The American Journal of Bioethics

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Ethical Advocacy Across the Autism Spectrum:

Beyond Partial Representation

Matthew S. McCoy, Emily Y. Liu, Amy S. F. Lutz & Dominic Sisti

To cite this article: Matthew S. McCoy, Emily Y. Liu, Amy S. F. Lutz & Dominic Sisti (2020) Ethical
Advocacy Across the Autism Spectrum: Beyond Partial Representation, The American Journal of
Bioethics, 20:4, 13-24, DOI: 10.1080/15265161.2020.1730482

To link to this article: https://doi.org/10.1080/15265161.2020.1730482

Published online: 24 Mar 2020.

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THE AMERICAN JOURNAL OF BIOETHICS
2020, VOL. 20, NO. 4, 13–24
https://doi.org/10.1080/15265161.2020.1730482

TARGET ARTICLE

Ethical Advocacy Across the Autism Spectrum: Beyond Partial Representation

Matthew S. McCoy , Emily Y. Liu , Amy S. F. Lutz, and Dominic Sisti
University of Pennsylvania

ABSTRACT KEYWORDS
Recent debates within the autism advocacy community have raised difficult questions about Autism; ASD; disability;
who can credibly act as a representative of a particular population and what responsibilities representation
that role entails. We attempt to answer these questions by defending a set of evaluative
criteria that can be used to assess the legitimacy of advocacy organizations and other non-
electoral representatives. With these criteria in hand, we identify a form of misrepresentation
common but not unique to autism advocacy, which we refer to as partial representation.
Partial representation occurs when an actor claims to represent a particular group of people
but appropriately engages with only a subset of that group. After highlighting symbolic and
substantive harms associated with partial representation, we propose several strategies for
overcoming it.

INTRODUCTION and “every issue has its own warring camps”(Pitney

Autism spectrum disorder (ASD) is not a single con-
dition but a group of complex neurodevelopmental
disorders characterized by patterns of repetitive
behavior and difficulties with social interaction and
communication (NINDS 2018). As the National
Institute of Neurological Disorders and Stroke has
emphasized, “the term ‘spectrum’ refers to the wide
range of symptoms, skills, and levels of disability in
functioning that can occur in people with
ASD”(NINDS 2018). Some autistic adults1 are able to
work and live independently or within supportive
environments, while others require high levels of care
and support. Although it is difficult to arrive at pre-
cise estimates, roughly one third of the approximately
3.5 million people with ASD in the United States are
believed to have intellectual disabilities and a similar
number are believed to be nonverbal (Baio 2018;
Buescher et al. 2014; Rose et al. 2016).
The heterogeneity of the autistic population has
fueled debates about funding and policy priorities for
ASD. As John Pitney writes in The Politics of Autism,
“nearly every detail of autism policy is contentious,”
2015, 13). In recent years, particularly prominent fault
lines have emerged between autistic self-advocates and
parents of autistic children, especially parents of “low-
functioning” autistic children—that is, children with
intellectual disability, severe difficulties in language
and communication, and maladaptive and self-
injurious behaviors, requiring high levels of supervi-
sion, support, and services.2
Self-advocates typically view autism not as a disease
that needs to be treated or cured but as form of neu-
rodiversity that should be “embraced and accom-
modated.” (Baker 2) Accordingly, they tend to focus
their advocacy efforts on reducing stigma around aut-
ism and promoting increased opportunities and
accommodations for autistic people. By contrast,
parents of autistic children with severe disabilities are
more likely to view autism through a biomedical lens
and to support the development of behavioral and
medical interventions to treat symptoms of the condi-
tion (Liu 2017; Orsini 2012). There are notable excep-
tions to these tendencies. Some parents embrace the
idea of autism as form of neurodiversity while some

