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In this commentary, we describe how language used to communicate about autism within much of autism research can reflect and perpetuate ableist ideologies (i.e., beliefs and practices that discriminate against people with disabilities), whether or not researchers intend to have such effects. Drawing largely from autistic scholarship on this subject, along with research and theory from disability studies and discourse analysis, we define ableism and its realization in linguistic practices, provide a historical overview of ableist language used to describe autism, and review calls from autistic researchers and laypeople to adopt alternative ways of speaking and writing. Finally, we provide several specific avenues to aid autism researchers in reflecting on and adjusting their language choices. Lay Summary Why is this topic important? In the past, autism research has mostly been conducted by nonautistic people, and researchers have described autism as something bad that should be fixed. Describing autism in this way has negative effects on how society views and treats autistic people and may even negatively affect how autistic people view themselves. Despite recent positive changes in how researchers write and speak about autism, ''ableist'' language is still used. Ableist language refers to language that assumes disabled people are inferior to nondisabled people. What is the purpose of this article? We wrote this article to describe how ableism influences the way autism is often described in research. We also give autism researchers strategies for avoiding ableist language in their future work. What is the perspective of the authors? We believe that ableism is a ''system of discrimination,'' which means that it influences how people talk about and perceive autism whether or not they are aware of it, and regardless of whether or not they actually believe that autistic people are inferior to nonautistic people. We also believe that language choices are part of what perpetuates this system. Because of this, researchers need to take special care to determine whether their language choices reflect ableism and take steps to use language that is not ableist. What is already known about this topic? Autistic adults (including researchers and nonresearchers) have been writing and speaking about ableist language for several decades, but nonautistic autism researchers may not be aware of this work. We have compiled this material and summarized it for autism researchers.
Content may be subject to copyright.
Avoiding Ableist Language:
Suggestions for Autism Researchers
Kristen Bottema-Beutel, PhD,
Steven K. Kapp, PhD,
Jessica Nina Lester, PhD,
Noah J. Sasson, PhD,
and Brittany N. Hand, PhD, OTR/L
In this commentary, we describe how language used to communicate about autism within much of autism research
can reflect and perpetuate ableist ideologies (i.e., beliefs and practices that discriminate against people with
disabilities), whether or not researchers intend to have such effects. Drawing largely from autistic scholarship on
this subject, along with research and theory from disability studies and discourse analysis, we define ableism and its
realization in linguistic practices, provide a historical overview of ableist language used to describe autism, and
review calls from autistic researchers and laypeople to adopt alternative ways of speaking and writing. Finally, we
provide several specific avenues to aid autism researchers in reflecting on and adjusting their language choices.
Keywords: autism, ableism, language, ableist discourse, neurodiversity
Lay Summary
Why is this topic important?
In the past, autism research has mostly been conducted by nonautistic people, and researchers have described
autism as something bad that should be fixed. Describing autism in this way has negative effects on how society
views and treats autistic people and may even negatively affect how autistic people view themselves. Despite
recent positive changes in how researchers write and speak about autism, ‘‘ableist’’ language is still used.
Ableist language refers to language that assumes disabled people are inferior to nondisabled people.
What is the purpose of this article?
We wrote this article to describe how ableism influences the way autism is often described in research. We also
give autism researchers strategies for avoiding ableist language in their future work.
What is the perspective of the authors?
We believe that ableism is a ‘‘system of discrimination,’’ which means that it influences how people talk about
and perceive autism whether or not they are aware of it, and regardless of whether or not they actually believe
that autistic people are inferior to nonautistic people. We also believe that language choices are part of what
perpetuates this system. Because of this, researchers need to take special care to determine whether their
language choices reflect ableism and take steps to use language that is not ableist.
What is already known about this topic?
Autistic adults (including researchers and nonresearchers) have been writing and speaking about ableist lan-
guage for several decades, but nonautistic autism researchers may not be aware of this work. We have compiled
this material and summarized it for autism researchers.
Lynch School of Education and Human Development, Boston College, Chestnut Hill, Massachusetts, USA.
Department of Psychology, University of Portsmouth, Portsmouth, United Kingdom.
School of Education, Indiana University at Bloomington, Bloomington, Indiana, USA.
School of Behavioral and Brain Sciences, University of Texas at Dallas, Richardson, Texas, USA.
School of Health and Rehabilitation Sciences at The Ohio State University, Columbus, Ohio, USA.
ªKristen Bottema-Beutel et al., 2020; Published by Mary Ann Liebert, Inc. This Open Access article is distributed under the terms of
the Creative Commons Attribution Noncommercial License ( which permits any non-
commercial use, distribution, and reproduction in any medium, provided the original author(s) and the source are cited.
Volume 00, Number 00, 2020
Mary Ann Liebert, Inc.
DOI: 10.1089/aut.2020.0014
What do the authors recommend?
We recommend that researchers understand what ableism is, reflect on the language they use in their written and
spoken work, and use nonableist language alternatives to describe autism and autistic people. For example, many
autistic people find terms such as ‘‘special interests’’ and ‘‘special needs’’ patronizing; these terms could be
replaced with ‘‘focused interests’’ and descriptions of autistic people’s specific needs. Medicalized/deficit lan-
guage such as ‘‘at risk for autism’’ should be replaced by more neutral terms such as ‘‘increased likelihood of
autism.’’ Finally, ways of speaking about autism that are not restricted to particular terms but still contribute to
marginalization, such as discussion about the ‘‘economic burden of autism,’’ should be replaced with discourses
that center the impacts of social arrangements on autistic people.
How will these recommendations help autistic people now or in the future?
Language is a powerful means for shaping how people view autism. If researchers take steps to avoid ableist
language, researchers, service providers, and society at large may become more accepting and accommodating
of autistic people.
The purpose of this commentary is to define, describe,
and offer alternatives to ableist language used in autism
research. According to the Center for Disability Rights, ableism
‘‘is comprised of beliefs and practices that devalue and dis-
criminate against people with physical, intellectual, or psy-
chiatric disabilities and often rests on the assumption that
disabled people need to be ‘fixed’ in one form or the other.’’
The effects of ableism on autistic people include, but are not
limited to, underemployment, mental health conditions, and
The motivation for this article stems from
ongoing discussions between autism researchers and the au-
tistic community,
with noteworthy contributions from indi-
viduals who belong to both groups.
We prioritize the
perspectives of autistic people because they have first-hand
expertise about autism and have demonstrated exceptional
scientific expertise.
Autistic adults have led advocacy against
ableist language, with broad applicability across age groups.
The autistic community advocates for autism research that is
accessible, inclusive of autistic participation and perspectives,
reflective of the priorities of the autistic community, of high
quality, and written in such a way that it does not contribute to
the stigmatization of autistic people.
Although there
has been progress on these fronts,
some of the language used
to describe autism and autistic people within published research
continues to increase marginalization.
In an effort to improve researchers’ language practices, we
discuss these issues in five sections. First, we discuss the rel-
evance of ableism to autism research. Second, we discuss the
ramifications of ableist language choices and give a historical
overview of how such language persists in autism research.
