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Can We Broaden the Neurodiversity Movement Without Weakening It?
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Can We Broaden the Neurodiversity Movement Without Weakening It?:
Participatory Approaches as a Framework for Cross-Disability Alliance Building
Kristen Gillespie-Lynch1,2, Patrick Dwyer 3, Christopher Constantino4, Steven K Kapp5, Emily
Hotez6, Ariana Riccio2, Danielle DeNigris7, Bella Kofner1, & Eric Endlich8
1The College of Staten Island; City University of New York, USA
2The Graduate Center of the City University of New York, USA
3 Center for Mind and Brain; University of California, Davis, USA
4 School of Communication Science and Disorders; Florida State University
5 Department of Psychology, University of Portsmouth, UK
6 Center for Healthier Children, Families & Communities; University of California, Los Angeles,
USA
7 Department of Psychology and Counseling; Fairleigh Dickinson University, USA
8 Independent Scholar
Acknowledgements: We would like to thank all of the people who have contributed to each of
the programs described in this report. We would like to thank Chris Frka for his help with
qualitative coding of mentor/mentee feedback about Project REACH and for co-leading the
Project REACH group in the Fall of 2019. We would also like to thank Ibrahim Khan for his
insights about effective strategies to build political alliances (derived from his volunteer work for
the Bernie Sanders campaign). We would also like to thank the reviewers of this manuscript and
the editors, particularly Tara Fannon, for their exceptionally constructive feedback.
Can We Broaden the Neurodiversity Movement Without Weakening It?
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Abstract
Purpose:
We critically examine the idea of neurodiversity, or the uniqueness of all brains, as the
foundation for the neurodiversity movement, which began as an autism rights movement. We
explore the neurodiversity movement’s potential to support cross-disability alliances that can
transform cultures.
Methods/Approach:
A neurodiverse team reviewed literature about the history of the neurodiversity movement and
associated participatory research methodologies and drew from our experiences guiding
programs led, to varying degrees, by neurodivergent people. We highlight two programs for
autistic university students, one started by and for autistics and one developed in collaboration
with autistic and non-autistic students. These programs are contrasted with a national self-help
group started by and for stutterers that is inclusive of “neurotypicals.”
Findings:
Neurodiversity-aligned practices have emerged in diverse communities. Similar benefits and
challenges of alliance building within versus across neurotypes were apparent in communities
that had not been in close contact. Neurodiversity provides a framework that people with diverse
conditions can use to identify and work together to challenge shared forms of oppression.
However, people interpret the neurodiversity movement in diverse ways. By honing in on core
aspects of the neurodiversity paradigm, we can foster alliances across diverse perspectives.
Implications/Values:
Becoming aware of power imbalances and working to rectify them is essential for building
effective alliances across neurotypes. Sufficient space and time are needed to create healthy
alliances. Participatory approaches, and approaches solely led by neurodivergent people, can
begin to address concerns about power and representation within the neurodiversity movement
while shifting public understanding.
Key words: Neurodiversity; autism; stuttering; Cross-disability alliances; participatory research;
university
Can We Broaden the Neurodiversity Movement Without Weakening It?
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Introduction
“Autism is a way of being. It is pervasive; it colors every experience, every sensation,
perception, thought, emotion, and encounter, every aspect of existence. It is not possible
to separate the autism from the person--and if it were possible, the person you'd have left
would not be the same person you started with (Sinclair, 1993).”
The misconception that autism fundamentally disrupts the ability to connect meaningfully with
others was once so widespread that the first autistic people to publicly share their experiences
being autistic introduced themselves as “recovered” from autism (e.g., Kanner, 1943, Grandin,
1990; Pripas-Kapit, 2020). After weathering misconceptions about autism for decades, Jim
Sinclair, Donna Williams and Xenia Grant met for the first time in an “autistic space,” free of
non-autistic people and their expectations about how people should interact. Together Jim,
Donna, and Xenia co-founded the first autistic-led advocacy organization, Autism Network
International (ANI) in 1992 (Sinclair, 2010). Within a few years, the ideas sparked by this
initially “autistic only” alliance would inspire a dialogue between autistic people and people with
and without other conditions that would lay the foundation for a new type of civil rights
movement, the neurodiversity movement. The neurodiversity movement challenges deficit-
oriented conceptualizations of autism, reframing autism as a valuable minority identity that
needs no cure (Kapp, Gillespie-Lynch, Sherman & Hutman, 2013; Kapp, 2020).
In the late 1990s, Judy Singer (2017) and Harvey Blume (1998) coined the term
neurodiversity, or the uniqueness of all brains, based on discussions in an autistic-run online
group, InLv, that included autistic people and non-autistic allies (Dekker, 2020). The term called
forth a new “Politics of Neurodiversity” (the neurodiversity movement) by situating neurological
Can We Broaden the Neurodiversity Movement Without Weakening It?
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differences at the intersections of other minority identities and providing a framework to critique
discrimination (Singer, 2019): “Just as biodiversity is essential to ecosystem stability, so
neurodiversity may be essential for cultural stability” (Singer, 2017, loc. 1079).
In 2006, Ari Ne’eman and Scott Michael Robertson founded the Autistic Self Advocacy
Network (ASAN) to address a lack of autistic representation in dialogues about autism. In 2007,
Ne’eman led a campaign against a stigmatizing “public service campaign” framing autism as a
kidnapper (Kras, 2010). This effective campaign, which elicited support from autistic advocates
and the broader disability rights community, increased ASAN’s influence and situated the
neurodiversity movement as part of a cross-disability coalition for human rights and social
justice.1 The central premise of the current paper is that the neurodiversity movement’s rapid
expansion out from its roots in the autism rights movement fosters both within- and across-
disability alliances that can transform cultures, making them increasingly supportive of the
diversity that nourishes them.
Indeed, the term neurodiversity has taken on a life of its own, helping autistic self-
advocates and their allies identify like-minded people to band together with to challenge and
reshape public and scientific narratives about autism, research priorities, and services (e.g.,
Fletcher-Watson et al., 2019; Kapp, 2020). The neurodiversity movement inspired the emergence
of participatory approaches to autism research, wherein autistic people are meaningfully
involved in developing, enacting and disseminating research initiatives (Nicolaidis, 2012). The
idea of neurodiversity is also appealing to other disability communities. Observing the promising
impacts of neurodiversity-aligned advocacy on autism research and policy, scholars and writers
have begun to explore how neurodiversity-aligned perspectives can be applied to other
1 ASAN (2020) seeks “to advance the principles of the disability rights movement with regard to autism” by
advocating for “policy positions on issues of importance to autistic people and others with disabilities.”
Can We Broaden the Neurodiversity Movement Without Weakening It?
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conditions: e.g., stuttering, dyslexia, mood disorders, anxiety, ADHD, intellectual and learning
disabilities, and schizophrenia (Antonetta, 2007; Armstrong, 2010; Constantino, 2018; Fenton &
Krahn, 2007; Griffin & Pollak, 2009; Jamison, 1995; Wang, 2019). For example, Christopher
Constantino (2018), a stuttering researcher, clinician, stutterer, and an author of this report,
recently published a paper describing how the idea of neurodiversity can be used to improve
stuttering research and practice. He shared how neurodiversity-aligned approaches to stuttering
(e.g., exploring different ways of stuttering and benefits of stuttering) promote well-being.
The current paper was inspired by informal dialogues at the National Stuttering
Association’s (NSA) 2019 Research Symposium, designed by Christopher Constantino and
Vivian Sisskin to bring stuttering experts in contact with neurodiversity-aligned practices and
perspectives from other communities (i.e., the autistic and Deaf communities). Although the
autistic and stuttering communities2 have developed largely independently of one another, autism
and stuttering share key commonalities. They are both neurodevelopmental disorders (or
believed to be characterized by brain atypicalities early in development that may change over
time) that impact self-expression (American Psychiatric Association, 2013; Casartelli, Molteni,
& Ronconi, 2016; Chang, Zhu, Choo, & Angstadt, 2015). Both conditions often have a strong
genetic component (Frigerio-Domingues & Drayna, 2017; Geschwind & State, 2013). However,
genetic contributions are highly complex and variable. Both stutterers and autistic people face
high levels of discrimination (e.g., bullying and difficulty obtaining jobs) that can contribute to
2 While advocates for the social model often call for “person-first language” to emphasize that people are much
more than their disabilities (Dunn & Andrews, 2015), this form of distancing tends to be undesirable for people who
view their diagnosis as central to their sense of self, who prefer “identity-first language”, e.g., “autistic person”
(Kapp, et al., 2013; Kenny, et al., 2016). While some neurodiversity-aligned researchers in the stuttering community
prefer the term “stutterer”, others prefer “person who stutters”, or use both terms interchangeably (Constantino,
2018; Pierre, 2012). To align our writing with the preferences of the communities we are writing about, we use
identity-first terms to refer to autistic people and both person-first and identity-first terms to describe stutterers.
Can We Broaden the Neurodiversity Movement Without Weakening It?
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heightened anxiety over time (Alm, 2014; Botha & Frost, 2020; Pierre, 2012). Both autistic
people and stutterers feel empowered by opportunities to engage with people like them,
particularly when they are able to help others (Boyle, 2013; Dwyer 2019a; Morrison et al., 2019;
Sinclair, 2010; Yeoman, 2019).
However, misconceptions about autism and stuttering can make it very difficult for
autistic people and stutterers to take on leadership positions helping others (Hughes, 2016;
Robertson, 2010; Yeoman, 2019). For example, a speech-language pathologist who develops and
leads innovative support groups for young stutterers almost gave up on the career she now excels
at when her professor told her that she could not become a successful speech-language
pathologist because she herself stutters. Stigmatizing misconceptions often have their roots in the
research and advocacy communities that develop their agendas without substantive guidance
from the people they are purportedly trying to serve (Hughes, 2016; Raymaker & Nicolaidis,
2010). For example, major autism and stuttering organizations have explicitly sought to cure
autism and stuttering, leading to outrage from some neurodivergent3 people (Singh, Illes,
Lazzeroni,& Hallmayer, 2009; Yeoman, 2019).
Participatory autism research emerged in 2006 with the explicit goal of correcting
misconceptions fostered by a research tradition that had developed for over half a century with
minimal autistic input (Feinstein, 2011; Raymaker & Nicolaidis, 2010). Growing from other
social justice oriented approaches, including action research, Freire’s critical pedagogy, and
feminism, participatory approaches use democratic decision-making processes to maximize the
participation of people affected by research in the research process (Call-Cummings, Hauber-
3 “Neurodivergent” is defined as having a brain that functions differently from dominant societal norms, e.g., a
brain that produces behaviors, cognitions, or experiences that society would recognize as disability. Conversely
“neurotypical” means having a brain that falls within societally accepted definitions of “normal.”
Can We Broaden the Neurodiversity Movement Without Weakening It?
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Özer, & Ross, 2019; Groot et al., 2019; Raymaker & Nicolaidis, 2013; Wilson, Kenny, &
Dickson-Swift, 2018). Participatory approaches, which position community members as experts
about their own lived experiences, vary along a continuum of involvement from consultation to
authentic collaboration to fully equal partnerships.
Until very recently, participatory approaches to autism research were very rare;
researchers tended to believe that their work was far more inclusive than community members
felt that it was (Pellicano et al., 2014b). Although autism is often associated with research skills,
such as attention to detail and pattern matching skills (Samson, Mottron, Soulières, & Zeffiro,
2012), participatory collaborations with autistic adults emerged years after participatory
collaborations with adults with intellectual disabilities (ID) gained support from researchers and
policy makers (e.g., March, Steingold, Justice, & Mitchell, 1997; Minkes et al., 1995; Raymaker
& Nicolaidis, 2010; Walmsley, 2001; Williams, Simons, & Swindon People First Research
Team, 2005). However, people with ID have most commonly been involved in research in
advisory capacities, meaning that they are called upon by researchers to give advice but are not
involved as full collaborators (Bigby, Frawley, & Ramcharan, 2014). This approach can result in
tokenistic involvement.4
Although the aim of participatory research is the democratization of knowledge, it often
takes place in hierarchical settings where people with a diagnosis seek help from an “expert.”
Therefore, as interest in participatory approaches grows rapidly, so do concerns about potential
consequences of uneven power dynamics such as tokenistic involvement, academics co-opting
4 Indeed, a recent review paper revealed that “participatory" research with people with ID has often lacked
transparency about the origin of ideas, resulting at times in accusations of neurotypical researchers using co-
researchers with ID as puppets (Bigby et al., 2014). Instances of people with ID feeling disempowered by being
asked for their help but then not having sufficient support to actually contribute were also documented. However,
the authors noted improved documentation of roles and supports in more recent papers.
Can We Broaden the Neurodiversity Movement Without Weakening It?
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marginalized people’s identities, and privacy concerns (e.g., Bigby et al., 2014; Schwartz,
Kramer, Cohn, & McDonald, 2019). Recent review papers revealed that most of the early
“participatory” research about neurodevelopmental conditions provided insufficient detail to
determine if the studies were actually participatory. For example, Jivraj and colleagues (2014)
concluded that only two participatory studies involved collaborators in all stages of the process
and provided detail about how consensus was achieved and dissent handled.5 Both of these
studies were headed by the mother of an autistic individual, Christina Nicolaidis, and her autistic
co-PI, Dora Raymaker. One of their projects, Academic Autism Spectrum Partnership in
Research and Education (AASPIRE), which Steven K. Kapp (a co-author of this report) is a
member of, brings together academics, autistic adults, family members, and providers around the
world. Nicolaidis’ and colleagues' groundbreaking work set a precedent that has recently inspired
rapid growth in participatory autism research (see Crane et al., 2019 for a strong example).
