Autistic Self-Advocacy and the Neurodiversity Movement: Implications for Autism Early Intervention Research and Practice

Abstract

The growth of autistic self-advocacy and the neurodiversity movement has brought about new ethical, theoretical and ideological debates within autism theory, research and practice. These debates have had genuine impact within some areas of autism research but their influence is less evident within early intervention research. In this paper, we argue that all autism intervention stakeholders need to understand and actively engage with the views of autistic people and with neurodiversity as a concept and movement. In so doing, intervention researchers and practitioners are required to move away from a normative agenda and pay diligence to environmental goodness-of-fit, autistic developmental trajectories, internal drivers and experiences, and autistic prioritized intervention targets. Autism intervention researchers must respond to these debates by reframing effectiveness, developing tools to measure autistic prioritized outcomes, and forming partnerships with autistic people. There is a pressing need for increased reflection and articulation around how intervention practices align with a neurodiversity framework and greater emphasis within intervention programmes on natural developmental processes, coping strategies, autonomy, and well-being.

Full text

PERSPECTIVE
published: 12 April 2021
doi: 10.3389/fpsyg.2021.635690
Frontiers in Psychology | www.frontiersin.org 1April 2021 | Volume 12 | Article 635690
Edited by:
Laura Crane,
University College London,
United Kingdom
Reviewed by:
Sue Fletcher-Watson,
University of Edinburgh,
United Kingdom
Kristen Marie Bottema-Beutel,
Boston College, United States
*Correspondence:
Kathy Leadbitter
kathy.leadbitter@manchester.ac.uk
Specialty section:
This article was submitted to
Psychology for Clinical Settings,
a section of the journal
Frontiers in Psychology
Received: 30 November 2020
Accepted: 23 February 2021
Published: 12 April 2021
Citation:
Leadbitter K, Buckle KL, Ellis C and
Dekker M (2021) Autistic
Self-Advocacy and the Neurodiversity
Movement: Implications for Autism
Early Intervention Research and
Practice. Front. Psychol. 12:635690.
doi: 10.3389/fpsyg.2021.635690
Autistic Self-Advocacy and the
Neurodiversity Movement:
Implications for Autism Early
Intervention Research and Practice
Kathy Leadbitter 1
*, Karen Leneh Buckle 1,2 , Ceri Ellis 1and Martijn Dekker 2,3
1Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, United Kingdom, 2The
Autscape Organisation, Coventry, United Kingdom, 3The European Council of Autistic People, Prague, Czechia
The growth of autistic self-advocacy and the neurodiversity movement has brought
about new ethical, theoretical and ideological debates within autism theory, research
and practice. These debates have had genuine impact within some areas of autism
research but their influence is less evident within early intervention research. In
this paper, we argue that all autism intervention stakeholders need to understand
and actively engage with the views of autistic people and with neurodiversity as a
concept and movement. In so doing, intervention researchers and practitioners are
required to move away from a normative agenda and pay diligence to environmental
goodness-of-fit, autistic developmental trajectories, internal drivers and experiences, and
autistic prioritized intervention targets. Autism intervention researchers must respond to
these debates by reframing effectiveness, developing tools to measure autistic prioritized
outcomes, and forming partnerships with autistic people. There is a pressing need
for increased reflection and articulation around how intervention practices align with
a neurodiversity framework and greater emphasis within intervention programmes on
natural developmental processes, coping strategies, autonomy, and well-being.
Keywords: autism, children, neurodiversity, self-advocacy, early intervention
INTRODUCTION
The last two decades have brought about huge socio-political shifts within the world of autism
theory, research and practice. In the mid-1990s, the emergence of the internet provided a more
accessible text-based means of communication and empowered a growing number of autistic
people to connect and share ideas with one another (Dekker, 2020)1. Out of the early autistic
social groups of the 1990s emerged autistic culture, the autistic self-advocacy movement, and the
assertion that autism is a valid way of being. This environment also gave rise to the neurodiversity
movement (Singer, 1998). Through the 2000s, the neurodiversity movement has been galvanized in
a large part due to the voices, advocacy and protest of the autistic community, facilitated through
1We use identity-first language in keeping with the preference of many autistic people (Kenny et al., 2016). We also use the
more neutral term “autism” rather than “Autism Spectrum Disorder”.

