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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.
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.”
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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.
Can We Broaden the Neurodiversity Movement Without Weakening It?
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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?
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?
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?
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?
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?
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?
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?
(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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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?
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Can We Broaden the Neurodiversity Movement Without Weakening It?
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?
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.
Can We Broaden the Neurodiversity Movement Without Weakening It?
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
Can We Broaden the Neurodiversity Movement Without Weakening It?
“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
Article
Stuttering has traditionally been thought of as a defect located within an individual. As such, stuttering is caused by pathology, leading to impaired communication and reduced quality of life. Research from this medical tradition has looked to understand the etiology of stuttering to develop curative therapeutic approaches. From this frame, professionals and academics are experts and holders of knowledge; people who stutter the recipients of this expertise. The social model emerged from within the disability rights movement and offers a counter narrative. It sees the way society is structured as disabling rather than physical impairment itself. Disability is experienced when a person is unable to participate fully in society through a mismatch between their body and the environment around them; thus, disability becomes a dynamic process, not an inherent characteristic. The social model highlights society's norms and values, and, in the case of stuttering, demonstrates how society is designed for, and expects, fluent speakers. From this frame, people who stutter are the experts of their experience and holders of knowledge; professionals and academics are their allies, collaborators, and advocates for social change. This theoretical framework poses challenging questions of the foundational theories upon which stuttering therapy is historically rooted. They call into question the hierarchical structures, power dynamics and even purpose of stuttering therapy and research. In this discussion paper, we will explore the social model of disability and its implications for stuttering therapy and research. We discuss the benefits of a social model approach as well as its limitations.
Preprint
Full-text available
Singer intended for neurodiversity to be a new category of intersectionality. However, intersectionality has been neglected in autism research and practice. This paper aims to inform an intersectional approach to autism by exploring autistic identity development in relation to other marginalized identities. We reviewed literature about intersectionality, discrimination, and the identity development of autistic people, racial-ethnic minorities, and gender and sexual minorities. We discuss minority stress and evidence that cultural traditions alleviate it. Autistic culture can reframe personal difficulties as a politicized struggle. While the stereotype of autism is one of withdrawal, the history of autistic people coming together for justice defies this notion. Intersectionality teaches us that we must understand differences within the autistic community if we wish to help all autistic people experience the dignity they deserve. Using an intersectional lens, we can become more flexible in our understanding of positive autistic identity development and strategies to promote it.
Thesis
Full-text available
Personal identities grow and change across development, co-constructed and renegotiated within our environment, through our interactions, and by our relationships with the people and places around us. This dissertation aimed to explore the development of autistic identity in adolescence as influenced by parents, introduces a novel method for measuring emotions and autistic identity where participants rate their emotional responses to autistic experiences, and explores the influence that colleges and universities may have on autistic identity in young autistic adults. In a study of 19 autistic adolescents and their parents, if and how parents disclosed an autism diagnosis to their child impacted the autistic child’s own perceptions of autism. To assess autistic identity in college students and address a gap in currently available assessments of autistic identity, this dissertation embarked on the development of a novel measure of autistic identity in partnership with autistic researchers. When surveying 71 university-level students, strengths-based programming was associated with autistic pride and increased self-esteem, well-being, and belonging at university. This study also reports on the services and accommodations used by students, which services were found to be most helpful, and how students would like to see services at their university improved. These studies highlight the importance of positive perceptions of autism and strengths-based spaces created by and for autistics to foster positive autistic identity. Recommendations concerning if and how parents choose to speak with their children about an autism diagnosis and how university supports may be developed in a participatory manner to have the most positive impact on development are discussed throughout.
Conference Paper
Full-text available
This e-poster, showing that a participatory (developed in collaboration with autistic college students) and a non-participatory training were associated with improvements in explicit and implicit stigma and autism knowledge, was accepted as a talk at INSAR 2020, which was cancelled due to COVID-19.
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Recent debates within the autism advocacy community have raised difficult questions about who can credibly act as a representative of a particular population and what responsibilities that role entails. We attempt to answer these questions by defending a set of evaluative criteria that can be used to assess the legitimacy of advocacy organizations and other nonelectoral representatives. With these criteria in hand, we identify a form of misrepresentation common but not unique to autism advocacy, which we refer to as partial representation. Partial representation occurs when an actor claims to represent a particular group of people but appropriately engages with only a subset of that group. After highlighting symbolic and substantive harms associated with partial representation, we propose several strategies for overcoming it.
Book
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This open access book marks the first historical overview of the autism rights branch of the neurodiversity movement, describing the activities and rationales of key leaders in their own words since it organized into a unique community in 1992. Sandwiched by editorial chapters that include critical analysis, the book contains 19 chapters by 21 authors about the forming of the autistic community and neurodiversity movement, progress in their influence on the broader autism community and field, and their possible threshold of the advocacy establishment. The actions covered are legendary in the autistic community, including manifestos such as “Don’t Mourn for Us”, mailing lists, websites or webpages, conferences, issue campaigns, academic project and journal, a book, and advisory roles. These actions have shifted the landscape toward viewing autism in social terms of human rights and identity to accept, rather than as a medical collection of deficits and symptoms to cure.
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In 1996 Martijn Dekker of the Netherlands founded Independent Living on the Autistic Spectrum (InLv), an e-mail list for autistic people. First run by hand on dial-up, InLv was also the first fully autistic-run, self-hosted online autism community. With forums on topics from “advocacy” to “brain” to daily living such as “self-care”, “employment”, “social”, and “family”, InLv provided a venue for discussions that gave rise to neurodiversity concepts and members published influential essays that remain online. The group provided mutual support to accept autistic people as individuals, promoting inclusion and resisting conformity while helping one another to self-advocate and secure civil rights and appropriate services.
