Open Journal of Political Science
2013. Vol.3, No.1, 1-7
Published Online January 2013 in SciRes (
Copyright © 2013 SciRes. 1
Use of Science in Autism Policy Development
Dana Lee Baker
School of Politics, P hilosophy and Public Affairs, Washington State University, Vancouver, USA
Received Septem ber 22nd, 2012; revised November 4th, 2012; accepted November 18th, 2012
Though ultimately beneficial to society, interactions between science and politics require careful tending.
Because science is an exercise in trial and error, public policy development can be affected by both scien-
tific missteps and the length of time it takes to produce reasonable scientific certainty. Introduction of
scientific findings, especially more preliminary ones, into the political process has a mixed record. Un-
derstanding how these tensions play out in contemporary politics is important for both disability studies
and policy studies generally. This article explores how science and scientific evidence is employed by
stakeholders engaged with autism policy development in the United States.
Keywords: Autism; Science; Autism; Public Policy; Politics
Science and politics share a storied history. Nevertheless, in
recent decades, a shared understanding of the ideal relationship
between science and politics has been taken a degree more for
granted. Scientists work to provide unbiased insights to en-
lighten political discourse. In return, those engaged in politics
secure resources and protected intellectual space necessary for
scientists to act as honest brokers of sophisticated human
knowledge (Pielke, 2007). Though still often violated, a com-
mon understanding of distinction between normative political
discussion and objective scientific inquiry supposedly exists.
For those with even the most passing interest in disability
history, however, achieving comfort about relations between
science and politics would be difficult at best (McRuer &
Berube, 2006). While recognizing the potential benefits of sci-
ence is vital (particularly with regard to survivability of some
disabling conditions), the past is replete with intrusions, insults
and injuries to individuals with disabilities1 conducted in the
name of science (Fine & Asch, 1998; Silverstein, 2010). Fur-
thermore, some scientists—though certainly not all—continue
to disregard preferences and rights of people with disabilities
(McRuer & Berube, 2006). Given these circumstances, how
science is discussed in disability policy development is intrigu-
ing. Using samples drawn from legislative testimony and from
statements from organizations in the United States, this article
explores how science is employed in political discourse about
autism2. Literature Review
What Is Science?
Definitions of science vary across time, place and stake-
holder. General agreement exists that science should be distinct
from political endeavors. As Hans Kenslen put it in a 1951
article on science and politics “science is a function of cogni-
tion; its aim is not to govern, but to explain” (p. 642). However,
more recent scholarship has argued “science is political and
politics are technical” (Konefal & Hatanaka, 2011: p. 126).
Furthermore, heated debate remains as to boundaries of science.
For some, science is limited either to “hard” sciences or results
of data collected through replicable experimental procedures
using a positivist approach. For others science incorporates any
analysis of data collected empirically using a generally repeat-
able process including specific consideration of the role of hu-
man subjectivity. In this article, science is defined closer to the
latter definition, including any knowledge derived from an em-
pirical rather than purely creative exercise.
Two types of science are often distinguished: basic and ap-
plied science. Basic science involves analysis of data collected
in response to a question posed exclusively for discovery. In
other words, those conducting basic science isolate their work
from other human goals including contemporary social, eco-
nomic and political agendas. Importantly, basic science also
typically includes an assumed lack of concern for commercial
potential of products which might come about as a result of the
endeavors (Drolet & Lorenzi, 2010). Basic science is often as-
sociated with open science, meaning a preference for making
findings as widely available, even to the point of actively re-
fusing to apply for patents (David, 2008). Basic science is vital,
especially because of lack of predictability about what know-
ledge will become urgently needed in the future.
The second type of science, applied science, has sometimes
been considered inferior (Tijssen, 2010). Applied science em-
braces politically or economically directed pursuit of know-
ledge. In the United States, science became generally more
applied over the past several decades (Oreskes, 2011). In par-
ticular, emphasis on grants to support research conducted at
universities promotes applied science. Grant applications are
increasingly required to articulate broader and immediate im-
pacts of research both when proposed and when reported at the
end of the funding period (Pielke, 2007).
1This article employs people first language unless discussing disability as a
consciously embraced element of political or social identity or as found in
context of cited documents.
