Review

Identifying the lost generation of adults with autism

spectrum conditions
Meng-Chuan Lai, Simon Baron-Cohen

Autism spectrum conditions comprise a set of early-onset neurodevelopmental syndromes with a prevalence of Lancet Psychiatry 2015;
1% across all ages. First diagnosis in adulthood has finally become recognised as an important clinical issue due 2: 1013–27

to the increasing awareness of autism, broadening of diagnostic criteria, and the introduction of the spectrum Autism Research Centre,
Department of Psychiatry,
concept. Thus, the idea of a lost generation of people who were previously excluded from a diagnosis of classic
University of Cambridge,
autism has arisen. Making a first diagnosis of autism spectrum conditions in adults can be challenging for Cambridge, UK (M-C Lai MD,
practical reasons (eg, no person to provide a developmental history), developmental reasons (eg, the acquisition of Prof S Baron-Cohen PhD);
learnt or camouflaging strategies), and clinical reasons (eg, high frequency of co-occurring disorders). The Cambridge Lifespan Asperger
Syndrome Service (CLASS)
diagnostic process includes referral, screening, interviews with informants and patients, and functional
Clinic, Cambridgeshire and
assessments. In delineating differential diagnoses, true comorbidities, and overlapping behaviour with other Peterborough NHS Foundation
psychiatric diagnoses, particular attention should be paid to anxiety, depression, obsessive-compulsive disorder, Trust, Cambridge, UK (M-C Lai,
psychosis, personality disorders, and other neurodevelopmental disorders. Possible misdiagnosis, especially in Prof S Baron-Cohen); Centre for
Addiction and Mental Health,
women, should be explored. The creation of supportive, accepting, and autism-friendly social and physical The Hospital for Sick Children,
environments is important and requires a coordinated effort across agencies and needs support from and Department of Psychiatry,
government policies. University of Toronto, Toronto,
ON, Canada (M-C Lai); and
Department of Psychiatry,
Introduction Challenges in making a diagnosis in adults National Taiwan University
Autism spectrum conditions (panel 1) comprise a set of Making a first-time diagnosis of autism spectrum Hospital and College of
neurodevelopmental syndromes with a population conditions in adults is challenging for practical, develop- Medicine, Taipei, Taiwan
prevalence of 1% across all ages. They are characterised mental, and clinical reasons. Being neurodevelopmental, (M-C Lai)

by early-onset difficulties in social communication and
unusually restricted repetitive behaviour and narrow
interests.1,2 Most research and clinical attention has
focused on recognition and intervention in early
childhood,1,3–5 but interest is growing in adulthood
outcomes and lifespan development.6,7 Early diagnosis
tends to be made more readily in individuals with
severe symptoms (eg, extreme social aloneness, no eye
contact, and frequent motor mannerisms) and
concurrent developmental difficulties (eg, cognitive or
language delay). Autism spectrum conditions in people
without obvious developmental delay (eg, those with
Asperger’s syndrome) and with more subtle difficulties
tend to be recognised later.8 In England, the weighted
estimated prevalence of autism spectrum conditions in
adults, defined by a score of 7 or higher on the Autism
Diagnostic Observation Schedule (ADOS), is 1·47%.9
Even this proportion, however, might be an under-
estimate because characteristics in adults could be
masked and, therefore, not identified by the ADOS
diagnostic algorithm.10 With the broadening of the
diagnostic criteria (panel 2), it is now acknowledged
that autism spectrum conditions might not be
recognised in some individuals until adulthood. The
UK Department of Health has responded to the need
for improving awareness and service provision
(including timely diagnosis) for adults with autism
spectrum conditions.22 Clinical guidelines have also
been published.23 Accurate and timely identification of
autism spectrum conditions in adulthood and the
provision of support services has, therefore, become an
important clinical issue.
characteristics of autism spectrum conditions have, by Correspondence to:
Dr Meng-Chuan Lai, Autism
definition, to be present in early childhood. Therefore, Research Centre, Department of
interviewing informants who can provide reliable and Psychiatry, University of
valid information about the patient’s developmental Cambridge, Douglas House,
history is essential to confirm a diagnosis, irrespective of 18B Trumpington Road,
Cambridge CB2 8AH, UK
the age of the patient at the time of assessment.1 For mcl45@cam.ac.uk
adults, the patient’s childhood caregivers might no
longer be alive or in contact, but other possible suitable
informants are older siblings, relatives, or neighbours
who knew the patient well as a child. The quality of the
informant’s recall might not be detailed or might be
inaccurate due to the long time lag. The clinician’s non-
leading questions and use of important life events to
define target time windows can help informants to
retrieve the best possible information. Generation
effects should also be taken into account. For example, if
the adult patient is in his or her 30s and the parents are
in their 60s, normative notions about what was atypical
in children’s behaviour could have changed. Thus, the
parents might report no concerns from when the patient
was a child even if the patient reports that he or she
always felt on the margins of social groups. Where
informants who were present in childhood are not
available, clinicians must rely on current clinical
assessments, self-reported history by the patient, school
or employment reports, and the observations of an
informant who has known the patient in adulthood (eg,
a partner, friend, or social worker).
Developmental changes further complicate recognition
of symptoms in adults.24 Developmental trajectories and
outcomes of social communication are far more varied in
adolescence and adulthood than in childhood, when

www.thelancet.com/psychiatry Vol 2 November 2015 1013

 Review
Panel 1: Autism spectrum conditions versus autism spectrum disorder
The term autism spectrum conditions encompasses autism
spectrum disorder in DSM-5 and pervasive developmental
disorder in DSM-IV and ICD-10. Autism spectrum conditions
include diagnostic labels such as Asperger’s syndrome or
Asperger’s disorder, autistic disorder, high-functioning autism,
and pervasive developmental disorder not otherwise specified.
