Journal of Autism and Developmental Disorders

https://doi.org/10.1007/s10803-021-04988-9

COMMENTARY

Implications of Applying “Clinically Significant Impairment” to Autism

Assessment: Commentary on Six Problems Encountered in Clinical
Practice
Rachel Jellett1 · Joshua Muggleton2

Accepted: 22 March 2021

© Crown 2021

Abstract
The addition of ‘clinically significant impairment’ (American Psychiatric Association, Diagnostic and statistical manual
of mental disorders, Author, 2013) to the diagnostic criteria for autism in DSM-5 attempts to establish a threshold for the
condition. However, the increased prominence of the neurodiversity paradigm and social model of disability runs counter to
the idea that characteristics of autism are fundamentally impairing. Consequently, diagnostic criteria for autism are becom-
ing misaligned with the contemporary views of ‘disorder’ and ‘disability’. In this commentary, we outline six clinical issues
that arise from this misalignment during diagnostic assessment for autism, and the tension this creates in making diagnostic
decisions. We conclude by considering ways the ‘clinically significant impairment’ criterion could be changed, and the
implications this would have on clinical practice, and the concept of autism.

Keywords Autism Spectrum Disorders · Classification · Diagnostic Criteria · Diagnosis · Assessment · Neurodiversity

Introduction (APA, 2013). As a living document, new and salient ideas

The conceptualisation of autism has shifted over time,
since Kanner’s (1943) and Asperger’s (1944) early clinical
reports. Once considered a rare childhood condition, autism
has broadened as a diagnostic concept, and is increasingly
recognised in individuals across the lifespan (see Happé &
Frith, 2020). To reflect this change, the diagnostic criteria
for autism have been substantially revised in each iteration
of the Diagnostic and Statistical Manual of Mental Disor-
ders (DSM; see Volkmar, 2016 for a review) since the term
‘autism’ was first introduced as a diagnostic category in
DSM-III (APA, 1980).
The DSM revisions process ideally creates alignment
between scientific understanding and best clinical practice
Authors Rachel Jellett and Joshua Muggleton have contributed
equally to this work.
* Joshua Muggleton
joshua.muggleton@nhs.scot
1
Olga Tennison Autism Research Centre, La Trobe
University, Melbourne, VIC, Australia
2
Clinical Psychologist for NHS Fife, Lynebank Hospital,
Halbeath Road, Dunfermline, Fife KY11 4UW, Scotland
are integrated over time, highlighting the nature of DSM
diagnoses as “updatable working hypotheses” (Sonuga-
Barke, 2020, p. 1). Since the release of DSM-5, neurodiver-
sity and the social model of disability have gained promi-
nence and challenged traditional ideas about autism as a
disorder (Baron-Cohen, 2017). Neurodiversity, originally
described by Singer as an “addition to the familiar political
categories of class/gender/race” (1999, p. 64), reflects the
natural variation between all human brains. Within this, dif-
ferent neurotypes (groups of brains with similar patterns of
functioning) exist—including autism (a minority neurotype),
and neurotypical (the majority neurotype). The Social Model
of Disability (Oliver, 1983) outlines the role of the interac-
tion between an individual’s traits and the society in which
they are situated in creating disability. The neurodiversity
movement, combined with the social model of disability,
highlight areas of incompatibility between a contemporary
view of autism and existing frameworks that define autism
as a disorder existing within the individual (Baron-Cohen,
2017; Kapp et al., 2013). In particular, although the social
model recognises minority neurotypes can be disabling,
the importance of the individual-environment interaction is
highlighted as contributing to this disability.