2During the time of this writing, the Diagnostic and Statistical Manual o
Mental Disorders V (DSM-V) was in development. This manual is the most
commonly used source of a scientific definition of autism employed in the
creation of public policy in the United States. During the period examined in
this article Asperger’s syndrome was formally considered part of the autism
spectrum bo th in the DSM-IV and by most issue sta keholder s.
Both types of science share defining characteristics inspiring
some to question the utility of the dichotomy (Tijssen, 2010).
First, science is conducted predominantly by experts trained in
specific fields. The general trend has been for these fields to be
increasingly focused (Oreskes, 2011). Secondly, science in-
volves an expectation of long term commitment to an area (Dri-
scoll et al., 2012). Some scientific discoveries appear sudden
and may be followed by an avalanche of other discoveries in
the relatively short term. However, progress at this pace tends
to be separated by long periods of normal science (Kuhn,
Politicization of Science
Part of science’s politicization involves increasing public
participation in science (Felt & Fochler, 2008). This involves
attention to rights related to biological materials or information
taken from human beings (Skloot, 2011). Consideration of ex-
tension of these rights beyond the moment of actual participa-
tion in research contributes to the politicization of science. For
example, such considerations have led to increased pressure to
involve participants or the public in research design, interpreta-
tion of findings and dissemination of results (Boote, Baird, &
Beecroft, 2010). This approach to science embraces a more
democratic scientific method than the one born of the Enlight-
enment. Such efforts represent an important counterweight
against a history of oppression against targeted individuals and
groups, including people with disabilities.
At the same time, efforts to capitalize on confusion about
science have grown increasingly influential. A campaign to
confuse both the public and elected officials about scientific
methods has been executed in the United States for the past
several decades (Oreskes, 2011). In particular, lobbyists repre-
senting products found damaging to human health misrepre-
sented the meaning of peer review as ex post facto changes to
scientific results and the fact that positivist science never claims
certainty to mean findings are unreliable (Oreskes, 2011). Fur-
thermore, because esteemed scientific findings tend to be pre-
sented in peer reviewed journals and assertions less firmly
supported tend to appear in popular presses, internet or the
media, less reliable findings tend to be better known in a de-
mocratic setting (Brooks, 2009). Finally, mechanisms for trans-
lating basic science into clinical or applied science and then
commercial efforts remain ambiguous (Drolet & Lorenzi, 2010).
As a result, “many policies seem to fall short of or, indeed,
directly contradict what the available evidence suggests is re-
quired…existing literature highlights how this particularly oc-
curs in the conditions of uncertainty” (Juntti, Duncan, & Turn-
penny, 2009: p. 208).
Finally, science has been politicized through changes in fund-
ing mechanisms, especially for publicly funded universities.
Over the past several decades, the proportion of research fund-
ing expected to come from competitive grant processes consis-
tently increased. While one anticipated benefit of this shift
might be a move toward higher quality and relevant research,
this assumption has two main flaws. First, it ignores the fact
that most major human discoveries—especially those that pro-
ved most marketable—resulted from astute, unexpected obser-
vations made during the normal course of research (Taleb,
2007). Second, creation of competitive funding processes inte-
grates increased politics into science. The majority of requests
for proposals address contemporary, politically salient issues.
Making Politics Scientific
Scientific discoveries have elevated capacity for democratic
governance and implementation of high quality public pro-
grams. Activities ranging from mass delivery of potable water
to more effective compilation of government budgets result
from scientific research. These innovations create conditions
allowing humans to better practice democracy. Human exis-
tence is largely more comfortable now than in the past, largely
because of sustained investment in discovery (Pinker, 2011).
Nevertheless, building scientific discoveries into public in-
frastructures is a fundamentally messy process. Identifying the
moment at which scientific discovery becomes certain enough
to integrate into policy is inherently difficult (Tijssen, 2010).
Both science and democratic policy develop over long time
spans. Politics within a democracy involves a shorter event ho-
rizon, largely understood as tied to election cycles (McIvor,
2010). This event horizon shortens as democracies mature,
citizens acclimate to voicing discontent and organized, well-
funded interest groups refine their ability to wield political
influence (Oreskes, 2011). In addition, as democracies mature,
they take on more complicated challenges. Current challenges
targeted by democratic systems include many “wicked prob-
lems” (Jentoft & Chuenpagdee, 2009). Such challenges are dif-
ficult to define and elude technical solution. Addressing wicked
problems involves near-constant calibration with social and
political conditions as well as a need to continually rebalance
attention between short and long term goals (Stace, 2011). De-
signing policy targeting wicked problems depends more artistic
exercise of politics than implementation of rigidly and rigor-
ously tested solutions discovered through the analysis of highly
specified formal research questions.
