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Comparative Policy Entrepreneurship:The Case of Autism-Related Policy inNorth AmericaDana Lee Baker a & Trudy Steuernagel ba Washington State University , Vancouver, WA, USAb Kent State University , Kent, OH, USAPublished online: 20 May 2009.

To cite this article: Dana Lee Baker & Trudy Steuernagel (2009) Comparative PolicyEntrepreneurship: The Case of Autism-Related Policy in North America, Journal of ComparativePolicy Analysis: Research and Practice, 11:2, 233-248, DOI: 10.1080/13876980902888103

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Comparative Policy Entrepreneurship:The Case of Autism-Related Policy inNorth America

DANA LEE BAKER* and TRUDY STEUERNAGEL***Washington State University, Vancouver, WA, USA; **Kent State University, Kent, OH, USA

ABSTRACT Policy entrepreneurs are expected players in modern democracy. Nevertheless, therelationship between political context and successful policy entrepreneurship has beenincompletely addressed. This is particularly the case when it comes to public health issues. Weexamine comparative policy entrepreneurship by comparing the emergence of policy entrepreneurssurrounding autism in Canada and the United States. Our study of federal autism policy in Canadaand the United States finds that policy entrepreneurs in the two countries created different publicproblems and policy linkages to address the same emerging social condition.

Introduction

Policy entrepreneurship involves competitive assignment of blame (Tarry 2001),especially when causes of a problem are insufficiently established through acceptedscientific knowledge. To be most successful, such construction of blame should takestructure of government and traditions of governance into account. As a result, policylinkages targeted toward novel challenges in different nations – even those that aresocio-cultural peers – might be expected to diverge substantially enough to createfundamentally different, and perhaps even opposing, policies and programs targetingotherwise identical human conditions. Furthermore, particularly in situations lessclearly scientifically understood, these differences motivated by policy entrepreneurscan buttress discrepancies in scientific knowledge between nations (Timmermans 2001).

The recorded incidence of autism has risen dramatically over the course of the past20 years. As the population of individuals with autism grew, attendant demands onsocial welfare infrastructures rose. Due to this and to the re-articulation of disabilityas an amalgam of individual characteristics and inflexibility in a society’sinfrastructures, a high potential for the innovative work of policy entrepreneurs

Dana Lee Baker is an Assistant Professor in the Department of Political Science and Criminal Justice of

Washington State University. Her primary research interests are in disability and health policy,

particularly with a comparative focus.

Trudy Steuernagel is Professor of Political Science at Kent State University. Her teaching and research

interests include, in addition to autism policy, political theory, women and politics, and U.S. health

policies and politics.

Correspondence Address: Dana Lee Baker, Department of Political Science and Criminal Justice, VMMC

202N, Washington State University, 14204 NE Salmon Creek Avenue, Vancouver, WA 98686 USA.

Email: bakerda@vancouver.wsu.edu

Journal of Comparative Policy Analysis,Vol. 11, No. 2, 233–248, June 2009

ISSN 1387-6988 Print/1572-5448 Online/09/020233-16

ª 2009 The Editor, Journal of Comparative Policy Analysis: Research and Practice

DOI: 10.1080/13876980902888103

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developed. Federal autism policy became an area where ‘‘road maps’’ are few, policyparadigms are emerging, political institutions are challenged, and policy entrepre-neurs are engaged in framing problems and policies. Comparing profiles of policyentrepreneurs engaged in federal autism policy in Canada and the United Statescontributes to a better overall understanding of how policy entrepreneurs createdifferent policy problems and link diverse solutions to suit particular politicalcontexts.

Policy Entrepreneurs

Entrepreneurs operate in public as well as private sectors. At least three types ofentrepreneurs exist in the public sector: political entrepreneurs, public entrepreneursand policy entrepreneurs. Although the terms are sometimes employed interchange-ably in the literature, the relevance of the adjectives is in the identification of differentfoci of activity. Whereas political and public entrepreneurs tend to focus onorganizations and positions, the focus of policy entrepreneurs is on ideas. Policyentrepreneurs seek to catalyze policy change by advancing new issue-relatedideas, particularly those supporting linkages to non-incremental policy solutions(Mackenzie 2004).

Since implications of change depend heavily on starting conditions, successfulstrategies will differ across political contexts. Embedded cultural mythologies,particularly those emphasized in the media, also shape and constrain policy arenas(Gornick and Meyers 2001). However, position and location represent relativelyirrelevant characteristics of policy entrepreneurs (Mintrom 1997). Policy entre-preneurship tends to involve elective behavior on the part of individuals unusuallyinterested in a particular policy problem or solution. Individuals can be part ofgovernment as elected or appointed officials or they can be outside government ininstitutions such as research or interest groups (Kingdon 2003: 122). Furthermore,policy entrepreneurs are usually not lobbyists since their interest is not purchasedand may be limited to a specific policy linkage as opposed to the issue area ingeneral. As a result of the involvement of policy entrepreneurs even nations thatare socio-cultural peers engaged in linked advocacy and research createsubstantially different issue-related policy subsystems. Such differences areespecially likely to evolve in the case of public problems involving contested oruncertain causality such as challenges relating to newly interpreted disabilities.

Policy entrepreneurs tend to be described as essentially similar to businessentrepreneurs in the literature (see for example Mintrom 1997). They have naturalor honed specific talents and skills necessary to identify issues and have decisionmakers attend to them. Though specifics vary to some degree across theliterature, a rough consensus on the defining characteristics of policy entrepre-neurs exist in parallel to those understood as key to success in business. Thesecharacteristics include charisma, credible issue elite status, a well-developedpolitical acuity and an ability to network unusually successfully. Thesecharacteristics are connected to a range of activities involved in the early stagesof the policy process including shaping the terms of a debate, problem definition,venue shopping and building advocacy coalition frameworks (Mintrom 1997,Pralle 2006).