CONTACT Matthew S. McCoy mmcco@pennmedicine.upenn.edu University of Pennsylvania, 423 Guardian Drive, 14th Floor, Philadelphia, PA
19104-6243, USA.
1
Throughout the article we use identity-first language (e.g., autistic person, autistic adult), which tends to be preferred by autistic self-advocates, rather
than person-first language (e.g., person with autism), which tends to be preferred by caregivers and family members (Haller 2016). Our intention is to
respect the preferences of autistic self-advocates engaged in discussions about representation, though we do not mean to suggest that either type of
terminology is categorically preferable.
2
The terms “high-functioning” and “low-functioning” have historically defined categories of autism for research and policy. More recently, however, there
has been increasing concern that these terms may be stigmatizing and that they reduce the diversity of abilities and challenges associated with the
spectrum to a single dimension. As such, we avoid using these terms.
ß 2020 Taylor & Francis Group, LLC
14 M. S. MCCOY ET AL.
self-advocates reject the concept of neurodiversity and
support the search for a cure to autism (Haney 2018;
Ortega 2009). For the most part, however, the so-
called “autism wars” have pitted self-advocates
against parents.
Over time, these competing perspectives on ASD—
one associated with self-advocates and one associated
with parents—have become bound up with questions
about which individuals or organizations can legitim-
ately claim to represent autistic people in the pub-
lic forum.
For many years, autism advocacy was dominated
by organizations founded by parents or other family
members of autistic children. In the United States,
organizations like Cure Autism Now and the National
Alliance for Autism Research—which merged opera-
tions with Autism Speaks in 2005—pursued agendas
focused on supporting biomedical research into treat-
ments and potential cures for autism. These parent-
led advocacy organizations drew intense criticism
from self-advocates and others for failing to include
autistic people in their leadership and for promoting a
stigmatizing “pro-cure” agenda (Krcek 2013). While
Autism Speaks removed the word “cure” from its mis-
sion statement in 2016 and now has two autistic peo-
ple serving on its board of directors, it continues to
be opposed by many self-advocates who argue that
the organization’s policies “increase stigma and create
barriers to the inclusion of autistic people in our
communities” (“Before You Donate to Autism Speaks,
Consider the Facts,” n.d.; “For the Record” n.d.).
Responding in part to concerns about parent-led
organizations, an autistic self-advocacy movement
began to emerge in the 1990s (Ortega 2009). Since
then, autistic self-advocacy organizations have grown
in prominence in both the US and Europe. Although
self-advocacy organizations have been described as
being run “by and for” autistic people, they have been
sharply criticized by some parents for failing to recog-
nize challenges faced by others within the broader
autistic population—particularly those with severe
intellectual disabilities and high support needs—and
for opposing policies aimed at addressing those chal-
lenges (Haney 2018, 66).
Although these debates in the autism advocacy
community have been documented in the popular
press and academic literature, they have received little
in-depth conceptual and normative analysis. It is not
surprising, then, that accounts of these debates con-
tinue to be dogged by conceptual ambiguities.
Particularly striking is the ambiguity surrounding the
notion of representation itself. While ideas about
representation are frequently invoked by commenta-
tors on the disputes between self-advocates and
parents—and, indeed, by the parties to these dis-
putes—little effort has been made to clarify what rep-
resentation entails in this context, what the standards
of good representation are, and what harms or wrongs
result from failure to live up to those standards.
In this article, we aim to address these areas of
ambiguity by offering a normative analysis of political
representation of autistic people by nonelected advo-
cates and advocacy organizations. Drawing on recent
work in political philosophy, we show why representa-
tion by nonelected actors can be a valuable comple-
ment to more familiar forms of electoral
representation, and we defend a set of evaluative crite-
ria that can be used to assess the performance of non-
electoral representatives. With these criteria in hand,
we analyze a particular form of misrepresentation
common though not unique to autism advocacy,
which we refer to as partial representation.
Partial representation occurs when an actor claims
to represent a particular group of people, but appro-
priately engages with only a subset of that group. In
this context, the term “partial representation” is
intended to have a dual meaning, referring both to
the fact that the putative representative appropriately
engages with only a part of her constituency and to
the fact that the representative demonstrates partiality,
or favor, toward this subset of the constituency. We
show that the consequences of partial representation
can involve more than a failure to realize the goods
associated with representation and can, in fact, include
both symbolic and substantive harms. Finally, we pro-
pose strategies for overcoming partial representation.
Before turning to these concerns, however, we
begin with a closer look at how debates about repre-
sentation have arisen within the autism community
around particular policy issues, focusing on examples
involving housing and community integration as well
as wandering prevention. We focus on these issues
not simply because they have proven to be conten-
tious, but because they illustrate how different lived
experiences can shape different perspectives about the
needs of autistic people.
POLICY EXAMPLES
Historically, people with significant intellectual and
developmental disabilities were housed in institutions.
However, well-documented patterns of abuse and neg-
lect that proliferated in overcrowded, underfunded,
and understaffed institutions along with growing