Autism and Public Policy
Attention to autism spectrum differences (hereinafter referred
to as autism) has increased dramatically in the last twenty years.
Its place on the formal and systemic agendas of contemporary
democracies makes autism an excellent case from which to
examine use of science in disability policy discourse (Kingdon,
2010). In addition, the number of unresolved scientific ques-
tions about etiology and, in fact, nature, of autism also in-
creased the potential for involvement of scientists in issues
surrounding autism (Bumiller, 2009). The increase in the popu-
lation of individuals indentified as having autism inspired a
definite and deliberate increase in scientific efforts targeting au-
tism (Grinker, 2008). Finally, contemporary autism related po-
licy highlights wicked problem characteristics found in disabil-
ity policy (Stace, 2011).
This article employs content analysis using data drawn from
both legislative and issue stakeholder sources. First, a search
for congressional testimony during the 107th to 112th Con-
gresses (which met between 2000 and 2012) including the
words “autism”, “autistic”, or “Asperger’s” was conducted. This
time period was selected to include several years before and
after the passage of the Combating Autism Act of 2006, which
was the first federal legislation specific to autism. A sample of
150 documents was selected for analysis. The sample included
20 documents randomly selected from each Congress and a
purposive sample of 5 documents per Congress added to ensure
Copyright © 2013 SciRes.
that pivotal policies were not excluded. This sampling strategy
balances concerns related to bias coming from the tradition of
falsifiability in positivist approaches with the appreciation of
built knowledge more prevalent in other empirical traditions
(Silverstein & Auerbach, 2003). Documents included in the
legislative sample were of quite varied length ranging from text
of one minute speeches to thousands of pages of discussion.
To triangulate findings using data of a slightly different kind,
statements from autism related not for profit organizations were
also examined. The sample of organizations was collected us-
ing a purposive sampling followed by snowball sampling. The
sampling targeted federal level organizations and included or-
ganizations from diverse perspectives, especially with regard of
acceptance of neurodiversity versus pursuit of cure. This is
important because most autism organizations were founded by
either caregivers or professionals who tend toward association
with cure oriented agendas (Baker, 2011). The sample included
30 organizations of varied size, formality, and tenure. Research
oriented organizations inside the academy were excluded from
the sample.
Data Analysis
In the legislative sample, all references to autism in the full
text of the documents were located and catalogued using textual
analysis software. Discussion relating to autism was then coded
for keywords (and close synonyms) typically involved in the
discussion of science including: data, evidence, expert, grants,
findings, hypothesis, research, science, scientists, study and
theory. In the sample collected from not for profit organizations,
the full text of the collected statements was coded for the same
keywords (since all of the statements focused on autism). The
full sentence in which the keyword was located was employed
as the unit of analysis. When a search term appeared more than
once in a sentence, it was coded as a single reference.
Reference appearance patterns were examined and quotes
were thematically catalogued. Coding was conducted by the
author with a subsample of documents separately coded by two
other individuals to check for bias. No major differences were
detected. Furthermore, the full text of 30 documents was coded
to ensure the breadth of discussion was captured in the search
strategy. Although this exercise generated a large number of
references, it yielding no additional discussion related to spe-
cifically to autism. For example, over a hundred references to
grants focusing on student loans appeared in a document on the
Affordable Health Care Act.
Findings & Discussion
Legislative Testimony
The vast majority of legislative discussion about autism did
not focus on science. This is expected as not all political ques-
tions are inherently scientific. For example, statements urging
celebration of groups or individuals were common. In one such
a speech on March 8, 2011, Representative Lou Barletta (R-
Pennsylvania) explained “Mr. Kossuth founded 12/24, a Christ-
mas holiday seasonal band dedicated to raising funds for autism
research”. Such mentions primarily included parents, physi-
cians, service providers, and people working with nonprofits.