Leadbitter et al. Autistic Self-Advocacy, Neurodiversity, and Early Intervention
developments in online communication and networks
(Kras, 2009) and is increasingly influencing academic,
clinical and lay understanding of autism and other forms
of neurological difference.
A central premise of the neurodiversity movement is that
variations in neurological development and functioning across
humans are a natural and valuable part of human variation
and therefore not necessarily pathological (e.g., Jaarsma and
Welin, 2012; Kapp, 2020). Neurodiversity as a social justice and
civil rights movement intersects with the wider disability rights
movement (Hughes, 2016). The most significant premise of both
is that disability is not simply a defect in the individual, but arises
from the interaction between a non-standard individual and an
unaccommodating environment (the social model of disability;
Oliver, 1990). Consistent with this stance, many neurodiversity
proponents do view autism as a disability. From this theoretical
underpinning, the neurodiversity movement makes several
demands, including the recognition and acceptance of the value
of cognitive variation as a form of biodiversity and hence
its positive contribution to groups, communities and societies
(the social-ecological perspective; Chapman, 2020) and equal
rights leading to an end to discriminatory policies and practices
(Runswick-Cole, 2014).
The amplification of autistic viewpoints, coupled with the
traction of neurodiversity as a concept and movement, has led to
the emergence of new ethical, theoretical and ideological debates.
These debates and discussions have had genuine impact within
some areas of autism research, predominantly that focused
on adults. Examples of this impact include: (a) debates over
whether the social difficulties experienced by autistic people
are best understood as being a problem within the individual,
or a problem between two (mis-matched) individuals, and
the resulting research into the Double Empathy Problem and
diversity in social intelligence (Milton, 2012; Crompton et al.,
2020); (b) calls from the autistic community for a greater
emphasis on improving mental health and quality of life in
autistic individuals (Autistica, 2015; National Autistic Taskforce,
2019) and an increase in research into effective, person-centered
mental health interventions (e.g., Crane et al., 2019; Cassidy
et al., 2020; Parr et al., 2020) and (c) research into community
preferences over the language used to describe autism and autistic
people (e.g., Kenny et al., 2016; Bury et al., 2020). Despite these
impacts within adult-focussed research, these debates are still
rarely directly addressed in early intervention research, where
the impact of the autistic viewpoint is often implicit or not
present at all. The absence of clear and proactive engagement
with these debates contributes to a lack of confidence in an
evidence base that has already shaky foundations due to its poor
methodological quality and widespread unreported conflicts of
interest (e.g., French and Kennedy, 2018; Bottema-Beutel et al.,
2020; Sandbank et al., 2020). In this paper, we argue that
all autism intervention stakeholders need to understand and
actively engage with these debates. We focus on psychosocial
intervention programmes that aim to improve aspects of
young autistic children’s cognitive, behavioral, emotional, or
relational functioning and reflect on the purpose of early autism
intervention, the types of intervention methods we use, and how
these align with the priorities of autistic people. We then reflect
upon issues pertinent to research into early autism intervention
and the challenges and opportunities presented by these shifts,
pointing to future directions.