concerns about the costs of maintaining institutions
eventually prompted a shift away from institutional-
ization and toward community-based housing and
services for people with intellectual and developmental
disabilities (Mandell 2017). While the move toward
community integration has been widely embraced by
autistic people as well as parents and other caregivers,
it has given rise to debates about what counts as living
“in the community.”
In the US, a significant portion of services for indi-
viduals with intellectual and developmental disabilities
is paid for through Medicaid home and community-
based services (HCBS) waiver programs. These pro-
grams allow states to use Medicaid dollars to provide
services for people with disabilities and older adults in
home and community-based settings rather than insti-
tutions. Although HCBS waivers first became available
in 1983, they became the subject of heightened con-
troversy in 2009 when the Centers for Medicare &
Medicaid Services (CMS) announced that it would
publish regulations defining what types of environ-
ments would qualify as home and community
based-settings.
Following the CMS announcement, a group of self-
advocates led by the Autistic Self-Advocate Network
(ASAN), Self-Advocates Becoming Empowered, and
the National Youth Leadership Network came
together to publish a position paper entitled “Keeping
the Promise: Self Advocates Defining the Meaning of
Community Living” (Keeping the Promise 2011). The
paper argued that, “a home should not be considered
‘in the community’ if more than four unrelated people
live there,” and rejected “gated communities, farm-
steads, and clusters of group homes—even those that
include both people with and without disabilities”
(Keeping the Promise 2011, 6–7). Waiver recipients,
the paper argued, should only be permitted to live in
small, fully integrated settings such as “apartments,
houses, condominiums, trailers” (Keeping the Promise
2011, 7).
The authors of “Keeping the Promise” describe the
paper as being presented from “the stand point of
self-advocates.” However, they also describe a “broadly
inclusive” process that led to the drafting of the paper,
which included a 25-person summit of self-advocates
with intellectual and developmental disabilities, and
interviews with persons from “a wide array of differ-
ent backgrounds, experiences and identities” who
“differed not only in the types of disabilities and
accommodations, but also in their languages, their
incomes, their religious beliefs, their sexual orienta-
tions, their mode of communication, their races and
THE AMERICAN JOURNAL OF BIOETHICS 15
ethnicities and every other manner of diversity”
(Keeping the Promise 2011, 4). Moreover, ASAN
describes its mission as working to ensure “that the
voices of Autistic people are heard in policy debates
and the halls of power” and to “advocate specific pol-
icy positions on issues of importance to Autistic peo-
ple and others with disabilities” (Autistic Self
Advocacy Network n.d.). In other words, the organ-
ization presents itself as speaking on behalf of autistic
and disabled people generally and not self-advocates
in particular. Thus, audiences could reasonably inter-
pret the position paper as attempting to make a state-
ment on behalf of all autistic people.
However, not all members of the autism commu-
nity endorsed the conclusions of “Keeping the
Promise.” In particular, several parents of autistic chil-
dren with limited communication skills, specific sen-
sory needs, and maladaptive and self-injurious
behavior argued that planned communities were the
best environments for their children, allowing for
greater supervision and safety measures, and rejected
the notion that these settings cannot constitute genu-
ine communities (Lutz 2015). During the housing
debate, this perspective was reflected in a 2013 survey
conducted by Autism Speaks. Nearly half the care-
givers surveyed believed that a planned community
would be the “ideal type of home” for their loved
ones (“National Housing Survey” 2013). Nor was this
view limited to caregivers. Nearly a third of autistic
individuals participating in the Autism Speaks survey
identified planned communities as one of their “most
preferred” housing styles.
These opposing views came to a head when, the
same week that Autism Speaks released the results of
its housing survey, the co-founder of the organization,
Suzanne Wright, penned an op-ed announcing plans
for a national policy summit in Washington, DC. The
aim of the forum was to convene advocates and policy
makers to discuss autism policy issues. Wright’s op-
ed, which described autism as a “monumental health
crisis” and a “national emergency,” drew widespread
criticism from self-advocates and led John Elder
Robison, an autistic adult who had served on Autism
Speaks’ Science and Treatment Boards, to sever his
ties with the organization (Robsinson 2013; Wright
2013). In its response to the op-ed, ASAN not only
criticized Autism Speaks’ support for “segregated
housing and service-provision,” but leveled a more
fundamental challenge to Autism Speaks’ claims to
represent the interests of autistic people (Autistic Self