13
Vol.:(0123456789)

As a taxonomy of mental disorders, the DSM is intended
to provide accurate descriptions of symptom clusters to facil-
itate communication and a shared understanding between
clinicians, service providers, and researchers. Such descrip-
tions often necessitate a ‘cut off’ between a clinical and non-
clinical presentation (APA, 2013). The APA are forthright
in acknowledging that diagnosis can be “particularly prob-
lematic in clinical situations in which the patient’s symptom
presentation by itself […] is not inherently pathological”
(2013, p. 21). Variations of the phrase “symptoms cause
clinically significant impairment in social, occupational, or
other important areas of current functioning” are used across
DSM-5, including for Autism Spectrum Disorder, to mini-
mise false positives and establish thresholds for disorder or
disability (APA, 2013, p. 50; Lehman et al., 2002). However,
“disorder boundaries are often unclear to even the most sea-
soned clinicians” (Kupfer et al., 2013, p. 1691). In prepara-
tion for DSM-5, while the demarcation of separate disorders
(Autistic Disorder, Asperger’s Disorder, Pervasive Devel-
opmental Disorder Not Otherwise Specified) was the focus
of substantial research efforts (e.g., Frazier et al, 2012), less
consideration has been given to the value and utility of the
impairment criterion in establishing a clinical threshold.
Further, the requirement introduced within DSM-5, that
“symptoms cause clinically significant impairment” runs
counter to the social model of disability, emphasised by the
neurodiversity paradigm, where the role of the environment
in contributing to disability is acknowledged. This potential
misalignment requires careful consideration in clinical deci-
sion making in the practice of diagnostic assessment.
The “clinically significant impairment” criterion poses
challenges in establishing diagnostic thresholds for a range
of behaviourally defined conditions (e.g., depression). How-
ever we consider that “clinically significant impairment” is
different for autism and neurodevelopmental disorders as
compared to psychiatric conditions. Being neurodevelop-
mental, autism is relatively stable over time, whereas mood
and anxiety disorders are often episodic (Thapar et al.,
2017) representing a deviation from the individual’s per-
sonal ‘norm’. Further, these conditions by definition cause
distress, and are usually unwanted. In autism however, there
is no expectation, and often no desire (from those able to
express it), for autism to resolve, and, autistic1 behaviours
are not necessarily distressing. Therefore, while we do not
deny that impairment can exist with autism, the nature of
that impairment is conceptually distinct from psychiatric
1
There are mixed opinions on identity-first/person-first language use
(Bury et al., 2020), though identity first is increasingly being advo-
cated for (Kenny et al., 2016). Throughout this manuscript we use
both and hope to respect broad preferences across the autism com-
munity.
13
Journal of Autism and Developmental Disorders
conditions. Finally, while similar arguments could be applied
to other neurodevelopmental disorders (such as Attention
Deficit Hyperactivity Disorder [ADHD]) and psychiatric
conditions, we argue that careful consideration of the issues
unique to autism is critical and timely given (a) the changing
conceptual understanding of autism (Happe and Frith, 2020)
and (b) a shift towards viewing autism with reference to the
social model of disability.
Future iterations of the DSM will, as ever, need to
account for how our understanding of autism has continued
to develop socially and scientifically. However, navigating
between strict interpretation of the diagnostic criteria (of
autism as a behaviourally defined disorder) and the changing
culture in which these criteria operate (of autism as a minor-
ity neurotype) creates ethical and conceptual tensions which
directly impact clinical decision making today. In this paper
we discuss the inherent difficulties in defining autism. We
then outline six clinical issues encountered when applying
the “clinically significant impairment” criterion from the
DSM-5 diagnostic criteria for Autism Spectrum Disorder,
given the neurodiversity movement and social model of dis-
ability, and consider the practical and ethical dilemmas these
create in practice. Finally, we discuss ways in which a less
pathologising view of autism could be accommodated within
the diagnostic criteria to overcome these issues.
While our focus is on DSM-5, the criteria within ICD-
11 also includes a requirement for clinically significant
impairment, though allows for variability in functioning
due to context, meaning similar clinical issues arise (WHO,
2018). Equally, we must acknowledge that not all individuals
presenting for assessment will have difficulty meeting the
“clinically significant impairment” criterion. For individuals
where there is no doubt of the presence or degree of impair-
ment as a result of their autism symptoms, the issues we
raise with the necessity of applying this criterion will not
be relevant as it is already met.
Difficulties Defining Autism
[Nature] never draws a line without smudging it. (Win-
ston Churchill, 1908, p. 8)
Since inception, it has been acknowledged that “the
boundaries [of autism] are not sharply differentiated from
other related behaviour patterns. The dividing line must
therefore be fixed by arbitrary decision” (Wing et al., 1976,
p. 98). The DSM-5 incorporated dimensionality by adding
levels of support as indicators of severity, thereby avoid-
ing the need to carve between categorical autism spectrum
diagnoses (Weitlauf et al., 2014). Yet, functioning levels are
transitory (APA, 2013), and not clearly defined (Mazurek
et al. 2019), making the division between these levels and
Journal of Autism and Developmental Disorders