IMPLICATIONS FOR EARLY AUTISM
INTERVENTION
Whilst there is agreement amongst most of the autistic
community, clinicians, and researchers that interventions should
be available to help autistic people of all ages to thrive and
reach their potential (UK Parliament, 2020), there are many
controversies surrounding what this means in practice. Until the
1990s, it was common to consider therapy for autistic children
as a means of reaching the child within their “autistic shell” and
drawing them out, resulting in a normal or near-normal child
(e.g., Park, 1972; Kaufman, 1976; Maurice, 1998). The earliest
actions of the autistic self-advocacy movement were to call for
the recognition of autism as an essential aspect of the person
(Sinclair, 1993). Autistic self-advocates opposed early autism
interventions with a stated treatment goal to make a child no
longer, or less, autistic. However, some stakeholders, in particular
parents of autistic children with substantial intellectual, language
and behavioral challenges, argued that autistic adults without
these challenges could not speak to their children’s experience,
and that their children required such interventions in order
to achieve a reasonable quality of life (Dekker, 2017; Fletcher-
Watson, 2018). This disagreement has yet to be fully resolved.
Some activists continue to argue that any attempt to alter
an autistic person is misguided, thereby rejecting any form
of early intervention (e.g., Stevenson, 2015). Some autistic
people, parents or other stakeholders continue to oppose
neurodiversity as a concept or social movement, arguing, for
example, that it presents a sanitized view of autism, excludes
those with significant language or intellectual disability, and
deflects resources from those most in need of support (Happé and
Frith, 2020; Hughes, 2020).
Objections to neurodiversity are often based on an erroneous
conception of the tenets of the movement (den Houting,
2019). Fundamentally, neurodiversity emphasizes the collective
strength inherent in cognitive diversity (Chapman, 2020)
and that this strength arises from all kinds of differences,
including those associated with autism, intellectual disability or
language impairment (Kapp, 2020). Moreover, neurodiversity
activism, which includes some non-speaking activists, specifically
includes and advocates for those who are unable to do so
themselves. A balanced view of neurodiversity recognizes that,
whilst diversity brings fundamental collective advantages, within
any one neurodivergent individual weaknesses are often the
inextricable partner of strengths, and that individuals can want
things to be different and still want to be themselves. It
includes the understanding that some neurological differences
are disadvantageous, either inherently or in interaction with
the environment, and could benefit from correspondingly
targeted intervention.
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Leadbitter et al. Autistic Self-Advocacy, Neurodiversity, and Early Intervention
Adopting this balanced account of neurodiversity, we can
derive three important implications for intervention. Firstly,
neurodiversity-informed intervention opposes any attempt to
“cure” or “normalize” autistic children, and, whilst in many
contexts this talk is no longer acceptable (Happé and Frith,
2020), there are still many interventions purporting an explicit
or implicit curative or normative agenda (Mottron, 2017). This
opposition is conceptual: even if it were desirable, it would not
be possible to cure someone of an innate neurological difference.
It is also existential: autism is so pervasive and profound,
that attempts to target autism itself fundamentally changes the
person; many autistic people have equated being cured of autism
as tantamount to death, as they would be a completely new
individual (Sinclair, 1993). There is also increasing evidence to
support opposition on ethical grounds as: (a) this approach leads
to individuals “masking” their autism or attempting to “pass”
as neurotypical at a huge cost to their mental health and well-
being (Milton and Moon, 2012; Mandy, 2019) and (b) many
intervention programs attempt to teach “normative behavior”
without referencing empirical evidence for what “normative
behavior” looks like and thereby teach autistic children to behave
in ways that do not actually resemble autistic or non-autistic
children (Bottema-Beutel et al., 2018).
Secondly, interventions informed by neurodiversity do
carefully address any extrinsic factors around an autistic
child that contribute to disadvantage and negative experiences
and therefore aim to improve the “goodness of fit” between
the child and their physical or socio-emotional environment
(Lai and Szatmari, 2019). Interventions that encourage and
provide opportunities for physical, sensory and emotional
regulation (e.g., sensory integration therapy, Randell et al., 2019)
are compatible with this stance. Interventions can promote
an understanding of autism and neurodiversity in people
in the child’s world, such as caregivers (e.g., EMPOWER-
ASD intervention,2Systemic Autism-related Family Enabling
intervention, McKenzie et al., 2019; SOLACE programme,
Lodder et al., 2020), and education professionals and peers
(e.g., Learning about Neurodiversity at School project3).