Although Nicolaidis’ and colleagues’ (2019) work has resulted in influential academic
papers and applied tools, they initially had to overcome pronounced resistance to the very
possibility of participatory autism research. Reviewers expressed biases about autism, including
that autistic people lack understanding of themselves and others and are very inflexible, to
support their doubts that autistic people could act as co-researchers. When evidence of the
success of their work began to accrue, reviewers questioned if the people they were collaborating
with were really autistic. Over time, feedback became much more positive. However, some
5 Jivraj and colleagues’ use of strict inclusion criteria requiring that studies either clearly document the participatory
process or outcomes revealed only seven participatory studies focused on collaborations with adults with
neurodevelopmental disorders, five of which focused on ID and only two of which focused on autism. Fifty four
papers were excluded for not meeting their criteria. However, another recent review article by Di Lorito and
colleagues (2018) documented early participatory research wherein people with ID were meaningfully involved as
co-authors (e.g., Williams et al., 2005). Therefore, the selection criteria used by Jivraj and colleagues led some
participatory ID research to be overlooked. Nevertheless, both sets of authors highlighted the need for greater clarity
about what constitutes a participatory study, recommending that collaborators be involved in framing questions,
interpreting results and disseminating findings.
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academics continue to attribute problems that may arise during collaborations with autistic
people to characteristics of autism. A recent paper describing participatory approaches as
essential for improving autism research also highlighted biases about autism as barriers to full
inclusion (Fletcher-Watson et al., 2019).
In contrast to the exclusionary history of autism research, speech-language pathology has
a long tradition of disabled people helping others as scientists and clinicians (e.g., Quesal, 2012).
Some of the earliest pioneers in speech-language pathology stuttered, such as Samuel Potter,
Wendell Johnson, and Charles Van Riper (Duchan, 2011). For close to a century, stutterers have
conducted research about stuttering (e.g., Boyle, 2013, 2018; Constantino, 2016; 2018; Pierre,
2012; Johnson, 1930). Some of this research has included stutterers who are not trained as
researchers as authors (e.g., Krauss-Lehrman & Reeves, 1989; Yaruss et al., 2002). Perhaps
because stutterers are often clinicians and researchers, no published research about stuttering
uses an explicitly “participatory” methodology, wherein the power to steer the research is
consciously shared between researchers and community members. Explicitly participatory
methodologies may provide practical guidance to foster alliances across neurotypes that are more
equitable.
Aims and Methodology
In the current paper, a neurodiverse team, comprised of autistic scholars, a scholar who stutters,
and researchers without an unidentified disability, critically examines the theoretical roots and
practical applications of the idea of neurodiversity in order to illuminate its potential as a
framework for both disability-specific and cross-disability alliances.6 We draw examples from
6 The initial aim of this paper was to share the process through which some of its authors developed a participatory
mentorship program in which neurodivergent college students play leadership roles in developing curriculum,
Can We Broaden the Neurodiversity Movement Without Weakening It?
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our combined experience leading programs that were developed, to varying degrees, by
neurodivergent people. We describe two peer support program models for autistic university
students: one led by and including only autistic students and one developed by a non-autistic
academic in collaboration with autistic and non-autistic mentees and mentors. We also describe a
self-help group for people who stutter that was started by stutterers but is inclusive of
“neurotypical” people. By exploring a few of the diverse ways in which neurodiversity-aligned
support groups can develop through the lens of two communities that have not traditionally been
in close contact (autistics and stutterers), we identify strategies for effective alliance building
within and across neurotypes.7 Our reflections on our connections to these programs,
communities, and the neurodiversity movement more generally can be viewed in Table 1.
Given that concerns about power, representation, and shared purpose disrupt effective
alliance building, we use and explore the history of participatory research methods focused on
neurodevelopmental disorders in this paper. The authors collaboratively generated ideas for this
paper in a Google planning document and through Skype. First we conducted a literature review
focused on the history of the neurodiversity movement, participatory research methods with
people with neurodevelopmental disorders, and other methods for eliciting insights from a
broader range of neurodivergent people than are typically included in research. Then, the first,
second, and third authors wrote reflections on the programs used as practical examples of
alliance building. The first author transformed the planning dialogue and literature review into a
paper draft which the other authors added to and revised. Excerpts from our planning document
forging alliances as mentors, and/or evaluating programming as researchers. When delivering talks at the National
Stuttering Association, the authors learned how valuable cross-disability alliances can be. We broadened the focus
of this paper as we realized that our collective experiences developing different programs for neurodivergent people
illuminate strengths and challenges of neurodiversity-aligned cross-disability alliances.
7 Neurotypes means different types of brains, often inferred from behavioral differences.
Can We Broaden the Neurodiversity Movement Without Weakening It?
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are directly quoted in this paper when we considered the pattern of dialogue illuminating. After
receiving constructive feedback from anonymous reviewers and the editors of this volume, we
collaboratively revised the paper.
Theoretical Background and Framework
What is Neurodiversity?
An autistic scholar, Nick Walker (2014), distinguished between three related but distinct terms:
neurodiversity, the neurodiversity paradigm, and the neurodiversity movement. Neurodiversity
refers to the simple fact that all brains are different. The neurodiversity paradigm refers to the
intertwined beliefs that the diversity of brains is valuable, the idea of a “normal” brain is socially
constructed, and social dynamics toward neurodiversity mirror dynamics toward other minority
identities by promoting power inequalities or, if diversity is embraced, creativity. The
neurodiversity movement refers to a decentralized movement that includes people with diverse
perspectives who advocate for civil rights, respect, and full inclusion, e.g., equal opportunities in
education and work, for neurodivergent people.
The neurodiversity paradigm asserts that the fact that all people are neurodiverse (i.e.,
have unique brains) is essentially positive for society. This positive evaluation is not entirely
consistent with Singer’s and Blume’s original conceptualization of neurodiversity as
encompassing all neurological variations, including those that are harmful to oneself and/or
others (Singer, 2019). Indeed, Dekker, the founder of InLv, where neurodiversity was coined,
critiques the neurodiversity paradigm because he believes it excludes people who view autism
more negatively.
“It is important to note that InLv’s notion of neurodiversity was different
Can We Broaden the Neurodiversity Movement Without Weakening It?
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from the “neurodiversity paradigm” that many contemporary activists
subscribe to. These days it is often held that there is no such thing as a
brain that is “less” or “broken” because “all neurologies are valid” [12]. By
contrast, neurodiversity as an aspect of biodiversity includes and accepts
people with suboptimal neurological configurations. While autistic people
who would have preferred to be “cured” if possible were a minority in the
InLv community, we never excluded or denounced them (Dekker, 2020, p. 47).”
What are the Roots of the Neurodiversity Movement?
Early cross-disability alliances effectively challenged the medical model, wherein disabilities
were defined as deficits within disabled bodies that treatments sought to erase, by embracing the
social model, which attributes disability-related impairments to oppressive, conformist societal
attitudes and structures that oppress people who are different from “norms” (Baker, 2011).
Although the social model’s focus on the societal roots of oppression was essential for early
advocacy, both the social and the medical models are reductionist, overlooking the degree to
which living beings and their environments are interdependent and mutually shaped by dynamic
systems of relationships (e.g., Lickliter & Witherington, 2017). The neurodiversity paradigm
positions disability as a form of human variation like any other personal trait, e.g., friendliness.
This allows for descriptions of disability that need not appeal to simplistic binaries like good|bad,
sick|well, or oppressed|liberated. Instead, experiences of disability can be described with as much
nuance as ethnic, racial, and/or gendered experiences. Unlike the social model, the
neurodiversity movement frames neurological diversity as invaluable to the development of
society, yet also challenging at times (e.g., Kapp et al., 2013).
Can We Broaden the Neurodiversity Movement Without Weakening It?
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The neurodiversity paradigm defines disabilities as natural aspects of human diversity
that can offer both advantages and challenges, as well as traits that only become challenges as a
result of societal structures that disadvantage neurodivergent people (e.g., Armstrong, 2010;
Dwyer, 2019b). In contrast to the social model, which attributes challenges associated with
disability solely to environmental factors, autistic activists often recognize that some challenges
associated with autism may not be alleviated by improving society. Many of the leaders of the
neurodiversity movement face pronounced challenges addressing co-occurring conditions and
support individualized treatments to ameliorate such challenges (e.g., Ballou, 2018). Autistic
self-advocates have noted that environmental accommodations alone will not eliminate all
difficulties experienced by autistic people, indicating that both societal changes and
individualized education/therapy may be needed (Ballou, 2018; Robison, 2013).
Neurodiversity-aligned therapies build from people’s strengths and toward self-determined goals
rather than goals imposed by others. The neurodiversity paradigm asserts that neurodivergent
people should be accepted for who they are, and that attempts to eradicate evidence of their
neurodivergence (“normalization”) are stigmatizing and should not be a goal of treatment
(AStrangerInGodZone, 2011; Dwyer, 2019b; Gillespie-Lynch et al., 2017b).
Like autism itself, the neurodiversity paradigm and movement are dynamic social
constructs; their nature changes based on public understanding of their meaning. “Normal” is
also a socially defined construct that is highly contested (e.g., Fenton & Krahn, 2007). Sir
Francis Galton, who transformed the idea of “normal” from a state of dynamic functional health
to a fixed statistical relationship, also coined the term eugenics (Stephens & Cryle, 2017). Early
proponents of eugenics used vague and poorly defined conceptions of “normal” to advocate for
strict immigration laws and forcible sterilization of people with disabilities, poor, and “immoral”
Can We Broaden the Neurodiversity Movement Without Weakening It?
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people (Stephens & Cryle, 2017). Many current neurodiversity advocates question the focus of
vast amounts of funding on finding genetic markers for autism, concerned about the potential
adaptation of genetic markers for eugenic purposes, as occurred with Down Syndrome (Nadesan,
2013; Thomas & Rothman, 2016; Yeoman, 2019). However, the neurodiversity movement has a
complicated relationship with biogenetic conceptualizations of disability.
Is essentialism essential to neurodiversity?
Consistent with autism’s classification as a neurodevelopmental disorder (American Psychiatric
Association, 2013) and with the definition of “neurodivergence”, autistic self-advocates often
endorse essentialist accounts of autism, viewing their brains as fundamentally different from the
brains of “neurotypicals” and indicating that genes associated with autism are increasing due to
natural selection (Brownlow & O’Dell, 2013; Kapp et al., 2013; O’Dell et al., 2016; Ortega
2013; Reser, 2011). Although attributing autism to brain differences can lead to non-
pathologized forms of identity and community, it can also conceal intersectional complexities of
personhood (Ortega, 2013).
Biogenetic explanations were initially endorsed as a method for ameliorating stigma
toward diverse conditions. However, subsequent research revealed that biogenetic explanations
often increase stigma towards mental illnesses by essentializing differences and marking
diagnostic characteristics as outside of a person’s control (Angermeyer, Holzinger, Carta, &
Schomerus, 2011). Indeed, the logic of eugenics requires differences to be essential to one’s
biology. Eugenics aims to move human populations closer to an idealized “normal” over time by
decreasing the propagation of these differences through the gene pool (Wilson & Pierre, 2016).
The neurodiversity framework turns this idealization of “normalcy” upside down, arguing that
Can We Broaden the Neurodiversity Movement Without Weakening It?
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neurodivergence resulting from natural selection enriches society. This framing may more
effectively challenge stigma than deficit-based biogenetic explanations as attitudes toward
autism may be improving (White, Hillier, Frye & Makrez, 2019).
Yet, a key challenge for the neurodiversity movement is that clear neurological
differences between autistic and non-autistic people are far from clearly documented (e.g.,
Baker, 2011; Loth et al., 2017). Neuroimaging findings tend to be contradictory and often fail to
replicate due to small sample sizes and heterogeneity associated with autism. Recent cross-site
collaborations have revealed some evidence of reproducible functional connectivity differences
between autistic and non-autistic samples (Holiga et al., 2019). However, autistic people with
“low IQs” were excluded from the study to reduce variability, as they often are from
neuroimaging research. Indeed, a large-scale neuroimaging study found that differences in
functional connectivity between autistic and non-autistic participants tended to not be
reproducible across data collection sites; autism symptoms and IQ also exhibited opposite
patterns of associations with functional connectivity (King et al., 2019). Furthermore, similar
neuroimaging patterns can sometimes be found in autism and other divergent neurotypes (e.g.,
Baribeau et al, 2019; Mogadam et al., 2019). These findings highlight the vast heterogeneity in
neurotypes within the multidimensional autism constellation.8 Similar inconsistencies in
neuroimaging findings have been observed in stuttering research (Etchell et al., 2018). Concerns
about our ability to reliably distinguish between neurodivergence and “typical development” as
well as the very high rate of co-occurring conditions (Simonoff et al., 2008) highlight a
pragmatic reason for promoting cross-disability alliances; diagnostic categories are imprecise
8 Regarding the term “constellation,” see Fletcher-Watson & Happé, 2019, pp. 34-35.
Can We Broaden the Neurodiversity Movement Without Weakening It?
16
(Hyman, 2010) and vary as a function of social, cultural and historical contexts (Engel, 1977;
Grinker, 2016; Hacking, 2009).
In his book about the history of the neurodiversity movement, Steven K. Kapp (2020)
describes the term neurodiversity as adopting a dimensional approach in which people’s
neurocognitive differences are recognized as largely lacking natural boundaries. The connection
between a dimensional approach and group-based identity politics may at first seem
contradictory. However, the neurodiversity framework draws from reactions to existing stigma.