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Fundamental goals differentiate policy entrepreneurs from their counterparts inother sectors and from other players in a given policy arena (Timmermans 2001). Theprimary product of a policy entrepreneur is a concept/solution pairing as opposed to aproduct or service. According to Kingdon, a policy entrepreneur is an advocate for aproposal or ‘‘for the prominence of an idea’’ (Kingdon 2003: 122). Political support foran idea is but a necessary and not sufficient condition to guarantee a policy an idea’semergence. As a result, policy entrepreneurs promote their ideas as brokers, andattempt to recombine and present their ideas in the context of the familiar; and, forKingdon, are more important than inventors who bring wholly new ideas.

Policy entrepreneurs, do not, however, operate in a vacuum; and the context inwhich they operate mediates their actions. For Kingdon, there is a ‘‘policy primevalsoup’’ in which ideas exist. The ‘‘soup’’ is complex, and ideas can combine,disconnect, and recombine; but eventually order emerges from chaos. Certaincriteria help us to understand which ideas will emerge. These include, according toKingdon, ‘‘technical feasibility, congruence with the values of community members,and the anticipation of future constraints, public acceptability, and politicians’receptivity’’ (Kingdon 2003: 200). Ideas that emerge most successfully are likely to‘‘affect how policy is made and how politics is conducted, even in the absence ofdirect pressure’’ (Kirp 1999: 194).

Managing these constraints requires that policy entrepreneurs individualize solutionsto public problems, especially where there are ‘‘policy voids’’ (Carter et al. 2004). Policyentrepreneurs can be expected to have particularly crucial roles in the public definition ofissues that are technically or scientifically complex because the public and otherstakeholders are (consciously or not) especially interested in simplification of the issue.In fact, policy adopters have been found to be more likely to rely on expert explanationthan scientific findings as mechanisms by which they choose policy alternatives(Mintrom and Vergari 1998). The differences in solutions selected to fill the autismpolicy void in Canada and the United States results from differing political engagementof scientific uncertainty on the part of policy entrepreneurs.

Policy entrepreneurs are typically creatures of the political environment and culturalcontext (Mintrom and Vergari 1998) as opposed to the presumably more rarified andglobal scientific community. Furthermore, their behavior, influence, and purpose differaccording to the expectations and infrastructures of the policy area in which they work(Tepper 2004). As a result, as can be seen in the autism case, the efforts of policyentrepreneurs are not only to privilege select policy solutions, but also to facilitate theconstruction of culturally specific public knowledge about scientific evidence (Timmer-mans 2001). For policy entrepreneurs in the modern era, success depends on framingscience to fit the characteristics of the culturally specific policy subsystem.

Autism

Autism is understood as an identifiable neurological difference with multifacetedeffects. Common characteristics of autism include some combination of: delayed orimpaired communication; unusually repetitive behaviors, motions, or verbalexpressions; a delay in or lack of typical interest in or comprehension of socialbehavior or conventions; heightened sensory sensitivity, including a pain response tolight, sound or other stimuli; and a marked resistance to change. Autism manifests

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quite differently across individuals in a spectrum stretching from so-called ‘‘low’’functioning to ‘‘high’’ functioning involvement with the condition. As is to beexpected in the description of a complex, behavior-based condition, the spectrummodel incompletely represents variances in the multiple attributes of autism(Volkmar et al. 2004). Nevertheless, the spectrum model is a useful foundation forpublic policy as it highlights that whereas some individuals with autism,1 particularlythose who also have mental retardation, remain in need of continual professionalcare through adulthood, others have little (or no) need for disability-related servicesas adults (Fombonne 2003).

The specific causes of autism are unknown. Furthermore, identification anddiagnosis of autism depends on observed behaviors only. Discerning the presence orabsence of autism in an individual necessarily involves subjective judgment. Autismis, nevertheless, hardly subtle. Though misdiagnosis has been historically common,individuals with autism (particularly those whose behaviors suggest they are on the‘‘low’’ functioning end of the spectrum) are typically readily identified as having aneurological (or mental) difference.

Current disability theory considers disability to be an amalgam of individualdifferences from population norms and a given society’s response to thosedifferences. A particular difference becomes disabling at the point at which theindividual becomes less able or unable to participate in a life-sustaining or otherwisevalued social activity as a result of a deviation from typical physical, mental,neurological or emotional abilities. Barriers to participation may be attributable tothe essential characteristics of the individual, the particular social construction of agiven society, or both (Barnes and Mercer 2003). As target population, disabilitycontinually transforms. For example, as Julie Smart explained, ‘‘intellectual,cognitive and psychiatric disabilities were not considered to be disabilities until thetwentieth century’’ (Smart 2001).

In the context of modern democracies, systemic threats to participation on thebasis of individual characteristics fundamentally unrelated to the given activity havecome to be considered increasingly unacceptable over time. Rights-based policy,similar to that which has been formulated to address challenges faced by otherminority (or non-elite) groups, is formulated to create programs bridging differencesin abilities, to prevent or punish the exclusion of individuals on the basis of disabilityalone, and to ensure that social infrastructure is constructed so as to be minimallyexclusive of individuals on the basis of differences (Sheldrick 2003). Autism is anexcellent case study of disability policy because of its recent emergence, its uncertainboundaries, and the lack of clear prognosis given diagnosis (Feinberg and Vacca2000). In such uncertain circumstances, there is a heightened opportunity forpluralistic policy entrepreneurship and for observable differences in policy outcomesresulting from political context.

Canada

To date, the vast majority of autism policy in Canada has been formulated at theprovincial and territorial level. This is in keeping with the majority of disabilitypolicy in Canada (Puttee 2002). Nevertheless, federal-level autism policy exists inCanada, primarily as a result of the efforts of policy entrepreneurs.