Autism spectrum conditions is the preferred term because it
highlights the spectrum nature of symptoms and biomedical
bases and allows for the idea of being differently wired
neurologically, leading to both cognitive strengths and
difficulties. The word disorder implies that something is broken
or dysfunctional, whereas condition is viewed as more neutral,
less stigmatising, and more respectful. The term autism
spectrum conditions is compatible with the concept of
neurodiversity, which argues that there are multiple
developmental routes to adulthood that are all normal human
variations. Thus, people on the autism spectrum possess
cognitive profiles that in some environments can be an
advantage. At the same time, the term autism spectrum
Panel 2: Changes in diagnostic concepts of autism spectrum conditions
Although the diagnostic concepts of autism were established
by the 1940s,11–13 research into adulthood identification was not
done systematically until the 1980s,14 which was partly
associated with the evolution and broadening of the diagnostic
category over time.15
The beginning of autism as a diagnosis
From Kanner’s case series of “autistic disturbances of affective
contact” in 1943,11 early infantile autism was formulated as a
developmental condition with onset in childhood, characterised
by extreme autistic social aloneness and an obsessive insistence
on sameness.16 Later clinical follow-up and cognitive studies
further suggested that early language and specific cognitive
deficits were crucial causes of infantile autism,17 which led to the
new diagnostic category infantile autism in DSM-III.18 These
concepts all focus on early childhood identification.
Broadening of the diagnostic construct
From the 1980s, broader anomalies in social instinct and
cognition were recognised, facilitated by empirical studies that
highlighted the spectrum nature (ie, high heterogeneity) of
developmental difficulties in relation to autism,19,20 and the
introduction of Asperger’s work in Vienna, going back to at
least 1938,12 into the English-speaking world.21 An important
effect of these changes was that individuals without evident
delay in language or intellectual development (ie, not well
captured by the diagnostic concept of infantile autism) could
symptoms and impairments can be more reliably gauged
relative to developmental norms. In adults, judging
impairments might be arbitrary, and cultural factors and
the fit of the person to his or her environment have
1014
conditions recognises that other aspects of a person’s cognitive
profile in other environments can lead to disability. In contrast,
the term autism spectrum disorder focuses on the disability
aspects and views autism within the disease model. In many
health-care systems, insurance coverage requires a diagnosis
based on the DSM-IV, DSM-5, or ICD-10 criteria, which leads to
these equivalent terms of autism spectrum disorder being
preferred for clinical use. Autism spectrum conditions might be
perceived by some as being less severe than autism spectrum
disorder, but making a clinical diagnosis, by definition, requires
the patient to have experienced substantial social, occupational,
and other functional impairments that result in clinically
relevant events. We suggest that the term autism spectrum
disorder be used only if the medical, health-care, and insurance
systems require it, and in other settings medical and health-
care professionals should use the term that is in the best
interest of the individual receiving care, that is, to acknowledge
not only disability but also difference and sometimes talent.
still be appropriately identified as having autism spectrum
conditions. Diagnosis, therefore, became available for
adolescents and adults not previously identified in early
childhood. The label Asperger’s disorder or Asperger’s syndrome
created in DSM-IV and ICD-10 in the 1990s, the concept of
Asperger’s “autistic psychopathy in childhood”, and the
spectrum nature highlighted by Wing,19.20 all further modified
the construct of autism spectrum conditions and diagnostic
practice.15
Diagnosis in adulthood based on DSM-5
First identification of autism spectrum conditions in adulthood
is clearly established in DSM-5. Although the usefulness of
previous diagnostic subgroups, such as Asperger’s disorder, was
debated, the DSM-5 diagnosis autism spectrum disorder
highlights the heterogeneity of autism, for example, from
minimal verbal expression to fluent speech or severe learning
difficulties to above-average IQ. Important features of the latest
DSM-5 definition that support diagnosis in adulthood are that
diagnostic behavioural descriptions apply to all ages; behaviour
contributing to a diagnosis can be current or historical; and
criterion of a specific early age of onset is no longer required,
being replaced by “symptoms must be present in the early
developmental period (but may not become fully manifest until
social demands exceed limited capacities, or may be masked by
learned strategies in later life).”
important roles. Second, under long-term social pressure
to fit in, some adults with autism spectrum conditions
might have developed coping or camouflaging strategies
to conceal specific behaviours in social situations, either
www.thelancet.com/psychiatry Vol 2 November 2015

through effort or automatically.10,25 For example, individuals
might have trained themselves to make eye contact during
conversation, to use learned phrases or pre-prepared jokes
in conversation, or to imitate facial expressions (eg,
smiles) or gestures. Someone who has learned the strategy
of telling stories and anecdotes as a way of continuing a
social interaction, for example, can appear superficially
sociable, although a more subtle analysis could reveal he
or she lacks turn-taking and instead tends towards
monologue. Someone who has learned to express
sympathetic sounds at the mention of sad situations could
equally succeed in hiding difficulties in social interaction.
Clinicians need to be aware of camouflaging behaviours
to detect underlying social-communication difficulties.