Third, we review empirical research on the language prefer-
ences of the autistic community. Fourth, we discuss recent
language debates, focusing on objections made by autism re-
searchers to some nonableist language options. Finally, we
provide practical strategies for avoiding ableist language and
provide suggested alternatives in Table 1, which will be dis-
cussed in detail in the Suggestions for Researchers section.
We bring expertise in special education, psychology, and
occupational therapy and hope to express a range of concerns
across these disciplines. The second author is also an autistic
researcher, with expertise in neurodiversity and autism ad-
vocacy. While we do not claim to be comprehensive in our
discussion of these issues, we can provide insight on a range
of language practices that occur across disciplines, which
may render our discussion useful for those in a variety of
research traditions.
What Does Ableism Have to Do
with Autism Research?
Ableism is perpetuated by culturally shared norms and
values, as well as ways of speaking and writing about dis-
ability and disabled people. These social processes culmi-
nate in, and originate from, societal expectations about the
abilities required for granting individuals full social rights,
agency, and even personhood.
Ableism intersects with
other systems of oppression, including racism, sexism, ho-
mophobia, and transphobia.
This means that ableism is
compounded by experiences such as racism. In addition,
disabled people of color are more likely to experience the
effects of ableism than white disabled people.
Understanding the concept of ableism, and how it manifests
in language choices, is critical for researchers who focus on
marginalized groups such as the autistic community. Since
autism was first identified by researchers, deficit discourses
have pervaded descriptions of autistic research participants.
In fact, some interpretations of research findings have tacitly
or explicitly questioned the humanity of autistic people.
Autistic rhetorician Melanie Yergeau offers an example from
theory of mind research, which showed differences between
autistic and nonautistic groups on false belief task perfor-
mance. This finding was used as evidence that autistic people
lack an essential element that ‘‘makes us human.’
This type
of ableist discourse can have far-reaching negative impacts on
disability policy, education, therapeutic practices, and social
attitudes about autistic people.
When, for instance, re-
search findings are presented as evidence that autistic people are
they may influence public perceptions about
autistic people that are incorrect and negatively impact their
ability to form relationships and participate in society. In this
way, language choices can perpetuate stigma, increase mar-
ginalization, and contribute to negative internalized self-beliefs
within autistic people.
In many parts of the world, ableism
is a default system of discrimination that can be reinforced
through language and other symbolic modalities.
searchers who wish to counteract this system must therefore
adopt an anti-ableist stance and be intentional about their lan-
guage choices. We believe that such a commitment will result
in less discriminatory and more accurate discussions of re-
search findings.
The Impact and History of Language
Used to Talk About Autism
Why does the language we use to talk about
autism matter?
Language is not simply descriptive but is also performa-
That is, language use is constructive of social life;
through language we make a case, take a particular stance,
and produce identities.
What people say or write produces
specific versions of the world, one’s self, and others,
language conveys, shapes, and perpetuates ideologies.
Language choices are also reflective of power structures and
mirror dominant narratives and ideologies about social phe-
nomena. From this critical perspective, ideologies are con-
ceptualized in such a way that includes consideration of the
role of power in the ‘‘positions, attitudes, beliefs, perspec-
tives, etc. of social groups’’
(p. 9). Thus, ideologies evi-
denced in everyday and institutional discourse are assumed to
both establish and maintain power relationships.
dominant discourses about autism, primarily controlled by
those in positions of power, is therefore necessary to change
Table 1. Potentially Ableist Terms and Discourse That Commonly Appear
in Autism Research and Suggested Alternatives
Potentially ableist term/discourse Suggested alternatives
Patronizing language
Special interests
Areas of interest or areas of expertise, focused, intense, or
passionate interests
Special needs
Description of specific needs and disabilities
Challenging behavior/disruptive behavior/problem
Meltdown (when uncontrollable behavior), stimming (when
relevant), specific description of the behavior (e.g., self-
injurious or aggressive behavior)
Person-first language (to refer to autism)
Identity-first language; ‘‘on the autism spectrum’
Medicalized/deficit-based language
High/low functioning; high/low severity or support
Describe specific strengths and needs, and acknowledgment
that the level of support needs likely varies across
domains (e.g., requires substantial support to participate
in unstructured recreation activities, but minimal support
to complete academic work)
‘‘At risk’’ for ASD
Increased likelihood/chance of autism
Burden of/suffering from autism
Impact, effect
Autism symptoms
Specific autistic characteristics, features, or traits
Treatment Support, services, educational strategies (when applicable)
Healthy controls/normative sample
Nonautistic (if determined via screening), neurotypical
(if determined via extensive screening ruling out most
forms of neurodivergence), comparison group (with
description of relevant group characteristics)
Neurodevelopmental conditions, neuropsychiatric
conditions, developmental disabilities, mental illnesses
(or specific mental health condition)
Ableist discourses: ways of discussing autism not relegated to the use of particular terms, that reflect and/or contribute to
dehumanization, oppression, or marginalization of autistic people
Discussions about economic impacts of autism that
situate costs in the existence of autistic people
themselves, or compare the costs to those of
potentially fatal diseases/conditions such as cancer or
Discussions about economic impacts of autism that situate
costs in society’s systemic failure to accommodate
autistic people and that recognize the people most
affected by oppression due to this failure are autistic
people themselves (not ‘‘taxpayers’’)
Interpretations of all group differences between autistic
and nonautistic groups as evidence of autistic
Interpretations of group differences that consider the
possibility that autistic people may have relative strengths
over nonautistic people or that differences between
groups are value-neutral unless actively demonstrated
Cure/recovery/‘‘optimal outcome’’ rhetoric.
Discussions focusing on quality-of-life outcomes that
prioritize what autistic people want for themselves
Prioritizing ‘‘passing’’ as nonautistic (e.g., some ‘‘social
skills’’ training) at the expense of mental health and
Prioritizing mental health and well-being, which can include
embracing autistic identities
Autism as a puzzle.
Autism as part of neurodiversity
Autism as an epidemic.
Autism as increasingly recognized/diagnosed
conceptualizations about the nature of autism. Additionally,
all communication involves language choices, and there are
no ‘‘neutral’’ options independent of an ideological stance.
The fact that representations of research participants and
results are shaped by research biases, and may not accurately
reflect how participants perceive themselves, has long been
emphasized in qualitative methodological literature.
Furthermore, social science researchers produce various ver-
sions of reality, theory, and descriptions of people and places
when writing research reports.
As such, researchers’ lan-
guage choices shape how people and places come to be known.
Historical reflections on language about autism
Autism arose as a clinical category in the 1940s, but de-
scriptions of autism have varied across time and place and are
shaped by complex disciplinary histories and discourses.
works of Leo Kanner and Hans Asperger continue to influence
how autism is understood. While Kanner is typically credited
with classifying autism as a diagnostic category, Eugene Bleuler
first coined the term in 1911, using it to describe ‘‘psychotic
patients’’ tendency to withdraw into fantastical worlds.
ing the 1920s and 1930s, the term ‘‘schizophrenic autism’’ was
used to describe children who appeared to separate from reality
and become affectively withdrawn.