between natural human variation unclear. Recent findings
suggest the threshold for an autism diagnosis is shifting, and
quantifiable differences between those who do and do not
meet the criteria are lessening (Rødgaard et al., 2019). This
has occurred despite the DSM-5 criteria being “more strin-
gent” than its predecessors (Kulage et al., 2020, p. 2120),
and indicates that the interpretation of the diagnostic criteria
in practice is changing. The gap between those with and
without autism created by this dividing line is narrowing,
increasing the challenge of a reliable and meaningful diag-
nostic assessment.
To overcome the difficulties in defining who does and
does not have autism, the DSM-5 uses behavioural crite-
ria that define social deficits, and restrictive and repetitive
behaviours (Criteria A and B), alongside three additional
requirements. First, while symptoms must be present from
childhood, they “may not become fully manifest until social
demands exceed limited capacities, or may be masked by
learned strategies in later life” (Criterion C) and second, the
symptoms need to cause “clinically significant impairment
in social, occupational, or other important areas of current
functioning” (Criterion D; APA, 2013, p. 50). Criterion E
indicates the behaviours observed are not better explained by
another condition (e.g., intellectual disability). In this defini-
tion, the DSM-5 forges a distinction between core features of
autism described in parts A and B, and autism as a disorder
that interacts with sociocultural factors potentially causing
impairment in Criterion D. In clinical practice, this thresh-
old criterion is difficult to operationalise, not well captured
by diagnostic instruments (Evers et al., 2020), dependent
on clinical judgement, and underpinned by socio-cultural
assumptions, making it difficult to apply (Wakefield, 2009).
It must be acknowledged that autistic people can (by their
autism, comorbidities, or environment) experience signifi-
cant impairment, and clearly demonstrate meeting criterion
D. However, the social model of disability challenges the
pathologising of autism, and highlights the contribution of
sociocultural factors to disability (e.g., den Fenton & Krahn,
2007; Houting, 2019). That is, while impairment may be
present, impairment is not a necessary marker of an autis-
tic neurotype, and can result from environmental factors
such as a lack of accessibility, understanding, or inclusion,
which can be changed. Considering factors such as subjec-
tive wellbeing and quality of life is particularly relevant
in understanding functional impairment or the absence of
impairment, and we argue this is the case whether the indi-
vidual has co-ocurring intellectual disability, strengths or
challenges in conversational ability, or subtle or obvious
characteristics of autism (see Kapp, 2018).
When providing a diagnostic assessment, a mismatch
between how pronounced core characteristics of autism are
and their impact on functioning is not uncommon (Constan-
tino & Charman, 2016; Szatmari et al., 2015). It therefore
stands that an autism neurotype can be present without caus-
ing clinically significant impairment at the time of assess-
ment. Indeed, Lai et al. (2020) highlight that two people who
share similar autistic traits may receive different diagnostic
outcomes—one may be unimpaired in their current func-
tioning and not receive a diagnosis, while the other may
receive a diagnosis due to their support needs—which is
conceptually complicated. Further, while autism can cause
difficulties for those with the condition, those within the
autism community often reject the notion of being disor-
dered (Dyck & Russell, 2020) and highlight the strengths
of their differences (Urbanowicz et al., 2019). As diagnosti-
cians, applying the distinction forged in the DSM-5 whilst
trying to value and respect the cultural move to autism as
a naturally-occurring human variation creates six problems
when providing clinical assessment:
Six Clinical Issues Encountered
Will Autism ‘Symptoms’ Cause Impairment,
and Must We Wait for it to Happen?
As noted previously, the way ‘impairment’ is currently oper-
ationalised in clinical practice is unclear. In addition to the
core features of autism, a range of physical, genetic, devel-
opmental and mental health comorbidities are associated
with the condition, as well as wider systemic disadvantage
(such as accessing education, employment, independence,
managing money and maintaining relationships; Lord et al.,
2018), all of which could factor into whether a person is
judged to be ‘impaired’. Further, impairment needs to be
considered from a lifespan approach, and the trajectory can
change within the same individual (Szatmari et al., 2015).
As a result, at assessment, a person with an autistic neuro-
type may not yet or not currently show clinically significant
impairment that meets criteria, potentially delaying their
diagnosis or contributing to missed or misdiagnosis.
Reliable diagnosis is possible by the time a child is
2-years-old (Chawarska et al., 2007; Kleinman et al. 2008),
yet in these younger age groups, it can be difficult to dis-
cern whether an individual is currently ‘impaired’ by autism
‘symptoms’, and more difficult still to anticipate their future
trajectory. Concern that the “impairment” criterion might
be prohibitive for certain groups (e.g., infants/toddlers) has
been addressed empirically. Peters and Matson (2020) found
it was more difficult to capture infants and toddlers under
DSM-5 (which introduced the ‘clinically significant impair-
ment’ criterion) as compared to DSM-IV-TR criteria. For
young children, meeting DSM-5 criteria (or both DSM-5 and
DSM-IV-TR criteria) was associated with a higher symp-
tom threshold compared to children who met only DSM-
IV-TR criteria. Using a measure of adaptive functioning to
13