These interventions also support non-autistic people to build
resilience, develop a positive philosophy toward the autistic
child, and to build relationships in a respectful, supportive
and harmonious manner. Targeted interventions for autistic
children can also build effective communication between the
child and others, for example, by coaching caregivers and
education professionals to “speak the child’s language” (e.g.,
Paediatric Autism Communication Therapy; Pickles et al.,
2016; Green et al., 2018). Other interventions aim to support
neurodivergent children by working with them directly to
understand their autism and build self-awareness and self-
esteem (e.g., Pegasus, Gordon et al., 2015; the Spectacular
Girls programme4). Intervention efforts that target the child’s
environment may address early external causes of distress
(e.g., non-acceptance/non-accommodation of needs, bullying,
2www.reach-asd.org.
3https://dart.ed.ac.uk/research/leans/.
4https://helenclarkeautism.com/spectacular-girls.
and exclusion) and therefore help to prevent future mental
health problems.
A third implication for interventions concerns those aspects of
autism that are disadvantageous in and of themselves. A balanced
view of neurodiversity mandates that specific characteristics of
autism be depathologised, unless those characteristics cause harm
or discomfort to the individual or a violation of others’ rights.
The complexity for autism interventions concerns the fine line
between supporting a child’s development and attempting to
change the essence of the person. It also concerns the fine balance
between accommodation of autistic behaviors and the alleviation
of actually or potentially detrimental cognitive or behavioral
phenomena. This balance is challenged by differing opinions
as to what constitutes and causes suffering, and difficulties in
ascertaining the views of individual children due to their young
age, communication difficulties, and lack of understanding of
potential future consequences. There are no simple solutions to
these complexities. However, there are some principles that can
guide us in a direction that is consistent with autistic viewpoints
and a neurodiversity stance.
Consideration of Internal Drives and
Experiences
A key principle concerns looking beyond observable behavior to
consider internal drives and experiences. An under-appreciation
of the sensory and emotional experiences of neurodivergent
children can result in attempts to reduce or eliminate natural
coping and self-regulation strategies, such as repetitive motor
mannerisms or “stimming” behaviors (Bascom, 2012; Kapp et al.,
2019). Eliminating such behaviors can lead to children being
unable to avoid aversive experiences, calm themselves, or to
communicate intense emotions (Kapp et al., 2019). Moreover,
there is increasing evidence that different developmental routes
can lead to the same outcome, whereby atypical developmental
processes are actually beneficial to that individual’s intrinsic
developmental trajectory; examples are echolalia and hyperlexia
as alternative routes into functional spoken language (Mottron,
2017). Focussing on reduction of the behaviors that define the
autism diagnosis fails to consider that these behaviors are the
outcome of different underlying neurology and interfering with
them may undermine a child’s natural coping strategies and
development. Early interventions should therefore work with
(not against) the child’s developmental trajectory, as well as with
their natural way of learning (Fletcher-Watson, 2018).
Re-evaluation of Intervention Targets
We should evaluate the motivations driving the decisions around
intervention targets and not assume that the things that make a
good neurotypical life are identical to autistic priorities (Buckle,
2013; Milton, 2014; Iemmi et al., 2017). Active listening to the
autistic community helps understand autistic priorities around
intervention targets, as does close attention to research that
highlights the phenomena that cause autistic people difficulty
or distress, affect quality of life and for which autistic people
actively ask for support. Examples include autistic inertia (Buckle
et al., 2020), life skills (Pellicano et al., 2014), intolerance
of uncertainty (Rodgers et al., 2018), and anxiety (Robertson
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Leadbitter et al. Autistic Self-Advocacy, Neurodiversity, and Early Intervention
et al., 2018). Certainly, avoiding intervention techniques that
themselves cause emotional harm is crucial, and a key underlying
principle is to support the autistic child’s ability to exert choice
and control in their life as they develop.