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Sharon daVanport created the Autism Women’s Network (now known as the Autistic Women and Non-Binary Network, but still referred to by the original acronym: AWN, awnnetwork.org) in 2009. They channeled their curiosities and disappointments into something generative: an intersectional autistic organization. AWN sees itself as part of the wider disability rights movement. They see their quest to be to fight for autistic rights, and appreciate their place as being part of the greater civil rights movement for disabled people.
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Background: Children with neurodevelopmental disorders (NDDs) exhibit a shared phenotype that involves executive dysfunctions including impairments in mental flexibility (MF). It is of interest to understand if this phenotype stems from some shared neurobiology. Methods: To investigate this possibility, we used magnetoencephalography (MEG) neuroimaging to compare brain activity in children (n = 88; 8-15 years) with autism spectrum disorders (ASD), attention deficit hyperactivity disorder (ADHD) and obsessive-compulsive disorder (OCD), as they completed a set-shifting/mental flexibility task. Results: Neuroimaging results revealed a similar parietal activation profile across the NDD, groups suggesting a link to their shared phenotype. Differences in frontal activity differentiated the three clinical groups. Brain-behaviour analyses showed a link with repetitive behaviours suggesting shared dysfunction in the associative loop of the corticostriatal system. Conclusion: Our study supports the notion that NDDs may exist along a complex phenotypic/biological continuum. All NDD groups showed a sustained parietal activity profile suggesting that they share a strong reliance on the posterior parietal cortices to complete the mental flexibility task; future studies could elucidate whether this is due to delayed brain development or compensatory functioning. The differences in frontal activity may play a role in differentiating the NDDs. The OCD group showed sustained prefrontal activity that may be reflective of hyperfrontality. The ASD group showed reduced frontal activation suggestive of frontal dysfunction and the ADHD group showed an extensive hypoactivity that included frontal and parietal regions. Brain-behaviour analyses showed a significant correlation with repetitive behaviours which may reflect dysfunction in the associative loop of the corticostriatal system, linked to inflexible behaviours.
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**Full-text is available upon request from any of the authors of this manuscript** Autism research studies have traditionally failed to represent the full diversity of the autism spectrum due to the lack of measures available for use with participants who prefer to express themselves visually. A multidimensional measure of emotions which can include both picture and text-based prompts may improve accessibility of emotion rating measures and broaden participation in research and educational evaluations to include those who communicate in diverse ways. Picture-based measures designed to assess participants’ emotions may be useful for research concerning autistic identity and service evaluation, two areas where representation of diverse perspectives is needed. Our participatory group of autistic and non-autistic researchers developed a Multidimensional Scale Assessing Affect, Anxiety, Pride and Energy (AAPE) by adapting and expanding upon an existing emotion rating scale. When testing the AAPE with autistic college students (n=72), college students’ open-ended responses indicated that the AAPE’s dimensions of affect (97.2% correct), anxiety (79.2% correct), and energy (84.7% correct) were well comprehended without text-based labels with potential for improvement in how pride (52.8% correct) was represented. When provided with the labels that each dimension was intended to represent, participants generally agreed that each emotional dimension was well-represented. When tested in an informal educational summer camp with autistic children and adolescents (n=50), the AAPE was well-received and revealed insights about the students’ emotional responses to different instructional strategies that can guide curricular improvements. The AAPE has utility as a tool to help diverse autistic individuals self-advocate and improve research and services.
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Differences in social communication and interaction styles between autistic and typically developing have been studied in isolation and not in the context of real-world social interaction. The current study addresses this “blind spot” by examining whether real-world social interaction quality for autistic adults differs when interacting with typically developing relative to autistic partners. Participants (67 autism spectrum disorder, 58 typically developing) were assigned to one of three dyadic partnerships (autism–autism: n = 22; typically developing–typically developing: n = 23; autism–typically developing: n = 25; 55 complete dyads, 15 partial dyads) in which they completed a 5-min unstructured conversation with an unfamiliar person and then assessed the quality of the interaction and their impressions of their partner. Although autistic adults were rated as more awkward, less attractive, and less socially warm than typically developing adults by both typically developing and autistic partners, only typically developing adults expressed greater interest in future interactions with typically developing relative to autistic partners. In contrast, autistic participants trended toward an interaction preference for other autistic adults and reported disclosing more about themselves to autistic compared to typically developing partners. These results suggest that social affiliation may increase for autistic adults when partnered with other autistic people, and support reframing social interaction difficulties in autism as a relational rather than an individual impairment.
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Background: Autistic adults receive unfavorable first impressions from typically developing (TD) adults, but these impressions improve when TD adults are made aware of their diagnosis. It remains unclear, however, how autistic adults form first impressions of other autistic adults, and whether their impressions are similarly affected by diagnostic awareness. Methods: In this study, 32 autistic and 32 TD adults viewed brief videos of 20 TD and 20 autistic adults presented either with or without their diagnostic status and rated them on character traits and their interest in interacting with them in the future. Results: Findings indicated that autistic raters shared the TD tendency to evaluate autistic adults less favorably than TD adults, but these judgments did not reduce their social interest for interacting with autistic adults as they did for TD raters. Furthermore, informing raters of the diagnostic status of autistic adults did not improve first impressions for autistic raters as they did for TD raters, suggesting that autistic raters either already inferred their autism status when no diagnosis was provided or their impression formation is less affected by awareness of a person's diagnosis. Conclusions: Collectively, these results demonstrate that autistic observers make trait inferences about autistic adults comparable with those made by TD observers-suggesting a similar sensitivity to perceiving and interpreting social signifiers that differ between TD and autistic presentation styles-but unlike their TD counterparts, these trait judgments are not perceived as an impediment to subsequent social interaction and are relatively consistent regardless of diagnostic disclosure.