In other words, all brains vary along intersecting spectrums of difference, but society’s reactions
to certain differences form them into medical categories (Foucault, 1973/1994). These categories
are reclaimed by negotiating their meaning into an affirmative construct. People who are not
discriminated against do not have their neurological differences prescribed in this way; therefore,
there is nothing for them to reclaim. These individuals likely benefit from neurotypical privilege
(Harp, 2009) and arguably do not need corresponding legal protections and access to services.
Is the Neurodiversity Movement Opposed to Treatment?
A common misconception about the neurodiversity movement is that it consists of “high-
functioning” autistics who wish to deny “low-functioning” autistics needed treatment due to
perspective-taking difficulties, coupled with a dogmatic belief that autism is a difference rather
than a deficit (Jaarsma & Welin, 2012; Costandi, 2019).9 However, non-speaking autistics and
autistics with intellectual disabilities are also advocates within the neurodiversity movement
(Kapp, 2020).
9 Functioning levels are placed in quotation marks because neurodiversity advocates (and recent academic research)
reject them as imprecise; they fail to distinguish between different types of functioning and ignore how functioning
varies across contexts (Alvares et al., 2019; Courchesne et al., 2015; Sequenzia, 2013).
Can We Broaden the Neurodiversity Movement Without Weakening It?
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Although the neurodiversity movement opposes a cure for autism, it still supports certain
treatments for autism (Kapp, 2020). Neurodiversity-aligned stutterers also tend to view seeking a
cure for stuttering as deeply stigmatizing (Pierre, 2012; Yeoman, 2019). However, some
stutterers who identify with the neurodiversity movement may be more open to the idea of a cure
than autistic neurodiversity advocates are (Constantino, 2018). While autism is a lifelong
condition, the vast majority of children who stutter no longer stutter by adulthood. Even people
who continue to stutter as adults often experience periods of fluency. Therefore, stuttering may
be a less pervasive aspect of some stutterers’ identities than autism tends to be. This contrast
highlights the degree to which the temporal and embodied aspects of one’s experiences with
neurodivergence may influence one’s perspectives on the neurodiversity movement.
The distinction between cure and treatment has often caused misunderstandings. “Cure”
refers to total elimination of autism or other forms of neurodivergence, whereas “treatment”
supports amelioration of those features that impair adaptive functioning (Kapp et al., 2013). The
neurodiversity movement seeks adaptive functioning and subjective well-being (happiness),
which together constitute quality of life (Constantino, 2018; Ne’eman, 2010; Robertson, 2010).
The movement recognizes that some features of neurodivergence may function neutrally (or as
strengths) for the individual and for others. Challenges are recognized as contextual, arising
primarily from social environments that do not afford opportunities for different types of people
to thrive (Kapp, 2013). Therefore, the emphasis of treatment (which might be demedicalized as a
form of “support”) should be on helping the individual leverage their strengths and mitigate their
difficulties to achieve a high quality of life.
Can We Broaden the Neurodiversity Movement Without Weakening It?
18
Patrick Dwyer, an autistic self-advocate, doctoral student and author of this report,
provides a particularly cogent critique, in his blog, of the misconception that the neurodiversity
movement is opposed to treatment (Dwyer; 2019b). Patrick states:
“We don’t really need to call someone ‘deficient’ or ‘disordered’ to change them. We
simply need to recognize that it would help them thrive, be happy, and enjoy better
mental well-being if they possessed some skills… Furthermore, if we’re going to strive
to help the individual thrive and be happy, whether we do so by trying to change the
individual or their environment, we probably don’t want to insult them and say that their
mind and brain are fundamentally ‘deficient’ and ‘disordered.’…Right now, when
autistic people access services and supports, they often do so as petitioners, asking an
expert neurotypical to generously offer their expertise to help the autistic person with
their deficits and challenges. Furthermore, the services and supports that are offered are
usually imperfectly matched to the individual’s needs. Thus, this process is not only
disempowering, but also inefficient.”
Neurodiversity advocates call for research to shift its primary focus from basic mechanisms
toward developing evidence-based strategies to improve the quality of life, self-determination
and inclusion of existing neurodivergent people across the lifespan (Kapp, 2013; Yeoman, 2019;
Pellicano et al., 2014a). Members of the neurodiversity movement typically support interventions
that promote adaptive functioning by building from strengths while mitigating characteristics
that threaten quality of life, but reject attempts to normalize for normalization’s sake
(Constantino, 2018; Kapp et al., 2013). Although most people would likely support improving
Can We Broaden the Neurodiversity Movement Without Weakening It?
19
the quality of life of neurodivergent people, discussions about who the neurodiversity movement
should represent tend to generate limited consensus.
Who Should the Neurodiversity Movement Include?
Christopher Constantino wrote in the planning document for this study:
“In the same way that being black is not a failure at being white or being gay is not a
failure at being straight, stuttering is not a failure at fluency but a way of speaking that
exists independent of fluency.” He described neurodiversity as “for anyone who wants to
exist independent of a comparison to an ideal. It is for the autistic whose style of
interacting is not simply a failure at normalcy, for the person with ADHD whose thought
processes are not simply a failure to concentrate, the stutterer whose stutters are more
than a failure of fluency.”
Patrick Dwyer replied in the planning document for this study:
“All variation of minds and brains may be neurodiversity, factually speaking, but does all
of it fall under the political neurodiversity paradigm?... I suspect we could agree that
something like a brain tumor is clearly medical, right?... And then there is that gray area
in between. Like, for example, is depression something we should count as a valuable,
non-pathological form of neurodiversity? On the one hand, a neurodiversity approach to
depression may reduce stigma; on the other hand, people may not identify with their
depression and may strongly want to get rid of it… So perhaps all mental variation is,
factually speaking, neurodiversity, but does all of this neurodiversity fall within the scope
of the political neurodiversity paradigm? And if not, where is the boundary?”
Can We Broaden the Neurodiversity Movement Without Weakening It?
20
Does the neurodiversity paradigm apply to people who experience their disability as an
impairment without associated strengths? Within autistic communities, pronounced disagreement
exists about whether the neurodiversity framework should include people who experience autism
solely as a difficulty. Martijn Dekker (2020), the founder of InLv, and Judy Singer (2019) have
both indicated that the term neurodiversity was not meant to endorse an exclusively positive
evaluation of neurodivergence (neurodiversity was meant to encompass all people) but has been
used to exclude autistic people who view autism solely as a deficit.
Misidentification of the neurodiversity movement as a positive attitude toward all aspects
of autism is also apparent among some autism researchers. Simon Baron-Cohen10 attempted to
reduce disagreements between neurodiversity-aligned and medical model-oriented viewpoints at
INSAR’s 2019 annual meeting, suggesting that tensions could be resolved by recognizing the
diversity of autism. While INSAR has historically adhered to a medical model of autism, the
neurodiversity approach has been gaining prominence in the organization. According to Baron-
Cohen (2019), neurodiversity-aligned perspectives frame autism as a difference rather than a
deficit and are applicable to autistic people who face less severe challenges. In contrast, autistic
people who are intellectually disabled, who have limited speech, and/or who experience
pronounced comorbidities may require a medical model orientation where their condition is
recognized as a “disease” rather than a “difference.” In response, Aiyana Bailin (2019), an
autistic self-advocate, reminded Baron-Cohen that the neurodiversity movement recognizes
intrinsic challenges associated with autism, as many neurodiversity advocates experience such
challenges.
10 Simon Baron-Cohen was the president of the International Society for Autism Research, INSAR in 2019.
Can We Broaden the Neurodiversity Movement Without Weakening It?
21
This discussion is a very recent example of a longstanding and often acrimonious debate
within autism communities about what neurodiversity means and who the neurodiversity
movement represents. People often question the degree to which autistic people who speak
and/or are not intellectually disabled can represent the viewpoints of autistic people who cannot
communicate fluently or who are cognitively delayed (e.g., McCready, 2019; Fletcher-Watson,
2017). However, there is some evidence that autistic people often process things in similar ways
despite pronounced differences in communication and cognitive skills (Dawson, Mottron, &
Gernsbacher, 2008). In addition, this question about representation can easily be turned back on
the academic community, as people who do not speak or who have intellectual disabilities are
woefully underrepresented in extant research (Jack & Pelphrey, 2017).
There is evidence that the heterogeneity of the autism constellation complicates
collaborative advocacy efforts within autism communities (Robison, 2019; Sinclair, 2010).
These complications highlight potential pitfalls for building further alliances across different
types of conditions. Inter-disability alliances necessarily increase heterogeneity and may thus
spark disagreements and dilute advocacy aims. Indeed, interviews with 12 autism researchers in
the UK suggest that some researchers continue to blame their difficulties collaborating with the
autism community on the heterogeneity of autism and perceived social-communicative
difficulties associated with autism (Hollin & Pearce, 2019). The researchers described feeling
bewildered by conflicting feedback from the autism community, e.g. autism is a difference to be
respected versus a deficit to cure, and overwhelmed by blunt communication styles. They felt
that debates were dominated by a few particularly vocal autistic people who could not
understand the perspectives of autistic people who were more severely affected. Although
several researchers participating in an online survey strongly endorsed the value of collaborating
Can We Broaden the Neurodiversity Movement Without Weakening It?
22
with autistic people, other researchers expressed similar concerns to those noted above about the
lack of a consistent voice within the autism community and challenges communicating with
autistic people (Pellicano et al., 2014b). Even neurodiversity-aligned researchers have elected to
conduct focus groups with different stakeholder groups separately to avoid having potential
disagreements cloud interpretations (Pellicano et al., 2014a).
Nevertheless, the neurodiversity movement as applied to autism aims to function
inclusively, in that activists include non-autistic people as allies, and it accepts and fights for the
full developmental spectrum of autistic people (including those with intellectual disabilities and
no or minimal language). Marginalization of autistic people by non-autistic relative-led autism
organizations catalyzed the movement (Pripas-Kapit, 2020; Sinclair, 2012). Thus, it seeks to help
families advocate for acceptance, understanding, and support to positively impact people across
the autism spectrum and their parents (Kapp, 2018). Celebratory acts by parents of autistic
children such as learning to speak their child’s language and accepting autism as part of their
child’s identity - and ameliorative acts like teaching their child adaptive coping skills - elicit
support in varied autism communities, including “pro-cure” parent groups and “pro-acceptance”
autistic groups (Kapp et al., 2013). Yet many of the more powerful parental organizations have
behaved in dehumanizing and polarizing ways toward autistic people, such as using fear and pity
as fundraising strategies and seeking an end to autism (ASAN, 2009; daVanport, 2020). They
have appropriated self-advocacy by using language such as “families with autism” (whereas if
anyone “has” autism, autistic people do). They have also claimed autistic people cannot advocate
for policy affecting people with comorbid conditions, even though some autistic activists
themselves have the same comorbidities, e.g., intellectual disabilities (Ballou, 2018).
Can We Broaden the Neurodiversity Movement Without Weakening It?
23
Similar debates about neurodiversity have emerged in other communities. In response to
the publication of Stammering Pride and Prejudice (Campbell, Constantino, & Simpson, 2019),
a book using the social model of disability and neurodiversity paradigm to explore new, positive,
narratives around stuttering, some people who stutter took to social media to decry it. They insist
that stuttering is not a condition to be celebrated but a serious malfunction that is inherently
negative (Weidig, 2019). Given the substantial diversity of perspectives on neurodiversity within
disability-specific communities, how can we effectively promote cross-disability alliances under
the banner of the neurodiversity movement?
How Can Tensions within the Neurodiversity Movement Inform Alliance Building?
Thus far, we have come to see that the neurodiversity movement, like neurodivergence itself,
may be misunderstood partially because it is so multidimensional. People who identify as
members of the neurodiversity movement may differ in their viewpoints about who the
movement should include, what the goals of the movement should be, and how we can work
toward these goals. For example, some (but certainly not all) neurodiversity advocates agree that
the movement should not exclude people who view their neurodivergence solely as a source of
suffering. However, there is less consensus about how the movement should respond to people
who are harmful to others (like some psychopaths).
Given that the neurodiversity movement has been (and will continue to be) interpreted in
so many different ways, it is helpful to hone in on the essential aspects of the underlying
neurodiversity paradigm. In his blog, Patrick Dywer (2019b) identifies three key ideas at the
heart of the neurodiversity paradigm (paraphrased here): 1) there is no such thing as a “normal”
brain and the reality of diversity (neurodiversity) is good for society, 2) neurodivergent people
Can We Broaden the Neurodiversity Movement Without Weakening It?
24
should be accepted as they are rather than pursuing “normalization” for its own sake, and 3)
many (but not all) of the challenges neurodivergent people face arise from societal inequalities.
The neurodiversity movement aims to equalize power inequalities between different
neurotypes. A dialogue between co-authors of this paper about the implications of tensions
within the neurodiversity movement for alliance building (see Table 2) illustrates how essential
“critical consciousness” (Freire, 1970; Sakamoto & Pitner, 2005), or becoming aware of power
imbalances that contribute to oppressive practices and working to rectify them, is for building
effective alliances across diverse neurotypes.