Clinically, individuals with autism spectrum conditions
have high rates of co-occurring psychiatric disorders in
childhood,26,27 adolescence,28,29 and adulthood.30–36 They
also tend to have high rates of co-occurring medical
disorders, such as epilepsy, sleep, gastrointestinal,
metabolic, and immune disorders, and other central
nervous system anomalies.35,37 Some co-occurrence might
be due to shared biological mechanisms but also could
be a consequence of living with autism spectrum
conditions, particularly with insufficient support.1,38
Some adults initially present to mental health services
because of co-occurring psychiatric disorders or common
differential diagnoses (eg, anxiety, depression, obsessive-
compulsive disorder, psychosis, personality disorders,
and other neurodevelopmental disorders). The
underlying autism spectrum conditions might, therefore,
be overshadowed if neurodevelopmental disorders are
not considered during assessment. Likewise, a diagnosis
of an autism spectrum condition could prevent
Panel 3: Challenges in the identification of autism spectrum conditions in girls and women39
Autism spectrum conditions in girls and women are, on
average, diagnosed later than in boys and men. Longitudinal
epidemiological data, however, show that increasing numbers
of cases in girls and women are being identified, which perhaps
reflects improved awareness among clinicians of the so-called
female phenotype. Earlier superficial understanding of autism
spectrum conditions could have led to incorrect myths, such as
if a woman can make conversation and eye contact or if a
woman is married or is a mother, she cannot have autism. Such
generalisations, however, ignore efforts of coping and
camouflaging or overlook that some women have just enough
social skills to achieve these but are struggling in other ways.
Only careful assessment would reveal subjective difficulties.
Although identification of girls and women with autism
spectrum conditions is not simply an issue about the female
phenotype, it is helpful for diagnosticians to be familiar with
how behavioural presentations might qualitatively differ
between the sexes or genders. For example, girls and women
with autism spectrum conditions might show restricted
interests that involve people (eg, following a pop group,
www.thelancet.com/psychiatry Vol 2 November 2015
Review
identification of true comorbid psychiatric disorders.
Sensitivity to the various behavioural presentations of
autism spectrum conditions moderated by demographic
and cultural factors, for example those in women
(panel 3), is particularly important to make an accurate
diagnosis in adults.
Diagnostic procedures
The guidelines of the UK National Institute of Health
and Care Excellence23 suggest that assessment should be
considered if an adult shows possible autistic features
defined by the psychiatric diagnostic criteria, and at least
one of the following: difficulty in obtaining or sustaining
employment or education; difficulty in initiating or
sustaining social relationships; previous or current
contact with mental health or learning disability services;
or history of a neurodevelopmental (including learning
disabilities and attention deficit hyperactivity disorder) or
mental health disorder. Diagnosis, therefore, is not just a
function of the number of autistic traits a person shows,
but also how they affect the person’s life (panel 4, figure).
Keeping in mind the caveat that scores on a screening
instrument are only indicative of the need for a formal
diagnostic assessment, screening can be assisted through
the use of questionnaires that measure quantitative
autistic traits (table 1). Examples are the full 50-item
Autism Spectrum Quotient (AQ)42,43 or the ten-item
abridged version,43,44 the 65-item Social Responsiveness
Scale-Adult version,45 and the 80-item Ritvo Autism
Asperger Diagnostic Scale-Revised, which has been
validated internationally.46,47 Formal assessment, however,
should only be recommended if there is also a clinical
indication.23 Of note, the clinical specificity of screening
cartoons, literature, or learning about other cultures) or animals
(eg, horses) rather than objects or things, which are often seen
in boys and men with autism spectrum conditions. On average,
though, girls and women might be more likely than boys and
men to adopt camouflaging strategies in social situations and
show childhood imaginative play (which could be non-
reciprocal and scripted) that involves dolls and pretence,
perhaps for both biological and gender-socialisation reasons.
These behaviours could render girls’ and women’s social-
communication difficulties less noticeable than those of boys
and men. Examples of subtle indicators of autism spectrum
conditions in girls and women might nevertheless be revealed
as excessive shyness or bossiness, being overcontrolling in
interpersonal relationships, being very determined or
perfectionistic, talking loudly, saying things that others might
regard as a faux pas or socially taboo, demanding extremely
high standards of friends, such as extreme loyalty, or forming
extremely clingy attachments to specific people, or systemising
(eg, manualising) social behaviours.
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 Review
Panel 4: Autistic traits and person–environment fit
The Autism Spectrum Quotient40 exemplifies that there is no
specific diagnostic cutoff in the dimensional nature of autistic
traits that run right through the population. The distribution of
scores for men and women with and without autism spectrum
conditions, although significantly different, show substantial
overlap.41 Some adults clinically diagnosed as having autism
spectrum conditions have low scores and some of those without
a diagnosis have high scores. A similar point can be made with
other instruments designed to measure autistic traits across
different ages, such as the Social Responsiveness Scale. These
patterns might partly be explained by fit between individuals
and their environments. Someone with a high level of autistic
traits who is living and working in an environment where the
traits do not interfere does not need a clinical diagnosis.