Much autism policy discourse including discussion of sci-
ence sought to establish autism as an urgent public issue. The
strategy generally employed centered on increased prevalence
of autism. As a result, the most frequently discussed statistic (or
more explicitly scientific finding) was rate at which autism
appears in the population. In particular, rates amongst children
were compared with those recorded a generation ago. Some-
times autism was described as part of a conglomerate of such
challenges. For example, Representative Louise McIntosh
Slaughter (D-New York) in an extension of her remarks on July
14th, 2005 on the Environmental Health Research Act, said:
Over the last 30 years, the US has seen a steep rise in the
occurrence of childhood cancers, testicular cancer, juve-
nile diabetes, attention deficit disorder, learning disabili-
ties, thyroid disorders, cognitive impairment, and auto-
immune disorders…Autism cases alone rose 210 percent
between 1987 and 1998.
As time went on, autism was more typically described as a
stand-alone challenge. For example, on October 6th 2009 Rep-
resentative Dan Burton (R-Indiana) stated “It used to be 1 in
10,000 was autistic; then it went to 1 in 150; and in the Journal
of Pediatrics this week, they said now more than 1 in 100 chil-
dren are autistic.” Similarly Representative Danny K. Davis (D-
Illinois) made a speech during consideration of the Training
and Research for Autism Improvements Nationwide Act of
2010 in which he explained “this bill expands federal support
for understanding and treating the Autism Spectrum Disorders
which affect as many as 1 in 110 children born in the United
States” (111th Congress, September 22nd, 2010). Furthermore,
autism was presented as “the fastest growing developmental
disability in the United States” (James P. Moran, before the
House of Representatives on April 27th, 2012). The most fa-
mous specifically referenced study examined the population of
Brick Township, New Jersey. For example, in discussion of Ex-
panding the Promise for Individuals with Autism Act of 2007
on April 19th, 2007 Representative Christopher H. Smith (R-
New Jersey) recalled “the results of this investigation, one of
the first federal studies on autism, were quite alarming…
Higher rates of autistic disorder and autism spectrum disorders,
ASDs, were found in Brick Township relative to rates from pre-
viously published studies.”
Occasionally entire academic articles or abstracts are sub-
mitted to the record in an effort to establish a pressing public
issue. The only instances in which this agenda positioning stra-
tegy was found in legislative discourse examined for this article
involved use of thimerosal in childhood vaccines as a potential
causal factor of autism. This strategy was employed several
times by Representative Dan Burton (R-Indiana). For example
on December 11, 2007, he stated “now we have scientific evi-
dence by two leading doctors in the Journal of Child Neurology
that says without doubt, the mercury in the vaccines does cause
autism, is a major contributing factor.” Representative Burton
goes on to say:
in November 2007, the well-respected scientific journal,
the Journal of Child Neurology, published an article au-
thored by Drs. M. Catherine DeSoto and Robert T. Hiltlan
(PhDs), detailing their findings on the relationship be-
tween mercury and autism spectrum disorders. The article
was entitled “Blood Levels of Mercury are Related to Di-
agnosis of Autism: A Reanalysis of an Important Data
Representative Burton also made general statements about
scientists agreeing with his position including comparisons of
Copyright © 2013 SciRes. 3
knowledge expectations for scientists and other professionals.
For example, on May 1st, 2001, Representative Burton stated:
I got a vaccination here by the doctor at the Capitol and I
found out, he did not know it, he is a great doctor, a fine
fellow, but he did not know there was mercury in the vac-
cine. How many of my colleagues got vaccines this year
to protect themselves against the flu, flu vaccine? If you
got one, you got mercury in your vaccination. That is a
contributing factor according to a lot of scientists and
doctors to Alzheimer’s and to autism in kids.
Notably this scientific argument enjoys little (and diminish-
ing) acceptance within more established science, especially in
the United States. From the perspective of the relationship be-
tween science and democracy, Congressional hearings become
an audience of last resort for scientific theories (or discoveries)
discerned to be less than credible by the majority of the mem-
bers of the relevant scientific communities. As Burton stated in
testimony entitled Blood Levels of Mercury are Related to Di-
agnosis of Autism on December 11th, 2007, “we simply cannot
dismiss or downplay scientific research, which has the potential
to unlock the mysteries surrounding what is causing our Na-
tion’s autism crisis”. In the same statement he goes onto say
“we owe it to the thousands of families living with autism to
follow the science wherever it may lead.” This argument is, of
course, fundamentally correct. However, discerning who is
leading and who is following becomes an ever more compli-
cated challenge in the absence of a strong norm of separation
between science and politics. Such a norm may, ultimately,
prove impossible to maintain in the absolute in the context of
an engaged, complex democracy without consistent attention to
protection of the principle on the part of politicians, scientists
and, to the fullest extent possible, the general public.