[Insert Table 2 here]
To move toward critical consciousness, allies must interrogate their multiple identities
and perspectives to continuously learn how to become better allies. Active alliance building
requires “neurotypical” allies to recognize that common ways of communicating and associated
assumptions about people who diverge from norms promote inequalities. For example, early
autism research described autistic people as lacking Theory of Mind (ToM), or the ability to
understand others’ perspectives (Baron-Cohen, Leslie, & Frith, 1985). Consequently, many
interventions focus on teaching autistic people to think and act more like neurotypical people
despite limited evidence that interventions to promote ToM or “social skills” lead to
generalizable improvements (Bottema-Beutel, Park, & Kim, 2018; Fletcher-Watson, McConnell,
Manola, & McConachie, 2014). Damian Milton (2012) reframed these “ToM difficulties” as a
“double empathy problem” wherein both autistic and non-autistic people may not intuitively
grasp one another’s perspectives. He noted that autistic people often try harder to understand
non-autistic people than the reverse. Similarly, stutterers have pointed out that communication
challenges associated with stuttering are bidirectional: “‘broken speech’ is constructed by both a
Can We Broaden the Neurodiversity Movement Without Weakening It?
25
speaker and a hearer (Pierre, 2012, p. 3).” Misunderstandings between people with different
neurotypes may arise because people tend to make snap negative judgements about
neurodivergent people (Alkhaldi, Sheppard, & Mitchell, 2019; Boyle, 2018; DeBrabander et al.,
2019; Sasson et al., 2017).
In order to begin to address the societal inequalities identified by the neurodiversity
paradigm, safe spaces are needed where neurodivergent people can feel free to be themselves
(e.g., the “autistic space” where ANI was born). Supports are also needed to help “neurotypical”
and “neurodivergent” people understand one another (e.g., ASAN and the NSA). Participatory
approaches, which promote effective communication, collaboration, and careful documentation
of deliberative processes, can be used to foster effective communication across neurotypes.
In order to begin to envision how the neurodiversity paradigm can be applied to better
support diverse people, we share practical insights derived from our own experiences guiding
neurodiversity-aligned programs. Two of the programs we will highlight (both of which are
support programs for autistic university students) grew, in different ways, from the
neurodiversity movement. The third program we will describe grew from advocacy by stutterers
and only recently began to draw inspiration from the neurodiversity movement.
Practical Examples of Alliance Building Within and Across Neurotypes
Peer-led Support Groups
Programs to help autistic students adapt to university typically rely, at least to some extent, on
peer mentor/support programs (Barnhill, 2016). Although a growing body of literature suggests
that peer mentor programs are helpful for autistic college students (Kuder & Accardo, 2018),
extant programming may inadvertently reify power imbalances favoring neurotypical over
Can We Broaden the Neurodiversity Movement Without Weakening It?
26
autistic perspectives by framing alliance building solely in terms of non-autistic mentors helping
autistic mentees. Oftentimes support comes from a top-down, non-disabled perspective that
assumes certain needs; while this is likely well-intentioned, it may overlook the perspectives of
the people being served and yield supports that lack social validity. Programs for autistic
university students that are described in the existing literature have generally failed to provide
opportunities for autistic students to guide program development (see Capozzi et al., 2019;
Gillespie-Lynch et al., 2020; Hotez et al., 2018; Searle et al., 2019 for exceptions). Some autistic
students have taken matters into their own hands and developed programs to support their
autistic peers themselves.
Patrick Dwyer (2019a) has been a member and facilitator of two autistic-led peer-support
communities for autistic students at two different post-secondary institutions and has also been
involved in cross-disability student advocacy. In his experience, one of the various tensions that
can affect small groups of neurodivergent individuals in local communities is the tension
between providing a safe and supportive environment for neurodivergent members, who may
encounter barriers and considerable stress in their daily lives, and the goal of advocating for
cultural and systems change. While members of these peer-support communities have been
involved in events and panel discussions aimed at engaging with the general campus community,
members have sometimes offered feedback that such advocacy can be threatening, given that the
community may reject messages advanced by self-advocates. Moreover, a tension has
sometimes emerged between openness to allyship and a desire to preserve an atmosphere of
supportive community for neurodivergent people. While some members of peer-support
communities have suggested engaging more deeply with neurotypical allies, others have feared
that opening regular group meetings to “neurotypical” allies would change the supportive
Can We Broaden the Neurodiversity Movement Without Weakening It?
27
atmosphere of the community. Although formal participatory strategies can be used to support
collaboration among “neurotypical” and “neurodivergent” people, the personalities of individuals
may play a larger role in shaping the culture of informal community groups. To preserve the safe
space provided by a “neurodivergent only” zone while also working with non-autistic people to
promote neurodiversity appreciation, Patrick is involved with two separate groups. One group is
a “neurodivergent only” group (started by autistics) and one is a “neurotypical-neurodivergent”
group started by “neurotypicals” interested in autism. This clear demarcation of group
compositions according to their desired function allows Patrick and his peers to participate
flexibly in both disability-specific and cross-disability alliances.
It is noteworthy that the peer-support community Patrick currently facilitates theoretically
describes itself as being open to neurodivergent people more generally in addition to autistic
people, but almost all members self-identify as autistic. This highlights the difficulties of
achieving cross-disability collaborations in practice; it is difficult to attract members from other
neurotypes when different disability communities often operate in segregation from one another.
These dynamics may reinforce themselves: because the group consists of autistic people, it
therefore becomes understood by its members and others in the community as an “autism
group,” in spite of its theoretically more open purpose.
Mentorship Program Created For and with Autistic University Students
In 2013, Kristen Gillespie-Lynch developed a mentorship program for autistic students in
collaboration with students, the Center for Student Accessibility (CSA), and other academics.
Some autistic students were wary of an autism-specific program, describing feeling isolated in
high school and wanting to interact with diverse people but being forced to practice “social
Can We Broaden the Neurodiversity Movement Without Weakening It?
28
skills” with other autistics. Some non-autistic students didn’t want to be excluded. Therefore, we
broadened the program to include students with diverse disabilities, though it is majority autistic.
Danielle DeNigris, Emily Hotez, and Ariana Riccio (co-authors of this report) helped shape the
program when they were doctoral students; Bella Kofner (also a co-author) took on a notable
leadership role while still an undergraduate.
Although we intended for the program to be participatory since its inception,
neurodivergent students only slowly assumed leadership roles. Since the program began,
students have been informed that it is shaped by student input.11 We have described the initial
processes by which the program became more participatory in other papers (Gillespie-Lynch et
al., 2017a; Hotez et al. 2018). Although students have expressed pride that their ideas have
helped shape the program since it began, early opportunities to shape the program were not
sustained or structured enough to enable students to exert a powerful influence on program
structure. In retrospect, our early claims that the program was participatory were more of an
aspiration than a reality.
In Fall 2016, we formed a participatory research group to guide program evaluation and
development. Core members of this group (3 autistic students, 1 autistic scholar, 1 autistic
psychologist and 3 non-autistic scholars, with additional members joining less frequently)
typically meet every three weeks during the school year. This group has focused primarily on
improving the program and on researching autistic identity development, as most group members
are interested in understanding the process and consequences of developing a neurodiversity-
aligned perspective (e.g., DeNigris et al., 2018; Riccio et al., 2020).
11 At an initial pizza party to let students know about the new program, we asked students to identify topics they
were most interested in learning about. We continue to conduct needs assessments at the beginning of each term to
guide program development. Patrick Dwyer (2019a) conducts similar needs assessments in his autistic led group.
Can We Broaden the Neurodiversity Movement Without Weakening It?
29
Three other autistic students were disinterested in the participatory research group, but
enjoyed meeting more spontaneously with the lead author to adapt an autism training designed to
reduce stigma and increase knowledge (Gillespie-Lynch et al., 2015) by sharing their lived
experiences being autistic. The participatory autism training was more effective than a non-
participatory training in improving autism knowledge and stigma. Seven autistic students in the
program also give talks to increase autism understanding in the community.
Thus far, 17 students/alumni with disabilities (12 autistic) have become mentors. Students
with other disabilities besides autism, e.g., sensory, were the earliest mentees to transition into
mentor roles. Transitioned mentors often inspired their mentees to become mentors, highlighting
the value of cross-disability alliances for promoting leadership.
In 2018, we hired a neurodiversity specialist (an autistic college student) to help make the
groups more autism friendly and to co-lead groups. In 2019, an autistic student, Bella Kofner,
and an actor with ADHD co-lead group meetings. They qualitatively coded critiques of the
program, after obtaining reliability, in order to more systematically improve programming (see
next paragraph). Bella joined the program as a mentee in the Fall of 2016; her mentor had
transitioned from mentee to mentor herself. She feels that the program allowed her many
opportunities to take on leadership roles including presenting, co-authoring papers, and
becoming a researcher and a mentor. For Bella:
“Project REACH means that no person with disabilities will ever feel excluded (as it will)
provide support so that people with disabilities can learn how to take what they learned
in Project REACH and apply it to their lives. So, Project REACH helps people with
disabilities grow individually and develop skills that will help them deal with college
Can We Broaden the Neurodiversity Movement Without Weakening It?
30
and life outside of college. Project REACH teaches people with disabilities vital skills
such as self-advocacy, time-management, and socializing with others.”
Student input has helped make our program increasingly engaging. Between 2016 and 2018, we
observed improvements in GPA associated with joining the program that were not apparent
during early semesters of the program (p = .003; data available for 19 students). Qualitative
coding of responses by 24 autistic mentees, 9 mentors without disabilities, and 6 mentors with
disabilities to end-of-the-term questions about what they liked about the program and how it
could be improved revealed that autistic mentees enjoyed learning things (75%) and giving
and/or gaining social support (40%). Mentors without disabilities particularly liked learning
things (67%), especially appreciation of diversity (44%). Mentors with disabilities particularly
enjoyed giving and/or gaining social support (67%) relative to mentors without disabilities
(33%). Mentors with disabilities (80%), mentors without disabilities (22%), and autistic mentees
(27%) often said the program did not need improvement. All three groups’ (~40%) most
common recommendation for improving the program was to broaden its reach. Mentors without
disabilities (44%) noted a need for better social supports, particularly more effective mentor-
mentee matching (22%), that mentors with disabilities (0%) and autistic mentees (12%) did not
note as frequently. Students’ accounts revealed that they generally enjoyed a program wherein
students with diverse neurotypes could learn from one another and wanted the program to grow.
However, a need for more explicit support connecting mentees and mentors was noted.
Student input has improved assessments, helped us more effectively guide mentees into
becoming mentors, and has led to more opportunities for students to connect on their own terms.
Opening the program to diverse types of students created opportunities for them to learn from
Can We Broaden the Neurodiversity Movement Without Weakening It?
31
one another. However, the diversity of our program is not without challenges. Some students
visit the popular group meetings once or twice, are overwhelmed by the diversity of voices they
encounter there, and decide to focus solely on one-on-one mentorship.
In mentorship group meetings, we promote civil discourse by developing shared promises
at the beginning of each term and referring back to them at the beginning of each meeting.
Patrick Dwyer (2019a) also developed this practice in his autistic-led support group. Although
we have tried to use guidelines for participatory research that were recently published by
AASPIRE (Nicolaidis et al., 2019) to obtain consensus on key decisions during our research
meetings, we use rules inconsistently, partially because meeting participation fluctuates,
reducing clarity about decision making, which may disadvantage less assertive members. Review
of AASPIRE’s guidelines highlights the need to collaboratively develop clearer communication
protocols for our research group. We do most of our planning in Google Docs, with periodic
Skype meetings. Google Docs has an advantage of leaving a permanent record of edits and of
being easier to manage, as we often run into technical difficulties when using Skype that lead
some researchers to type their ideas into a textbox. Collaborators mark their ideas with their
initials in Google Docs but the use of multiple communication modalities leads to some
ambiguity about the origin of ideas. As Ted Chiang (2019) noted:
“Before a culture adopts the use of writing, when its knowledge is transmitted exclusively
through oral means, it can very easily revise its history…(technologically-mediated
records) acknowledge our fallibility and make us less judgmental about the fallibility of
others (p. 222).”
Can We Broaden the Neurodiversity Movement Without Weakening It?
32
One weakness that our participatory research group shares with the field is that it does not
sufficiently represent the autism constellation (Bigby et al., 2014; Fletcher-Watson et al., 2019;
MacLeod, 2019). Although we developed a multimodal emotion rating scale to try to
communicate with non-speaking people (Riccio, 2020), our efforts to invite non-speaking people
to collaborate have thus far been unsuccessful. The lead author, who used to be a caregiver for
non-speaking autistic people, attended a workshop and a conference about ways to communicate
with non-speaking people. Yet, attempts to forge collaborations with non-speaking people have
not yet borne fruit. As Kristina Chew, the mother of a mostly non-speaking autistic child wrote:
“Bearing witness to our own insufficiency, to the inscrutability of the otherness we are
trying to speak for and represent, across unfathomable distance— this recognition of the
necessity and futility of our attempts to know can leave us speechless (2013, p. 313).”
The National Stuttering Association as a Source of Self-Help
Christopher Constantino is a member of the NSA, the world’s largest self-help organization for
people who stutter. The NSA was founded by two people who stutter, Michael Sugarman and
Bob Goldman, in 1977 to help bring about “a world without prejudice, full of self-help groups,
advocacy, and public awareness” (Sugarman, 1999). The NSA has traditionally welcomed
neurotypical people as members and even leaders of the organization. Although the autistic
advocacy and the stuttering advocacy communities developed largely independently of one
another, similar neurodiversity-aligned ideas emerged in both communities. Very recently,
members of the NSA (e.g., Chris Constantino) have suggested that supports for stutterers could
be strengthened by explicitly aligning them with the principles of the neurodiversity movement.
Can We Broaden the Neurodiversity Movement Without Weakening It?