Examples of such environments include a partner or parent who
organises the person’s social life and a workplace tolerant of
individuals who might not want to socialise or who might not
conform socially and that enables the person to use their autistic
traits positively (eg, in a job that requires attention to detail or
an ability to spot patterns quickly). Other examples might be
group hobbies that are highly structured (eg, card games,
enthusiast and other clubs, or a classical music orchestra) where
the person is valued for their expertise and the shared interest
creates a social life for the person. In contrast, a person with the
35 ASC female
ASC male
Control female
Control male
30
25
Percentage of individuals (%)
20
15
10
5 typical development55 and, therefore, clinically is very
0
0–5 6–10 11–15 16–20 21–25 26–30 31–35 36–40 41–45 46–50
AQ score
Figure: Distribution of autistic traits in the general population and adults with ASC
ASC=autism spectrum conditions. AQ=Autism Spectrum Quotient. Reprinted from reference 41 by permission of PLoS.
measures is unclear, as individuals with other disorders,
such as schizophrenia or bipolar disorder, might also
score highly.48,49 Finally, the results of these screening
instruments vary in different clinical settings and
populations and, therefore, results should always be
interpreted with care.
1016
same high score on the Autism Spectrum Quotient or Social
Responsiveness Scale might need a clinical diagnosis because of
a poor fit with his or her environment, for instance if the person
has no social support, where excessive social communication or
multitasking demands are placed on him or her in the
workplace, leading to high levels of stress, or if he or she has
been teased or bullied for being different. The person might
even be manipulated by others because of his or her social
naivety, becoming the victim of sexual abuse or being
manipulated to commit a crime by criminals, such as being
asked to hold a weapon. Such situations might further lead to
comorbid depression or anxiety and trigger the referral for an
assessment of a suspected autism spectrum condition. Thus,
although of a neurobiological origin, autism spectrum
conditions might only manifest as a disability in specific
environments, which has implications for making
environmental adjustments. This pattern situates autism
spectrum conditions within the social disability framework,
whereby a disability is not necessarily only the product of the
individual but also of the fit with environment. Some extreme
forms of autism spectrum conditions could lead to evident
disability irrespective of the environment, but the principle of
trying to situate the individual in an autism-friendly
environment is important.
The interview with the childhood caregiver or other
informants should provide clarification of behavioural
characteristics in childhood, adulthood, or both, crucial
to making a differential diagnosis. Instruments include
the Autism Diagnostic Interview-Revised,50 the
Diagnostic Interview for Social and Communication
Disorders,51 the Developmental, Dimensional, and
Diagnostic Interview,52 and the Asperger Syndrome (and
High-functioning Autism) Diagnostic Interview.53
Standardised observational measures can assist in
judging symptoms of autism spectrum conditions shown
in real-time interpersonal contexts. ADOS module 4 is
the only validated observational instrument for diagnosis
in adulthood.54 In men this instrument can distinguish
between autism spectrum conditions and psychopathy or
useful. The sensitivity of this tool to detect characteristics
of autism spectrum conditions in highly functioning
adults (particularly women), though, might be inadequate
as camouflaging and learned behaviours in social
situations can reduce the number of items that can be
scored in the algorithm.10 Thus, scores lower than the
cutoff alone should not be taken as a reason to rule out
autism spectrum conditions. Careful understanding of
the individual’s difficulties as perceived by the patient
and informants, and a clear delineation of coping
(camouflaging) strategies that have developed over time,
are important to make an accurate diagnosis. Historical
symptoms, including those that might have disappeared
www.thelancet.com/psychiatry Vol 2 November 2015

or been masked, should be taken into account,
particularly in the context of the DSM-5 (panel 2).
Comprehensive assessment of characteristics over the
lifespan is crucial to accurately identifying autism
spectrum conditions. Where resources allow, cognitive
assessments to identify individual strength and weakness
are helpful. Lifespan developmental issues, including
degree of independence (eg, personal care, living,
transport, handling of personal finances, and
employment) and quality of life (eg, health, happiness,
relationships, and wellbeing) should also be investigated.
Initial referral
Identification of needs for assessment (minimum)
Screening
Use of self-report questionnaires (optimum)
Autism Spectrum Quotient (adult version)
Social Responsiveness Scale-Adult version
Ritvo Autism Asperger Diagnostic Scale-Revised
Interview with the adult’s childhood caregiver
Assessment of developmental history (minimum,
although might not be viable for practical reasons)
Use of semistructured interview schedule (optimum)
Autism Diagnostic Interview-Revised
Diagnostic Interview for Social and Communication
Disorders
Developmental, Dimensional, and Diagnostic Interview None
Asperger Syndrome (and High-functioning Autism)
Diagnostic Interview
Adult Asperger Assessment
In-person interviews and interaction with the adult
Identification of clinically relevant characteristics of
autism spectrum conditions across settings (minimum)
Use of semistructured interview schedule (optimum)
Autism Diagnostic Observation Schedule, module 4
Adult Asperger Assessment
Assessing daily and occupational functioning (minimum) Needs to be done across settings (at home, education establishment, workplace, etc)
Making differential diagnosis and identifying medical and Beware of bidirectional diagnostic overshadowing with comorbid disorders and differential
psychiatric comorbidities (minimum)
Cognitive assessments (optimum)
Medical (including neurological) assessments (optimum)
Discussion of lifespan developmental issues (optimum)
Revealing assessment results and providing suggestions for support and intervention
Reveal diagnostic results (minimum)
Suggest next steps and introduce resources (minimum)
Table 1: Clinical assessment procedures for adults suspected to have autism spectrum conditions
www.thelancet.com/psychiatry Vol 2 November 2015
Review
The Adult Asperger Assessment (AAA)56 was developed
specifically as a diagnostic tool to aid identification of
autism spectrum conditions in adults. This tool
incorporates the AQ,40 the Empathy Quotient,57 and the
Childhood Autism Spectrum Test58 screening