Congress also focused significant attention on relative
amounts of funding for autism research as compared to other
issues. For example, during the 107th Congress, in a statement
before the House of Representative regarding the Homeland
Security Act of 2002, Representative Burton argued:
The CDC is spending $932 million a year on the AIDS
epidemic, and AIDS deserves attention. So does diabetes.
This year we are going to spend $62 million on diabetes,
and we probably ought to spend more than that. But do
you know how much they are spending on research for
our children who are autistic? About $10 million. So we
are spending 80 times more on AIDS research than we are
on autism, yet it is the fastest-growing problem in Amer-
ica. And we are spending five to six times more on diabe-
tes than we are on autism.
Comparisons over time were also employed. For example,
Christopher H. Smith (R-New Jersey) in a speech concerning
the Expanding the Promise for Individuals with Autism Act of
2007 pointed out “in 1995, NIH invested about $10.5 million
into autism research… The estimated budget for autism re-
search in fiscal year 06 is nearly 10 times that amount$108
million” (April 19th, 2007).
Discourse surrounding grant programs addressed balance
between funding for scientific research and those for services.
For example, during the 111th Congress, Michael Doyle (D-
Pennsylvania) proposed:
The first type of grant would go to University Centers for
Excellence in Developmental Disabilities Education, Re-
search, and Service to provide training, continuing educa-
tion, technical assistance, and information to children and
adults on the autism spectrum, as well as the families of
such individuals and the professionals working with those
individuals (September 22, 2010).
During the 110th Congress, on May 19th 2008, Albert Wynn
(D-Maryland) expressed “support for designation of April 2008
as ‘National Autism Awareness Month’ and supporting efforts
to devote new resources to research into the causes and treat-
ment of autism and to improve training and support for indi-
viduals with autism and those who care for individuals with
autism”. Similarly, during discussion of the Combating Autism
Act on December 8th 2006, Senator Mike Enzi (R-Wyoming)
stated, “this is a comprehensive piece of legislation that will
take the next steps toward providing, greater research so that
we can provide children with autism early intervention to en-
able them to grow and reach their full potential.” Connected to
such discussion this was the recognition of that the pace of
scientific discovery will be slower than current need for ser-
vices. For example, Representative James P. Moran (D-Virginia)
reminded the House of Representatives on April 27th, 2012 that
“while scientists work on the causes of and treatments for ASD,
children on the spectrum deserve the best possible education”.
Promoting autism related research through provision of
grants and contracts was discussed as a fundamental response-
bility of government with regard to both science and society.
For example, during a reading of the Combating Autism Act on
December 6, 2006 one best practice described was that:
The Secretary shall promote research, through grants or
contracts, to determine the evidence-based practices for
interventions for individuals with autism spectrum disor-
der or other developmental disabilities, develop guidelines
for those interventions, and disseminate information re-
lated to such research and guidelines.
Similarly, in written testimony before the House Committee
on Government Reform, Lee Grossman, the President of Au-
tism Society of America, stated “ASA also recommends that
there is a need to increase the number of scientists involved
with research and treatment grants…We request that NIH de-
velop programs that encourage researchers to enter into fields
associated with autism research and to stimulate new research
protocols” (107th Congress, April 18th, 2002).
Some of discourse examined supported intervening more
forcefully in the direction of scientific efforts. Examples of this
include Representative Christopher H. Smith’s (R-New Jersey’s)
statement about the Expanding the Promise for Individuals with
Autism Act of 2007 on April 19th 2007 that “many members of
the C.A.R.E. caucus joined in supporting and passing last De-
cember the ‘Combating Autism Act’, important legislation
which focused on improving autism-related research funded
through the National Institutes of Health, autism surveillance,
and early screening and diagnosis”. In an earlier reading of the
Combating Autism Act on December 6th 2006, one of the best
practices described was to “promote research into the develop-
ment and validation of reliable screening tools for autism spec-
trum disorder and other developmental disabilities and dis-
seminate information regarding those screening tools”. Repre-
sentative Dan Burton (R-Indiana) expressed concern regarding
the potential for Congress to micromanage science when he
Copyright © 2013 SciRes.
said during discussion of the Combating Autism Act on De-
cember 6, 2006:
The right funding and the right minds will cure autism,
but even staggering amounts of money won’t do the job if
our efforts are not focused on the most promising research.