Advocacy Network 2013). The ASAN response
accused Autism Speaks of “a long and continued
16 M. S. MCCOY ET AL.
pattern of exclusion of Autistic voices from its work
on autism,” and asked, “[i]s this the organization that
we want speaking on our behalf? We think not”
(Autistic Self Advocacy Network 2013).
This clash was not the first time that debates about
autism policy led to more fundamental questions
about representation in the autism community. In
February 2011, the Interagency Autism Coordinating
Committee (IACC) wrote a letter to Secretary of
Health and Human Services Kathleen Sebelius, alert-
ing her to the fact that “every year, an unknown num-
ber of people with ASD are killed or injured as a
result of … accidents that occur as a result of wan-
dering/eloping or otherwise becoming lost”
(Interagency Autism Coordinating Committee 2011,
1). Among other requests, the IACC asked the
Centers for Disease Control and Prevention (CDC) to
propose a medical code for this behavior, which
“could be used to collect data … and help validate
insurance coverage for personal locating devices and
related expenses for families who are currently unable
to afford them” (Interagency Autism Coordinating
Committee 2011, 3).
A month after the IACC letter was published,
ASAN president Ari Ne’eman posted an action alert on
the organization’s website urging readers to “Tell the
CDC ‘No’ on Abuse-Enabling ‘Wandering’ Code!”
(Ne’eman 2011). He argued that the new code would
“make it easier for school districts and residential facili-
ties to justify restraint and seclusion in the name of
treatment” and posited that “wandering” (quotation
marks in the original) was the only way non-verbal
children had of “trying to leave a dangerous situation”
(Ne’eman 2011). He opposed tracking devices for autis-
tic adults because they “would restrict freedom
of movement” and lead to institutionalization
(Ne’eman 2011).
The action alert prompted pushback from parents
of autistic children, some of whom questioned not
only Ne’eman’s position on the code but ASAN’s sta-
tus as a representative of autistic people. Matthew
Joseph, the father of three autistic daughters and the
author of the Autism Jabberwocky blog, wrote that
the code “isn’t a controversy for anybody except the
self-appointed guardians of autism’s virtue, ASAN … I
have to wonder (yet again) just who ASAN thinks
they are advocating for. It certainly isn’t the needs of
the majority of people (or children) who have autism”
(Joseph 2011). Another parent wrote that “to believe
that children and adults with severe autism who wan-
der away from their homes and into dangerous situa-
tions like traffic or into the woods are simply
exercising their right to engage in autonomous behav-
ior … reflects an incredibly inadequate grasp of
the problem some autistic individuals have”
(Wombles 2011).
For practical purposes, this debate ended when the
CDC granted the IACC’s request and proposed a
wandering code to the ICD-9-CM Coordination and
Maintenance Committee. The code became effective
in October 2011, and ASAN has made no public
attempts to challenge it. However, debate around
HCBS waivers remains ongoing. CMS released its
Final Rule on HCBS waivers in January 2014, laying
out “a more outcome-oriented definition of home and
community-based settings, rather than one based on a
setting’s location, geography or physical character-
istics” (CMS 2014, 2). The rule established no max-
imum occupancy limits, no density restrictions, and
no proximity rules on home and community-
based settings.
Yet the Final Rule is not the last word on HCBS
waivers. Individual states have until 2022 to develop
policies compliant with the Final Rule, and several
states have begun to develop policies that go beyond
the federal guideline by imposing restrictive limits on
the types of settings open to waiver recipients (Lutz
2019). These policies limit housing options available
to waiver recipients, often prohibiting intentional
communities, campuses, and farmsteads. As states
continue to consider these and other autism policy
issues and to solicit the views of stakeholders in the
autism advocacy community, questions about who
represents the interests of autistic people and what
those interests are promise to remain contentious.
NONELECTORAL REPRESENTATION
These debates between parents of autistic children and
autistic self-advocates raise fundamental questions
about representation in the autism community. What
gives any particular individual or organization the
right to say that it represents autistic people? What
sorts of obligations does a representative of autistic
people have toward those for whom it claims to
speak? To answer these questions, we turn to recent
work in political philosophy that explores the phe-
nomenon of nonelectoral representation—that is, rep-
resentation by actors that have not been formally
elected by the groups on whose behalf they claim to
speak and act. This literature offers useful resources
for thinking through debates about representation
within the autism community. At the same time, we
argue, unique features of autism advocacy challenge