approximate clinically significant impairment, Zander and
Bölte (2015) found 12% of children (aged 20–47 months)
who met DSM-IV-TR criteria for autism did not reach the
threshold for even a ‘mild’ level of impairment (defined as 1
standard deviation below the mean, based on the measure’s
normative sample), suggesting these children did not clearly
meet the ‘clinically significant impairment’ criterion intro-
duced within DSM-5. The authors therefore suggested that
attention should be paid when applying the impairment cri-
terion to young children, and that strict adherence in clinical
practice, or waiting for the impairment to occur, might cause
delays in accessing services. This is concerning given that
the value of tailored early learning experiences is well docu-
mented (Howlin et al., 2009; McConachie & Diggle, 2007).
As having an autistic neurotype is part of the individual,
clinicians may be unable to diagnose a child at first assess-
ment, as while they are confident in the characteristics
described in criteria A and B, the child does not yet meet
criteria D as the demands on the child have yet to exceed
their capabilities. If the requirement for significant impair-
ment delays diagnosis, it creates duplication of work and
frustration, doubt, and additional cost for parents (or the
state) seeking understanding of their child’s differences. As
support services and accommodations are often accessed
based on an accurate diagnosis, additional avoidable delays
might cost children important early learning opportunities
during a critical window of development (Dawson et al.,
2012; Smith et al., 2015). Therefore, clinicians need to
decide whether to (1) make the diagnosis despite difficulty
finding evidence for impairment; (2) delay the diagnosis
and ‘watch and wait’, re-evaluating the child at a later point
and accepting the possible delays in support, or (3) exer-
cise discretion in what characteristics they are willing to
consider impairing from a developmental perspective. In
conjunction, while aiming for diagnostic accuracy, clini-
cians must weigh up the risks and benefits of a potential
false positive versus false negative diagnosis. Further, due
to the high rates of co-occurring conditions (e.g., anxiety,
depression) in those with autism (McPheeters et al., 2011;
Simonoff et al., 2008) waiting for impairment to materialise
can be risky at any age (see issue 3).
‘Failure’ to Compensate as a Diagnostic Criterion
Autistic people, including those not diagnosed, employ
strategies that prevent them from becoming (or appear-
ing to be) functionally impaired (Bargiela et al., 2016;
Lai & Baron-Cohen, 2015; Livingston et al., 2020). When
autistic behaviours are habitually suppressed (i.e., cam-
ouflaged) and neurotypical social skills are enacted (i.e.,
compensation) the individual might not be referred for
assessment or provided with a diagnosis (Lai & Baron-
Cohen, 2015). Although the possibility of compensating
13
Journal of Autism and Developmental Disorders
is noted in Criterion C of the DSM-5 (i.e., “…may not
become fully manifest until social demands exceed limited
capacities, or may be masked by learned strategies in later
life”, APA, 2013), lack of awareness of these strategies by
healthcare professionals is likely to contribute to missed
diagnosis, because characteristics of autism as outlined
in criteria A and B are disguised (Bargiela et al., 2016)
and the individual is perceived as managing well when
this may not be the case (Camm-Crosbie et al., 2019).
As such, individuals on the autism spectrum may only be
identified once the environmental demands, or the strain of
compensation has exceeded their capabilities—they must
fail before their needs can be recognised.
Importantly, compensation does not negate the underly-
ing neurotype. Although engaging in compensation strate-
gies can help autistic people participate in society, these
strategies come at a cost. Social compensation strategies
are associated with increased risk of burnout, distress,
mental health difficulties, and suicidality (Cassidy et al.,
2018; Livingston et al., 2019). Therefore, a person may be
able to, through compensation, appear to most bystand-
ers (and clinicians) as ‘functioning’ in employment,
maintaining social relationships at work, and self care.
However, this may come at the longer-term and (initially)
hidden cost of their wellbeing. As such, those most diffi-
cult to identify and accurately assess may be among those
at greatest risk, and in need of support and acceptance.
In contrast, it is those least able to compensate (or have
features more difficult to compensate for, such as speech
prosody) who are more likely to be captured by diagnostic
criteria and therefore access support. While this should not
minimise the needs of those who are less able to compen-
sate, the requirement for clinically significant impairment
before support needs can be recognised means that support
(when needed) may not be equitably distributed.
For diagnosticians, there is currently no validated,
objective way to measure compensation, nor factor in the
effects of compensation on other clinical concerns. While
attempts are being made to better measure compensation
in people with autism (Hull et al., 2019; Livingston et al.,
2020), these are still in the early stages of development.
Therefore, as it stands, until diagnosticians have a better
understanding and method for assessing compensation and
identifying the underlying impact of the A and B criteria, a
person with an autism neurotype may need to ‘fail to com-
pensate’ before a diagnostician is able to formally recog-
nise their needs with a diagnosis. Measurement and iden-
tification of clinically significant impairment within an
individual who engages in camouflage and compensation
presents a unique challenge to clinicians and a potential
barrier to diagnosis. In the practice of diagnostic assess-
