairments, therefore, ends up relying on philosophical notions of human dignity (103) and universal human rights, (104) which may have less redistributive pull in policy-making circles. (105)

This is not the case with autism advocacy. Its pitch is also grounded upon morality and universal values of inclusion, but pure economic logic is central to the movement in at least four ways. First, there is much emphasis on the fact that autism is expensive, because it saps the strength of adult caregivers and generates long-term burdens on society. (106) Finding ways to cure it or alleviate its symptoms is advertised as a cost-saving proposition. Second, autism is often perceived as the unavoidable flip-side of the precious coin of genius. (107) The force of this positive message is astonishing in fund-raising and political activism. If society has a chance to gain remarkably from children with autistic traits, then early therapy is an investment in the interest of progress and civilization. (108) Third, because there is no known way to prevent autism and because of its epidemic dimensions, subsidizing autism-related research and other public expenditures can be seen as a mechanism of insurance, one that would be deemed legitimate even by libertarian policy makers. (109) Fourth, the mystery of autism is most attractive to the analytical mind. Autism offers neuroscientists unprecedented insights, based on the scientific intuition, now widely popularized, that deviations from the biological norm can teach us much about the norm itself. (110) Given that emotions, empathy, and communication are so different in autistic individuals, perhaps autism research can lead to identifying the genetic bases of feelings and relations. Gender stereotypes are also implicated. Considering that most autistic children are boys, what in the brain explains such a remarkable gender difference? (111) Is it true, after all, that women, by a process of Darwinian selection, are more likely to display the warm and fuzzy features that the autistic mind seems to lack? Or is the correlation between autism and maleness something other and more interesting than the popular belief that "Men are from Mars"?(112) Such questions could hardly be more appealing to the scientific community, and investigating them may prove a cost-effective proposition.

Interestingly, this utilitarian theme pervades autism discourse in either of its main manifestations. When autism is framed as invasion and catastrophe, advocacy stresses its astonishing costs, the urgency of research, and the long-term savings that may come from treatment. When the emphasis is on beauty and genius, spending on autism is touted as a wise investment. In either case, autism seems to possess a utilitarian extra-gear vis-a-vis other types of conditions.

The legislative history of a health-insurance mandate in Florida speaks volumes about the relative power of this image. The Florida State House had favored a broad mandate that would cover intensive therapeutic services for young children afflicted by developmental disabilities, such as autism and Down syndrome. Down syndrome, however, is not mysterious; it cannot be cured, but it is detectable in utero; it is heart-wrenching, but it does not evoke a fear of uncontrollable forces. In the Senate, alleged financial constraints led to the refocusing of the bill around autism only. Governor Crist responded to ensuing criticism with the vague prediction that the ongoing "momentum and spirit of compassion" would soon "do more for those with Down syndrome." (113) But for the time being, Down syndrome was left behind. The dual frame of beauty and invasion carries more weight than other conditions when it comes to distributing finite resources.


Autism's growing presence in the judicial forum is a natural consequence of its notoriety. In turn, the movement draws strength from the fact that courts are increasingly busy figuring out what role to carve out for autism in the context of legal disputes. Judicial opinions play an important expressive function (114) insofar as they contribute to the portrayal of autism as a phenomenon of growing importance, calling for individualized attention and ad-hoc solutions. Courts have also performed the role of umpires in highly politicized disputes concerning the biomedical causes of autism, and have taken part in the controversy on the moral agency of persons with autism. While the conflicting strands of the movement have never resorted to legal action against one another, courts have unquestionably been involved in the discursive management of their disagreements.

This Part explores three areas of autism-related litigation which have variously polarized, expressed and channeled dissent within the movement. The first type of litigation pertains to the above mentioned split between the mainstream and the anti-vaccine camp. The forum for such diatribes is the Omnibus Autism Proceeding, a subdivision of a federal Vaccine court established to adjudicate the question of a causal link between vaccines and the autism epidemic. Here, specialized judicial panels face the difficult task of signaling systemic concern for the still mysterious causes of autism while at the same time deflecting mass hysteria and clinging to scientific evidence.

A second line of autism-related adjudication deals with criminal cases in which the defendant has autism. In such matters, the mainstream frames autism as a problem in need of attention and ad-hoc solutions. Autism rights advocates, by contrast, abhor the discursive association of autism spectrum disorders with criminal conduct. Here, again, courts are called to strike a difficult balance between conflicting demands stemming from the movement. …

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