certain assumptions about nonelectoral representation
and show the need to refine proposed standards for
assessing the practice.
The Value of Nonelectoral Representation
Before analyzing issues particular to representation in
the autism community, we begin with a general defin-
ition of political representation and an account of the
potential benefits of nonelectoral representation.
Following Hannah Pitkin, we define political represen-
tation as “substantive acting for others” (Pitkin 1967,
209). Political representatives, on this account, are
actors that “speak, advocate, symbolize, and act on the
behalf of others in the political arena” (Dovi 2018).
Thus, although some theorists draw a distinction
between advocacy and representation, on the definition
we use here, advocacy is one of the activities performed
by representatives (Schweber 2016). We also follow
Pitkin in assuming two basic normative standards for
political representation, namely, representatives ought
to act “in the interest of the represented, in a manner
responsive to them” (Pitkin 1967, 209).
While Pitkin assumed that formal elections were
necessary to ensure responsive representation, subse-
quent theorists have called this assumption into ques-
tion (Kuyper 2016; Montanaro 2012; Saward 2009).
To be sure, elections do function as mechanism for
encouraging representatives’ responsiveness to their
constituents. Knowing that they must face election
gives elected representatives a powerful incentive to
respond to constituents’ interests. And if representa-
tives are not judged to be sufficiently responsive to
the interests of their constituents, they can be
replaced. Coupled with the institution of universal
adult suffrage, electoral representation offers a means
of institutionalizing the all-affectedness principle—a
cornerstone of many normative justifications of dem-
ocracy, which states that persons affected by political
decisions ought to have a say in how those decisions
are made (Saward 2009).
Contemporary theorists of representation like
Michael Saward and Laura Montanaro accept Pitkin’s
definition of political representation and its normative
standards, but reject her idea that responsive political
representation requires elections. As Saward puts it,
“substantive acting for others is prior to the means of
achieving it, and in certain cases and contexts elect-
oral means may be inferior to others” (Saward 2009,
4). In other words, it does not follow from Pitkin’s
definition of political representation that only elected
officials can represent others. Nor, as an empirical
THE AMERICAN JOURNAL OF BIOETHICS 17
matter, is it true that elected representatives always do
a better job than representatives who are not elected.
One of the key structural limitations of electoral rep-
resentation is that popular elections tend to lead to the
marginalization of persistent minority groups that are
too small or too geographically dispersed to demand
the attention of elected officials. Seen from the perspec-
tive of the political system, this kind of systematic mar-
ginalization shows why elections alone are often
insufficient to realize the all-affectedness principle.
Because nonelectoral representatives don’t face the
same constraints and incentives that electoral represen-
tatives do, they can “do things that [electoral represen-
tatives] cannot do (or cannot do so readily)” (Saward
2009, 8). Rather than attempting to advance the inter-
ests of a diverse geographically defined constituency,
nonelectoral representatives can focus on advancing the
interests of a smaller and more homogenous popula-
tion that shares certain characteristics. As Saward puts
it, nonelectoral representatives can help to “give voice
to the affected by opening up new lines and styles of
representation, which can be more sensitive to intensity
of preference and particular lived experiences” (Saward
2009, 8). Adopting a spatial metaphor, Montanaro
writes that nonelectoral representation can “fill the
gaps in electoral representation” by amplifying the
interests of groups that would otherwise go overlooked
in the policy-making process and thereby giving these
groups a “political presence” that they would not other-
wise have (Montanaro 2012, 1098).
For all the debates about representation within the
autism community, we take it that this general
account of political representation should be relatively
uncontroversial among parties to those debates. In
other words, we assume that parents and autistic self-
advocates would agree that representation involves
speaking and advocating for others in the public
forum and that representatives ought to act in the
interests of and be responsive to those they represent.
In addition, we assume that most parties to debates
about representation within the autism community
accept that nonelected actors can, in principle, speak
on behalf of autistic people. The major sources of dis-
agreement, to which we now turn, involve determin-
ing which particular actors who purport to represent
autistic people can legitimately claim to do so.
Assessing the Legitimacy of Nonelectoral
Representatives
How should we determine which actors can legitim-
ately claim to serve as nonelectoral representatives of
particular groups?
18 M. S. MCCOY ET AL.
Laura Montanaro proposes two criteria that are
rooted in Pitkin’s norms of political representation
but adapted to the particular context of nonelectoral
representation. The first criterion is that nonelectoral
representatives ought to provide a “political presence”
for their constituents. In practice, this means that rep-
resentatives must faithfully articulate the interests of
the constituents they claim to represent. When done
on behalf of groups whose interests are marginalized
in electoral politics, this kind of political presence giv-
ing helps narrow “the difference between formal vot-
ing equality and what is normatively required by the
affected interests standard.”(Montanaro 2012, 1098)
The second criterion is that nonelectoral representa-
tive must empower constituents to authorize their
actions and hold them accountable.
While Montanaro’s two criteria offer a useful start-
ing point for thinking about how we ought to assess
the legitimacy of nonelectoral representatives, attempt-
ing to apply them directly to disputes about the repre-
sentation of autistic people proves difficult. Consider
first the criterion that representatives ought to provide
a political presence for autistic people by faithfully
articulating their interests. The chief difficultly here is
that self-advocates and parents disagree, often pro-
foundly, about what the underlying interests of autis-
tic people are. Thus, simply invoking this criterion
would do little to resolve debates about representation
within the autism community. This challenge does not
imply that Montanaro’s political presence criterion
ought to be abandoned, but it does imply that it needs
to be amended to suit the context of autism advocacy,
or indeed, any context where there is deep disagree-
ment about what the interests of a particular popula-
tion are.
One way to amend Montanaro’s criterion is to sup-
plement it with the procedural requirement that non-
electoral representatives must take demonstrable
measures to ensure that they properly understand the
interests of the constituents for whom they speak. The
rationale for this procedural amendment to
Montanaro’s criterion is that while debates about the
interests of different groups often prove intractable, it
is easier to find agreement on the sorts of measures
that a representative should take to understand con-
stituent interests. Thus, by showing the steps they
have taken to understand the interests of their constit-
uents, representatives can offer audiences indirect evi-
dence that they are faithfully articulating the interests
of those constituents.
This is, in essence, what ASAN and its partners did
in describing the consultative exercises that informed
the recommendations in “Keeping the Promise.”
Rather than simply asserting that their recommenda-
tions were in the best interest of autistic people, they
provided an account of the deliberative processes they
undertook to understand the full range of interests of
those for whom they spoke.
There remains a question of how Montanaro’s first
criterion, thus amended, ought to be applied in the
context of autism advocacy. Specifically, what sorts of
measures should be regarded as contributing to
understanding constituent interests? Because autism is
a neurodevelopmental condition that affects cognitive
functioning, it is reasonable to believe that only autis-
tic people fully understand the subjective experience
of autism (Chamak and Bonniau 2013). It is also clear
that autistic people have unique understanding of the
harms, stigma, and discrimination that they confront.
For these reasons, the involvement of autistic people
through a variety of consultative, deliberative, and
participatory mechanisms should be regarded as a
critical and necessary measure for understanding the
interests of autistic people. Such mechanisms should,
moreover, include options for nontraditional modes
of communication like text-based internet chats,
which may be better suited to autistic people with
communication difficulties (Nicolaidis et al. 2011).
Yet it would be a mistake to regard engagement
even with a wide range of autistic people as sufficient
for understanding the interests of autistic people gen-
erally. This conclusion rests on two premises. The first
is that, even given an appropriate range of participa-
tory mechanisms, a significant portion of autistic peo-
ple lack the capacity to engage in consultation and
deliberation about their interests. The second is that
the experiences, needs, and interests of this portion of
autistic individuals are likely to differ systematically
from those of autistic people able to participate in
deliberation. Relying, therefore, on engagement with
autistic self-advocates to understand the interests of
the broader autistic population carries a risk of bias.
In light of this risk, we propose that where an
organization endeavors to represent persons, some of
whom lack the capacity to engage in deliberation, it
must also take proactive measures to understand their
interests. What constitute appropriate measures will
depend on the nature of the constituency being repre-
sented. But in the case of ASD, such measures might
include hosting in-person or online deliberative
forums where autistic self-advocates are able to dis-
cuss and debate the merits of different policy pro-
posals with others who have firsthand insights into
the needs and experiences of autistic people who are