ment, clinicians need to be able to see beyond the mask.
Journal of Autism and Developmental Disorders
The Risks of Missed or Delayed Diagnosis
Whether due to waiting for impairment to occur, or for a
person’s compensation strategies to fail, there are risks in not
recognising an autism neurotype. For example, in autism,
co-occurring mental health concerns are the rule, rather than
the exception, indicating “mental health assessment should
be an integral aspect of clinical care [and] ongoing support
for autistic people” (Lai et al., 2019, p. 8). “Possibly autistic”
(p. 1508) adults have also been shown to be more likely to
receive a mental health diagnosis than adults in the general
population, at similar rates to those with a diagnosis (Au-
Yeung et al., 2019) suggesting this effect is not limited to the
‘diagnosed’ autistic but may also be present in the autistic
neurotype.
Worryingly, people with autism are more likely to die pre-
maturely, and those without a co-occuring learning disability
are 9.4 times greater risk of dying due to suicide (Hivikoski
et al., 2016). Missed or misdiagnosis may mean risks are
not fully identified and managed, and that patients feel mis-
understood, blamed, anxious, and have a reduced trust in
services (Punshon et al., 2009). Receiving a diagnosis and
the process of understanding one’s life history through the
diagnosis can also have a significant impact on a person’s
identity, and connection to community (Arnold et al., 2020;
Bagatell, 2010; Jones et al., 2015; Punshon et al., 2009; Sar-
rett, 2016).
This presents an ethical dilemma to clinicians. It is possi-
ble, and not uncommon, to assess a client who meets criteria
for the core characteristics of autism without clear evidence
of impairment (e.g., Zander and Bölte, 2015). Whether
or not a diagnosis is made has implications for access to
appropriate support services, and whether those services are
suitably adapted to that person’s needs. Further, given the
increased risk of suicide and premature death, withholding
a diagnosis or providing an incorrect diagnosis may mean
these additional risks are not recognised and managed appro-
priately by services for the person across the lifespan.
Where Does the Autism Go?
“It is unfair to use successful living in such an envi-
ronment as a litmus test of who properly qualifies as
functional. (Fenton & Krahn, 2007, p. 2)
People with autism can, often through their own voli-
tion, or with supports and strategies, cease to be considered
as impaired (Kanner, 1972; Fein et al., 2013). This can be
through adapting to societal norms and expectations through
compensation and camouflage, comfortably finding a place
in society, or as we are beginning to understand, through liv-
ing and valuing an authentic autistic life (Fenton & Krahn,
2007) which does not need to be cured (see Temple Gran-
din in Sacks, 1995). This might reflect a changed outlook
regarding autism (e.g., greater self-acceptance) or changes
in individual characteristics over time.
“Optimal outcomes” (Fein et al, 2013) describes those
who were diagnosed with autism but no longer meet cri-
teria when followed up; this has also been referred to as
“resolved ASD” (Shulman et al., 2019). Yet, as we learn
how people with autism reach optimal outcomes, the ‘opti-
mal’ part is brought into question (Georgiadis & Kasari,
2018). Where optimal outcomes are a result of camouflag-
ing (Lai et al., 2017) or compensating, these become risk
factors for burnout, distress (Livingston et al., 2019) and
suicidality (Cassidy et al., 2018). Further, Leong, Hedley
and Uljarević (2019) have questioned whether those with
“resolved ASD” are actually resolved, or if the underlying
neurotype remains, albeit with possibly reduced or refocused
support needs (such as greater support needs for anxiety, or
ADHD). These examples highlight the need for clearer guid-
ance on how clinically significant impairment is assessed.
It has been suggested (Parish-Morris, 2019) that subjec-
tive distress of the individual could be taken as evidence
of impairment, thereby accounting for these side effects of
camouflage and compensation. This may also better capture
overall difficulties, avoiding autism appearing “resolved”
when their needs are refocused. Careful consideration of
whether such distress is due to autism, or due to co-occur-
ring mood, anxiety, ADHD, or external factors would be
informative in clinical practice promoting individualised,
person-centered care and would reduce stigma, but is hard to
operationalise or validate in diagnostic criteria. Therefore, if
we as clinicians judge impairment (in, according to DSM-5,
social occupational, or other important areas of function-
ing) by only what we observe, we may deduce that someone
who is able to compensate or camouflage is not impaired,
and therefore not autistic. However, this does not account
for either the effort and inconvenience of camouflaging, nor
the risk factors associated with it. Likewise, someone who
is well supported across environments, without compensa-
tion, ceases to be impaired and therefore no longer autistic,
but seemingly ‘acquire’ autism when they transition to a
new environment, or support is withdrawn. This room for
movement is misaligned with the view that autism is a rela-
tively stable neurotype and highlights the role fluctuations in
person-environment fit have in how autism presents.
The DSM-5 allows for core symptom domains to be met
historically for those first presenting for assessment in adult-
hood (criterion C). However, this does not bypass the need
for symptoms to cause clinically significant impairment in
areas of current functioning. If autism is an inherent part of a
person’s neuropsychological development present from early
years, described by a list of symptoms that are currently
causing impairment, yet a person can at different times be
13