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By far the most active piece of federal autism policy in Canada has been theNational Autism Petition, which promotes the provision and education ofprofessionals in Applied Behavior Analysis and similar treatments (hereinafterreferred to as ABA). This petition was tabled 78 times during the last 12 months ofthe 38th Parliament by 50 members of Parliament (Canada Autism Petition 2006).ABA refers to intensive therapy requiring 20 to 40 hours a week of one-on-onestylized engagement wherein the individual (typically a young child) with autism isrepeatedly requested to perform discrete components of a desirable behavior. Thetreatment was developed for general use with children with autism during the 1960sby Dr. Lovaas, a clinical psychologist. The technique is somewhat controversialbecause of the age of the children engaged in the therapy, the goal of changing thepersonality and behavior of the individual with autism, and the (perceived)limitations on the skills that can be developed in individuals undergoing ABAtherapy.

However, in Canada, owing to the efforts of policy entrepreneurs working at thefederal level, the most successfully promoted (and contested) idea associated withautism policy is the necessity of ABA as a treatment for autism as a disease similar toAIDS or cancer. In Canada the primary foci of autism policy agendas include thearticulation of the rights of individuals with autism and, especially as a result of theSupreme Court case, the establishment (or resistance) of applied behavior analysis asa medical right. The discussion of the establishment of medical rights is based on afirm, though largely unexamined, assertion of the scientific superiority of a particulartreatment for behaviors associated with autism.

Peter Stoffer – Canadian Autism Day

Peter Stoffer, a member of the New Democratic Party of Canada from NovaScotia has recently emerged as a federal-level autism policy entrepreneur inCanada. Over the past several legislative sessions he has used his political clout asdescribed by Kingdon as an entrepreneurial tool. On November 24, 2005, heproposed to make April 23 National Autism Day. In his presentation of the bill,the ‘‘Canadian Autism Day Act’’ (C-454) Stoffer promoted the idea of autism as adisease by stating ‘‘what we are trying to do is make April 23 national autism dayto bring awareness to the fact that 1 out of every 190 children in this country areborn with some form of autism and how they are not even covered under theprovincial, territorial or federal health acts’’ (Committee of the House 2006). In sodoing, Stoffer engaged in venue shopping, seeking to take such decisions aboutcoverage out of the judiciary, which is considered to be relatively weak incomparison to the nation’s socio-cultural peers (Pralle 2006). Using the vehicle of aday symbolically devoted to autism also reflects a political acuity evident in anindividual who has been reelected three times.

A few days later, on November 28, 2005, Stoffer tabled C-459, ‘‘An Act to Amendthe Canadian Health Act (Autism Spectrum Disorder)’’ with the purpose to ‘‘ensurethat the cost of Applied Behavioural Analysis (ABA) and Intensive BehaviouralIntervention (IBI) for autistic persons is covered by the health care insurance plan ofevery province’’ (Bill C-459, First Reading Version). Both the language and intent ofthe act promote the idea of autism as a disease and link it to a preferred policy

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solution as though the question of appropriate treatment of autism were scientificallysettled.

Stoffer described his primary motivation for engaging in autism policyentrepreneurship as being that, unlike the United States, the Canadian federalgovernment does not directly fund autism programs. In the context of publiclyprovided health care, pointing out this discrepancy helps promote the idea of autismas a treatable disease. Stoffer first became interested in autism policy as a result of anad-hoc conversation he had with a parent protesting at the lack of autism funding onParliament Hill during his lunch break from work. In defining this story as thesource of his interest in the issue, Stoffer proxies issue elite status rooted in another’sdirect experience.

Sabrina Freeman – FEAT

Families for the Effective Treatment of Autism (FEAT) is an internationalorganization with groups in both Canada and the United States. FEAT wasfounded in California in 1993 by a group of professionals and parents with youngchildren with autism who were concerned about access to early intervention forautism (FEAT 2006). The primary goal of FEAT has been to promote the use andavailability of Applied Behavior Analysis and Intensive Behavioral Interventionbecause its members believe these treatments to be the most promising andscientifically tested inventions for antisocial behaviors associated with autism. As isstated on the FEAT-BC website, the organization is ‘‘dedicated to ‘medicallynecessary’ treatment of autism’’ (FEAT of BC 2006). FEAT opened the federalpolicy window of the type described by Kingdon for autism in Canada primarilythrough committed and consistent focus on the observed rise of incidence of autismin Canada.

FEAT was brought to Canada in 1996 by Sabrina Freeman, a highlycharismatic (albeit divisive) policy entrepreneur who was trained in sociology atStanford University. Freeman was a petitioner in the Auton (Guardian ad litemof) v. British Columbia (Attorney General), [2004] 3 S.C.R. 657, 2004 SCC 78which revolved around the obligation of the Canadian government to provideABA therapy as a medically necessary treatment for autism under section 15(1) ofthe Canadian Charter of Rights and Freedoms. The case articulated inequalitiesin the Canadian medicare system by promoting the idea of autism as adevastatingly serious disease for which treatment was available. Such a problemdefinition forges a strong linkage to the solution of increased equity in socializedhealthcare. According to this construction, provinces, including British Columbia,routinely broke the law by failing to provide for the level of treatment necessaryto permanently change the behaviors of individuals with autism. Ultimately, theSupreme Court rejected the idea that autism was life-threatening disease (whilenevertheless failing to fully reject the idea of autism as a disease). Under such aconception ABA was not a core healthcare service and therefore notconstitutionally required.