questionnaires, and is a useful appendix to clinical
assessment. The AAA is used to interview the childhood
caregiver or other relevant informant and the adult patient
at the same time to cross-validate past and present charac-
teristics of autism spectrum conditions. In particular, the
AAA investigates features of communication not detailed
Comments
Can be initiated by the adult, family doctor, or mental health professionals and may be facilitated
by family members, friends, or workplace colleagues
Only indicate need for formal diagnostic assessment and are not diagnostic; can provide a
dimensional description of self-perceived autistic traits
Full questionnaire (50-item): in UK samples at a cutoff of 26, sensitivity 0·95 and specificity 0·52,42
or sensitivity 0·88 and specificity 0·80 also at a cutoff of 2643
Abridged version (ten-item): in UK samples at a cutoff of 6, sensitivity 0·88 and specificity 0·91,44
or sensitivity 0·80 and specificity 0·87 also at a cutoff of 643
In a Japanese sample at a cutoff of 65 for men, sensitivity 0·84 and specificity 0·81, and at a cutoff
of 52 for women, sensitivity 0·95 and specificity 0·6145
In English-speaking samples in multiple countries at a cutoff of 65, sensitivity 0·97 and specificity
1·00,46 and in a Swedish sample at a cutoff of 72, sensitivity 0·91 and specificity 0·9347
Be aware of recall bias and effects of generation differences
Be aware of recall bias and effects of generation differences
None
None
None
None
Be careful judging functional impairments in the light of background contexts, particularly in
relation to person–environment fit; camouflaging and learned behaviours should be recognised,
clarified, and understood
Effects of camouflaging and learned behaviours on scoring should be acknowledged and assessed
None
None
diagnoses
Assess general intellectual functioning, language and communication, executive functions, social
cognition, motor functions and coordination, and sensory and perceptual issues; an important aim
is to identify strengths and weaknesses of the individual
Do as needed or indicated
Discussion of issues related to independence, wellbeing, and quality of life is generally helpful
Beware of positive and negative reactions to results
Support and intervention, if needed, should be suggested and should be directed at the individual
and the surrounding physical and social environments
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in the DSM-IV or ICD-10 criteria for Asperger’s disorder or anxiety), shared or overlapping symptom dimensions and
syndrome (eg, pedantic speech or faux pas) and, therefore, possibly shared underlying mechanisms (eg, obsessive-
is more stringent than earlier criteria. compulsive disorder), or overlapping diagnostic criteria
(eg, schizoid, schizotypal, or obsessive-compulsive
Comorbid, overlapping, and differential personality disorders).1,38 When considering whether
diagnoses symptoms are part of a pre-existing autism spectrum
Cross-sectional studies show high rates of co-occurring condition, the observed numbers of co-occurring
medical and psychiatric diagnoses and correspondingly diagnoses become fewer than in a general clinical
high need for services in adults with autism spectrum diagnostic assessment, but still remain high.62 A major
conditions.30–37,59,60 Common psychiatric diagnoses include clinical challenge in assessing adults with suspected
depressive disorders, anxiety disorders, obsessive-com- autism spectrum conditions is to delineate differential
pulsive disorder, attention deficit hyperactivity disorder, diagnoses, true comorbidities, and diagnoses that are due
and personality disorders.30–36,61 Multiple diagnoses are at least partly to overlapping behavioural features (table 2).
common. A study of adults with autism spectrum
conditions showed that they have twice the number of co- Anxiety
occurring psychiatric diagnoses as other psychiatrically Anxiety disorders are seen frequently (more than 50%) in
referred adults.30 This high frequency is mostly based on individuals with autism spectrum conditions, at all ages,
observations in clinical populations, but whether the particularly specific phobias in children and social anxiety
pattern is similar in the wider general population and generalised anxiety disorders in adults.26–28,31,32,35
(especially in undiagnosed adults) is unknown. Reported rates depend on the instruments used and how
Population-level epidemiological studies focusing on late- much effort is made to delineate reactive behaviours of
identified autism spectrum conditions and co-occurring autism spectrum conditions from true comorbidities or to
disorders are needed to assess prevalence. identify anxiety syndromes unique to autism spectrum
Reasons for co-occurring disorders include shared conditions.63,64 Anxiety in individuals with autism
pathophysiology or cause (eg, epilepsy, attention deficit spectrum conditions might partly interact with the need
hyperactivity disorder, or anxiety), consequences of living for sameness and be increased in environments that are
with autism spectrum conditions (eg, depression or unpredictable.65,66 If efforts are specifically directed towards
distinguishing generalised worry from routine-related
Relation to autism spectrum conditions agitation or social anxiety from social avoidance,67 the
Anxiety disorders Mostly comorbid
frequency of generalised anxiety disorder or social anxiety
Social anxiety disorder Differential and comorbid
disorder declines. Across studies, however, these
Depressive disorders Comorbid
adjustments do not negate the high frequency of anxiety
in individuals with autism spectrum conditions, which
Obsessive-compulsive disorder Overlapping, differential, and comorbid
suggests the possiblity that they not only share
Psychotic disorders Differential and comorbid
pathophysiological cause (eg, amygdala hyper-reactivity)
Bipolar disorders Comorbid
but also arise from the consequences of living with autism
Schizoid personality disorder Overlapping, differential, and comorbid
spectrum conditions.63 Another diagnostic challenge is
Schizotypal personality disorder Overlapping, differential, and comorbid
that cognitive and affective anxiety symptoms might not
Paranoid personality disorder Differential and comorbid
be clearly recognised or articulated by adults with autism
Borderline personality disorder Differential and comorbid
spectrum conditions because of coexisting alexithymia or
Antisocial personality disorder Differential and comorbid
impaired metacognition. Thus, detection of symptoms
Narcissistic personality disorder Differential and comorbid
might need to rely on the identification of stimuli-specific
Histrionic personality disorder Differential (unlikely to co-occur)
or situation-specific physical and autonomic symptoms
Obsessive-compulsive personality disorder Overlapping, differential, and comorbid
and behaviours.