and not be impaired, and therefore fulfill or not fulfill these
criteria, then where does the autism go? As Happé and Frith
(2020) ask “Are we ready to consider autism as something
that comes and goes?”.
Perpetuation of Pathology and Stigma
Now that the voices of people on the spectrum are being
expressed and heard more, a novel and more balanced pic-
ture of autism is taking form and increasingly accepted.
(Bölte and Richman, 2019, p. 1).
If people with the underlying autistic neurotype are
not recognised, or delayed in their recognition (Volkmar
& Reichow, 2013), then we restrict our understanding of
autism to only those who are judged to meet the (somewhat
arbitrary) impairment threshold. This impairment may not
be due to autism, but due to their support, coping skills, co-
occurring conditions, and environment. Thus, what is disor-
dered is not the person or their level of autistic symptomatol-
ogy, but the fit between the person and the environment (Lai
& Baron-Cohen, 2015). Therefore, research samples drawn
from the diagnosed population will represent people who
not only have autism, but also lack the strategies, supports,
or environment they need. This could bias our understand-
ing and perpetuate the pathologising and medicalisation of
autism. For this reason, several studies now include par-
ticipants based on identification as autistic, rather than a
formal diagnosis (Au-Yeung et al., 2019; Livingston et al.,
2020). While including those who identify with autism has
face validity, adopting this more widely may create further
heterogeneity within the autism population, making further
advances in our understanding more difficult.
The resistance to treating or curing characteristics of
autism has been long standing (“If I could snap my fingers
and be non-autistic, I wouldn’t—it would not be me. Autism
is part of who I am”; Grandin, 1995, p. 278) and is another
lens through which to understand the mismatch between
this neurotype and autism the ‘disorder’. Those with lived
experience of autism advocate for service to improve well-
being while “preserving autistic ways of being” (den Hout-
ing, 2019, p. 272). This challenges a biomedical framework
based on pathology and impairment and suggests the need
for a reconceptualisation of our understanding of autism.
Finally, those who identify with autism often want a
diagnosis to validate their sense of difference and strug-
gle in a world not designed for them (Jones et al., 2015).
However, the diagnosis can also create stigma depend-
ing on the framework of understanding applied to autism
(Bölte & Richman, 2019). For example, Crane et al (2018)
found that a significant source of dissatisfaction for autistic
adults, parents, and professionals in the diagnostic pro-
cess was professionals’ focus on the negatives and what
13
Journal of Autism and Developmental Disorders
an autistic person couldn’t do, rather than their strengths.
Therefore, by assigning a diagnostic label requiring
impairment and called ‘disorder’, clinicians are at risk of
stigmatising those they work with. Further, by recognising
only those with autism who are impaired, clinicians may
perpetuate a purely pathological understanding of autism
in society. This in turn may make it harder to recognise
and meet the needs of those who are meeting society’s
expectations through camouflage and compensation at
considerable personal cost.
Unclear Communication
The DSM-5 is “primarily a manual to be used by clini-
cians” (APA, 2013, p. 7) and was designed as a commu-
nication tool, aimed at “creating a common language for
communication between clinicians about the diagnosis
of disorders” (APA, 2013, p. 10). Communication across
research and clinical practice is essential for bidirectional
knowledge translation, where clinical practice informs
research and vice versa.
The need to communicate this descriptive, clinically
relevant information is prioritised over the construct valid-
ity of various diagnoses (Lehman et al., 2002; Hyman,
2010). If descriptive, clinically relevant information is
prioritised, then it is arguably more relevant for services
attempting to meet stakeholders needs to know whether
someone has an autistic neurotype (and may benefit from
autism supports and strategies) as opposed to whether or
not their neurotype is causing clinically significant impair-
ment sufficient to meet the ‘clinically significant impair-
ment’ criterion. Indeed, if clinicians assume that someone
with autism is necessarily impaired by their autism (as
implied by their diagnosis), then this may increase the
risk of diagnostic overshadowing (Au-Yeung et al., 2019;
Lai & Baron-Cohen, 2015). For example, diagnosed and
self-identified adults have been shown to report similar
rates of co-occurring mental health diagnoses (Au-Yeung
et al., 2019) suggesting clinically, their needs are similar.
The result is another dilemma for diagnosticians. A per-
son may not meet diagnostic criteria for autism due to lack
of impairment, despite autism being the best descriptor
for their presentation. Should a diagnosis be refused in
order to preserve the integrity of the diagnosis, preserve
resources, and ensure research validity, as they do not
technically meet criteria? Or, should a diagnosis be given
on the basis of the similarities in needs between diagnosed
and undiagnosed but self-identifying as autistic, and that
this diagnosis would be readily understood by others need-
ing to respond to the person’s needs?
Journal of Autism and Developmental Disorders
Clinical Discussion and Conclusion
The DSM-5 criteria for autism represent 33 years of iter-
ative attempts by the APA to define a collection of com-
monly co-occurring behaviours with varied aetiologies, in a