Even recently, autism is often written about using medical
model frameworks, which construe all differences associated
with autism to be evidence of deficits, and advocates for curing
these deficits via intervention.
In keeping with the medical
model, autism has linguistically, culturally, and politically been
constructed in relation to a normal/abnormal binary.
noted that a ‘‘normal or physiological state is no
longer simply a disposition which can be revealed and ex-
plained as fact, but a manifestation of an attachment to some
value’’ (p. 57). The medical model traditionally dichotomizes
people as ‘‘healthy’’ and ‘‘sick’’ or ‘‘non-disabled’’ and ‘‘dis-
abled,’’ without reference to the social systems that render these
categories meaningful, and with the assumption that disability
is inherently inferior to nondisability. Treatment is admin-
istered in hopes of transforming disabled individuals into
nondisabled individuals.
The medical model, therefore,
inherently relies on deficit construals of autism, even though
both Kanner
and Asperger
noted autistic strengths.
In the medical model, autism is ‘‘essentially a narrative
condition .diagnoses of autism are essentially storytelling
in character, narratives that seek to explain contrasts between
the normal and the abnormal, sameness and difference’’
(p. 201). Autism diagnosis, even when observational tests or
interviews are administered, largely relies on subjective in-
terpretations of behavior. Indeed, the medical model of dis-
ability centers on identifying autism by assessing behaviors
and interactions with others. As such, it constructs autism as a
within-person phenomenon, even though the condition is
diagnosed through social behavior. These conceptualizations
of autism locate the source of impairment in autistic people
who may have difficulty understanding nonautistic social
behavior but do not question why nonautistic people expe-
rience the same difficulty in understanding autistic social
behavior (this is termed ‘‘the double empathy problem’’).
In contrast, the social model distinguishes between impair-
ments, which are socially valued differences in functioning or
appearance, and disabilities, which are environmentally medi-
ated and emphasize the loss of opportunities to participate in
Under this framework, autism is disabling in socie-
ties that do not make efforts to remove barriers to participation
that autistic people face.
For example, autism can be dis-
abling when an autistic person seeks employment but is not
accommodated for communication differences that impact
their ability to participate in an interview.
Current conceptualizations of the social model acknowl-
edge that social barriers do not explain all aspects of disability
and recognize individual contributions in the context of a
disabling society.
Proponents of the autistic-led neurodi-
versity movement conceptualize autism in such a way that
autism itself can be celebrated while still recognizing im-
pairments and support needs.
Neurodiversity scholars and
activists: (1) recognize that barriers imposed by nonautistic
society hinder the fulfillment of autistic people and assert that
it is a societal responsibility to remove these barriers
; and
(2) acknowledge the transaction between inherent weaknesses
of autism and the social environment, viewing autism as both
a difference and a disability.
Therefore, they support
an integrative model of disability, which values impairment as
a valid form of human diversity
and dovetails with the
nuanced views of autism among autistic adults.
Inspired by the disability rights movement, Sinclair served
as the primary founder of the neurodiversity movement and
its use of identity-first language.
essay ‘‘Why
I Dislike Person First Language’’ is a foundational text that
explains why many neurodiversity advocates prefer identity-
first language such as ‘‘autistic person.’’ This piece explains
autism as inseparable from and fundamental to an individual’s
experience of the world. Perhaps most controversially, Sinclair
critiques the need to emphasize personhood as paradoxically
dehumanizing (‘‘Saying person with autism suggests that au-
tism is something so bad that it isn’t even consistent with being
a person,’’ para. 3). While person-first constructions were
originally promoted by self-advocates with intellectual dis-
ability (ID) in the late 1960s and 1970s, becoming widespread
by the 1990s as the self-advocacy movement came of age,
many within the autistic community now reject them. Neuro-
diversity proponents may recognize that supporters of either
language preference may share the value of upholding autistic
people’s dignity and worth but disagree on rhetorical means for
doing so.
The positioning of autism as an entity that can be discovered
in one’s genetics, neurological systems, or biochemistry
‘‘implies a lack of reflexivity about how autism is constructed
through our representational practices in research, in therapy,
and in popular accounts’’
(p. 20). Medicalized representa-
tions of autism rarely include consideration of the experiences
and everyday practices of autistic people. Historically, disabled
people have rarely been allowed to ‘‘control the referent ‘dis-
ability’’’ and the ‘‘terminology that has been used to linguis-
tically represent the various human differences referred to as
(p. 122). This type of medical-model rhetoric
has material consequences for shaping research agendas. Pre-
sently, several funding initiatives promote prevention research
(with the goal of eradicating autistic people) and certain
strands of intervention research that attempt to teach autis-
tic people to pass as nonautistic. Both these avenues of re-
search ignore aspects of disability that are socially mediated,
which requires social and structural changes to how autistic
people are viewed, valued, and treated in lieu of efforts to
exclusively change autistic people. See Figure 1 for an in-
fographic contrasting the medical and social models.
Current Research on the Language Preferences
of the Autistic Community
Formal research characterizing language preferences of
autistic people is emerging.
This research highlights dis-
crepancies in the language used by health care professionals
and that which is preferred by autistic adults and other
members of the autism community (e.g., family members,
friends), particularly surrounding identify-first versus person-
first language.
Whereas autistic adults in the United King-
dom endorsed ‘‘autistic’’ and ‘‘autistic person’’ in greater
numbers than ‘‘person with autism,’’ professionals endorsed
‘‘person with autism’’ in greater numbers than ‘‘autistic’’ or
FIG. 1. Infographic con-
trasting medical and social
models of disability.
‘‘autistic person.’’ Parents were also much less likely to en-
dorse ‘‘autistic person’’ than were autistic participants.
Research on Australian samples has shown that autistic
people rated the terms ‘‘autistic,’’ ‘‘person on the spectrum,’
and ‘‘autistic person’’ significantly higher than ‘‘person with
autism,’’ ‘‘person with ASD’’ (autism spectrum disorder), and
‘‘person with ASC’’ (autism spectrum condition). U.S.- and
U.K.-based research has shown that self-identification as au-
tistic and awareness of the neurodiversity movement are as-
sociated with stronger preferences for the term ‘‘autistic
person’’ over ‘‘person with autism.’
Data suggest that ‘‘on
the autism spectrum’’ may be the least polarizing way to refer
to autism,
but even using this description is a political
Outside identifying language, there is some evidence to
suggest relative consensus among stakeholder groups about
other preferred language choices. For example, Kenny et al.
found few autistic adults, family members/friends, or health
care professionals endorse the use of functioning-level de-
scriptors such as ‘‘high-functioning’’ autism (approximately
20% endorse) and ‘‘low-functioning’’ autism (<10% endorse).
Additionally, most autistic adults and other stakeholders prefer
the use of diversity-focused language (e.g., neurodiversity) as
opposed to phrases such as disability, deficit, or disorder.