Freeman routinely compares autism to diseases such cancer and AIDS in pointingout the potential discrimination associated with failing to cover treatments deemednecessary by physicians on the basis of diagnosis alone. She vigorously and

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continuously emphasizes her issue elite status through references to her academictraining, her status as a parent of a child with autism and through her freelanceresearch including a provoking and fascinating book entitled Science for Sale in theAutism Wars: Medically Necessary Autism Treatment, the Court Battle for HealthInsurance and why Health Technology Academics are Enemy Number One (Freeman2003). As a policy entrepreneur Freeman deliberately seeks to discredit researcherswho do not promote the idea of autism as a disease to be treated by ABA. Freemanand FEAT stop just short, however, of insisting that all individuals with autism mustreceive treatment for autism-related behaviors. Nevertheless, the promoted policylinkage minimizes or ignores other popular behavior-based treatments for autism(such as Relationship Development Intervention). Other interventions, such asnutrition-based approaches are described as ‘‘complementary’’ (FEAT of Alberta2006).

FEAT is the driving force behind the oft-tabled petition to Parliament for therequired inclusion of intensive treatments for autism in medicare. Nevertheless, sincethe Auton decision in 2004, FEAT appears to have become more involved inprovincial advocacy than in federal-level policy entrepreneurship. Changing the focalvenue of their efforts has thus far been a relatively successful strategy that capitalizeson the elements of the Supreme Court decision which can be interpreted in theirfavor despite the rejection of their core argument in the case. Such venue shiftingdemonstrates political acuity because it is a way to exploit their victories in the lowercourts leading up to the Supreme Court decision.

Michelle Dawson – No Autistics Allowed

Not all policy entrepreneurs in Canada promote the idea of autism as a disease.Neurodiversity, or the idea of autism as aminority difference akin to ethnic or religiousminorities, competes fiercely with the idea of autism as a disease.Michelle Dawson is aleading policy entrepreneur focused on promoting neurodiversity in Canada. Likeother disability advocates she is drawing rights-based policy language and solutionsout of Kingdon’s policy primeval soup in an effort to fundamentally redefine autismpolicy in Canada. Dawson originally became engaged in autism policy as part of a casenow before the Human Rights Tribunal begun in 2002 (personal e-mail, March 16,2006). Neurodiversity, which has its roots in autism advocacy, focuses on therebalancing of social versus individual responsibility for neurological disability infavor of the protection of individual difference. A fundamental assumption ofneurodiversity is that to the extent that individual neurological differences do notinduce pathological behavior, in a democratic setting the onus is on the society toaccommodate rather than the individual to change. Calls for ‘‘cures’’ under suchcircumstances imply the unacceptable destruction of original personalities.

Dawson is an anti-cure autistic who considers autism a way of being and not adisease in need of being cured. Her charisma and ability to construct advocacycoalition frameworks (particularly virtual ones) contributes to her remarkablesuccess as a policy entrepreneur. In recent years, Dawson has become activelyinvolved in the protest of ongoing formulation of autism policy, primarily because ofthe focus on cure through intensive therapy during childhood and because of thelack of involvement of adults with autism in the formulation of autism policy.

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Dawson was the only individual with autism who directly participated in theAuton case. In an intervener’s factum, Dawson stated:

These proceedings reveal a large discrepancy between fundamental Canadianvalues expressed in the Charter, and the treatment and portrayal of autisticindividuals. The proceedings to this point have been so gravely flawed in thegross stereotyping of and the denial of the basic humanity of autistic individualsthat the constitutional questions at issue can only with great caution, if they canat all, be addressed without risking great and permanent harm to those whosewell-being is supposedly at issue. (Dawson 2006)

Fundamentally, Dawson’s participation in autism policy has been a difficult quest toforce autism policy into line with disability scholarship and the preponderance ofrights-based disability policy. In her efforts Dawson walks a careful line betweenpolicy entrepreneurship based on an issue elite status rooted in personal experienceand identity politics. Though Dawson (and FEAT’s) involvement in the autismpolicy subsystem could be characterized as traditional advocacy, her engagement inthe arena represents policy entrepreneurship because she is engaged in the promotionof a generalizable idea focused on fundamental, non-incremental policy change, asopposed to simple promotion of the interests of a particular target population.

United States

Representative Dan Burton

To date, most federal autism policy in the United States has been a product of therelationship between Congress and advocacy groups with policy entrepreneurs as thecatalysts. Among the lessons to be learned from the study of federal autism policy inthe United States are the circumstances under which individual policy entrepreneurscan have significant impact and the circumstances under which even their best effortsfall short of their goals.

The story of policy entrepreneurship and federal autism policy in the United Statesis, above all else, the story of grandparents’ and parents’ commitment and passion.The single most important person responsible for the placement of autism on theCongressional agenda is Representative Dan Burton (R-IN). Kingdon’s ideas onpolicy entrepreneurship are particularly useful in understanding RepresentativeBurton’s success in gaining agenda status for federal autism policy in the UnitedStates.

Burton was able to identify a problem and attach a solution to it. Burton broughtthe claim autism had reached epidemic proportions to Congress along with the claimthe epidemic was at least in part caused by a mercury-based preservative, thimerosol,used in childhood vaccines.2 The vaccine narrative had gained credibility amongsome in the autism community, but was not supported by the bulk of availablescientific evidence. Burton, a politician receptive to a theory that had some, albeitlimited support among scientists, and greater levels of support among parents ofindividuals with autism, helped the idea to emerge from the policy primeval soup(Kingdon 2003: 200). A major reason Burton was successful in advancing the autism

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narrative was that a virtual policy vacuum existed in respect to autism and thefederal government. Nonetheless, he was unable to get a major piece of legislation –H.R. 1349 the ‘‘National Vaccine Injury Compensation Program Improvement Actof 2003’’ – enacted, nor was he instrumental in the passage of the Children’s HealthAct (P.L. 106-310) of 2000.