Avoidant personality disorder Differential and comorbid Social anxiety disorder is especially important to
Dependent personality disorder Differential and comorbid consider in the differential diagnosis of autism spectrum
Attention deficit hyperactivity disorder Differential and comorbid conditions because of the similar surface-level
Language disorders Differential and comorbid presentation of social avoidance. Differentiation can be
Disorders of motor development Comorbid made by investigating the reasons for symptoms, for
Tic disorders Comorbid instance difficulties in social understanding and social
History of social deprivation, maltreatment, or Differential skills in adults with autism spectrum conditions versus
extended treatment in an institution or hospital
fear of judgment and performance anxiety in social
Eating disorders Comorbid
situations in social anxiety disorder. Atypical social
Gender dysphoria Comorbid
communication would have an early onset in individuals
Substance misuse Comorbid with autism spectrum conditions versus onset later in
Table 2: Comorbid, overlapping, and differential diagnoses to autism spectrum conditions in adults
childhood, and aggravation of symptoms in teenage
years in those with social anxiety disorders. Additionally,

1018 www.thelancet.com/psychiatry Vol 2 November 2015


atypical face-scanning patterns are characteristic of
autism spectrum conditions compared with the
normative inverted triangular scanning pattern, but with
rapid aversion to the eyes that is typical of social anxiety
disorder (these can be assessed with gaze-tracking
technology).68 Highly repetitive behaviour or unusually
narrow interests are also necessary core features of
autism spectrum conditions but not of social anxiety
disorder. In adults with autism spectrum conditions the
numbers of symptoms characteristic of social anxiety
disorder might be higher than in neurotypical adults, but
they are lower than in people with social anxiety disorder
itself.69 When considering a differential diagnosis, it
should be borne in mind that social anxiety disorder can
be a true comorbidity of autism spectrum conditions in
adults, possibly owing to a shared cause or arising as a
consequence of living with autism spectrum conditions
(eg, after repeated social failure).70
Depression and suicidal thoughts and behaviours
Increased depressive symptoms and depressive disorders
could be seen in more than 50% of adults who have
autism spectrum conditions.10,31,32,35,71,72 Depression is an
important comorbidity for which to screen. It can lead to
adults first presenting to mental health services and
prompt subsequent diagnostic assessment for autism
spectrum conditions,73 especially when issues such as
longstanding difficulty in making or keeping friends, a
lifestyle with a strongly defined routine, or strong narrow
interests are present.
Identification of depression in adults with autism
spectrum conditions might be challenging because of an
individual’s reduced capability to recognise, articulate,
and show his or her own emotional states and thoughts,
verbally and non-verbally. Again, these limitations might
be due to alexithymia or difficulties in metacognition. For
this reason, among the core diagnostic features of
depression, changes in interest (anhedonia) and energy,
expressed by changes in the character and reward value of
preoccupations and narrow interests, might be of equal or
greater diagnostic use than subjective report of mood.74
Whether the onset of depression was overshadowed by
pre-existing characteristics of autism spectrum conditions
(eg, social withdrawal or restricted affect) should also be
checked.74 The contrasting of present behaviour to an
earlier baseline is important for diagnosis, as for mood
disorders in neurotypical individuals.
Depression in individuals with autism spectrum
conditions, as in neurotypical individuals, is frequently
preceded by stressful life events. Increasing intellectual
ability is associated with increasing social adjustment and
understanding but also increasing negative self-view.75
Highly functioning adults with autism spectrum
conditions, especially those with high social motivation
who have experienced repeated social failure, might,
therefore, be more susceptible to depression because they
are vulnerable to low self-worth.72,74 Identification,
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Review
discussion, and attempts to deal with negative experiences
that adults with autism spectrum conditions frequently
experience (eg, social difficulties, isolation and rejection,
being bullied, low self-esteem, and hopeless feelings
associated with awareness of limitation) are crucial
clinical tasks over and above the diagnosis.
Increased frequency and intensity of suicidal thoughts
and behaviours, whether associated with depression or
not, is a serious clinical issue that must be assessed in
adults with suspected autism spectrum conditions.35,76
Reported rates of suicidal ideation and attempts are 11–14%
in youths,77,78 but as high as 66% for ideation and 35% for
previous plans or attempts in adults who present to
diagnostic clinics71 and in the community.79 Rates are even
higher in adults who have concurrent depression.71,79 Some
cognitive features of autism spectrum conditions might
increase the risk of suicide. Difficulties in mentalising
(understanding of mental states) could lead a person with
an autism spectrum condition to conclude erroneously
that other people would be better off without them or to
fail to appreciate the immense pain suicide would cause to
those who love them. Difficulties in switching attention
from one topic to another and reduced cognitive flexibility
might lead to obsessive and detailed research into
methods for committing suicide. The literal and
dichotomous thinking that is common in people with
autism spectrum conditions might also lead to formation
of absolute conclusions (eg, “if I can’t be happy I may as
well be dead” or “if I can’t achieve x, there’s no point in
life”).