Emphasis on Strengths, Pleasure, and
Well-Being
Interventions should respect and enhance those things that bring
happiness and joy. Passionate interests can bring pleasure and
relaxation through repetition or intensity of immersion in tasks,
behaviors or objects (e.g., autistic reflections on flow states;
Murray et al., 2005; McDonnell and Milton, 2014). Predictable
access to preferred activities not only decreases expressions
of negative emotions (sometimes manifest as “challenging
behavior”) but also can provide opportunities for expertise and
genuine social bonding (Mottron, 2017; Grove et al., 2018; Wood,
2019). The adoption of a positive psychology and strengths-based
stance (Burnham Riosa et al., 2017; Dykshoorn and Cormier,
2019) refocuses intervention efforts away from reducing deficits
and toward enhancing those activities or skills that naturally
lead to learning, social connection, and well-being. Intervention
efforts should leave alone unconventional characteristics that
cause no harm to self or other, such as a monotone voice or
preference for solitude. Lifespan research into the childhood
factors that are associated with long-term well-being will enable
us to boost these important factors through early intervention
(Rodogno et al., 2016; Pickles et al., 2020).
Promotion of Autonomy
The final fundamental principle concerns autonomy and the
right to say “no”. Poignant accounts from autistic adults
describe the use within early interventions of overbearing
physical prompting, ignoring of communication attempts, or
outright removal of their right to communicate “no” and how
this left them passive, traumatized, and vulnerable to abuse
(Kirkham, 2017; McGill and Robinson, 2020). These practices
must be avoided. Autonomy is essential to creating the life
one wants to lead (National Autistic Taskforce, 2019; Späth
and Jongsma, 2020). In order to achieve any significant level
of autonomy, one must have functional communication, so
interventions supporting communication (not simply speech)
and understanding required for the expression of autonomy
are justified, as long as they are undertaken ethically, with true
respect for the individual.
APPLICATION OF THE NEURODIVERSITY
FRAMEWORK TO AUTISM INTERVENTION
RESEARCH
Re-Framing Effectiveness
Early intervention researchers understand the importance of an
evidence base and effectiveness is often the key factor when
evaluating evidence. Clearly, it is critical that research informs
us about intervention effectiveness – no one wants to spend
limited resources on interventions that do not work. However,
effectiveness needs to be understood within the context of the
above principles. While an intervention may be effective at
reducing autistic behavior, if it leaves the child without coping
mechanisms or at risk of mental health difficulties, it has not been
effective in improving their life. We need to reframe effectiveness
to concentrate on the outcomes that are most important to the
long-term well-being and autonomy of the children involved and
the preferences and priorities of autistic people (Neumeier and
Brown, 2020); research can then evaluate the extent to which
these prioritized outcomes are (or are not) improved by any
particular intervention.
Outcome Measurement
The landscape of tools used to measure intervention outcomes
is strongly focused on the reduction of autism symptoms (e.g.,
Provenzani et al., 2020). Conceptually, this falls squarely within a
normalization agenda: if children’s autistic behaviors are reduced
sufficiently, they will no longer meet the criteria for autism.
In practice, autism symptomatology as a metric amalgamates
many different variables. Many of these target variables
are incompatible with a balanced view of neurodiversity,
such as imposing non-autistic social behaviors or reducing
sensory behaviors or motor mannerisms that act as coping
strategies. However, others are consistent with it, e.g., improving
communication (Kapp, 2020). As a discipline, we need to move
measurement away from autism symptomatology and produce
validated tools that assess the goodness of fit between an
individual and their social, emotional and physical environment.
There are good examples already, such as the Autism Five
Minute Speech Sample that measures the emotional climate
around the autistic child (Benson et al., 2011), and the Dyadic
Communication Measure for Autism that assesses caregiver
communicative synchrony (Aldred et al., 2004; Green et al.,
2010). However, additional measures of environmental outcomes
are needed. We also need robust and creative ways to measure,
in children with all levels of communication ability, specific and
transparent intervention outcomes that are verifiably beneficial,
including autonomy, quality of life and the variables that
easily impact on these, such as functional communication,
inertia, and anxiety (McConachie et al., 2015). The International
Classification of Functioning, Disability and Health’s “Core Set
for Autism Spectrum Disorder” (Bölte et al., 2014) assesses such
outcomes within clinical contexts and could be developed for use
within intervention research.