Burton opened a policy window for autism, particularly autism and the vaccinenarrative by identifying the problem (framed as an epidemic), suggesting policies toaddress the problem (ban mercury in vaccines, hold bureaucrats and pharmaceuticalcompanies accountable, and utilizing his political clout (his ability to convenehearings and gain visibility for autism) (Kingdon 2003: 16).

Burton had the institutional position to advance the vaccine narrative. Since theRepublicans had control of the House of Representatives, Representative Burton wasable to use his position as Chair of the House Government Reform Committee (1997–2002) to call the hearings. When he was term limited out as Chair, a subcommittee hechaired was created for him, the House Government Reform Subcommittee onHuman Rights and Wellness, and he used it to continue his hearings.3 Burton hadsome lucky breaks. As noted, the Republicans controlled the House, so this gave hima committee chair. Furthermore, he was Chair of the Committee on GovernmentReform, a committee that has the responsibilities of the former Committee on PostOffice and Civil Service and the Committee on the District of Columbia. TheCommittee on Government Reform has a broad oversight mandate and a number ofinvestigative functions. Representative Burton utilized his institutional position incombination with his political savvy to launch his hearings. Following Kingdon,Burton was able to utilize the ‘‘threat of enactment’’ to prod bureaucracies such as theNational Institutes of Health (NIH) and Centers for Disease Control and Prevention(CDC) to pay more attention to the autism epidemic (Kingdon 2003, 26).

Representative Burton was able to use the claim of an autism epidemic as whatKingdon refers to as a ‘‘focusing event’’. A focusing event, in the form of a crisis, cancall attention to an issue. Prior to the claims of an autism epidemic, autism wasthought to affect few families and policy was sparse since most of the burden wasperceived as a private rather than public responsibility. Representative Burton cameto autism when his grandson was diagnosed with the disorder. This personalconnection is not uncommon in respect to policy entrepreneurs (Kingdon 2003: 94–96) and is particularly important in terms of autism.

While still chair of the subcommittee, Burton and Diane Watson, the subcommit-tee’s ranking minority member, requested the Government Accountability Office(GAO) prepare a report on the education of children with autism. The report (GAO-05-220) was formally released in February of 2005 and contained information on thenumber of children with autism receiving services under IDEA, the approaches usedto educate these children, and the costs of educating them. In their press releaseannouncing theGAO report, both Representative Burton andRepresentativeWatsoninvoke the vaccine/autism connection.4 By doing this, Burton was able to keep thepolicy window open by coupling the need for regulation with another concern forcosts of education (Kingdon 2003: 105–106). In addition, his action helps to expandthe political support for autism policy. Even those who do not have a personalconnection to an individual with autism, for example, may have concerns about thehigh costs of educating children with autism (Kingdon 2003: 180–181).

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In addition to his Congressional efforts in regard to autism, Burton also attemptedto prod the executive branch into action. Burton’s first request to President Bush fora White House Conference on Autism was issued on November 21, 2002. This wasfollowed by a second request on May 15, 2003. On November 19–20, 2003 there wasan Autism Summit Conference conducted by the Interagency Autism Coordinat-ing Committee (IACC), although to date there has not been a White Houseconference. Representative Burton attended the Autism Summit Conference andwas a speaker on opening day. Interestingly, the official summary of theconference, available at the website of the IACC, never mentions the terms‘‘epidemic’’ or ‘‘epidemic proportions’’ in respect to autism. In contrast, Burton’s2002 and 2003 requests for a White House conference used both terms, as well ascalling attention to the potential role of mercury in vaccine preservatives as acausal factor. Although the Autism Summit Conference did consider therelationship between mercury and autism, it focused on a number of othercausal factors as well as treatment strategies, service delivery, diagnostic methods,and calls for research. The official summary, instead of epidemic or epidemicproportions, referred to ‘‘increases in the reported prevalence rates for autism’’.

Kingdon’s distinction between the government agenda and the decision agenda isuseful in understanding the impact of Representative Burton and the relationship tothe executive branch. A governmental agenda, according to Kingdon, is ‘‘the list ofsubjects to which governmental officials and those around them are paying seriousattention’’ (Kingdon 2003: 3). The decision agenda is the ‘‘list of subjects within thegovernmental agenda that are up for an active decision’’ (Kingdon 2003: 4). Howdoes an issue move from the governmental agenda to the decision agenda? ForKingdon, the answer is located in a consideration of the streams – problems, policies,and politics – and the relationship between them and the issue. Where problems orpolitics alone can place an item on the governmental agenda, no single stream canplace an item firmly on the decision agenda. If all three streams are joined or coupledthe item can rise on the decision agenda. At this point the policy window is open. Oneway of looking at this is that Burton was instrumental in defining the problem, hadidentified a solution (ban mercury in vaccines), and was attempting to rally politicalsupport. He did have his committee and later his subcommittee because of control ofthe House by the Republicans. But he got little in the way of decisions, i.e. nolegislative enactment of his vaccine bill. What happened is that there was anuncoupling, taking the solution away, but an embrace of the problem, i.e. theepidemic or at least greater numbers), and support for doing something. That led tothe conference and some greater action on autism. Some who were not comfortablewith the vaccine connection were willing to accept greater emphasis on research andmore emphasis on bringing together the different agencies of the federal governmentto begin taking action on autism. Burton was initially more successful in shaping thegovernmental agenda, whereas the earlier effort led to a decision agenda that resultedin enactment (the Greenwood/Smith bills that were enacted in key provisions into theChildren’s Health Act (CHA)).

Representative Burton’s efforts on behalf of autism did not end with the demise ofhis subcommittee. He continues as a member of the Congressional Autism Caucusand is still a major face of the autism/vaccine connection through speeches in and outof Congress. Burton used his institutional position to advance the autism/vaccine

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connection, and he was aided in his efforts by the flexibility of the Committee onGovernment Reform. In effect, Burton created a policy venue for the considerationof the autism/vaccine connection because he was able to capitalize on his position aschair of a committee with a broad oversight mandate.