Obsessive-compulsive disorder
Adults with autism spectrum conditions have a higher
frequency of co-occurring obsessive-compulsive disorder
(up to 30%) than adults in the general population.31,32,34,35
This finding is due to more than misdiagnosis. Obsessive-
compulsive behaviour is an integral part of autism
spectrum conditions and obsessive-compulsive disorder,
with few qualitative differences in the types of behaviour
associated with each diagnosis.80 Autism spectrum
conditions and obsessive-compulsive disorder are both
multidimensional constructs, and common obsessive-
compulsive behaviours (eg, a need for symmetry) might be
due to phenotypic overlap and shared common causal
mechanisms.81
Despite the notable overlap, differential diagnosis is
possible. Early-onset difficulty in social communication
is an important part of autism spectrum conditions but
not of obsessive-compulsive disorder and, therefore,
developmental history is important to include in
differentiation. Additionally, obsessive-compulsive
behaviour in obsessive-compulsive disorder is often
egodystonic (ie, unwanted and the individual might be
aware that it is illogical) whereas that in autism spectrum
conditions (eg, stereotyped or ritualistic behaviour) is
egosyntonic and often reported to be pleasurable.82,83
Adults only with obsessive-compulsive disorder often
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show higher scores on measures of obsessive-compulsive
behaviour than those only with autism spectrum
conditions80 and, therefore, symptom severity and
functional effects are also points of interest. After careful
differentiation, obsessive-compulsive disorder might
still be a true comorbidity of an autism spectrum
condition. In such cases, criteria for the two diagnoses
will be met and the severity of obsessive-compulsive
behaviour is often greater than with either diagnosis
alone.84 Additionally, the signs and symptoms of autism
spectrum conditions should be present before those of
obsessive-compulsive disorder, which often emerge at
school age or later.
Psychotic and bipolar disorders
Although there are historical links between autism
spectrum conditions and schizophrenia because the
early nosology of childhood psychoses was used to refer
to autism in children, the two constructs are now clearly
differentiated by age of onset (early in life for autism
spectrum conditions but typically from adolescence or
early adulthood for schizophrenia spectrum). The course
also differs (generally stable characteristics in autism
spectrum conditions, but often fluctuating symptoms
and variable course in schizophrenia spectrum).
Making a differential diagnosis can be difficult if
information on childhood development is not available.
Clinical assessment needs to take into account possible
impaired comprehension of unfamiliar concepts in
individuals who have autism spectrum conditions.21 The
crucial point of differentiation is whether symptoms that
seem psychotic in nature can be better understood as
stemming from core features or reactive behaviours of
autism spectrum conditions.85 Thus, paranoid ideation
that is understandable after repeated social mis-
understanding and experiences of social failure in
someone with autism spectrum conditions needs to be
differentiated from an “ultimately un-understandable”
psychotic belief. Equally, social isolation that is
characteristic of autism spectrum conditions needs to be
differentiated from negative symptoms of schizophrenia,
but confusion sometimes arises when it comes to the
ICD-10 diagnosis of simple schizophrenia.82
Idiosyncratic speech and thought that are common in
autism spectrum conditions, which are often concrete
and pedantic but logical, can be differentiated from the
vague, unclear and circumstantial speech and formal
thought disorder characteristic of the schizophrenia
spectrum.21,38 Whether symptoms are associated with
academic and functional decline, occur after disruption
of routines and disappear after recovery of routine
structure, or respond to anxiety and stress management,
environmental manipulation, or antipsychotic medica-
tion, might further aid diagnostic judgments.85,86
Psychosis can be misdiagnosed in adults with autism
spectrum conditions if clinicians ask questions that the
person could misinterpret. For example, if asked “Do you
1020
hear voices when you are alone?” or “Have you ever
thought other people were talking behind your back?”, a
literal affirmative answer made by an individual with an
autism spectrum condition could be mistaken as
indicating psychotic symptoms. Thorough clarification
to obtain accurate descriptive psychopathology is crucial.
Equally, some behaviours in autism spectrum conditions
could seem to be signs of psychosis, such as catatonia,87
but the similarity might be superficial. Catatonic
behaviour in people with autism spectrum conditions
can occur as an extreme reaction to stress or when the
person feels overwhelmed (eg, too many decisions to be
made) and should not be interpreted as a sign of
psychosis. Misdiagnosis of psychosis is a serious issue
because it can lead to inappropriate use of antipsychotic
medication or even inappropriate detention under
mental health legislation.