Furthermore, evidence suggests autism community members
predominantly prefer probabilistic language over danger-
oriented terms. For example, the terms ‘‘infants with high
autism likelihood’’ or ‘‘infants with higher chance of devel-
oping autism’’ are preferred over terms such as ‘‘at-risk’’ when
describing infants with autistic siblings.
It is worth noting that this work largely describes the
preferences of English-speaking research participants, a
disproportionate amount of whom are white. Additionally,
as most studies were surveys, it is unclear the extent to
which these preferences represent those of autistic people
with marked impairments in written communication and/or
intellectual functioning that may hinder their ability to
participate in survey research. Further work is needed to
understand language preferences of autistic people from
diverse racial, ethnic, linguistic, and cultural backgrounds,
and those with a range of communication and intellectual
abilities. Finally, quantitative survey approaches should be
supplemented with qualitative analyses of language-in-use,
to understand how language choices are implicated in ev-
eryday experience.
Ongoing Controversies Around Language Usage
Many autism researchers may be unaware of how lan-
guage forms can reflect ableist ideologies. Other research-
ers who are aware of the potentially ableist implications of
some terms and discourses, but continue to use them in their
work, may appeal to three commonly used arguments for
this choice: (1) a lack of complete consensus from the au-
tistic community on their language preferences, (2) con-
cerns about a lack of scientific accuracy conveyed by
nonableist language, and (3) misunderstandings about terms
that originated from autistic and other disabled advocates.
In this section, we address each of these arguments and
provide a rationale for why researchers should continue to
make efforts to audit their written and spoken work so as to
avoid ableist language.
Lack of consensus
Even when polling is available to identify group-level lan-
guage preferences, controversy remains as to the representa-
tiveness of samples of autistic people. Whether researchers
should replace person-first language with identity-first lan-
guage has received particular attention recently.
An argu-
ment primarily put forward by nonautistic researchers for why
autistic people’s preferences should not lead to changes in
their language practices is that there remain members of the
autistic community who prefer person-first constructions over
identity-first constructions,
or are unable to participate in
discussions about language preferences because of commu-
nication impairments.
We contend that this line of reasoning works to maintain the
status quo by allowing nonautistic researchers to avoid en-
gagement with the expressed preferences of many members of
the autistic community, and discount or minimize their argu-
ments around language choices. Complete consensus is un-
likely to be gained for a set of terms for any marginalized
community. Yet, it remains important to avoid using language
with known stigmatizing effects (unless referring to a specific
individual who has indicated their language preferences), such
as many usages of person-first language.
Stakeholders (in-
cluding parents) may eventually move toward consensus on
preference for identity-first language, because it is positively
correlated with the growing awareness of the neurodiversity
movement that also increases acceptance of and positive
emotions toward autism.
While it is the case that non-
speaking autistic people with profound communication im-
pairment cannot have their views directly incorporated into the
neurodiversity movement, nonspeaking autistic people do
participate, as do those who formerly did not have an effective
means to communicate, but now do.
Additionally, speak-
ing individuals in this movement consider the unique needs of
communication-impaired autistic people in their advocacy
surrounding language choices, such as support for augmenta-
tive and alternative communication.
Likewise, many
caregivers of communication-impaired autistic people align
themselves with neurodiversity proponents when advocating
for their children.
We recommend that researchers consider the majority
preferences for particular language (which could involve
polling their research participants as part of standard data
collection methods), the specific arguments made by autistic
community members when articulating their preferences, and
existing recommendations by academic and professional or-
ganizations to respect the majority language preferences of
the group being referred to.
We recommend that journals
not require person-first language, and researchers still disin-
clined to adopt identity-first language may opt for the rela-
tively neutral term ‘‘on the autism spectrum.’’ This may be
especially important for autistic people with ID given the
language disagreements between the self-advocacy and neu-
rodiversity movements.
Concerns about accuracy
A second reason researchers may choose not to adopt non-
ableist language is because they believe that it inaccurately or
imprecisely represents their research findings. However, as
several examples illustrate, the opposite is often true. Ableist
language, and the implicit assumptions that underlie it, clouds
research findings in ways that are not helpful to researchers or
autistic communities.
In this section, we review several ex-
amples of this phenomenon.
Autistic people without ID are sometimes referred to as
‘‘high-functioning,’’ with the assumption that these individ-
uals will function better than autistic individuals with ID
(often referred to as ‘‘low functioning’’). Autistic people
have argued against the use of these labels both because they
are stigmatizing, and because they inaccurately reflect their
experience. An autistic individual’s intellectual and adaptive
functioning can vary significantly across domains (i.e., so-
called ‘‘spiky’’ cognitive profiles); for example, hyperlexia
can co-occur with dyscalculia.
This suggests that ‘‘in-
tellectual ability’’ is not uniformly distributed for any given
autistic person, and blanket-level functioning labels may
mask this reality. Functioning can also vary across time and
context and may depend more on the adequacy of supports
provided than on the presence or absence of ID.
For exam-
ple, autistic people without ID more often experience a drop-
off in services following high school, whereas those with ID
are more likely to transition into a supported context (e.g.,
supported employment, organized daytime activities).
Recent empirical research supports these criticisms; mea-
sures of adaptive functioning do not correlate with measures
of intellectual ability in autistic children,
and the divergence
between these two domains tends to increase with higher age
and IQ scores.
Functioning labels are therefore not only
inaccurate, but they can also result in situations where autistic
people labeled ‘‘high functioning’’ are not provided with the
supports they need, while autistic people labeled ‘‘low func-
tioning’’ are underestimated in regard to their actual cap-
We encourage researchers to replace terms such
as ‘‘high-’’ and ‘‘low-functioning’’ with descriptors of the
characteristics they intend to convey (e.g., ID).
Another instance of this phenomenon is when autistic
people are described as ‘‘severely’’ affected, without includ-
ing specific information about what contributes to this clas-
sification. Researchers may mean to convey ID, structural
language impairment, or substantial support needs. These
characteristics often, but not always, co-occur, and research-
ers should specify the characteristics they are indicating when
using the term.
Other similar examples of a lack of precision
in terminology include ‘‘challenging behavior’’ and ‘‘autistic
traits.’’ These terms have different meanings across studies,
making comparisons between research findings more diffi-
cult. ‘‘Challenging behavior,’’ for instance, is a value-laden
phrase that does not specify what the behavior is, indicate who
perceives the behavior as challenging and why, or consider
the possible adaptive value the behavior has for the person
employing it.
Likewise, ‘‘autistic traits’’ is sometimes used
by researchers as a catchall phrase for autistic characteristics
that extend into the general population when present at less
impactful degrees. However, autism consists of a constella-
tion of traits that vary in presence, intensity, and function
across individuals. As such, the term ‘‘autistic traits,’’ while
not problematic in itself, should not be used for distinguish-
able and uncorrelated characteristics. The Autism Quotient,
a measure purporting to quantify autistic traits, includes
subscales measuring distinct autistic traits that are weakly
associated, suggesting the overall score of ‘‘autistic traits’
lacks coherent meaning.