unable to participate in these discussions. These might
include parents of autistic children who can speak to
the daily routines and challenges of their children;
care providers who work with autistic people with
severe disabilities and high support needs and who
can speak to the effects and limits of different types of
therapies and interventions; and researchers who
study ASD as well as the delivery of health and social
services for autistic people. These wider forms of
engagement need not exclude autistic people who can-
not speak for themselves. As Clifford Simplican
notes, there may be instances in which it is possible
for non-disabled family members to advocate “with
their disabled family members in order to portray the
interdependency of their interests” (Clifford 2012).
But through these wider forms of engagement, a rep-
resentative organization guards against the risk that its
understanding of what is best for autistic people is
biased toward those persons with the capacity to
deliberate about their own interests and strengthens
its claim to credibly understand the full range of
constituent interests.
We now turn to Montanaro’s second criterion,
namely, that representatives ought to empower their
constituents to authorize and hold them accountable
for their actions. This idea is, of course, central to our
understanding of electoral representation, where elec-
tions serve as the primary mechanism by which con-
stituents authorize their representatives and hold them
accountable. Authorization and accountability are less
straightforward, but by no means impossible for non-
electoral representatives. As Montanaro points out,
nonelectoral representatives can seek discursive
authorization for their agendas via “allegiance and
approbation, expressed in both actions and words”
(Montanaro 2017, 83). Constituents can signal their
approval of a representative by, for instance, signing
petitions, attending rallies, joining the representative’s
social media groups, or donating money. Conversely,
people can hold representatives accountable for their
decisions by withholding or withdrawing these forms
of support or by publicly challenging the representa-
tive who purports to speak on their behalf.
Montanaro is sensitive to the fact that some groups
might not be capable of authorizing nonelectoral rep-
resentatives or holding them accountable. For
instance, she suggests, citizens living under a repres-
sive regime might not be able to communicate their
views to outside human rights groups that seek to
represent their interests to the international commu-
nity (Montanaro 2017). In these situations,
Montanaro grants that representatives who are not
THE AMERICAN JOURNAL OF BIOETHICS 19
authorized by and not directly accountable to the pop-
ulations they seek to represent might still benefit those
populations by satisfying the first criterion and giving
their interests a political presence. Nonetheless, she
argues that we ought to be cautious of this form of
unauthorized and unaccountable representation,
which she refers to as “surrogate representation.” As
she puts it, “it is dangerous to render others politically
present without their authorization, both because we
might misrepresent people and their interests and
undermine a people’s autonomy and capacity to make
decisions for themselves, including decisions about
who best represents them” (Montanaro 2017, 65). For
Montanaro, this conclusion is supported by the
assumption that there are few imaginable situations
where a constituency “would have absolutely no cap-
acity to communicate its approval or disapproval of a
claim” (Montanaro 2017). However, both this assump-
tion and its implications for how we understand the
accountability/authorization criterion need to be
rethought in the context of autism advocacy.
For a population all of whose members are capable
of expressing or withholding authorization, it seems
clear that would-be representatives ought to seek their
authorization. Failure to do so would, as Montanaro
warns, risk misrepresenting the group’s interests and
frustrating their capacity to make decisions for them-
selves. On the other hand, for a population none of
whose members are capable of expressing or with-
holding authorization, it would be absurd to ask rep-
resentatives to seek authorization from those for
whom they speak. The most we could expect in these
situations is surrogate representation.
What is challenging about autism advocacy—
because ASD is a spectrum disorder—is that the autis-
tic population does not fit neatly into either of these
categories. Some autistic people are fully capable of
expressing or withholding authorization in any setting.
Some have limited capacity to express authorization.
And given that capacity is decision relative, whether
or not an intellectually disabled autistic person is able
to express authorization in a particular instance will
depend both upon his or her level of intellectual dis-
ability and specific features of the decision at hand
(Buchanan and Brock 1989). But a significant portion
of the autistic population is incapable of expressing or
withholding authorization with respect to virtually all
of the policy issues that representatives confront.
Thus, if a representative organization seeks authoriza-
tion from and accountability to autistic people, it
again runs the risk of bias toward the interests of
20 M. S. MCCOY ET AL.
those members of the population who have the
capacity to authorize and hold accountable.
One way that representatives can guard against this
risk of bias is by seeking authorization from and
accountability to not just autistic people but to fami-
lies, caregivers, and others with firsthand knowledge
of the needs of autistic people with severe disabilities.
By subjecting their claims and policy proposals to
debate and deliberation among this broader group,
representatives can help to ensure that they are not
unwittingly neglecting or undermining the interests of
some of those autistic people who lack the capacity to
authorize and hold accountable. In Montanaro’s ter-
minology, this proposal would essentially involve
embedding a measure of surrogate representation on
behalf of such autistic people within a representative
relationship between a nonelectoral representative and
the wider autistic population. As such, this proposal
challenges the presumption that direct ties of account-
ability and authorization between a representative and
her constituency are always normatively preferable to
surrogate representation and that surrogate represen-
tation ought eventually to transition to representation
based on direct ties of authorization and accountabil-
ity. For in the context of autism, continued surrogate
representation on behalf of autistic individuals who
are unable to participate in direct representation is
justified as a safeguard against bias toward the inter-
ests of individuals who are.
The proposal to embed surrogate representation
within the relationship between nonelectoral represen-
tatives and the wider autistic population might seem
to reintroduce some of the same challenges we have
been discussing. For it appears we must now ask who
can credibly act as a surrogate representative for those
who cannot speak for themselves. But the issue need
not prove so daunting at this level, since having
effective surrogacy on behalf of those who cannot
speak for themselves does not require identifying a
single surrogate. As we suggest, nonelectoral represen-
tatives should seek authorization from and account-
ability to a range of those with insights into the needs
and experiences of those who cannot speak for them-
selves, each of whom might contribute to providing
effective surrogate representation on their behalf.
Thus, with respect to Montanaro’s second criterion,
we do not dispute that representatives ought to
empower the appropriate group to authorize and hold
them accountable for their actions. But we argue that
in cases where some members of the represented con-
stituency lack the capacity to exercise authorization
and accountability, representatives should, in addition
to seeking direct authorization and accountability to
members of the represented constituency, seek surro-
gate authorization and accountability on behalf of
those members of the represented constituency who
lack the capacity to speak for themselves.
It is beyond our scope in this article to review spe-
cific mechanisms of authorization and accountability.
Others have done so extensively (Dryzek and
Niemeyer 2008; Kuyper 2016). But for present pur-
poses, we note that some of the same types of engage-
ment and consultation that would allow
representatives to better understand the interests of
autistic people could also plausibly function as mecha-
nisms of authorization and accountability. In other
words, while the requirement that representatives take
measures to understand their needs of their constitu-
ents is conceptually distinct from the requirement that
representatives empower the appropriate groups to
authorize and hold them accountable, both require-
ments might be fulfilled by a similar set of deliberative
and participatory mechanisms.
PARTIAL REPRESENTATION: HARMS
AND REMEDIES
We have defended two evaluative criteria for assessing
the legitimacy of nonelectoral representation of autis-
tic people. First, representatives ought not only to
faithfully articulate the interests of their constituents
but take demonstrable measures to ensure that they
understand those interests. Second, representatives
ought to seek authorization from and accountability
to both autistic people and to those closest to and
most familiar with the needs of those who cannot
speak for themselves. Although these requirements are
conceptually distinct, they might be fulfilled via a
common set of deliberative and participatory mecha-
nisms. In this regard, the implications of our argu-
ment can be distilled to the practical imperative that
in order to claim legitimacy, representatives of autistic
people must actively engage and consult with both
autistic people and those closest to autistic people
who lack the capacity to participate in decision
making themselves.
We now turn to the normative implications of rep-
resentatives’ failure to carry out this practical impera-
tive. Montanaro uses the term “skewed representative
outcomes” to describe outcomes in which a represen-
tative “empowers its claimed constituency [to author-
ize and hold accountable] but the relationship does
not yield good outcomes for it” (Montanaro 2017,
67). Skewed outcomes can refer to outcomes that are