33
Chris’s first experience with the NSA was at a local support group run by other people
who stutter. He then started participating in national conferences. This led to him starting and
leading his own local support groups, helping to organize conferences, and presenting workshops
at conferences. Chris believes that the NSA’s primary strength is its ability to empower people
who stutter. It’s local and national structures create a network of people who stutter who can
serve as witnesses and support for each other's growth and struggles. Importantly, they also serve
as friends. The NSA creates a unique environment where stuttering is no longer the stigmatized,
minority way of speaking but, rather, the norm. Within this context it often becomes glaringly
clear to people who stutter that many of their struggles stem not from how they speak but from
the prejudice of others. In this section, Christopher synthesizes research12 about the NSA to
highlight neurodiversity-aligned themes and associated tensions that have arisen within the
stuttering community.
Empirical investigations of the effect of involvement in the NSA on the lives of people
who stutter have largely been positive (Trichon & Tetnowski, 2011). Involvement with the NSA
is often the first time stutterers meet other people who stutter. The experience is often one of
empowerment and improved self-image (Tetnowski & McClure, 2010). Perhaps most
importantly, people who stutter simply enjoy being at the NSA, it provides a place to share
feelings, experiences, and challenges (Krauss-Lehrman & Reeves, 1989). It provides a sense of
community (Trichon, Tetnowski, & Rentschler, 2006).
While the NSA has many functions, its original and primary function has been to
facilitate local self-help groups throughout the United States. Self-help can reduce anxiety and
improve motivation and self-concept, making speaking easier (Gathman, 1986; Ramig, 1993;
12 This section draws more from published research than the prior practical examples because the NSA has been
around for much longer than the other example programs, so there is much more published research about it.
Can We Broaden the Neurodiversity Movement Without Weakening It?
34
Yaruss et al., 2002). Most of these local groups are led by a chapter leader who stutters; although
some are led by fluent speakers with an interest in stuttering. The founders saw self-help as an
important force in changing the way people who stutter view themselves and are viewed by
others. The groups also acted as local cells for advocacy and activism. Local groups have
protested companies that discriminate against people who stutter as well as media that portrays
people who stutter negatively (Sugarman, 1999).
In 2001, the NSA started hosting joint symposiums for scientists, clinicians, and people
who stutter (National Stuttering Association, 2019). These research symposiums have become
yearly meetings of professionals and stutterers to talk about the latest research and therapies for
stuttering. They have proved fertile ground for thought-provoking conversation and have
provided a way for stutterers to have a say in researchers’ and therapists’ agendas. The research
symposium for 2019 was co-chaired by Constantino. Its title was Stuttering: Perspectives on
Disability, Diversity and Culture, and it brought together experts on neurodiversity – such as
Judy Singer and Kristen Gillespie-Lynch – as well as researchers in the fields of disability
studies and speech-language pathology.
Despite this apparent progress, there are still tensions between stutterers and
professionals within the NSA. There are disagreements over who holds power and whether these
people should be stutterers. Additionally, not all members of the NSA embrace neurodiversity.
The issue of cure has been problematic. Many stutterers desire a cure for stuttering and donors
often specifically want their money to fund research seeking a cure. In 2016, the NSA explicitly
made it part of its vision statement to fund research searching for stuttering’s “cause and cure”
(Maguire & Reitzes, 2016). There was an immediate backlash from some in the stuttering
community who felt this was antithetical to the cause of embracing stuttering and furthered
Can We Broaden the Neurodiversity Movement Without Weakening It?
35
stigma. The NSA has since removed any mention of cure from its vision statement; nonetheless,
this continues to be a wedge issue for people who stutter.
Another recent conflict has been over local chapters’ ability to control attendance at their
local meetings. Many chapters do community outreach and allow professionals to attend their
meetings. However, the primary function of these groups is for stutterers to mutually support
each other, not to educate the fluent public. Some NSA chapters have started holding stutterer-
only events. Fluent SLPs were very critical of these meetings. They worried they would stoke
hostility towards therapy and were a step backwards into old antagonisms. In response, the NSA
insisted on a policy of “inclusivity” and stopped sanctioning these events. This has resulted in
local groups dissociating themselves from the NSA in order to hold stutterer-only conferences
(NYC Stutters, 2018). The NSA is a powerful example of how neurodivergent groups can take
control of their own narratives and professional assistance. At the same time, it shows how trying
to include all stakeholders can become problematic. It shows how easily power shifts from the
hands of the neurodivergent to the neurotypical when both are involved in the same organization.
Discussion
How Can We Use Neurodiversity to Support Cross-Disability Alliances?
The neurodiversity paradigm provides a framework that can help people recognize that
superficially dissimilar experiences may have shared underlying causes, e.g., stigma as a cause
of unemployment and unequal access to healthcare. The preceding examples of alliance building
within and across neurotypes highlight benefits of cross-neurotype alliances (e.g., creating
models for self-advocacy and spreading neurodiversity appreciation). However, challenges were
also apparent (e.g., power imbalances favoring neurotypical people and a potentially
Can We Broaden the Neurodiversity Movement Without Weakening It?
36
overwhelming diversity of viewpoints). Attempts at cross-disability advocacy may at times
promote battles over limited resources. This may be especially true if cross-disability alliances
are imposed from above as a forced requirement that ignores real differences between people
with different conditions (Friedner, Ghosh, & Palaniappan, 2018). When using neurodiversity as
a framework to help people recognize and achieve shared aims, it is important to avoid assuming
commonalities that the communities in question have not identified themselves.
People who share a specific disability may need space to decide whether or not to enter
into cross-disability coalitions. Cross-disability alliances are likely to be most effective when
spaces that allow many people to access resources and relationships are available, yet some
spaces are reserved for people who share a specific condition and/or advocacy aim. This
approach aligns with evidence that people tend to mobilize for causes that affect them (Putnam,
2005). Protests focused on disability-specific issues are usually led by people with the specific
condition that the issue affects (e.g., the fight for a Deaf president of Gallaudet; Christiansen &
Barnartt, 2003; and the protest of stuttering’s portrayal in A Fish Called Wanda; Horn, 1989),
while protests addressing systemic issues that affect many types of people draw from cross-
disability alliances (e.g., the Independent Living Movement; Penney & Bassman, 2007).
Aspiring allies need to recognize that people who have been disadvantaged by society
may need space away from more privileged people, even if the latter view themselves as allies
with the best intentions. Indeed, it is important to remember that participatory research is not the
only way for neurodivergent people to take on leadership roles. Neurodivergent people can also
lead initiatives without collaborating with “neurotypicals.” Fletcher-Watson and colleagues
(2019) highlighted the value of having some autistic-only decision making spaces. Spaces for
smaller groups may also spark innovation (Pellicano et al., 2014a). Indeed, meeting spaces that
Can We Broaden the Neurodiversity Movement Without Weakening It?
37
are open only to people with a specific neurotype may be as important for the strength of society
as spaces where people with different neurotypes can work together.13 Although it can be
challenging to recognize that alliances can be strengthened by one’s own absence, boundaries
can serve as a “means of communication, as opposed to division” that are “essential to the
circulation of knowledge and information across social worlds” (Seale et al., 2015, p.485).
Fletcher-Watson and colleagues (2019) expressed hope that the growing neurodiversity
movement will help people understand differences rather than always seeking consensus. If we
wish to truly engage with diverse others, including people whose viewpoints we may not agree
with, our aim cannot always be to obtain consensus by resolving or avoiding all controversies
(Pellicano & Stears, 2011). Purposefully balancing the number of people representing each
identity in a larger group (or over-representing people with an identity that has traditionally been
disempowered) may foster civil discourse (Schwartz, Kramer, Cohn,& McDonald, 2019).
Strategies from political organizing may also be helpful for making sure that each group’s unique
perspectives are heard, including securing “translators” to convey information between
disability-specific groups and cross-disability groups and collaboratively developing guidelines
about the communication preferences of different groups. Inter-group dialogue, wherein peer
facilitators representing different identities lead dialogues about group identity and work through
any conflicts that arise, may combat stigma and promote cross-disability alliances (Sakamoto &
Pitner, 2005). Credibility checking is a promising strategy for documenting diversity in opinions
(MacLeod, 2019). Efforts to promote fair representation must be developed collaboratively, so
13 Given that internalized stigma may prevent some people from engaging with groups of people who share their
diagnosis, strategies to reduce stigma and spaces where people do not need to disclose a diagnosis to join are also
essential.
Can We Broaden the Neurodiversity Movement Without Weakening It?
38
that the processes by which power is conferred are visible and guided by the degree to which
groups are directly affected by an issue (Bertilsdotter et al., 2019; MacLeod, 2019; Pellicano &
Stears, 2011).
Participatory research groups have developed clear strategies that we can use to
collaborate with diverse others in increasingly equitable ways. These strategies, which are
designed to counter power imbalances and create transparent decision making processes, have
the potential to strengthen both cross-disability and disability-specific alliances (as even people
who share a specific disability often differ in other aspects of their identities and aims).
Participatory research focused on ID has increasingly highlighted strategies such as establishing
trust, shared purpose, and clear roles; developing democratic and reflexive strategies for
managing power imbalances; making information accessible (e.g., using simple language and
pictures); compensating fairly; and allowing practices to evolve as people learn (Di Lorito,
Bosco, Birt, & Hassiotis, 2018; March et al., 1997; Nind & Vinha, 2014; Schwartz et al., 2019;
Vaughan et al., 2019). Experienced participatory researchers emphasize that participatory
research is a process, with some studies becoming more participatory over time as collaborators
grow more empowered (Call-Cummings et al., 2019; Schwartz et al., 2019).
Nicolaidis and colleagues (2019) recently published recommendations derived from their
experiences leading participatory initiatives focused on autism and other neurodevelopmental
conditions since 2006 (e.g., AASPIRE). Their recommendations, which often align with
recommendations from the ID literature, include working together to build trust, e.g., visioning
exercises to identify shared goals, and jointly creating clear roles and effective communication
processes. They rely primarily on communication via chat during meetings to reduce power
imbalances by requiring non-autistic researchers to communicate through a less preferred
Can We Broaden the Neurodiversity Movement Without Weakening It?
39
modality. They recommend discussing processes regularly, e.g., reserving the last few minutes of
each meeting to reflect and using change logs to document how materials are altered based on
feedback.
The AASPIRE guidelines, and our own experiences, highlight the value of protocols that
document the process of seeking consensus (when consensus is sought) for decreasing power
imbalances and helping everyone involved understand their roles and responsibilities. At the
same time, opportunities to interact that are not structured a priori are also needed, as such spaces
may foster unexpected connections and discoveries. Fletcher-Watson and colleagues (2019)
describe benefits of unstructured engagements wherein questions can emerge slowly through
dialogue, rather than being limited by an agenda.
By unstructured spaces we do not mean the absence of needed accommodations. The
most heated debates about whom the neurodiversity movement can represent tend to focus on
people who do not speak (e.g., McCoy, Liu, Lutz, & Sisti, 2020). Although participatory
research is designed to empower disempowered people to share their own expertise about their
lives, under-representation of people with the greatest communicative challenges has been a
consistent refrain across papers describing participatory approaches with varied populations
(e.g., Bertilsdotter et al., 2019). Creative strategies to involve people who struggle to speak are
increasingly used (Beresford et al., 2004; Milner & Frawley, 2018; Nicholas, Orjasaeter, &
Zwaigenbaum, 2019; Tesfaye et al., 2019). However, participatory research continues to rely
primarily on speaking or typing words, both of which can be challenging for people with
dyspraxia.14 To effectively engage the community, we must become more creative in how we
14 Dyspraxia refers to difficulties with motor coordination and motor initiation. Motor difficulties are believed to
underly the challenges many non-speaking autistic people face when trying to speak (Donnellan, Hill, & Leary,
2013).
Can We Broaden the Neurodiversity Movement Without Weakening It?
40
seek out collaborators and communicate (MacLeod, 2019; Pellicano et al., 2014b). As Dawn
Eddings Prince (2013), an autistic anthropologist writes:
“Academic writing serves to empty the fullness of the thing it seeks to unequivocally contain. It
kills the patient in its very prescription. A cutting thing, a surgery of words, it makes the many
into one rather than loaning itself to the cause of connection (p. 330).”
Conclusion
In this paper, we examined how the term neurodiversity has been conceptualized and applied in
order to better use it as a framework to support cross-disability alliances. We learned that the
“neuro” in neurodiversity refers to a constellation of differences that often lack clear
demarcations from “normal.” Societal expectations shape these dimensional differences into
categories. These categories can hurt people by marking them as less than some imagined ideal.
These categories can also help people by securing them access to supports they may need in
order to live self-determined lives. These categories can be changed and reimagined when people
work in concert to change them. Neurodiversity provides a conceptual framework that people
with diverse conditions can use to identify shared forms of oppression and work together to
change them. Participatory approaches, and approaches that are solely led by neurodivergent
people, have shifted public understanding of autism, stuttering, and other conditions and have
great potential to continue improving research and practice. The iterative process of participatory
work can strengthen alliances, much as stuttering slows and thus deepens communication,
“Stuttering interrupts this hegemonic order of time (Pierre quoted by Yeoman, 2019).”
Although small percentages of the population may have any given diagnosis, together
people with diagnoses make up a very sizable chunk of the population. These numbers are useful
Can We Broaden the Neurodiversity Movement Without Weakening It?
41
politically, such as when fighting for accommodations and services. But they are also useful
personally. They increase the odds that those with diagnoses will come into contact with
messages that support their neurodivergent identity rather than diminish it. They are also a
source of social solidarity and friendship.