The term ‘‘autistic traits’’ is also
rarely used to refer to autistic advantages or neutral charac-
teristics, and therefore may offer a biased view of what con-
stitutes ‘‘autistic traits.’
A final example in this category is using ‘‘typically devel-
oping’’ or ‘‘neurotypical’’ to describe participants serving as a
reference group. Although these terms are meant to indicate
participants do not meet criteria for clinical diagnoses, this is
rarely assessed. Many researchers assess the comparison group
for autism and may employ some basic exclusionary criteria
for large disqualifiers such as substance abuse, but most do not
screen for relatively common clinical conditions such as
anxiety, ADHD, and depression. Given that many people meet
criteria for some clinical condition at some point during their
groups labeled ‘‘neurotypical’’ include individuals
with clinically relevant features that go unaccounted for. This
is not to suggest that researchers should always screen for the
presence or history of all clinical conditions—doing so is often
resource-prohibitive. Rather, we note that the term ‘‘neuroty-
pical’’ is often misleading and promotes the assumption that
any nonautistic person is ‘‘typical.’’ Researchers might instead
label their comparison group ‘‘non-autistic,’’ if they conducted
appropriate screeners. The term ‘‘comparison group’’ is pre-
ferred to ‘‘control group’’ because autism is not an experi-
mentally manipulated assigned condition, so full ‘‘control’’ of
all variables besides autism between groups is impossible.
Misunderstanding terms
A third controversy involves researchers using terms in
ways other than how they are used by the disability com-
munity that coined them. Neurodiversity is a term that has
been used and written about by several autistic scholars, but
may be new to some autism researchers. The neurodiversity
framework conceptualizes autism as a natural form of human
variation, inseparable from individuals’ identity, and not in
need of a cure or normalization.
Recently, calls for tem-
pering the claims put forward by neurodiversity proponents
have been made by nonautistic researchers.
some of this pushback is couched in inaccurate representa-
tions of neurodiversity as both a concept and a movement.
Some may purport that neurodiversity focuses on strengths
without reference to disablement, which is inaccurate.
Calls for temperance of the neurodiversity framework cate-
gorize specific autistic features as either ‘‘disabilities’’ or
‘‘differences,’’ but this is a false dichotomy.
The extent to
which differences constitute impairments, which can in turn
be disabling, requires reference to the supports that are pro-
vided (or not) in particular environments, and the sociocul-
tural contexts in which particular abilities are valued (or not).
These misrepresentations of terms set the stage for arguments
that distort and over-simplify the neurodiversity framework.
This in turn reinforces the status quo and allows researchers
to sidestep reflecting on the concerns raised by autistic peo-
ple. Taking the time to understand terms autistic people use to
describe their perspectives and experiences should be stan-
dard procedure for any researchers focusing on autism.
Suggestions for Researchers
In this section, we provide practical guidance to help re-
searchers make language choices that reduce stigmatization,
misunderstanding, and exclusion of autistic people. While
our suggestions are primarily targeted to researchers, health
care providers and other direct support professionals may
also find them useful. We have divided our guidance into
three sections. First, we briefly discuss participatory models
of autism research, and the ways that they may improve
discourse around autism. Second, we provide a set of ques-
tions that researchers can ask themselves about their lan-
guage choices that may help them identify problematic
wording. Third, we have compiled a noncomprehensive list
of potentially ableist terms and discourses that regularly recur
in autism research (including some of our own prior work)
and provide suggested alternatives.
Participatory models of autism research
For many nonautistic autism researchers, language choi-
ces may be dictated by historical conventions and a desire to
be consistent with language in the academic journals in
which they publish. These conventions persist, despite au-
tistic preferences, in part because of a failure to integrate
representative numbers of autistic people and stakeholders
into executive research positions. To counter this, partici-
patory models of autism research have been developed.
A hallmark of these approaches is that autistic people are
included in the research process conducted by nonautistic
investigators, and editorial decisions made by nonautistic
publishers elevate autistic voices into roles with greater
power. (See Refs.
for descriptions and guidance
on this approach). This can help break down conventional
ences and priorities of the autistic community. We advocate
for a shift in funding priorities (which traditionally favor
causation and cure research
), so that grant money is
available to compensate autistic people for their participa-
tion. For autistic nonresearchers who are interested, these
funds could be used to provide training on basic research
methodology that would further enable substantive contri-
butions to research design and analysis procedures. Non-
autistic researchers should also be trained on how to partner
with autistic people (including those without academic
backgrounds) through all phases of the research process.
Procedures for remote participation (e.g., video conference
or instant messaging) have been developed that will enable
researchers to cast a wide net in soliciting autistic partners
and communicate about research activities using accessible
Additionally, hiring and promoting autistic researchers
into faculty positions can ensure that autistic people play
leading roles in autism research. Autistic autism researchers
have already made significant contributions to our under-
standing of autism and have provided much of the language
guidance we draw on in this article. In tandem with mean-
ingfully involving autistic people (researchers and non-
researchers alike) in the research process, participatory
research should be conducted that is rigorous and high
Researcher questions for self-reflection
on language choices
Below are seven questions that may help researchers de-
termine if they have adequately considered the impacts of
their language choices on autistic communities. If the answer
to question one is ‘‘no’’ or the answers to questions two
through seven are ‘‘yes,’’ researchers should consider alter-
native ways of speaking or writing (which we provide in
Table 1, explained below).
1. Would I use this language if I were in a conversation
with an autistic person?
2. Does my language suggest that autistic people are
inherently inferior to nonautistic people, or assert that
they lack something fundamental to being human?
3. Does my language suggest that autism is something to
be fixed, cured, controlled, or avoided?
4. Does my language unnecessarily medicalize autism
when describing educational supports?
5. Does my language suggest to lay people that the goal
of my research is behavioral control and normaliza-
tion, rather than granting as much autonomy and
agency to autistic people as reasonably possible?
6. Am I using particular words or phrases solely because
it is a tradition in my field, even though autistic people
have expressed that such language can be stigmatizing?
7. Does my language unnecessarily ‘‘other’’ autistic peo-
ple, by suggesting that characteristics of autism bear no
relationships to characteristics of nonautistic people?
Alternatives to commonly used terms
that are potentially ableist
Finally, Table 1 provides concrete examples of how re-
searchers might replace potentially ableist terms/discourses with
suggested nonableist alternatives. In generating this table, we
relied on the work of autistic scholars, researchers, and advo-
cates, as well as on research by nonautistic scholars that centers
autistic perspectives. We provide references to this work so that
researchers can understand the rationale behind these language
suggestions and determine if it applies to their work. We ac-
knowledge that what can be considered ‘‘ableist language’’
depends on the time, place, and manner in which it is used.
Therefore, not all instances of using the terms/discourses de-
scribed in the table are necessarily ableist. Likewise, not all
nonableist language suggestions we offer will be appropriate or
preferred for all of autistic people; in those cases, other terms
may be necessary. While the autistic writers whose language
suggestions appear in this table may not be representative of the
entire autistic community, their suggestions may nonetheless
have broad applicability. It is also likely that this table will need
revising as language usage will inevitably evolve. Still, while our
partial compilation will not serve as hard-and-fast rules, it offers
researchers an opportunity to interrogate their language choices.