Burton has some of the characteristics Kingdon identifies as leading to a policyentrepreneur’s success. He has a claim to status as an issue elite because of hisgrandson and his connection to advocacy groups against mercury in vaccines.Although not known as a person with extensive political connections, he certainlyhas an abundance of another characteristic identified by Kingdon, persistence.

It is here that another theoretical approach is useful in explaining RepresentativeBurton’s success. Baumgartner and Jones contend that policy change is unlikely ifthe related policy venue is stable. However, dramatic or ‘‘punctuated’’ issue-orientedevents have the potential to influence subsystem stability and related policyoutcomes. These dramatic events have the potential to shake up a policy venueleading to dramatic changes in policy outcomes, or what Baumgartner and Jones(1993) describe as ‘‘policy making lurches’’. Burton, although not the originator ofthe vaccine/autism connection or the first to declare an autism epidemic, did act as apolicy entrepreneur and shifted the policy venue to his committee. This, followingBaumgartner and Jones, led to increased Congressional attention to and action onautism. As a policy entrepreneur, Burton created a venue for autism issues inCongress. On a track parallel with Burton’s efforts were the efforts of theCongressional Autism Caucus. In contrast to Burton, the Caucus did not create avenue for autism policy but functioned to coordinate autism-related efforts acrossestablished committees.

Congressional Autism Caucus and Advocacy Groups

The Congressional Autism Caucus, originally known as CARE, was founded in 2001by Representative Mike Doyle (D-PA) and Representative Chris Smith (R-NJ).5

With a membership numbering over 180, the Congressional Autism Caucus isbipartisan, as are most such caucuses, and includes members from the House andSenate. Much like the Diabetes Caucus, the Autism Caucus has a narrow orientation– limited to autism – which allows it to reach a consensus on legislative objectives(Burgin 2003). Since legislation relevant to autism is not confined to the jurisdictionof a single committee or subcommittee, the Caucus serves an important role incoordinating autism related congressional activities.

The Caucus in effect lobbies the House and Senate to increase funding for autism-related activities. On March 31, 2004, for example, the Caucus wrote a letter toRepresentative Regula, Chair of the House Appropriations Subcommittee on Labor,Health and Human Services, and Education, and Representative Obey, RankingMember of the same subcommittee, urging support for autism research andsurveillance. In the same vein, on April 14, 2004, Representatives Smith and Doylewrote a letter to the Chair and Ranking Member of the House Committee onEducation and the Workforce, Representatives Boehner and Miller, urging supportfor HR 1700: the Teacher Education for Autistic Children (TEACH) Act.6 The firstmajor piece of federal legislation addressing autism was enacted in 2000 and the firstmajor executive government response, the establishment of the Interagency Autism

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Coordinating Committee – mandated by the Children’s Health Act (PL 106–310) –was in 2001. The autism section of the Children’s Health Act came from earlierhearings and legislative proposals that were then incorporated into the Children’sHealth Act. Specifically, Title I of the Children’s Health Act consists of provisionsdrawn from two bills, HR 997 and HR 274. HR 997 was introduced during the 106thCongress on March 4, 1999 and entitled the ‘‘Advancement in Pediatric AutismResearch Act’’. The bill was sponsored by Representatives Greenwood (R-PA) andSmith (R-NJ) among others. It was referred to the Committee on Commerce. HR274, introduced on January 6, 1999 and entitled the ‘‘Autism Statistics, Surveillance,Research, and Epidemiology Act of 1999’’, was sponsored by Representatives Smithand Greenwood and was also referred to the Committee on Commerce. Althoughpre-dating the formation of the Caucus, the partnership between Smith and a majorautism advocacy group, Cure Autism Now (CAN), was evident in legislative activitysurrounding HR 997 and HR 274.

This close working relationship between the Caucus and autism advocacy groupscontinues and the influence of these advocacy groups on bringing policy to theagenda is magnified by their close relationship to the Caucus. The Autism Society ofAmerica (ASA), Cure Autism Now and the National Alliance for Autism Research(NAAR),7 for example, were noted in the 2001 announcement of the formation ofthe Coalition for Autism Research and Education (CARE). Still, there aredifferences in approach to autism, with some groups focusing primarily on a curefor autism and others advocating more intensely for better services. Interestingly, thelead sponsors of the Combating Autism Act of 2005 (HR 2421 and S. 843) –Representative Bono (R-CA), Representative DeGette (D-CO), Senator Santorum(R-PA), and Senator Dodd (D-CT) – are not members of the Autism Caucus. Anemail from a member of Representative Doyle’s staff indicated the sponsors hadbeen approached to join the Caucus but had decided not to join (personal email,September 9, 2005). In addition, although ASA supported the Combating AutismAct of 2005, it was not listed as one of the groups supporting the legislation in thesponsors’ announcement. Instead, CAN and NAAR were joined by a neworganization, Autism Speaks.8

Autism Speaks was founded by Bob and Suzanne Wright, the grandparents of achild with autism. Bob Wright is the chair and CEO of NBC Universal and vice chairand executive officer of General Electric Company. Autism Speaks has quicklybecome a major player in gaining visibility for autism and working withpolicymakers to increase funding for research and autism-related services. CureAutism Now was founded in 1995 by Jonathan Shestack and Portia Iverson, parentsof a son with autism. Shestack is a film producer whose credits include Air Force Oneand Iversen is a writer and set designer. Shestack has been very public in his supportof autism legislation and has testified before Congress on behalf of increased federalfunding for autism research.9 CAN lobbied extensively for federal funding forautism awareness and education as well as physician training, provisions that wereincluded in the 2004 Omnibus bill (PL 108–447).