inconsistent with the interests of the entire constitu-
ency or outcomes in which certain “interests are over-
represented or under-represented within a claimed
constituency” (Montanaro 2017, 68). For example,
Montanaro suggests, “an organization might claim to
represent women, broadly, but its representation
might be skewed toward its white and middle upper-
class members, leaving under-represented the interests
of its disadvantaged subgroup, such as poor women”
(Montanaro 2017, 68).
The notion of skewed representative outcomes
focuses, as the name indicates, on the outcomes of
representation. In this regard, skewed representative
outcomes can be understood as a substantive failure
of representation. This failure is related to but distinct
from a procedural failure to properly engage with the
full range of one’s constituents, both to understand
their interests and to allow them to authorize and
hold the representative accountable. We refer to this
latter failure as partial representation. As mentioned
above, the term “partial” is intended to have a dual
meaning in this context, referring both to the fact that
the representative engages with only part of its
claimed constituency, and to the fact that in so doing,
the representative is partial to—or demonstrates favor
to—one part of its constituency. This notion of parti-
ality also helps to convey the fact that partial repre-
sentation varies by degree. A representative might
demonstrate a high degree of partiality by failing
altogether to engage with part of its claimed constitu-
ency, or a representative might demonstrate more
modest partiality by tending to solicit and prioritize
perspectives from one part of its constituency at the
expense of others. On this view, then, a representative
is not legitimate or partial. Rather, representatives are
more legitimate and less partial to the extent that they
are actively and appropriately engaged with the mem-
bers of their constituency (and, where necessary, sur-
rogates for members of that constituency).
Arguably, both of the autism advocacy groups
highlighted above have engaged in some degree of
partial representation, albeit in opposite ways. At least
in its early days, Autism Speaks failed to engage
appropriately with autistic self-advocates, while ASAN
has failed to engage appropriately with parents raising
concerns on behalf of their children. This is not to
say that either organization has failed to accomplish
important goals on behalf of autistic people, but that
they have demonstrated some degree of partiality
toward one part of the autistic community while pre-
senting themselves as representatives of autistic people
generally. Moreover, to say that both parent-founded
THE AMERICAN JOURNAL OF BIOETHICS 21
and self-advocacy groups have engaged in partial rep-
resentation is not to imply that their actions have
been equally consequential. As Liu notes, there is “the
significant historical precedent for incorporating the
insights of parent advocates and other stakeholders in
broad initiatives related to autism,” whereas voices of
self-advocates have traditionally been marginalized
(Liu 2017, 395). But given the growing influence of
self-advocacy organizations, this historical precedent
should not lead us to dismiss contemporary concerns
raised by parents (Matthews 2016; Perkes 2019).
Partial representation raises several concerns. First,
if we assume that effective nonelectoral representation
conveys goods to the represented group by empower-
ing them and giving their interests a political pres-
ence, partial representation deprives some group
members of these goods. On its own, the failure to
realize the goods of nonelectoral representation might
seem like a relatively minor problem, since it does not
appear to make any subgroups worse off, but this is
not the case. A second reason to be concerned about
partial representation is that representatives who
engage in partial representation can “crowd out” other
representatives that might do a better job of
adequately representing the groups in question
(Montanaro 2012). Crowding out can be formal—for
instance, a government advisory board might include
only a certain number of seats for representatives of
particular populations—but it can also happen infor-
mally when certain representatives dominate public
discourse about the needs of a particular group.
Third, to the extent that partial representation leads
to the sort of skewed representative outcomes that
Montanaro describes, it can misinform policymakers
and the public about the interests of represented
groups, leading, in turn, to suboptimal or harmful
policies. This possibility highlights the potential pit-
falls that exist alongside the promises of nonelectoral
representation. As Montanaro notes, nonelectoral rep-
resentation has the potential to fill gaps in electoral
representation by amplifying voices and concerns that
would otherwise go overlooked in the policymaking
process. But nonelectoral understanding can also dis-
tort public understanding of represented groups’ inter-
ests if it fails to convey the full range and complexity
of those interests.
Fourth, partial representation can inflict symbolic
harms on marginalized subgroups within a repre-
sented group. Ideally, an organization that represents
autistic people should help to combat prejudice and
stigma by demanding equal standing for autistic peo-
ple. But a representative organization that does not
22 M. S. MCCOY ET AL.
allow autistic people to engage in deliberation and
decision-making on an equal footing with others can
exacerbate prejudice and stigma by conveying the
message that autistic people’s own viewpoints do not
warrant recognition.
Because partial representation occurs when an actor
claims to represent the whole of a certain group but
appropriately engages with only a subset of that
group, remedying partial representation requires clos-
ing this gap between a representative’s claims and
actions. This can happen in one of two ways.
First, the representative can make its actions con-
sistent with it claims by taking steps to engage margi-
nalized subgroups within its claimed constituency. As
noted, this would involve using deliberative and con-
sultative mechanisms to understand the interests of all
constituents for which the representative claims to
speak, including engaging with people familiar with
the experiences of constituents who lack the capacity
to engage in deliberation and debate. This way of
addressing the problem of partial representation has
obvious political advantages in that it allows a repre-
sentative to speak credibly on behalf of a larger con-
stituency. But attempting to represent a larger and
more heterogenous constituency also presents chal-
lenges. In particular, the more diverse the constitu-
ency, the more difficult it may be to identify common
interests on which to build an agenda.
In cases where a group of people share a common
characteristic but are otherwise quite internally
diverse, representatives (and group members them-
selves) may rightly conclude that it makes sense to
organize representation in a more differentiated man-
ner. In such cases, the second way that a representa-
tive can remedy partial representation is by
moderating its representative claims and making it
clear that it represents only that constituency with
which it is appropriately engaged. This is not to say
that a representative which moderates its claims has
no responsibilities toward anyone other than members
of the narrower group it legitimately represents.
Representatives have certain special obligations toward
their constituents, but this does not mean that repre-
sentatives do not have general obligations toward
related groups and the broader population. The fact
that representatives have special obligation toward
their constituents would not, for instance, justify
their imposing morally impermissible harms on
other groups.
Thus, an organization that claimed to represent
only autistic people with severe disabilities would not,
by virtue of this moderate representative claim, be
justified in advocating for policies that would impose
impermissible harms on autistic people without such
disabilities. An important question for any theory of
political representation involves balancing a represen-
tative’s justified partiality in advocating for policies
that would help its constituents with its general obli-
gations not to impose certain harms on others.
Though moderating representative claims can address
the particular problem of partial representation it does
not eliminate this latter question.
In practice, representatives need not choose cat-
egorically between these two approaches to dealing
with partial representation. Instead, they might pursue
a federated model of representation where representa-
tives of particular subgroups speak on behalf of their
smaller constituency when addressing certain issues
but come together with other representatives, either
under the auspices of an umbrella organization or as
part of an ad hoc coalition, to speak as one about
issues affecting a broader group of people. There are
examples of this type of federated model in health
advocacy. For instance, the National Organization for
Rare Disorders (NORD) is made up of 280 different
rare disease organizations. NORD’s mission is to
advocate on behalf of the rare disease community
broadly, but individual organizations maintain auton-
omy to speak out on issues affecting their particular
constituency (“About Us” 2019).
A similar approach to representation may ultim-
ately be well suited to the autism community. As we
began this article by noting, people with ASD have
widely varied characteristics, skills, and abilities. That
they share a common diagnostic label is largely a
product of the way that ASD has been defined by psy-
chiatrists. Indeed, the creation of ASD as a formal
diagnostic category is a relatively recent development,
which followed several decades of attempts to
“categorize the heterogeneity in autism spectrum dis-
orders” (Grzadzinski et al. 2013). It was not until
2013 when the fifth edition of the Diagnostic and
Statistical Manual of Mental Disorders (DSM-5)
removed Rett syndrome and combined autistic dis-
order, Asperger’s disorder, pervasive developmental
disorder not otherwise specified, and childhood disin-
tegrative disorder into the single category of ASD
(Volkmar and Reichow 2013).
This is not to say that there are no issues that
impact autistic people generally or that, when it comes
to such issues, it might not be valuable to have repre-
sentatives capable of credibly speaking on behalf of
the autistic population as a whole (Kapp et al. 2013).
But for a range of other policy issues, including those