As the neurodiversity movement grows, it will be strengthened by more consistently
demonstrating the appreciation of diversity that it advocates for. In order to foster cross-
disability alliances that have the power to transform cultures, we must find ways to navigate
difference by listening and communicating more effectively. Greta Thunberg, an autistic
teenager who sparked a global climate crisis advocacy movement, provides an excellent example
of the power of identifying a key shared objective (e.g., reducing carbon emissions) and
communicating it simply and clearly for forging effective alliances. As Tisoncik, an autistic
activist whose work was inspired by the civil rights movement wrote:
“We are tied in a single garment of destiny. Autistic activism is but one branch of an eternal
great struggle, to set right what is wrong, to lift up those who have been pushed down, and to
make space for joy in this world (2020, p., 75).”
Can We Broaden the Neurodiversity Movement Without Weakening It?
42
References
Alkhaldi, R. S., Sheppard, E., & Mitchell, P. (2019). Is there a link between autistic
people being perceived unfavorably and having a mind that is difficult to read?
Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-
019-04101-1
Alm, P. A. (2014). Stuttering in relation to anxiety, temperament, and personality:
Review and analysis with focus on causality. Journal of Fluency Disorders, 40, 5-
21.
Alvares, G. A., Bebbington, K., Cleary, D., Evans, K., Glasson, E. J., Maybery, M. T., &
Whitehouse, A. J. (2019). The misnomer of ‘high functioning autism’: Intelligence
is an imprecise predictor of functional abilities at diagnosis. Autism,
1362361319852831.
American Psychiatric Association (2013). Diagnostic and statistical manual of mental
disorders (DSM-5®). American Psychiatric Pub.
Armstrong, T. (2010). Neurodiversity: Discovering the Extraordinary Gifts of Autism,
ADHD, Dyslexia, and Other Brain Differences. Da Capo Lifelong Books.
Angermeyer, M. C., Holzinger, A., Carta, M. G., & Schomerus, G. (2011). Biogenetic
explanations and public acceptance of mental illness: systematic review of
population studies. The British Journal of Psychiatry, 199(5), 367-372.
ASAN (2020). Retrieved April 26th from https://autisticadvocacy.org/about-asan/
AStrangerInGodZone. (2011, November 14). Behavioural therapy - ‘normalization’ vs
‘teaching of skills’. [Blog post]. Retrieved from
http://strangeringodzone.blogspot.com/2011/11/behavioural-therapy-
normalization-vs.html
Bailin, A. (2019). Clearing up some misconceptions about neurodiversity. Scientific
American. [Blog post]. Retrieved from
https://blogs.scientificamerican.com/observations/clearing-up-some-
misconceptions-about-neurodiversity/
Baker, D. L. (2011). The politics of neurodiversity: Why public policy matters. Boulder,
CO: Lynne Rienner Publishers.
Ballou, E.P. (2018). What the neurodiversity movement does- and doesn’t- offer.
Thinking Person’s Guide to Autism. [Blog post]. Retrieved from
http://www.thinkingautismguide.com/2018/02/what-neurodiversity-movement-
doesand.html
Baribeau, D. A., Dupuis, A., Paton, T. A., Hammill, C., Scherer, S. W., Schachar, R. J.,
& Anagnostou, E. (2019). Structural neuroimaging correlates of social deficits are
similar in autism spectrum disorder and attention-deficit/hyperactivity disorder:
Analysis from the POND Network. Translational Psychiatry, 9, 72.
doi:10.1038/s41398-019-0382-0
Barnhill, G. P. (2016). Supporting students with Asperger syndrome on college
campuses: Current practices. Focus on Autism and Other Developmental
Disabilities, 31(1), 3-15.
Baron-Cohen, S. (2019). The concept of neurodiversity is dividing the autism
community. Scientific American. [Blog post]. Retrieved from
Can We Broaden the Neurodiversity Movement Without Weakening It?
43
https://blogs.scientificamerican.com/observations/the-concept-of-neurodiversity-is-
dividing-the-autism-community/
Baron-Cohen, S., Leslie, A. M., & Frith, U. (1985). Does the autistic child have a “theory
of mind”?. Cognition, 21(1), 37-46.
Beresford, B., Tozer, R., Rabiee, P., & Sloper, P. (2004). Developing an approach to
involving children with autistic spectrum disorders in a social care research
project. British Journal of Learning Disabilities, 32(4), 180-185.
Bertilsdotter Rosqvist, H., Kourti, M., Jackson-Perry, D., Brownlow, C., Fletcher, K.,
Bendelman, D., & O'Dell, L. (2019). Doing it differently: emancipatory autism
studies within a neurodiverse academic space. Disability & Society, 1-20.
Bigby, C., Frawley, P., & Ramcharan, P. (2014). Conceptualizing inclusive research with
people with intellectual disability. Journal of Applied Research in Intellectual
Disabilities, 27(1), 3-12.
Blume, H. (1998). Neurodiversity. The Atlantic, 30, 09-90.
Botha, M., & Frost, D. M. (2020). Extending the minority stress model to understand
mental health problems experienced by the autistic population. Society and mental
health, 10(1), 20-34.
Bottema-Beutel, K., Park, H., & Kim, S. Y. (2018). Commentary on social skills training
curricula for individuals with ASD: social interaction, authenticity, and stigma.
Journal of autism and developmental disorders, 48(3), 953-964.
Boyle, M. P. (2013). Psychological characteristics and perceptions of stuttering of adults
who stutter with and without support group experience. Journal of fluency
disorders, 38(4), 368-381.
Boyle, M. P. (2018). Enacted stigma and felt stigma experienced by adults who stutter.
Journal of Communication Disorders, 73, 50-61.
Brownlow, C., & O'Dell, L. (2013). Autism as a form of biological citizenship. In J.
Davidson & M. Orsini (Eds.), Worlds of autism: Across the spectrum of
neurological difference (pp. 97-114). U of Minnesota Press.
Call-Cummings, M., Hauber-Özer, M., & Ross, K. (2019). Struggling with/against the
unintentional reproduction of power structures in participatory research: Using
reconstructive horizon analysis. Action Research, 1476750319837324.
Campbell, P., Constantino, C. D., & Simpson, S. (Eds.). (2019). Stammering Pride and
Prejudice: Difference not Deficit. Albury, UK: J&R Press.
Capozzi, S., Barmache, D., Cladis, E., Peña, E. V., & Kocur, J. (2019). The Significance
of Involving Nonspeaking Autistic Peer Mentors in Educational Programs. Autism
in Adulthood.
Casartelli, L., Molteni, M., & Ronconi, L. (2016). So close yet so far: Motor anomalies
impacting on social functioning in autism spectrum disorder. Neuroscience &
Biobehavioral Reviews, 63, 98-105.
Chang, S. E., Zhu, D. C., Choo, A. L., & Angstadt, M. (2015). White matter
neuroanatomical differences in young children who stutter. Brain, 138(3), 694-711.
Chew, K. (2013). Autism and the Task of the Translator. Worlds of autism: Across the
spectrum of neurological difference, 305-515.
Chiang, T. (2019). Exhalation: Stories. Knopf.
Christiansen, J. B., & Barnartt, S. N. (2003). Deaf president now!: The 1988 revolution at
Gallaudet University. Gallaudet University Press.
Can We Broaden the Neurodiversity Movement Without Weakening It?
44
Constantino, C. D. (2016). Stuttering Gain. International Stuttering Association,
International Stuttering Awareness Day Online Conference 2016,
http://isad.isastutter.org/isad-2016/papers-presented-by-2016/stories-and-
experiences-with-stuttering-by-pws/stuttering-gain-christopher-constantino/.
Constantino, C. D. (2018). What Can Stutterers Learn from the Neurodiversity
Movement?. Seminars in speech and language, 39(04), 382-396.
Costandi, (2019). Against Neurodiversity. Psyche. Retrieved from
https://aeon.co/essays/why-the-neurodiversity-movement-has-become-harmful
Courchesne, V., Meilleur, A. A. S., Poulin-Lord, M. P., Dawson, M., & Soulières, I.
(2015). Autistic children at risk of being underestimated: school-based pilot study
of a strength-informed assessment. Molecular autism, 6(1), 12.
Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2019). ‘Something needs to
change’: Mental health experiences of young autistic adults in England. Autism,
23(2), 477-493.
daVanport, S. (2020). Out of searching comes new vibrance. In Kapp, S. K. (Ed.),
Autistic Community and the Neurodiveristy Movement: Stories from the Frontline.
Singapore: Palgrave Macmillan
Dawson, M., Mottron, L., & Gernsbacher, M. A. (2008). Learning in autism. Learning
and memory: A comprehensive reference, 2, 759-72.
DeBrabander, K. M., Morrison, K. E., Jones, D. R., Faso, D. J., Chmielewski, M., &
Sasson, N. J. (2019). Do First Impressions of Autistic Adults Differ Between
Autistic and Nonautistic Observers?. Autism in Adulthood.
Dekker, M. (2020). From exclusion to acceptance: Independent Living on the Autistic
Spectrum. In Kapp, S. K. (Ed.), Autistic Community and the Neurodiversity
Movement: Stories from the Frontline. Singapore: Palgrave Macmillan.
DeNigris, D., Brooks, P. J., Obeid, R., Alarcon, M., Shane-Simpson, C., & Gillespie-
Lynch, K. (2018). Bullying and identity development: Insights from autistic and
non-autistic college students. Journal of autism and developmental
disorders, 48(3), 666-678.
Di Lorito, C., Bosco, A., Birt, L., & Hassiotis, A. (2018). Co-research with adults with
intellectual disability: A systematic review. Journal of Applied Research in
Intellectual Disabilities, 31(5), 669-686.
Donnellan, A. M., Hill, D. A., & Leary, M. R. (2013). Rethinking autism: implications of
sensory and movement differences for understanding and support. Frontiers in
integrative neuroscience, 6, 124.
Duchan, J. F. (2011). A History of Speech-Language Pathology. Retrieved from
http://www.acsu.buffalo.edu/~duchan/1900-1945.html
Dunn, D. S., & Andrews, E. E. (2015). Person-first and identity-first language:
Developing psychologists’ cultural competence using disability language.
American Psychologist, 70(3), 255.
Dwyer, P. (2019a). Establishing an autism peer support community. Stairway to STEM.
Retrieved from https://www.stairwaytostem.org/establishing-a-peer-support-
community-for-autistic-students/
Dwyer, P. (2019b). On neurodiversity, Part III: What is the neurodiversity paradigm
[blog post]? Retrieved from http://www.autisticscholar.com/what-is-
neurodiversity/
Can We Broaden the Neurodiversity Movement Without Weakening It?
45
Engel, G. L. (1977). The need for a new medical model: a challenge for biomedicine.
Science, 196(4286), 129-136.
Etchell, A. C., Civier, O., Ballard, K. J., & Sowman, P. F. (2018). A systematic literature
review of neuroimaging research on developmental stuttering between 1995 and
2016. Journal of fluency disorders, 55, 6-45.
Feinstein, A. (2011). A history of autism: Conversations with the pioneers. John Wiley &
Sons.
Fenton, A., & Krahn, T. (2007). Autism, Neurodiversity, and Equality Beyond the
“Normal". Journal of Ethics in Mental Health, 2(2), 1-6.
Fletcher-Watson, S. (2017, March 24). Autistic voices, and the problem of the ‘vocal
minority.’ Retrieved from https://dart.ed.ac.uk/vocal-minority/
Fletcher-Watson, S., Adams, J., Brook, K., Charman, T., Crane, L., Cusack, J., ... &
Pellicano, E. (2019). Making the future together: Shaping autism research through
meaningful participation. Autism, 23(4), 943-953.
Fletcher-Watson, S., & Happé, F. (2019). Autism: a new introduction to psychological
theory and current debate. Routledge.
Foucault, M. (1973/1994). The birth of the clinic (A. Sheridan, Trans.). New York:
Vintage Books.
Friedner, M., Ghosh, N., & Palaniappan, D. (2018). “Cross-Disability” in India?: On the
limits of Disability as a Category and the Work of Negotiating Impairments. South
Asia Multidisciplinary Academic Journal.
Freire, P. (1970) Pedagogy of the Oppressed. New York: Continuum.
Frigerio-Domingues, C., & Drayna, D. (2017). Genetic contributions to stuttering: the
current evidence. Molecular Genetics & Genomic Medicine, 5(2), 95-102.
Gathman, B. (1986). Clarifying the focus and function of self-help. The Speak Easy
Newsletter, 6, 5-6.
Geschwind, D. H., & State, M. W. (2015). Gene hunting in autism spectrum disorder: on
the path to precision medicine. The Lancet Neurology, 14(11), 1109-1120.
Gillespie-Lynch, K., Bailey Bisson, J., Tricarico, N., Kofner, B., Harrison, A.J.., Obeid,
R., Saade, S., Daou, N., & Bongiovanni, P. (2020a). Can online autism trainings
reduce implicit and explicit Stigma? Comparing a participatory training to a
training developed without autistic input. Accepted as a talk for the INSAR Annual
Meeting, Seattle, WA, 2020. (Conference cancelled due to COVID-19).
Gillespie-Lynch, K., Brooks, P. J., Someki, F., Obeid, R., Shane-Simpson, C., Kapp, S.
K., ... & Smith, D. S. (2015). Changing college students’ conceptions of autism:
An online training to increase knowledge and decrease stigma. Journal of Autism
and Developmental Disorders, 45(8), 2553-2566.
Gillespie-Lynch, K., Bublitz, D., Donachie, A., Wong, V., Brooks, P. J., & D’Onofrio, J.
(2017a). “For a long time our voices have been hushed”: Using student
perspectives to develop supports for neurodiverse college students. Frontiers in
psychology, 8, 544.