Both Autism Speaks and CAN, due to their media and entertainment connections,have relied heavily on the use of celebrities to promote autism awareness. BradleyWhitford, a college friend of Shestack’s, for example, was part of the celebrity group

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that lobbied Congress on behalf of the Children’s Health Act of 2000 and wasinstrumental in incorporating an autism storyline into the West Wing televisionprogram, a show in which he stars.10 In 2005 NBC did a 10 part series of stories on‘‘Autism: the Hidden Epidemic’’ that appeared not only on NBC itself but also onMSNBC and CNBC. Autism Speaks, Inc. was one of the two charities, along withthe Elizabeth Glaser Pediatric Aids Foundation, benefiting from a season finale‘‘Apprentice’’, an NBC program.

Conclusion

Conventional theories of public policy suggest policy problems are defined in termsof causes and impact and a significant part of the policy process involves efforts toestablish a cause and assign responsibility or blame so solutions can be proposed(Tarry 2001). Do the experiences of policy entrepreneurs involved with federalautism policy support these conventional theories? As this comparativestudy suggests, the answer is more complex than a simple ‘‘yes’’ or ‘‘no’’ and callsattention to the political and institutional contexts in which the policy entrepreneursoperate.

The heated debates in both countries concerned competitive definitions of thenature of autism itself. These ideas were differentially promoted and employed in theUnited States and Canada, but in both nations the suggestion offered byTimmermans (2001) that policy entrepreneurs can capitalize on a lack of scientificconsensus and utilize competing or ambiguous scientific claims to support theiragendas was clearly the case. In the United States, entrepreneurial efforts focused onthe notion of an epidemic since a public health crisis appeared to be the clearest andcleanest way to create a position for autism on the federal agenda. In Canada, on theother hand, the promotion of the idea of unjust bias in the public health care systemunderpinned both the ABA and the neurodiversity arguments, with the mediatingcircumstance being the existence of complete and effective treatment in the firstcase and the firm insistence on autism as physiological difference not essentiallyrelated to health in the other. In the unfolding policy history surrounding this issue,whether autism is fundamentally any of these proved less relevant than the ideas,linkages and opportunities captured by the distinct policy entrepreneurs in the twonations.

Representative Burton and his championship of the autism/vaccine connection, inKingdon’s term, ‘‘softened up’’ Congress for other autism initiatives (Kingdon 2003:127–128). His efforts were also an example, following Tarry (2001), of an attempt toidentify a cause of autism, i.e. mercury in vaccines, and assign blame to thepharmaceutical companies. A cause framed in this manner generates a solution,namely greater regulation of pharmaceutical companies. Although, as noted, Burtonwas not successful in terms of obtaining a policy outcome acknowledging the role ofmercury in the etiology of autism and the attendant regulation of pharmaceuticalcompanies, his efforts did ‘‘soften up’’ Congress and subsequent successful autisminitiatives included the passage of the Combating Autism Act of 2006 (PL 109–416).Supporters of the Combating Autism Act of 2006 embraced and advanced the idea,first promoted by Representative Burton, that autism was an epidemic. The problem

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definition shifted from finding the cause of autism and assigning blame to developingstrategies for dealing with a public health crisis, thereby linking autism advocacy to aproblem that could be defined and for which solutions could be developed. InCanada, however, this same lack of historical perspective and behavioral basis ofautism contributed to successful promotion of autism as either a treatable diseaseneglected by government or a natural difference typically requiring protection asopposed to treatment. Framing public challenges associated with autism in this wayhas not yet achieved the goal of either set of stakeholders. Applied Behavior Analysis(or other intensive treatment) is neither universally available nor generally rejected inCanada. However, this problem definition has created a space for national debatesince in this context questions about autism policy become questions aboutCanadian federalism, particularly the rights and responsibilities of provinces vis-a-vis the national government in planning the provision of health care.

These findings are consistent with Timmermans’ (2001) emphasis on theimportance of ‘‘actor strategies’’ within different institutional contexts. As he notes,these actor strategies are particularly crucial for new issues without established‘‘jurisdictions’’ or in situations in which established institutions are unresponsive(Timmermans 2001: 334). The actor strategies of the policy entrepreneurs involved infederal autism policy varied within the political and institutional contexts of the twonations. In Canada, for example, the focus on ABA as a medical right makes sensegiven the context of the socialized Canadian health care system. A similar effort inthe United States, given the country’s privatized health care system, would have littleimpact on families’ access to ABA. Similarly, whereas focus on individual harmresulting from a specific injury is an effective strategy in the famously litigiouscontext of the United States, this strategy is less meaningful in the more collectivist-oriented Canadian context.

Notes

1. ‘‘People first’’ language is used consciously in this article. Although some members of the target

population(s) prefer language that connotes community (e.g. autistic people), appropriate use of this

language depends on a deliberative choice of community identity. People first language includes both

those who actively choose to engage disability as an element of community and those who do not,

including those who are unaware of their disability status.

2. A voluntary removal of thimerosol from vaccines began in July 1999.

3. As of the 109th Congress the Subcommittee no longer exists, although Burton remains a member of

the Committee on Government Reform.

4. ‘‘Reps. Burton and Watson announce findings of GAO report on autism education costs – average

expenditure estimated at more than $18,000 per autistic pupil annually’’, Press release, February 14,

2005, available at http://www.house.gov/burton/pr021405.htm (accessed February 5, 2007).

5. Neither Doyle nor Smith has indicated a direct personal connection to autism. Smith’s district includes

Brick Township, the site of a large ‘‘autism cluster.’’

6. Copies of these letters as well as additional information concerning the Caucus are available at the

Autism Caucus website, accessible through Representative Doyle’s website at http://www.house.gov/

doyle (accessed April 21, 2009).