we’ve discussed here, it may be more feasible for rep-
resentatives to speak on behalf subgroups within the
broader autistic population that share a more substan-
tial set of lived experiences.
CONCLUSION
Nonelectoral representatives can play a valuable role
in modern electoral democracies by amplifying the
interests of marginalized groups. However, as recent
debates within the autism community have shown,
nonelectoral representation also raises difficult ques-
tions about who can credibly act as a representative
and what responsibilities that role entails. Our pri-
mary aim in this article has been to defend a set of
standards that can be used to evaluate representatives
in the autism community, but the standards we have
laid out are applicable to other contexts in which rep-
resented groups comprise people with a wide range of
cognitive abilities. In addition to proposing evaluative
standards for nonelectoral representation, we have
also sought to highlight the harms of what we call
partial representation and proposed different
approaches to overcoming it. The analysis we’ve
offered here can help to frame and guide future dis-
cussion about representation within the autism com-
munity. Ultimately, however, questions about how
and by whom autistic people should be represented
must be continually renegotiated by all members the
autism community as new actors and new
issues emerge.
Disclosure Statement
One author (Lutz) has a child with autism.
ORCID
Matthew S. McCoy http://orcid.org/0000-0002-5273-3877
Emily Y. Liu http://orcid.org/0000-0003-4280-9935
Dominic Sisti http://orcid.org/0000-0002-2282-9253
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