I think it is important to let scientists decide how to con-
duct the medical research. They must be held accountable,
too, but this is a job for science, not politics.
Though some might question whether Burton’s concern is
about science in general or the perception of his preferred sci-
ence, concern about the degree to which science and politics is
held distinct is not without cause. For example, though not ex-
plicitly stated, there were some instances in the discourse in
which research and advocacy were presented as conceptually
similar, if not the same. For example, a reading of the Combat-
ing Autism Act on December 6, 2006 focused on the constitu-
tion of a board included the statement that “at least one such
member shall be a representative of leading research, advocacy,
and service organizations for individuals with autism spectrum
Another element of discussion involved lauding scientists for
their recent efforts while reminding Congress that there was
still quite a bit of as yet-undiscovered knowledge about autism.
For example, in a speech regarding the Training and Research
for Autism Improvements Nationwide Act of 2010 Representa-
tive Danny K. Davis (D-Illinois) stated “recently, scientists
have made advances in understanding Autistic symptomatol-
ogy… Yet there remains limited understanding about its causes
and course” (September 22nd, 2010). Similarly, during discus-
sion before the Senate of the proposed Advancement in Pediat-
ric Autism Research Act on March 9th, 1999 Senator Slade
Gorton (R-Washington) said:
The facts about autism can be sobering—but there is hope.
Early intervention and treatment has helped many chil-
dren. Science has also made great strides in understanding
this disorder. We now know that autism is a biological
condition, it is not an emotional problem and it is not
caused by faulty parenting. Scientists believe that autism
is one of the most heritable developmental disorders and
is the most likely to benefit from the latest advances in
genetics and neurology. Once the genetic link is discov-
ered, the opportunities for understanding, treating, and
eventually curing autism are endless.
Not all discussions of implementation were congratulatory,
however. Concern was raised about failure to help limit poten-
tially dangerous use of unproven treatments for autism on one
side and heavy handed responses to use of less conventional
treatments on the other. For example, Senator Daniel Inouye
(D-Hawaii) sent an explanatory statement to the 111th Con-
gress encouraging more informed government input into the
information provided to the public about treatments for autism
which read “in addition, an increase of not less than $2,000,000
is provided for research on evidence-based practices for inter-
ventions for individuals with autism and other developmental
disabilities, for development of guidelines for those interven-
tions, and for information dissemination” (December 14th,
2010). On the other hand, on September 13th, 2011, Repre-
sentative Ron Paul (R-Texas) objected to government interven-
tion into use of less proven therapies for autism by reporting
“just this year, armed federal agents raided the headquarters of
Maxam Nutraceutics, a company that produces and sells nutri-
tional supplements for people with autism”.
Some of the discourse also took up the meaning of science
directly. In particular, attempts were made to clarify interpreta-
tions of preliminary findings. For example, during discussion of
the Homeland Security Act of 2002 on November 22nd, 2002
Representative Dan Burton (R-Indiana) said “It is important to
remember that the absence of proof of a correlation between
vaccines and autism is far different than having a test and
proving no vaccine causation.” Since distinguishing between
correlation and causality depends on theory and sustained ob-
servation rather than a single scientific finding, maintaining an
understanding of this distinction is crucial for public policy
development. On the other hand, this can also deter action in a
democratic system. Representative Mike Doyle (D-Pennsyl-
vania) expressed such frustrations before the House of Repre-
sentatives on July 2nd, 2008 when he said “there have been de-
cades of peer-reviewed, scientific research on autism, and the
evidence is clear.” Progress in both politics and science in-
volves, at times, on taking leaps of faith toward a theoretically
based conclusion made in the necessarily perennial absence of
scientific certainty.
Organizations dedicated to advancing or serving autism re-
lated causes often articulate a purpose oriented toward science.