Gillespie-Lynch, K., Hotez, E., Zajic, M., Riccio, A., DeNigris, D., Kofner, B., Bublitz,
D., Gaggi, N., & Luca, K. (2020). Comparing the Writing Skills of Autistic and
Non-Autistic University Students: A Collaboration with Autistic University
Students. Autism.
Can We Broaden the Neurodiversity Movement Without Weakening It?
46
Gillespie-Lynch, K., Kapp, S. K., Brooks, P. J., Pickens, J., & Schwartzman, B. (2017b).
Whose expertise is it? Evidence for autistic adults as critical autism experts.
Frontiers in Psychology, 8, 438.
Grandin, T. (1990). Needs of high functioning teenagers and adults with autism (Tips
from a recovered autistic). Focus on Autistic Behavior, 5(1), 1-16.
Griffin, E., & Pollak, D. (2009). Student experiences of neurodiversity in higher
education: insights from the BRAINHE project. Dyslexia, 15(1), 23-41.
Grinker, R. R. (2016). What in the world is autism? A cross-cultural perspective.
Understanding and Applying Medical Anthropology, 311.
Hacking, I. (2009). How we have been learning to talk about autism: A role for stories.
Metaphilosophy, 40(3-4), 499-516.
Harp, B. [bev] (2009, August 7) Check list of neurotypical privilege: New draft. [Blog
post]. Retrieved from http://aspergersquare8.blogspot.com/2009/08/checklist-of-
neurotypical-privilege-new.html
Holiga, Š., Hipp, J. F., Chatham, C. H., Garces, P., Spooren, W., D’Ardhuy, X. L., ... &
Rausch, A. (2019). Patients with autism spectrum disorders display reproducible
functional connectivity alterations. Science translational medicine, 11(481),
eaat9223.
Hollin, G., & Pearce, W. (2019). Autism scientists’ reflections on the opportunities and
challenges of public engagement: A qualitative analysis. Journal of autism and
developmental disorders, 49(3), 809-818.
Horn, J. (1989). Oscar Demonstrators Line Up on Eve of Awards Show. Associated
Press. https://apnews.com/191442d2cadf0722d4efdcf902c053d7.
Hotez, E., Shane-Simpson, C., Obeid, R., DeNigris, D., Siller, M., Costikas, C., ... &
Gillespie-Lynch, K. (2018). Designing a Summer Transition Program for Incoming
and Current College Students on the Autism Spectrum: A Participatory Approach.
Frontiers in psychology, 9, 46.
Hughes, J. M. F. (2016). Nothing about us without us: Increasing neurodiversity in
disability and social justice advocacy groups. Retrieved from
https://autisticadvocacy.org/wp-content/uploads/2016/06/whitepaper-Increasing-
Neurodiversity-in-Disability-and-Social-Justice-Advocacy-Groups.pdf
Hyman, S. E. (2010). The diagnosis of mental disorders: the problem of reification.
Annual review of clinical psychology, 6, 155-179.
Jaarsma, P., & Welin, S. (2012). Autism as a natural human variation: Reflections on the
claims of the neurodiversity movement. Health Care Analysis, 20(1), 20-30.
Jack, A., & A. Pelphrey, K. (2017). Annual Research Review: Understudied populations
within the autism spectrum–current trends and future directions in neuroimaging
research. Journal of Child Psychology and Psychiatry, 58(4), 411-435.
Jamison, K. R. (1995). Manic-depressive illness and creativity. Scientific American,
272(2), 62-67.
Jivraj, J., Sacrey, L. A., Newton, A., Nicholas, D., & Zwaigenbaum, L. (2014). Assessing
the influence of researcher–partner involvement on the process and outcomes of
participatory research in autism spectrum disorder and neurodevelopmental
disorders: A scoping review. Autism, 18(7), 782-793.
Johnson, W. (1930). Because I Stutter. New York: D. Appleton.
Can We Broaden the Neurodiversity Movement Without Weakening It?
47
Kanner, L. (1943). Autistic disturbances of affective contact. Nervous child, 2(3), 217-
250.
Kapp, S. (2013). Interactions between theoretical models and practical stakeholders: the
basis for an integrative, collaborative approach to disabilities. In Ashkenazy, E., &
Latimer, M.(Eds.) Empowering Leadership: A Systems Change Guide for Autistic
College Students and Those with Other Disabilities. pp 104-113. Washington:
Autistic Self Advocacy Network (ASAN).
Kapp, S. K. (2018). Social support, well-being, and quality of life among individuals on
the autism spectrum. Pediatrics, 141(Supplement 4), S362-S368.
Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E., & Hutman, T. (2013). Deficit,
difference, or both? Autism and neurodiversity. Developmental psychology, 49(1),
59.
Kapp, S. K. (Ed.) (2020). Autistic Community and the Neurodiversity Movement: Stories
from the Frontline. Singapore: Palgrave Macmillan.
Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016).
Which terms should be used to describe autism? Perspectives from the UK autism
community. Autism, 20(4), 442-462.
King, J. B., Prigge, M. B., King, C. K., Morgan, J., Weathersby, F., Fox, J. C., & Bigler,
E. D. (2019). Generalizability and reproducibility of functional connectivity in
autism. Molecular Autism, 10(1), 27.
Kras, J. F. (2010). The “ransom notes” affair: when the neurodiversity movement came
of age. Disability Studies Quarterly, 30(1).
Krauss-Lehrman, T., & Reeves, L. (1989). Attitudes toward speech-language pathology
and support groups: Results of a survey of members of the National Stuttering
Project. Texas Journal of Audiology and Speech Pathology, 15(1), 22-25.
Kuder, S. J., & Accardo, A. (2018). What works for college students with autism
spectrum disorder. Journal of Autism and Developmental Disorders, 48(3), 722-
731.
Lickliter, R., & Witherington, D. C. (2017). Towards a truly developmental epigenetics.
Human Development, 60(2-3), 124-138.
Loth, E., Charman, T., Mason, L., Tillmann, J., Jones, E. J., Wooldridge, C., ... &
Banaschewski, T. (2017). The EU-AIMS Longitudinal European Autism Project
(LEAP): design and methodologies to identify and validate stratification
biomarkers for autism spectrum disorders. Molecular autism, 8(1), 24.
Maguire, G., & Reitzes, P. (2016). The Future of the National Stuttering Association.
StutterTalk, 578, May 2 2016.
March, J., Steingold, B., Justice, S., & Mitchell, P. (1997). Follow the yellow brick road!
People with learning difficulties as co-researchers. British Journal of Learning
Disabilities, 25(2), 77-80.
McCoy, M. S., Liu, E. Y., Lutz, A. S., & Sisti, D. (2020). Ethical advocacy across the
autism spectrum: Beyond partial representation. The American Journal of
Bioethics, 20(4), 13-24.
McCready, J. (2019, July 15). The silencing of severe autism across the pond. National
Council on Severe Autism. Retrieved from https://www.ncsautism.org/blog//the-
silencing-of-severe-autism-across-the-pond
Can We Broaden the Neurodiversity Movement Without Weakening It?
48
Milner, P., & Frawley, P. (2018). From ‘on’to ‘with’to ‘by:’people with a learning
disability creating a space for the third wave of Inclusive Research. Qualitative
Research, 1468794118781385.
Milton, D. E. M. (2012). On the ontological status of autism: The “double empathy”
problem. Disability and Society, 27(6), 883–887.
https://doi.org/10.1080/09687599.2012.710008
Minkes, J., Townsley, R., Weston, C., Williams, C., & Tyrell, J. (1995). Having a voice:
Involving people with learning difficulties in research. British Journal of Learning
Disabilities, 23(3), 94-97.
Mogadam, A., Keller, A. E., Arnold, P. D., Schachar, R., Lerch, J. P., Anagnostou, E., &
Pang, E. W. (2019). Magnetoencephalographic (MEG) brain activity during a
mental flexibility task suggests some shared neurobiology in children with
neurodevelopmental disorders. Journal of Neurodevelopmental Disorders, 11, 19.
doi:10.1186/s11689-019-9280-2
Morrison, K. E., DeBrabander, K. M., Jones, D. R., Faso, D. J., Ackerman, R. A., &
Sasson, N. J. (2019). Outcomes of real-world social interaction for autistic adults
paired with autistic compared to typically developing partners. Autism,
1362361319892701.
Nadesan, M. (2013). Autism and genetics profit, risk, and bare life. In Worlds of autism:
Across the spectrum of neurological difference. pp 117-142. University of
Minnesota Press.
National Stuttering Association. (2019). About the NSA. Retrieved from
https://westutter.org/about-the-nsa
Ne'eman, A. (2010). The future (and the past) of Autism advocacy, or why the ASA’s
magazine, The Advocate, wouldn't publish this piece. Disability Studies Quarterly,
30(1).
Nicholas, D. B., Orjasaeter, J. D., & Zwaigenbaum, L. (2019). Considering
Methodological Accommodation to the Diversity of ASD: A Realist Synthesis
Review of Data Collection Methods for Examining First-Person Experiences.
Review Journal of Autism and Developmental Disorders, 6(2), 216-232.
Nicolaidis, C. (2012). What can physicians learn from the neurodiversity movement?.
AMA Journal of Ethics, 14(6), 503-510.
Nicolaidis, C., Raymaker, D., Kapp, S. K., Baggs, A., Ashkenazy, E., McDonald, K., ...
& Joyce, A. (2019). The AASPIRE practice-based guidelines for the inclusion of
autistic adults in research as co-researchers and study participants. Autism,
1362361319830523.
Nind, M., & Vinha, H. (2014). Doing research inclusively: bridges to multiple
possibilities in inclusive research. British Journal of Learning Disabilities, 42(2),
102-109.
NYC Stutters. (2018). One Day Conference for Adults who Stutter. Retrieved from
http://www.nycstutters.org/
O’Dell, L., Bertilsdotter Rosqvist, H., Ortega, F., Brownlow, C., & Orsini, M. (2016).
Critical autism studies: exploring epistemic dialogues and intersections,
challenging dominant understandings of autism. Disability & Society, 31(2), 166-
179.
Can We Broaden the Neurodiversity Movement Without Weakening It?
49
Ortega, F. (2013). Cerebralizing autism within the neurodiversity movement. Worlds of
autism: Across the spectrum of neurological difference, 73-95.
Pellicano, E., Dinsmore, A., & Charman, T. (2014a). What should autism research focus
upon? Community views and priorities from the United Kingdom. Autism, 18(7),
756-770.
Pellicano, E., Dinsmore, A., & Charman, T. (2014b). Views on researcher-community
engagement in autism research in the United Kingdom: a mixed-methods study.
PLoS One, 9(10), e109946
Pellicano, E., & Stears, M. (2011). Bridging autism, science and society: moving toward
an ethically informed approach to autism research. Autism Research, 4(4), 271-
282.
Penney, D., & Bassman, R. (2007). The independent living movement and people with
psychiatric disabilities: Searching for common ground.
Pierre, J. S. (2012). The construction of the disabled speaker: locating stuttering in
disability studies. In Literature, Speech Disorders, and Disability (pp. 17-31).
Routledge.
Prince, D. E. (2013). “All the things I have ever been” autoethnographic reflections on
academic writing and autism. Worlds of autism: Across the spectrum of
neurological difference, 319-330.
Pripas-Kapit, S. (2020). In Kapp, S. K. (Ed). Autistic Community and the Neurodiversity
Movement: Stories from the Frontline. Singapre: Palgrave Macmillan.
Putnam, M. (2005). Conceptualizing disability: Developing a framework for political
disability identity. Journal of Disability Policy Studies, 16(3), 188-198.
Quesal, R. W. (2012). The Person who Stutters as a Speech-Language Pathologist. In P.
Reitzes & D. Reitzes (Eds.), Stuttering: Inspiring stories and professional wisdom.
pp 219-228. Chapel Hill, NC: StutterTalk, INC.
Ramig, P. R. (1993). The impact of self-help groups on persons who stutter: A call for
research. Journal of Fluency Disorders, 18(2-3), 351-361.
Raymaker, D. M. & Nicolaidis, C. (2010). The Dynamics of Autistic-Academic
Community Partnerships. Dynamics, 9.
Raymaker, D., & Nicolaidis, C. (2013). Participatory research with autistic communities:
Shifting the system. In Worlds of autism: Across the spectrum of neurological
difference. pp 169-188. University of Minnesota Press.
Reser, J. E. (2011). Conceptualizing the autism spectrum in terms of natural selection and
behavioral ecology: the solitary forager hypothesis. Evolutionary Psychology, 9(2),
147470491100900209.
Riccio, A., Delos Santos, J., Kapp, S. K., Jordan, A., DeNigris, D., & Gillespie-Lynch, K.
(2020). Developing the multidimensional visual scale assessing affect, anxiety,
pride, and energy through a research partnership with autistic scholars. Autism in
Adulthood, 2(1), 87-100.
Robertson, S. M. (2010). Neurodiversity, quality of life, and autistic adults: Shifting
research and professional focuses onto real-life challenges. Disability Studies
Quarterly, 30(1).
Robison, J. (2013, October 7). What is neurodiversity? Neurodiversity means many
things to many people. Here’s my first-person definition. Psychology Today.
Can We Broaden the Neurodiversity Movement Without Weakening It?
50
Retrieved from https://www.psychologytoday.com/us/blog/my-life-
aspergers/201310/what-is-neurodiversity
Robison, J. E. (2019). Talking about autism—thoughts for researchers. Autism Research,
12(7), 1004-1006.
Sakamoto, I., & Pitner, R. O. (2005). Use of critical consciousness in anti-oppressive
social work practice: Disentangling power dynamics at personal and structural
levels. The British journal of social work, 35(4), 435-452.