In this commentary, we have defined and described ableism,
traced the historical trajectory of ableist language in autism
research, and provided arguments for why researcher attempts
to avoid ableist language will result in better outcomes for the
autistic community as well as improved communication in
research. Language choices are important, as they shape atti-
tudes about autism and people’s understanding of what it
means to be an autistic person. Now more than ever, re-
searchers are taking autistic perspectives into account in their
writing, and we applaud these changes. While the views pre-
sented in this Perspective are by definition partial, we hope this
commentary contributes to ongoing discussions about lan-
guage use and offers avenues for researchers to adapt their
language practices. Moving forward, journals that publish
autism-related research should encourage researchers to in-
terrogate and explain their language choices to ensurethat they
have considered autistic perspectives and the implications of
their choices for autistic people.
The authors would like to thank Sue Fletcher-Watson for
her commentary on an earlier version of this article.
Authorship Confirmation Statement
K.B.-B. proposed the initial outline of the article and
oversaw editing of the final document. K.B.-B., S.K.K.,
J.N.L., N.J.S., and B.N.H. conceptualized the article, gath-
ered literature for the review, wrote sections of the article,
and contributed to editing the final document. All authors
have reviewed and approved the article before submission.
This article has been submitted solely to this journal and is
not published, in press, or submitted elsewhere.
Author Disclosure Statement
No competing financial interests exist.
Funding Information
The authors did not receive any funding in support of this
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Address correspondence to:
Kristen Bottema-Beutel, PhD
Lynch School of Education and Human Development
Boston College
140 Commonwealth Avenue
Chestnut Hill, MA 02467
... KEYWORDS autism spectrum disorder, emotion regulation, parent-mediated intervention, challenging behavior, systematic review Autism spectrum disorder (ASD) is a neurodevelopmental disorder that emerges in early childhood characterized by differences with social communication and restricted, repetitive interests and behavior (1). In addition to these core symptoms, autistic individuals [see commentary on identity-first language in Bottema-Beutel et al. (2)] experience mental health disorders, including anxiety and depression, at higher rates than clinically referred individuals without ASD . ...
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Autistic individuals are at elevated risk for difficulties with emotion regulation (ER) that emerge early in life and are associated with a range of internalizing and externalizing disorders. Existing interventions that support ER have focused on school-age autistic children and adolescents as well as adults. Proactive approaches to improving ER in early childhood are thus needed, as is understanding the approaches by which ER skills can be feasibly supported in this young population. This review summarizes how ER has been measured within parent-mediated interventions for children at or under the age of 6 years and the extent to which ER is measured concurrently with or distinctly from observable behaviors that have been referenced in existing literature as externalizing or challenging behavior. Using PsycInfo, EBSCOhost, and PubMed databases, we searched for peer-reviewed journal articles published through August 2021, that focused on the use of parent-mediated interventions targeting ER and/or challenging behavior. The systematic search resulted in 4,738 publications; following multi-stage screening, the search yielded 20 studies. Eighteen of 20 studies were designed to target challenging behavior using manualized curricula or behavior analytic methodologies and assessed child outcomes through validated caregiver rating scales and/or direct behavioral observation. One study measured changes in ER as secondary to the social communication skills that were targeted in the intervention. Only one study specifically supported ER skill development and measured changes in ER as the primary intervention outcome. Findings highlight the need for better assessment of ER outcomes within the context of parent-mediated interventions for toddlers and young autistic children.
... We also aimed to establish working relationships between researchers and the autism community, which are essential for progressing with PPI in future projects and events. We welcomed a diverse audience of 50-60 individuals (69 registrations) from the autism community in Ireland, from advocates to educators to healthcare workers and researchers and we recognise the benefit that comes with engaging these key stakeholders (Nicolaidis et al. 2011;Bottema-Beutel et al. 2021). Dr Lorna Lopez hosted an interactive session inviting feedback from the audience on their experience at the event and gathering suggestions for future events. ...
... Moreover, there is a need for broader social systems at large to uplift autistic voices, promote awareness and acceptance of autistic differences, and foster inclusive and safe environments (Jones et al., 2021). Finally, although social skills interventions have been tied to numerous well-being outcomes, emerging work has indicated that some social skills interventions may contribute to masking/camouflaging behaviors for autistic people, which can lead to negative mental health outcomes in adulthood (Bottema-Beutel et al., 2020). Taking this work into serious consideration, it is important to clarify that the goal of P4P is not to decrease autistic traits, but to teach a set of ecologically valid skills that may aid in navigating the social world for anyone who struggles to make and keep friends. ...
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PEERS® for Preschoolers (P4P) is a social skills group program for young autistic children and their caregivers, which provides everyday tools for interacting and communicating with others. Twenty-two caregiver-child dyads participated and completed pre-treatment, post-treatment, and follow-up measures (4–16 weeks after). Using single-subject analyses to examine social skills, 60% demonstrated post-treatment improvement, and 53.85% demonstrated follow-up improvement. Regarding a secondary outcome of behavioral difficulties, 33.33% demonstrated post-treatment reduction, and 7.69% demonstrated follow-up reduction. Using regressions, autistic traits predicted outcomes; fewer social communication difficulties predicted both greater social skills and fewer behavioral difficulties at post-treatment, while fewer repetitive behaviors predicted fewer post-treatment and follow-up behavioral difficulties. These results preliminarily demonstrate the benefits of P4P and how autistic traits may impact P4P outcomes.
... ASD is characterized by di culties in social interaction and communication, along with unusually narrow interests and restricted and repetitive behaviors, and atypical sensory processing [2]. Increasing researchers are encouraging the use of 'autism' to describe the clinical diagnosis of ASD [3,4], while advocating for the use of identity-rst language (e.g., 'autistic person') [5], or other alternatives (e.g., 'person with a diagnosis of'), to refer to, and in compliance with, the autistic community [3]. ...
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Purpose: Misdiagnosis or late diagnosis in Autism Spectrum Disorder (ASD), especially for women without intellectual disability, has been partly attributed to camouflaging. However, in Spain there is a need for culturally adapted tools with gender perspective when assessing autism. Therefore, the main object of this study was to adapt the Camouflaging Autistic Traits Questionnaire (CAT-Q) for use in the Spanish population. Method: A internationally established method for cultural adaptations was carried out. The procedure consisted of direct and back translation process, cognitive interviews in 7 participants from 16 years old diagnosed with ASD living in Spain and a linguistic expert review. Results: The translation process resulted in a tool culturally adapted to the Spanish population. Cognitive interviews revealed no serious difficulties, with only 3 problematic items. Conclusion: The CAT-Q-Spanish is conceptually and semantically equivalent to the original tool and provides a camouflage measure for Spanish adolescents and adults diagnosed with ASD.