7. ASA was founded in 1965, NAAR in 1994, CAN in 1995, and Autism Speaks in 2005. NAAR and

Autism Speaks merged in 2006. In that same year, CAN and Autism Speaks announced their intention

to merge, an action which was completed in 2007. The new organization is known as Autism Speaks.

8. According to Barbara Yavorcik, President of the Autism Society of Oho, the ASA ‘‘very much

supports the Combating Autism Act of 2005’’ but is not listed as a ‘‘participating’’ organization

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because it ‘‘has not entered into a formal agreement with the parent organization of Autism Speaks

(Yavorcik, at ohioautismlegislation.org). ASA did support the Combating Autism Act of 2006 which

became PL 109–416 on December 19, 2006.

9. Renee Russo and Jonathan Shestack testified on behalf of increased funding for autism before the

House Health subcommittee, October 20, 1999. For more details on CAN’s efforts, see the

organization’s website, http://www.cureautismnow.org/government.

10. For more details on the White House episode, including Whtiford’s involvement, see http://

www.westwingepguide.com/S2/Episodes/39_TSF.html.

References

Barnes, Colin and Mercer, Geoff, 2003. Disability (Cambridge: Blackwell Publishers).

Baumgartner, Frank R. and Jones, Bryan D., 1993, Agendas and Instability in American Politics (Chicago:

University of Chicago Press).

Burgin, Eileen, 2003, Congress, health care, and congressional caucuses: an examination of the diabetes

caucus. Journal of Health Politics, Policy, and Law, 28, 789–820.

Canadian Autism Intervention Research Network, 2006, available at http://www.cairn-site.com/

mission.html (accessed May 5, 2006).

Canada Autism Petition Information, 2006, available at http://www.canadaautism.com/ (accessed

February 18, 2006).

Carter, Ralph, Scott, James and Rowling, Charles, 2004, Setting a course: congressional foreign

policy entrepreneurs in post-World War II US foreign policy. International Studies Perspectives, 5, 278–

283.

Committee of the House, 2006, available at http://www.parl.gc.ca/38/1/parlbus/chambus/house/debates/

157_2005-11-24/han157_1010-E.htm (accessed May 4, 2006).

Dawson, Michelle, An autistic at the supreme court, available at http://www.sentex.net/%7Enexus23/

naa_fac.html (accessed March 15, 2006).

Families for Effective Treatment of Autism (FEAT), 2006, A brief history of FEAT, available at http://

www.feat.org/history.htm (accessed May 4, 2006).

Families for Effective Treatment of Autism (FEAT) of Alberta, 2006, available at http://

members.shaw.ca/feat.ab/FEAT.html (accessed May 4, 2006).Families for Effective Treatment of

Autism (FEAT) of BC, 2006, available at http://www.featbc.org/ (accessed May 3, 2006).

Feinberg, Edward andVacca, John, 2000,The dramaand traumaof creating policies onautism: critical issues to

consider in the new millennium. Focus on Autism and Other Developmental Disabilities, 15, 132.

Fombonne, Eric, 2003, Modern views of autism. The Canadian Journal of Psychiatry, 48, 503–505.

Freeman, S., 2003, Science for Sale in the Autism Wars: Medically Necessary Treatment, the Court Battle

for Health Insurance and Why Health Technology Academics are Enemy Number One. Langley, BC: SKF

Books.

Gornick, Janet C. and Meyers, Marcia K., 2001, Lesson-drawing in family policy: media reports and

empirical evidence about European developments, 3(1), 31–57.

Kingdon, John, 2003, Agendas, Alternatives, and Public Policies, 2nd edition (New York: Longman).

Kirp, David L, 1999, Look back in anger: hemophilia and AIDS activism in the international tainted-

blood crisis. Journal of Comparative Policy Analysis, 1(2), 177–202.

Mackenzie, Chris, 2004, Policy entrepreneurship in Australia: a conceptual review and application.

Australian Journal of Political Science, 39, 367–386.

Mintrom, Michael, 1997, Policy entrepreneurs and the diffusion of innovation. American Journal of

Political Science, 41(3), 738–770.

Mintrom, Michael and Vergari, Sandra, 1998, Policy networks and innovation diffusion: the case of state

education reforms. Journal of Politics, 60, 126–147.

Pralle, Sarah, 2006, The ‘‘Mouse that roared’’: agenda setting in Canadian pesticide politics. The Policy

Studies Journal, 34(2), 171–194.

Puttee, Alan, 2002, Federalism, Democracy and Disability Policy in Canada (Montreal: McGill-Queen’s

University Press).

Sheldrick, Byron M., 2003, Judicial review and the allocation of health care resources in Canada and the

United Kingdom. Journal of Comparative Policy Analysis, 5(2–3), 149–166.

Autism-Related Policy in North America 247

Dow

nloa

ded

by [

McM

aste

r U

nive

rsity

] at

11:

55 1

8 D

ecem

ber

2014

Smart, Julie, 2001, Disability, Society and the Individual (Gaithersburg, MD: Aspen Publishers).

Tarry, Scott, 2001, Issue definition, conflict expansion, and tort reform: lessons from the American general

aviation industry. Policy Studies Journal, 29, 571–588.

Tepper, Stephen J., 2004, Setting agendas and designing alternatives: policymaking and the strategic role

of meetings, Review of Policy Research, 21, 523–542.

Timmermans, Arco, 2001, Arenas as institutional sites for policymaking: patterns and effects in a

comparative perspective. Journal of Comparative Policy Analysis, 3(3), 311–337.

Volkmar, Fred R., Lord, Catherine, Bailey, Anthony, Schultz, Robert T. and Klin, Ami, 2004, Autism

and pervasive developmental disorders. Journal of Child Psychology and Psychiatry, 45, 135–170.

248 D. L. Baker and T. Steuernagel

Dow

nloa

ded

by [

McM

aste

r U

nive

rsity

] at

11:

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