Samson, F., Mottron, L., Soulières, I., & Zeffiro, T. A. (2012). Enhanced visual
functioning in autism: An ALE meta-analysis. Human brain mapping, 33(7), 1553-
1581.
Sasson, N. J., Faso, D. J., Nugent, J., Lovell, S., Kennedy, D. P., & Grossman, R. B.
(2017). Neurotypical peers are less willing to interact with those with autism based
on thin slice judgments. Scientific Reports, 7, 40700.
https://doi.org/10.1038/srep40700
Schwartz, A. E., Kramer, J. M., Cohn, E. S., & McDonald, K. E. (2019). “That Felt Like
Real Engagement”: Fostering and Maintaining Inclusive Research Collaborations
With Individuals With Intellectual Disability. Qualitative health research,
1049732319869620.
Seale, J., Nind, M., Tilley, L., & Chapman, R. (2015). Negotiating a third space for
participatory research with people with learning disabilities: An examination of
boundaries and spatial practices. Innovation: The European Journal of Social
Science Research, 28(4), 483-497.
Searle, K. A., Ellis, L., Kourti, M., MacLeod, A., Lear, C., Duckworth, C., ... & Simpson,
J. (2019). Participatory autism research with students at a UK university: evidence
from a small-scale empirical project. Advances in Autism, 5(2), 84-93.
Sequenzia, A. (2013). More problems with functioning labels.
https://ollibean.com/problems-functioning-labels/
Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008).
Psychiatric disorders in children with autism spectrum disorders: prevalence,
comorbidity, and associated factors in a population-derived sample. Journal of the
American Academy of Child & Adolescent Psychiatry, 47(8), 921-929.
Sinclair, J. (2010). Being autistic together. Disability Studies Quarterly, 30(1).
doi:10.18061/dsq.v30i1.1075
Sinclair, J. (2012). Autism Network International: the development of a community and
its culture. In J. Bascom (Ed.), Loud Hands: Autistic People, Speaking (pp. 17-48).
Washington, DC: The Autistic Press. Also available from
http://www.autreat.com/History_of_ANI.html.
Sinclair, J. (1993). Don’t mourn for us. Our Voice, 1(3). Retrieved from
http://www.autreat.com/dont_mourn.html.
Singer, J. (2017). Neurodiversity: the birth of an idea.
Singer, J. (2019). Neurodiversity 2.0. Reclaiming the Centre.
https://neurodiversity2.blogspot.com/p/what.html
Singh, J., Illes, J., Lazzeroni, L., & Hallmayer, J. (2009). Trends in US autism research
funding. Journal of Autism and Developmental Disorders, 39(5), 788-795.
Can We Broaden the Neurodiversity Movement Without Weakening It?
51
Stephens, E., & Cryle, P. (2017). Eugenics and the normal body: the role of visual images
and intelligence testing in framing the treatment of people with disabilities in the
early twentieth century. Continuum, 31(3), 365-376.
Sugarman, M. (1999). Overview and Brief History of the National Stuttering Association.
The Stuttering Homepage:
https://www.mnsu.edu/comdis/isad2/papers/sugarman2.html.
Tesfaye, R., Courchesne, V., Yusuf, A., Savion-Lemieux, T., Singh, I., Shikako-Thomas,
K., ... & Szatmari, P. (2019). Assuming ability of youth with autism: Synthesis of
methods capturing the first-person perspectives of children and youth with
disabilities. Autism, 1362361319831487.
Tetnowski, J., & McClure, J. (2010). Experiences of people who stutter: National
Stuttering Association 2009 survey. Paper presented at the Poster presentation at
the Annual Conference of the American Speech-Language-Hearing Association,
Philadelphia, PA.
Thomas, G. M., & Rothman, B. K. (2016). Keeping the backdoor to eugenics ajar?:
Disability and the future of prenatal screening. AMA journal of ethics, 18(4), 406-
415.
Trichon, M., & Tetnowski, J. (2011). Self-help conferences for people who stutter: A
qualitative investigation. Journal of Fluency Disorders, 36(4), 290-295.
Trichon, M., Tetnowski, J., & Rentschler, G. (2006). Perspective of participants of self-
help groups for people who stutter. Paper presented at the Research, treatment, and
self-help in fluency disorders: New horizons. Proceedings of the fifth world
congress on fluency disorders.
Vaughan, C., Khaw, S., Katsikis, G., Wheeler, J., Ozge, J., Kasidis, V., & Moosad, L.
(2019). ‘It is like being put through a blender’: inclusive research in practice in an
Australian university. Disability & Society, 34(7-8), 1224-1240
Walker, N. (2014). Neurodiversity: Some basic terms and definitions.
Neurocosmopolitanism. September, 27.
Walmsley, J. (2001). Normalisation, emancipatory research and inclusive research in
learning disability. Disability & Society, 16(2), 187-205.
Weidig, T. (2019). British Stammering Association Stammering Pride and Prejudice
Publication Facebook Announcement Retrieved from
https://www.facebook.com/stammeringbsa/posts/10156233774551813?comment_i
d=1015623635430681
White, D., Hillier, A., Frye, A., & Makrez, E. (2019). College students’ knowledge and
attitudes towards students on the autism spectrum. Journal of Autism and
Developmental Disorders, 49(7), 2699-2705.
Williams, V., Simons, K., & Swindon People First Research Team (2005). More
researching together: the role of nondisabled researchers in working with people
first members. British Journal of Learning Disabilities, 33(1), 6-14.
Wilson, E., Kenny, A., & Dickson-Swift, V. (2018). Ethical challenges in community-
based participatory research: A scoping review. Qualitative health research, 28(2),
189-199.
Wilson, R. A., & Pierre, J. S. (2016). Eugenics and Disability. In P. Devlieger, B.
Miranda-Galarza, S. E. Brown, & M. Strickfaden (Eds.), Rethinking Disability:
World Perspectives in Culture and Society (pp. 93-112). Antwerp, BE: Garant.
Can We Broaden the Neurodiversity Movement Without Weakening It?
52
Yaruss, J. S., Quesal, R. W., Reeves, L., Molt, L. F., Kluetz, B., Caruso, A. J., . . . Lewis,
F. (2002). Speech treatment and support group experiences of people who
participate in the National Stuttering Association. Journal of Fluency Disorders,
27(2), 115-133.
Yeoman, B. (2019). Stammer time. Baffler, 48. Retrieved from:
https://thebaffler.com/salvos/stammer-time-yeoman
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Table 1. Reflexivity Statements
Dr. Kristen Gillespie-Lynch began working with autistic people as a caregiver for non-speaking
youth 19 years ago. She was immediately struck by the depth and uniqueness of the autistic
young people she worked with and initially educated herself by reading scientific articles and
autobiographies. She became interested in the neurodiversity movement during her doctoral
research at UCLA and developed a survey to study neurodiversity which she was not able to
successfully recruit for until she started collaborating with Steven K. Kapp. Kristen’s doctoral
research was fairly medical model, focused on visual search and joint attention in relation to
current and later skills in autism. However, she has many friends and family members who are
autistic so was drawn to the neurodiversity movement upon first encountering it. Soon after
joining the Psychology Department at the College of Staten Island and the Graduate Center,
Kristen started a mentorship program for autistic college students. She aimed for the program to
be participatory but the process of becoming participatory took time, as described in this paper.
Although Patrick Dwyer is an empirical researcher who has worked in research institutions that
are influenced by a medical model, Patrick is also a neurodivergent autistic person and identifies
as part of the neurodiversity movement and autistic community. The college peer-support
communities in which Patrick has participated have been led by neurodivergent people,
including Patrick, who are members of the communities, with only limited involvement from
typically-developing individuals. The communities have not been part of formal research
studies and statements regarding the programs are based on Patrick’s subjective impressions.
Dr. Christopher Constantino is a stutterer, speech-language pathologist, assistant professor in
communication sciences and disorders, and active member of the stuttering self-help movement.
Christopher believes that embracing stuttering as a neurodivergent trait, rather than a medical
pathology, will reduce social stigma and discrimination, expose the positive aspects of
stuttering, and improve the quality of life of his fellow stutterers.
The neurodiversity paradigm appealed to Dr. Steven K. Kapp because its advocacy for practical
support for autistic people’s needs and rights to live fully in the community offered a compelling
alternative to the harmful cure movement that dominated autism research and advocacy
(especially in the surrounding Los Angeles area). Its complex view of autism resonated with his
identity linked to autistic traits associated with both his strengths and weaknesses, and its origins
from the autistic “grassroots” lent it legitimacy. The neurodiversity movement inspired him to
become a researcher and activist, having influenced the revision of autism’s diagnosis in the
DSM-5, co-led trailblazing studies, edited a book featuring neurodiversity advocates’ first-hand
accounts, and now begun to develop a pioneering, broad neurodiversity studies university class.
Dr. Emily Hotez is a research scientist at the UCLA Center for Healthier Children, Families, &
Communities where she conducts life course intervention research for children and families.
Prior to her current position, she collaborated on the development, implementation, and
evaluation of a participatory research study of a summer transition program for incoming
neurodiverse college students. Through this work, she gained a critical appreciation of the
importance of ensuring that interventions are reflective of the needs, experiences, and priorities
of the populations they seek to serve. In her current research, she prioritizes collaborations and
partnerships that facilitate a co-design process for all interventions and educational programs.
Ariana Riccio is a doctoral candidate at the City University of New York in the final stages of
her dissertation work focused on autistic identity development in autistic adolescents and young
adults. Over the past 4 years she has focused on using participatory methods in her research
endeavors and has coordinated a mentorship program with and for autistic college students.
Can We Broaden the Neurodiversity Movement Without Weakening It?
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These experiences have been the most relevant and informative aspects of her doctoral training
and she believes that partnerships with neurodivergent communities are essential to any and all
research in this space. As a neurotypical person, she acknowledges the need to carefully consider
one’s positionality and aims to allow the experiences of neurodivergent communities to drive
research and practice.
Dr. Danielle DeNigris is a neurotypical Assistant Professor in the School of Psychology and
Counseling at Fairleigh Dickinson University. Her interest in autism research began while
pursuing her doctoral degree at the City University of New York which led to her collaboration
with a neurodivergent group of researchers. Prior to her current faculty position, Danielle served
as the coordinator for a peer-mentorship program for neurodiverse college students. These
experiences informed her understanding of neurodiversity and the meaning of true participatory
work. As a neurotypical female, Danielle has learned through collaborations with this
participatory research group, that authentic collaboration requires the need to explore (and to
personally consider) power imbalances and biases in order to yield an inclusive space where
research can thrive.
Bella Kofner is a researcher who identifies as a part of the autistic community. Bella has been a
part of Project REACH at CSI where she did the transition from mentee to mentor. She also
does many presentations, including neurodiversity in the workplace and gender inequality in
autism. Neurodiversity is about celebrating human differences, so Bella believes that every
person deserves to have equal opportunity in the workplace by bringing their skills to the job
regardless of who they are. Bella believes that women who are in STEM and who have autism
can bring their skills to any career of their choice, especially for jobs that are in a male-dominant
field.
As a psychologist, autistic adult and parent of an autistic adult, Dr. Eric Endlich knows well the
impact on neurodivergent individuals of being marginalized. His personal experiences have led
to a passionate pursuit of inclusion by speaking and writing about neurodiversity and helping
neurodivergent teens successfully transition to higher education.
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Table 2. How can tensions within the neurodiversity movement inform alliance building?
“When power dynamics give power to neurotypicals, emphasis is placed on changing autistic
people rather than on changing how neurotypicals interact with autistic people.”
-Patrick Dwyer, planning document
“The whole dynamic needs to change, as long as intervention is focused on making the
“person with the issue” more like “people without the issue,” we’re still operating with a
medically driven paradigm. We’re just using different words to describe it. The whole point of
neurodiversity is to level the playing field and think about building spaces that allow as many
people as possible to access resources and relationships within those spaces. The upshot is
that everyone who contributes to those spaces may need to change, not just the people who
carry medical diagnoses. At its most basic level, an ally is someone who is willing to change to
create a space that accommodates a greater range of human diversity.”
-Response from Christopher Constantino
“Perhaps being an ally means that you don’t look at accommodations as something you
provide for the autistic (or other) person, but something that the ally actually does themselves,
making this idea of accommodations an active verb rather than a noun.”
-Response from Danielle Denigris, a “neurotypical” researcher and co-author
“In so doing, the ally is often giving up a privileged position. To achieve equality, it is often
not enough to try to raise someone up, sometimes you must lower yourself to their level and
deal with their problems with them. The implication is allyship is not an attitude or an
orientation but requires work. Someone can care about autistics without being an ally. What
makes them an ally is their willingness to do, at their own expense, something about the
situation.”
-Response from Christopher Constantino
“I agree that the power differential is a critical element not just in terms of how
neurodivergent people are treated, but how they are defined. Those who define neurodivergent
individuals as deficient and in need of correction are able to do so in part because of their
superior numbers, but also because of their perceived expertise and status. Perhaps some of us
who are neurodivergent and also have some of the markers of expertise such as graduate
degrees will be able to help facilitate communication between neurodivergent and
neurotypical communities…It makes sense that an umbrella neurodiverse community (vs. just
an autistic or stuttering community) would be able to command more attention and respect -
assuming we can organize.”
-Response from Eric Endlich, an autistic psychologist and co-author
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“One background point might be the conventional power relationship in the delivery of
supports and services, wherein the person providing the support has expertise, knowledge, etc.
The support system is also an institution that defines the options available to support seekers;
they must navigate within these options and not others.”
-Patrick Dwyer