... In this article, we use identity-first language when communicating about autism. It is recognized that differences still exist in terms of how to refer to autism; however, in line with recent literature on this issue(Bottema-Beutel et al., 2021;Kenny et al., 2016), our use of identity-first language is intended to acknowledge, affirm, and validate the ownership of identity for autistic people. ...
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Autistic youth have an increased risk of mental health problems. Despite the efficacy of various psychotherapeutic approaches for autistic youth, they often do not receive these interventions. Research is needed to identify patterns of effective treatment for autistic youth and whether they differ from those used for youth with other neurodevelopmental conditions (e.g., attention-deficit hyperactivity disorder; ADHD). We compared clinicians’ (N = 557) knowledge, confidence and practices when treating autistic youth and youth with ADHD. Although ratings were moderately high overall and similar interventions were used for both groups, clinicians were significantly less knowledgeable and confident when supporting autistic clients compared to clients with ADHD. Thus, improving clinician perspectives may help facilitate treatment for autistic youth with mental health problems.
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This comparative case study explores the perceptions of caregivers and professionals, regarding the repetitive behaviour (RB) in their 4-to-13-year-old children/ students with vision impairment (VI) or with autism spectrum disorder (ASD). The study was conducted in Greece, as no related research has been conducted in the country. Research questions: This research aims to address the types of RBs observed by adults in children with VI or ASD, the explanations the adults employ to interpret these behaviours and the impact RBs have on the child, the caregiver, the professional and society. The underlying reason for this is an attempt to discover any potential differences between two different disabilities in a comparative fashion. The research questions that support the study are: 1. What are the RBs that caregivers and professionals observe in children with VI and children on the ASD? Does the child’s individual characteristics such as their age or ability have an impact on their behaviour? 2. What explanations do caregivers and professionals attribute to these behaviours? and 3. What is the impact of these behaviours a) on the child, b) on the caregiver/ professional, c) on others? Design: This study is based on interpretivist paradigm and followed a qualitative approach. A comparative case study design based on the ecological systems theory (EST) was adopted. 35 caregivers and accredited professionals were recruited (17 for the VI group, out of whom 8 were caregivers and 9 were professionals, and 18 for the ASD group, out of whom 9 were caregivers and 9 were professionals). Following the completion of a pilot study, all participants were interviewed regarding one specific child – their own child/ student – via semi-structured interviews. During the interviews, the researcher used a research diary as a methodological tool and video elicitation as a facilitation tool. A cross-case analysis was conducted and data was analysed according to the method of thematic analysis. Results: A link has been indicated between VI and ASD, which concerns perceptions about the socially constructed manner in which an RB is perceived. ASD is perceived by the participants as a disability with challenging characteristics, such as an RB. The ASD group perceived RB as linked to ableism, social stigmatisation and taboo, in contrast to VI, where the existence of RB seems to be a consequence of sensory loss. Bi-directionality of EST seems to have been lost completely and the macrosystem seems to drive the interactions between the ecological systems. School policy and practical implications are discussed. Keywords: repetitive behaviour, vision impairment, autism spectrum disorder, caregivers and professionals’ perceptions, social stigma, ableism
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Versions of cognitive behavioral therapy (Coping Cat, CC; Behavioral Interventions for Anxiety in Children with Autism, BIACA) have shown efficacy in treating anxiety among youth with autism spectrum disorder. Measures of efficacy have been primarily nomothetic symptom severity assessments. The current study examined idiographic coping outcomes in the Treatment of Anxiety in Autism Spectrum Disorder study (N = 167). Longitudinal changes in coping with situations individualized to youth fears (Coping Questionnaire) were examined across CC, BIACA and treatment as usual (TAU) in a series of multilevel models. CC and BIACA produced significantly greater improvements than TAU in caregiver-reported coping. Youth report did not reflect significant differences. Results show the efficacy of CC and BIACA in improving idiographic caregiver-, but not youth-, reported youth coping.
Parent-teacher relationship (PTR) quality is linked to child and family-school functioning and may be especially important in the school adjustment of autistic children. However, measurement of PTR quality has been limited by inconsistency in the use of measures, a paucity of two-informant measurement, and limited psychometric consideration. We examined the psychometric properties of the Parent-Teacher Relationship Quality Scale (PTRQS), a parent- and teacher-report measure of PTR quality derived from multiple sources. Specifically, we examined the factor structure, reliability, and convergent validity of the PTRQS among parents and teachers of 192 autistic children in preschool to 2nd grade. Results supported a three-factor model, including (1) parent-perceived relationship quality, (2) teacher-perceived comfort with parent(s), and (3) teacher perceptions of parent abilities. Scores exhibited high internal consistency. As evidence of convergent validity, all three factors of PTR quality, as well as the total PTRQS score, were strongly associated with parent interview-based PTR quality, parent perceptions of teacher effectiveness, and teacher-rated parental school involvement. The two teacher-rated PTR quality factors were also associated with student-teacher relationship quality. Results indicated that (a) the measure can validly capture PTR quality in the context of preschool and early elementary-age autistic children, (b) early PTR quality is linked to parental involvement, and (c) teacher-rated PTR factors are linked to autistic students' own relationships with their teachers. The results have implications for researchers and school psychologists measuring PTR quality in their practice.
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The present study examined the extent to which autism symptoms relate to anxiety, depression, and AD + in autistic youth. Anxiety and depression symptoms were measured using a DSM rating scale. A CFA of the DSM model of anxiety and depression symptoms showed inadequate fit. An EFA of anxiety, depression symptoms supported a model with three factors: Anxiety and Depression, Social Anxiety, and Autism. A subset of autism symptoms loaded onto the anxiety and depression symptom factors. Both the DSM and the EFA model had inadequate fit indices, though the EFA showed better fit over the DSM model. In addition, previous research converges with the obtained EFA factors. Taken together, while further research is needed to determine how to best model these symptoms, the present findings can be used to inform future factor analytic studies and subsequent conceptualizations of anxiety, depression, and ASD symptoms.
The neurodiversity movement is a social movement that emerged among autistic self‐advocates. It has since spread and has been joined by many with diagnoses of attention‐deficit/hyperactivity disorder, dyslexia, and developmental coordination disorder among others. By reconceptualizing neurodiversity as part of biodiversity, neurodiversity proponents emphasize the need to develop an ‘ecological’ society that supports the conservation of neurological minorities through the construction of ecological niches—that is, making space for all. This is an alternative to the drive to eliminate diversity through attempts to ‘treat’ or ‘cure’ neurodivergence. So far, neurodiversity theory has not been formally adapted for psychotherapeutic frameworks, and it is not the role of the therapist to make systemic changes to societal organization. Still, there is room for fruitfully drawing on a neurodiversity perspective for therapists working with neurodivergent people in clinical settings. Here, we draw on the example of autism and synthesize three key themes to propose the concept of neurodivergence‐informed therapy. First, the reconceptualization of dysfunction as relational rather than individual. Second, the importance of neurodivergence acceptance and pride, and disability community and culture to emancipate neurodivergent people from neuro‐normativity. Third, the need for therapists to cultivate a relational epistemic humility regarding different experiences of neurodivergence and disablement.