Sometimes this connection is obvious. For example, the mis-
sion statement of the Organization for Autism Research in-
cludes “to apply research to the challenges of autism.” The
Organization for Autism Research also provided a definition of
applied research: “In simplest terms, applied autism research is
“practical research that examines issues and challenges that
children and adults with autism and their families face every-
day.” Many organizations described providing funding for re-
search as a key goal. For example, one of the National Autism
Association’s dedicated programs is called “Progress Research”
described as follows: “Along with these services, NAA pro-
vides autism research funding, ongoing advocacy, support and
education”. Similarly, the Autism Society states “the Autism
Society advocates for multi-disciplined approaches to autism
research focused on improving the quality of life for individuals
across the autism spectrum and their families”. The Autism
Science Foundation’s mission also includes “to support autism
research by providing funding and other assistance to scientists
and organizations conducting, facilitating, publicizing and dis-
seminating autism research”. Of course, in not for profit or-
ganizations, research funding is usually preferential, going to
support research preferred by the organization’s designees. For
example, Autism’s Speaks grant program description reads,
“Autism Speaks is committing substantial effort and resources
to fund definitive research to ensure that the final definition of
ASD meets the following criteria…”
As was found in the legislative testimony, focal points of
discussion of scientific findings related to autism included
prevalence statistics. For example, Unlocking Autism reported
“the number of children diagnosed with autism has increased
exponentially since our children were diagnosed back in the
late 90’s and the inception of UA”. Similarly, the Autism Coa-
lition reported findings from Centers for Disease Control and
Prevention that “assuming the prevalence rate has been constant
Copyright © 2013 SciRes. 5
over the past two decades, we can estimate that about 730,000
individuals between the ages of 0 to 21 have an ASD”. Organi-
zations’ materials also include more general allusions to preva-
lence such as National Autism Association’s goal of “raising
awareness about the autism epidemic and the environmental
components that have contributed to the rise in cases.”
Organizations understood themselves as brokers of scientific
insights, helping the general public to determine research qual-
ity. Autcom states this simply in declaring “when using any
source of information about autism, it is vital to enquire what
that source considers autism to be”. As an encouraging indica-
tion of both democratic discourse and—and least potentially—
protection of scientific objectivity, such assertions were also
found in organizations with dramatically different goals and
understandings of autism than those of Autcom. For example,
the Autism Society describes itself as “the leading source of
trusted and reliable information about autism”. Similarly, Au-
tism United states “by becoming a quality resource of informa-
tion, Autism United allows millions of people to develop a
better understanding of Autism and what people are experienc-
ing.” The National Autism Association also articulates a key
responsibility as “providing our members and community with
the latest information pertaining to research, education, legisla-
tion, safety, and therapy and treatment trends”. ASAT describes
this purpose even more explicitly in saying “our mission is to
educate parents, professionals, and consumers by disseminating
accurate, scientifically-sound information about autism and its
treatment and by combating inaccurate or unsubstantiated in-
Other organizations express no intention toward scientific
neutrality. As was the case with the congressional discourse
statements of this sort most often connect to science an organi-
zation perceives as unfairly discredited or ignored. For example,
example Unlocking Autism states “we educate the general pub-
lic on the issues of autism, as well as work to provide educa-
tional information regarding the safety of vaccines, which we
believe could provide an environmental trigger for a cohort of
these children”. Similarly, Safeminds articulates the goal to
“shift research focus from genetics to environment”. On a dif-
ferent issue, but taking a similar tack, Autism Speaks expresses
deliberate intention with regard to the science of psychology in
stating “Autism Speaks is concerned that planned revisions to
the definition of autism spectrum disorder (ASD) may restrict
diagnoses in ways that may deny vital medical treatments and
social services to some people on the autism spectrum”.
Organizations also included statements of which voices were
welcome participants in their deliberations about science and
public policy relating to autism. Many organizations asserted a
relatively broad base of issue stakeholders. For example, the
Organization for Autism Research explained “the identification
of priorities for OAR’s research will be undertaken with focus
groups comprised of parents, educators, clinicians, and leading
authorities whose life work is the promotion of autism research
and the dissemination of information to the autism commu-
nity.” Other times, limits on participation are expressed. For
example, Autcom states “we welcome the participation of all
family membe rs, people with autism/PDD, caring professionals,
and other friends who wish to implement, not debate, the right
to self-determination by hearing and heeding the voices of peo-
ple with autism”.