spirit of nonmaleficence (Swedo, et al., 2012). The need for
these behaviours to cause clinically significant impairment
has been used to identify whether symptoms are significant
enough to be classified as a disorder. However, as the social
model of disability highlights, autistic behaviours and char-
acteristics may not inherently cause impairment (den Hout-
ing, 2019). This creates a dichotomy between the formal
criteria for autism the neurodevelopmental disorder and the
profile of strengths and difficulties associated with an autism
neurotype. Difficulties arise in clinical practice where a neu-
rological difference is defined and evaluated behaviourally
(Leong et al., 2019; McPartland, 2019), and broadly reflects
the limitations of clinical opinion as the gold standard of
assessment (Constantino & Charman, 2016).
Doing nothing is not an option. Diagnostic decisions
have profound implications (both positive and negative) on
the person, which must be carefully balanced in diagnos-
tic assessments. A diagnosis of autism affects the provision
and potentially reimbursement of care and the support and
understanding a person receives. A diagnosis also helps
to anticipate and clarify possible co-occurring conditions,
which is imperative given the disproportionately poor mental
health outcomes for those on the spectrum. Diagnoses also
have broader effects, as society’s perceptions of autism and
research participants are created by the exemplars diagnosed
by clinicians. Finally, a diagnosis or lack thereof can have
significant effects on a person’s self-concept and self-iden-
tity (Jones et al., 2015, Arnold et al., 2020). Therefore, the
decisions clinicians make extend beyond applying a diag-
nostic yardstick to a person, and also involve an evaluation
of the ethical and risk implications for each person assessed,
placing them in a bind.
One radical option would be to remove Autism Spectrum
Disorder from the DSM-5. This would reduce the pathologis-
ing of autism, and recognise autism as part of natural human
variation (as argued by the neurodiversity paradigm). It
could be argued that those currently judged to be ‘impaired’
by their autism are actually impaired by co-occurring condi-
tions, or (from a social model of disability) a lack of support
and inclusion, both of which could be used to support their
continued access to services. However, removal of autism
as a diagnosis seems premature given the utility of the
diagnostic category and the practice of diagnosis for clini-
cians and individuals. Removal also seems premature given
the ongoing unmet needs of those on the autism spectrum
within today’s socio-cultural context. Given our increasing
understanding of risks to mental health, epilepsy, and other
conditions associated with autism, removing the diagnostic
criteria would potentially be a step backward in providing
understanding and appropriate support for autism and co-
occurring conditions. Further, the existing tension between
the neurotype and disorder of autism has led to tension
within the autism community, with some ‘biocertified’ while
others self-diagnosed (Sarrett, 2016). This has the potential
to give people a sense of understanding and belonging, but
also risks self-misdiagnoses. Removing Autism Spectrum
Disorder as a diagnosis seems unlikely to stop the term being
used but may instead lead to it being used without diagnostic
rigor, creating confusion. Therefore, although a future pos-
sibility, removal of autism as a diagnostic category does not
resolve the challenges highlighted herein.
Alternatively, if the core (A and B) symptom criteria ade-
quately capture the clinical presentation of autism, inform
the next steps in providing support, and help individuals
understand themselves, the requirement that “symptoms
cause clinically significant impairment” may be redundant
(Spitzer & Wakefield, 1999). Yet, removing this attempt to
define the diagnostic threshold could create new problems.
Given the heterogeneity of autism, applying a single term to
those with wide ranging support needs, from those who do
not need support (and, indeed, may be able to use autism to
their advantage in their life and work) to those who require
regular, potentially intensive support, creates difficulties.
The term autism may lose its utility when using diagnostic
categories to help determine support needs and access to
services.
A middle ground may be to remove the requirement for
impairment and reduce deficit language in the way Autism is
described. Instead of Autism Spectrum Disorder, an “autistic
neurotype” could be defined based on a pattern of character-
istics already recognised as autistic, without the requirement
for this pattern to cause impairment.2 A diagnosis of an autism
neurotype could highlight potential future risk and associ-
ated factors, allowing those around the person (e.g., services,
schools, employers, family) to be aware that a person has a
specific profile of strengths and difficulties, and may benefit
from awareness and understanding of this. For example, an
autistic person may be unimpaired by their autism, but be
suffering from PTSD, and benefit from recommendations for
adapting therapy for people with autism (e.g., NICE, 2013).
This approach takes a depathologising and destigmatising
stance, and moves away from a medical model, consistent with
the preferences of many autistic adults (Bury et al., 2020).
The term “Autism Spectrum Disorder” could then become
2
We assume here that difficulties are internal: a descriptor which
marks how well a person can do a particular task. Impairment we
define something created when the effects of difficulties reach a point
where they interfere with a person’s functioning.
13