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There has been a recent shift from person-first to identity-first language to describe autism. In this study, Australian adults who reported having a diagnosis of autism (N = 198) rated and ranked autism-terms for preference and offensiveness, and explained their choice in free-text. ‘Autistic’, ‘Person on the Autism Spectrum’, and ‘Autistic Person’ were rated most preferred and least offensive overall. Ranked-means showed ‘person on the autism spectrum’ was the most preferred term overall. Six qualitative themes reflected (1) autism as core to, or (2) part of one’s identity, (3) ‘spectrum’ reflecting diversity, (4) the rejection of stigmatising and (5) medicalised language, and (6) pragmatics. These findings highlight the importance of inclusive dialogue regarding individual language preference.
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This analysis argues that social deficit theories exacerbate the worst excesses of the medical model, a framework that attributes autism (in this example) as the cause of a person's functional impairment or disability, and empowers professionals and caregivers to treat autistic people's problems. Social deficit theories of autism generally conceptualise a deficit in understanding of others or motivation to relate to others as its primary cause. Harms of the medical model heightened by these theories include dehumanisation that denies basic respect and dignity, pathologisation of neutral and positive differences, reductionism to a social disorder despite complex traits and sensorimotor underpinnings, and essentialism despite autism's fluid boundaries. Proposed solutions include a more holistic and socially embedded classification system that recognises strengths and functional differences, more inclusion of autistic people in research and society, and practical strategies to help autistic and non-autistic people understand one another.
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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 2011 Shannon Des Roches Rosa and Jennifer Byde Myers founded and began editing “Thinking Person’s Guide to Autism” which is a neurodiversity-oriented, evidence-grounded autism website (, book, and social media community meant to cross-pollinate information and ideas between and among autistic people, parents of autistic children, autism professionals, and those who are any combination thereof. The aim was to debunk autism misinformation. Both Rosa and fellow editor Carol Greenburg have gloriously spirited sons who are high-support, mostly non-speaking teenage autistics, and Greenburg herself was diagnosed autistic as an adult.
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We used an online survey to gather perspectives of autistic youth (n = 248) on the impacts of autism, school professionals, family members, and peers on their high school experiences; what each stakeholder group could have done better; and what future high school professionals and autistic youth should know. Two-thirds of participants viewed autism as negatively impacting their school experience, and this was more prevalent in women. The majority viewed impacts of school professionals, family, and peers as positive. Women were more likely to view school professional contributions as positive than men, and LGBT youth were more likely to view school professional and peer contributions as negative than non-LGBT youth. Suggestions for stakeholders included providing more help, care, and quality time.
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Autism research funding across the world has disproportionately been invested in biological and genetic research, despite evidence that these topics are not prioritized by community members. We sought to determine whether a similar pattern was evident in Australia’s autism research funding landscape between 2008 and 2017, by analysing the nation’s portfolio of autism research investments. We also examined whether there was any change in this pattern of funding since the establishment in 2013 of the Cooperative Research Centre for Living with Autism (Autism CRC). Overall, Australian autism research funding during 2008–2017 followed a similar pattern to other countries, but shifted in the past 5 years. Further progress is required to bring research funding into line with community priorities.
The Autism‐Spectrum Quotient (AQ) is a psychometric scale that is commonly used to assess autistic‐like traits and behaviors expressed by neurotypical individuals. A potential strength of the AQ is that it provides subscale scores that are specific to certain dimensions associated with autism such as social difficulty and restricted interests. However, multiple psychometric evaluations of the AQ have led to substantial disagreement as to how many factors exist in the scale, and how these factors are defined. These challenges have been exacerbated by limitations in study designs, such as insufficient sample sizes as well as a reliance on Pearson, rather than polychoric, correlations. In addition, several proposed models of the AQ suggest that some factors are uncorrelated, or negatively correlated, which has ramifications for whether total‐scale scores are meaningfully interpretable—an issue not raised by previous work. The aims of the current study were to provide: (a) guidance as to which models of the AQ are viable for research purposes, and (b) evidence as to whether total‐scale scores are adequately interpretable for research purposes. We conducted a comprehensive series of confirmatory factor analyses on 11 competing AQ models using two large samples drawn from an undergraduate population (n = 1,702) and the general population (n = 1,280). Psychometric evidence largely supported using the three‐factor model described by Russell‐Smith et al. [Personality and Individual Differences 51(2), 128–132 (2011)], but did not support the use of total‐scale scores. We recommend that researchers consider using AQ subscale scores instead of total‐scale scores. Autism Res 2019. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. We examined 11 different ways of scoring subscales in the popular Autism‐Spectrum Quotient (AQ) questionnaire in two large samples of participants (i.e., general population and undergraduate students). We found that a three‐subscale model that used “Social Skill,” “Patterns/Details,” and “Communication/Mindreading” subscales was the best way to examine specific types of autistic traits in the AQ. We also found some weak associations between the three subscales—for example, being high on the “Patterns/Details” subscale was not predictive of scores on the other subscales. This means that meaningful interpretation of overall scores on the AQ is limited.
‘High functioning autism’ is a term often used for individuals with autism spectrum disorder without an intellectual disability. Over time, this term has become synonymous with expectations of greater functional skills and better long-term outcomes, despite contradictory clinical observations. This study investigated the relationship between adaptive behaviour, cognitive estimates (intelligence quotient) and age at diagnosis in autism spectrum disorder. Participants (n = 2225, 1–18 years of age) were notified at diagnosis to a prospective register and grouped by presence (n = 1041) or absence (n = 1184) of intellectual disability. Functional abilities were reported using the Vineland Adaptive Behaviour Scales. Regression models suggested that intelligence quotient was a weak predictor of Vineland Adaptive Behaviour Scales after controlling for sex. Whereas the intellectual disability group’s adaptive behaviour estimates were close to reported intelligence quotients, Vineland Adaptive Behaviour Scales scores fell significantly below intelligence quotients for children without intellectual disability. The gap between intelligence quotient and Vineland Adaptive Behaviour Scales scores remained large with increasing age at diagnosis for all children. These data indicate that estimates from intelligence quotient alone are an imprecise proxy for functional abilities when diagnosing autism spectrum disorder, particularly for those without intellectual disability. We argue that ‘high functioning autism’ is an inaccurate clinical descriptor when based solely on intelligence quotient demarcations and this term should be abandoned in research and clinical practice.
At the 2019 strategic planning meeting the International Society for Autism Research (INSAR) board discussed the question of appropriate language to be used when speaking or writing about autism or affected individuals. Board members articulated a wide range of views on this subject, making clear that there is no single simple answer. This commentary was inspired by that discussion. It is by John Elder Robison who is both an INSAR board member and an individual diagnosed with autism. Autism Res 2019. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. Lay Summary How should researchers talk about autism? Personal reflections on writing and speaking about autism, with particular regard for affected individuals, be they autistic people, people with autism, or family members. This commentary is authored by John Elder Robison who is both an INSAR board member and an individual diagnosed with autism.