Also akin to the legislative discourse are statements which
express frustration with or state an intention to address the
(perceived) slow pace at which scientific research is being dis-
seminated to the general public. For example, “Unlocking Au-
tism was founded in February of 1999 by two mothers and a
grandmother who came together for one primary purpose—to
obtain information about how to help children with autism and
to get that information as quickly as possible to the parents of
newly diagnosed children”. Generation Rescue puts it some-
what more bluntly by stating “Generation Rescue brings to your
attention scientists, physicians and community members who
believe in recovery and are powerful advocates for families
living with autism”. This responsibility also extends for some
organizations to explicitly mandating how scientists funded by
organizations disseminate the results of their work. For exam-
ple, Autism Speaks requires posting on PubMed because “once
posted in PubMed Central, results of research become more
accessible, prominent, and integrated, making it easier for sci-
entists worldwide to pursue autism research”. Ultimately, from
the perspective of some of the organizations, fundamental un-
derstandings about knowledge and expertise are questioned. As
Autcom puts it, “many sources demonstrate a condescending
attitude that rules out any possibility of learning from and with
the real experts: people who have autism”.
As Debra Stone described, paradox defines policy making
(Stone, 2001). One such paradox involves the tension in de-
mocratic politics between the responsibility to ensure the pro-
tection of unpopular science while respecting a boundary be-
tween science and politics which in the ideal firmly separates
politics from the objectivity of science. The most passing re-
flection on the history of the twentieth century reveals the po-
tential of both reliance on scientific objectivity and the politici-
zation of science to at best set progress back and at worst lead
to social injustice. In the case of autism related politics in the
United States, negotiation of this paradox is demonstrated by
the issue of thimerosal in vaccines. Intriguingly, the less popu-
lar science relied most ardently on the traditional hallmarks of
scientific reputation.
Another paradox found in the roles of science in autism re-
lated policy involved the paradox of participation. Good prac-
tice in both democracy and science involves a broad basis of
participation in which power of voice is ideally connected to
the merit of the argument. Of course, both realms tend toward
cementing of norms and power tied to money rather than evi-
dence or persuasion. In part in response to the default norms
which mainstream organizations engage as unquestioned truth,
other autism related organization tend to advocate overt restric-
tion participation in scientific discussion even while insisting
that their voices should be better represented in autism policy
discourse. The paradox strongly relates to the definition of sci-
ence and the degree to which distinctions between basic and
applied science have become more complicated in modern re-
search. It is also a reflection of the expectation that public enjoy
increased involvement in the articulation of scientific questions.
Finally, examination of use of science in autism related pol-
icy discourse turned up extremely limited discussion coming
from the perspective of rights of individuals with autism, par-
ticularly outside of organizations explicitly committed to neu-
rodiversity. The legislative discourse included no discussion of
neurodiversity and limited discussion of rights. The discussion
of rights that was found in the legislative discourse was gener-
Copyright © 2013 SciRes.
Copyright © 2013 SciRes. 7
ally set in opposition to science. Entitlements such as education
or social services were mentioned as other important priorities
needed for individuals with autism that should also be attended
to while society waits for answers about autism. Typically such
discussion was exclusively about children with autism and their
nuclear families. Given the decades-long history of rights based
disability policy, the lack of such discussion in autism related
policy discourse could be considered surprising, if not, disap-
pointing. On the other hand, in discourse relating to specifically
the role of science in autism related policy, this circumstance
could be considered less discouraging and, instead, a recogni-
tion that normative elements of public policy, such as the pro-
visions for protecting the rights of historically oppressed indi-
viduals lies beyond the realm of science. In the end, the interac-
tive goal of science and democracy should be mutual rein-
forcement and improvement.
A key role of science in political discussion involves estab-
lishing a circumstances as either a new threat to (or opportunity
for) society or a transcendent human challenge recently turned
intolerable as a result of new discovery. Policy can, of course,
also be made in response to changing norms and values, how-
ever, in such cases (social) science’s role is interpreted as more
exclusive to organizing, interpreting and communicating in-
formation about such changes, rather than directly such changes
in most positivist interpretations of science3. In the case of au-
tism related policy, science was most frequently employed both
in legislative discourse and in organizations documents in such
a manner in order to argue that the incidence or prevalence of
autism has increased dramatically in recent decades. Sometimes,
such arguments include references to specific studies and scien-
tists. More often the challenge was discussed as a matter of sci-
entific consensus. As time goes on, this aspect of the interaction
between science and politics is likely to become increasingly
tense in autism related policy discourse. In part this will be due
to more explicitly scientific discussion such as the revision of
the DSM.
The author wishes to thank Evan Webber and Lorena Ro-
bertson for their assistance with coding for this project.
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3Other approaches (such as action research) embrace a distinct role for the
social sciences involving a more activist approach to defining social norms
and values.