Partnerships With Autistic People
In the UK there is now an increased understanding amongst
researchers and funding bodies of community priorities (e.g.,
James Lind Alliance, 2016) and more meaningful involvement
of autistic people in research (Pellicano et al., 2014; Fletcher-
Watson et al., 2019). More neurodivergent/autistic people are
leading academic discourse (e.g., Chapman, 2020; Kapp, 2020)
and empirical studies (e.g., Belcher et al., 2019; Buckle et al.,
2020) and there is a greater emphasis on participatory and
action research models with autistic viewpoints and experiences
at the center (e.g., Crane et al., 2019; Lam et al., 2020). These
developments have cast light on the need for autism researchers
to re-align their priorities and rethink some of the ways in
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Leadbitter et al. Autistic Self-Advocacy, Neurodiversity, and Early Intervention
which they work, thereby slowly changing the emphasis and tone
of research.
Parents have historically been the default channel for
meaningful involvement within research, and trials of early
interventions still typically center on parental views and priorities
(e.g., Leadbitter et al., 2018). Although they have their child’s
best interests at heart, neurotypical parents may be missing
essential aspects of understanding from their autistic child’s
perspective. One argument put forward against involving autistic
adults in child-focused research is that articulate and intelligent
autistic adults cannot speak for the experience of children with
significant intellectual or language disability. We need to be
much more invested and creative in exploring ways to garner
and document the views of children and adults who have severe
communication impairments and this is an important focus
for future research (Happé and Frith, 2020). We also need to
recognize that autistic adults often bring valuable expertise to
child-focused research. Autistic people can speak to what a
good autistic life is like (Iemmi et al., 2017) and what might
have helped them. Many autistic self-advocates are parents of
non-speaking children or were such children themselves. Some
autistic people are well-connected with others and can draw
on a wide range of experiences. Researchers can also become
better acquainted generally with autistic viewpoints through the
sentiments actively, and often passionately, shared by autistic
people in general forums. It is easier than ever before for
neurotypical researchers to access and understand autistic culture
and preferences through books, blogs, video accounts, and social
media posts.
CONCLUSIONS AND FUTURE
DIRECTIONS
Autistic self-advocacy and the neurodiversity movement offer
up valuable opportunities to autism intervention practitioners
and researchers. A balanced neurodiversity stance offers key
principles to steer the development, delivery and evaluation
of early interventions. Future directions for research and
practice include: (1) partnerships with autistic people, alongside
caregivers and other stakeholders, on intervention research
steering and advisory boards and throughout engagement,
involvement and co-production processes; (2) reflection by
intervention researchers and practitioners upon how their
intervention practices align with a neurodiversity framework and
the views of autistic people, particularly around intervention
targets and methods, and more transparent articulation of these
issues in engagement and dissemination activities; (3) greater
regard within intervention programmes to natural autistic
developmental processes, coping strategies, autonomy and well-
being; and (4) increased efforts to develop and validate tools
to measure autistic prioritized outcomes and the goodness-
of-fit between an autistic individual and their environment.
With close attention to the needs, preferences and priorities
of autistic people, we can move beyond historical divides,
misunderstandings and wrongdoings to a place where we value
the expertise of autistic people, embrace practices that respect
and accept individual neurotypes, and ensure our interventions
address the things that matter most to the recipients.
DATA AVAILABILITY STATEMENT
The original contributions presented in the study are included
in the article/supplementary material, further inquiries can be
directed to the corresponding author.
AUTHOR CONTRIBUTIONS
All authors contributed to the development of ideas
and viewpoint, the review of the literature, and writing
the article.
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Conflict of Interest: The authors declare that the research was conducted in the
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