a transitory term applied to those with an “autistic neuro-
type” but where their symptoms are also currently causing
impairment.
We suggest that removing the requirement for impairment
could be achieved through the dimensional ‘functioning lev-
els’ specifier already available within DSM-5, by adding the
option of ‘Level 0′ (signifying no current impairment based
on autism characteristics), and allowing impairment levels
to be transitory over time as the environment, the demands
placed on the person, their supports, and their coping strategies
change over time. This middle ground would allow for impair-
ment to be decoupled from the concept of autism. This would
be a small but significant step, as removing the requirement
of impairment, would create space for the consideration of
autistic strengths in future diagnostic criteria. This would not
only create greater alignment in the diagnostic criteria with
the neurodiversity movement, but also help the public under-
stand a more balanced and rounded view of autism. In turn,
this may allow diagnosticians to move away from ‘diagnosis’
and towards ‘recognition’ of, as Happé and Frith describe “a
cognitive style or personality type, perhaps?” (2020, p. 11).
As such, the decoupling of autism and impairment may be the
first step on “[possibly] the most dramatic reconceptualisation
of autism yet” (2020, p. 11).
There is no simple solution to the nature and boundaries
of autism, which this paper has briefly highlighted through a
clinical lens. As always, further research is needed to resolve
the dichotomy of applying ‘clinically significant impairment’
criterion to people with autism, and how we define autism in
a society more inclusive of diverse and minority neurotypes.
Until this time, clinicians are faced with practical and ethical
considerations whenever approaching an assessment. This is
not to say that the clinically significant impairment criterion
should be ignored. For autism as a diagnostic label to retain
integrity, it requires clinicians to use the label consistently, and
inconsistent application of the clinically significant impair-
ment criterion would undermine this. However, careful con-
sideration of the implications of its use or disuse is required
at an international level, a service operation level, and daily
by practicing clinicians evaluating the unique aspects of each
individual case.
Acknowledgments The authors would like to thank colleagues for their
comments on early drafts, and the reviewers for their helpful critiques.
Author Contributions Both authors contributed equally to all elements
of this work.
Funding This study received no funding.
Declarations
Conflict of interest The authors have no conflicts of interest to declare
that are relevant to the content of this article.
13
Journal of Autism and Developmental Disorders
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