Psychotic disorders can be truly comorbid with autism
spectrum conditions. Retrospective diagnosis shows that
in adults88 and children89 diagnosed as having schizo-
phrenia, 30–50% also present with substantial symptoms
of autism spectrum conditions in early childhood. A
diagnosis of autism spectrum conditions is predictive of
psychotic experiences at age 12 years (odds ratio 2·81,
95% CI 1·07–7·34)90 and of lifetime diagnoses of non-
affective psychotic disorders (10·1, 8·1–12·5).91
Bipolar disorder is another comorbid disorder to be
checked, as the prevalence in adults with autism
spectrum conditions is 6·0–21·4%92 and the odds ratio in
adults diagnosed as having autism spectrum conditions
is 6·6 (95% CI 5·2–8·4).91 If the episodic and cyclic
nature of bipolar disorder is not carefully delineated,
hypomanic or manic episodes might not be recognised
in individuals with autism spectrum conditions, which
could lead to mistreatment.92
Personality disorders
Differentiation of autism spectrum conditions from
personality disorders in adulthood can be difficult23,93 and
requires rethinking of current psychiatric nosology
(panel 5). Studies show a surprisingly high occurrence
(up to 60%) of at least one personality disorder in adults
who have autism spectrum conditions,31,33,61 particularly
those classified in clusters A (schizoid and schizotypal)
and C (obsessive-compulsive and avoidant); those in
cluster B are seen less frequently. Possible reasons for
this high frequency of co-occurring diagnoses include
inadequate differential diagnosis, true comorbidity, and
overlapping of specific defining behavioural-cognitive
features in clusters A and C.94
Some defining features of schizoid personality disorder,
namely social-emotional detachment and restricted
affectivity, overlap with core features of autism spectrum
conditions.21,33,82 Wolff and Barlow95 have argued that
schizoid personality disorder and Asperger’s syndrome are
largely similar95 and they might correspond to the so-called
loners subgroup of autism spectrum conditions classified
www.thelancet.com/psychiatry Vol 2 November 2015

by Wing96 later. Others have suggested that, nosologically,
Asperger’s syndrome might be considered a childhood
precursor for adulthood schizoid personality disorder.97
Therefore, the high frequency of co-occurrence could be
due at least partly to overlapping of behavioural criteria. Yet
others, however, have argued that schizoid personality
disorder can be an independent diagnosis and a true
comorbidity in people with autism spectrum conditions.14,24
Features of schizotypal personality disorder include social-
emotional detachment (as in schizoid personality disorder)
and eccentricity (which can be difficult to differentiate
from idiosyncrasy or social non-conformity in autism
spectrum conditions), which might contribute to increased
reported co-occurrence.33 Despite these diagnostic overlaps,
differential diagnosis can be made on the basis of the
repetitive, restricted, and stereotyped behaviours and
interests that are specific to autism spectrum conditions
but not schizoid or schizotypal personality disorder.98
DSM-IV and DSM-5 explicitly exclude diagnosis of these
two personality disorders if they occur exclusively in the
context of an autism spectrum condition, although this
operational criterion does not really help to clarify
fundamentally the nosological overlap and inter-relations
of these disorders, especially from a developmental
psychopathology viewpoint.
Paranoid personality disorder has no overlapping
criteria with autism spectrum conditions. Differential
diagnosis should consider the characteristics of autism
spectrum conditions (eg, difficulty in understanding
others’ intentions) and experiences living with these (eg,
repeated negative interpersonal experiences) that can
lead to increased interpersonal sensitivity and over-
generalisation of negative social experiences, which can
further lead to longstanding paranoid ideation, in adults
with autism spectrum conditions.21,33
Borderline personality disorder can be misdiagnosed
and hinder recognition of autism spectrum conditions,
particularly in women.99 Misdiagnosis is probably due in
many cases to superficial similarities to possible secondary
features of autism spectrum conditions (eg, persistent
difficulties in interpersonal relationships, identity issues,
difficulties with affect regulation, and increased rate of
self-harm and suicidal behaviour).33 Autism spectrum
conditions should, therefore, be ruled out before a
diagnosis of borderline personality disorder is made.
Differential diagnosis should take into account
developmental history (eg, social communication,
attachment and interpersonal relationships, and history of
trauma or maltreatment) and involve a detailed assessment
of non-verbal communication impairment, which is rarely
present in borderline personality disorder but central to
autism spectrum conditions.24 Equally, individuals with
borderline personality disorder do not typically show the
narrow interests, repetition, or insistence on sameness
that are characteristic of autism spectrum conditions.
Confusion between antisocial personality disorder and
autism spectrum conditions might arise owing to an
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Review
Panel 5: Relation between personality disorders and autism spectrum conditions
Autism spectrum conditions are characterised by early-onset and longstanding behavioural
and cognitive characteristics. Asperger,12,21 for example, deemed what he called autistic
psychopathy (later known as Asperger’s syndrome) to be an atypical form of personality.
Personality disorders are defined as enduring, pervasive, stable maladaptive patterns of
behaviour that are established by the time of adolescence or early adulthood, although the
core characteristics can emerge in childhood. Separating autism spectrum conditions from
personality development can, therefore, be difficult.25 Additionally, in contrast to many
psychiatric disorders, autism spectrum conditions and personality disorders are both
characterised by egosyntonicity. Age-of-onset criteria set by the DSM for most personality
disorders (ie, early adulthood) have been argued to be differential,33 but fundamental
conceptual confusions about overlapping cross-sectional features and unclear
developmental relations remain. Moving forward, delineation of shared and distinct
cognitive features and the developmental trajectories and inter-relations of autism
spectrum conditions and personality disorders will be an important next step to improving
psychiatric nosology. Practically, careful investigation of the developmental history and
current characteristics indicative of autism spectrum conditions in the initial work-up is
essential before a diagnosis of personality disorder is made.33,38
ill-defined use of the term “lack of empathy”. The confusion
can be avoided by clarification of the distinction between
cognitive and affective empathy.100,101 Autism spectrum
conditions are mostly characterised by difficulties in
cognitive empathy (also known as theory of mind,
mentalising, or mentalisation and reflective functioning)
and can be associated with concurrent alexithymia.102 In
contrast, antisocial personality disorder and psychopathy
are characterised by reactive aggression and reduced
affective empathy (the drive and capacity to respond with
an appropriate emotion to another person’s mental state or
emotion),103 but cognitive empathy remains intact.100
Differences in cognitive empathy might explain why in
antisocial personality disorder the capacity for deception is
intact or better than average, whereas in autism spectrum
conditions it is frequently impaired.104 Thus, adults with
autism spectrum conditions might seem unempathic, for
example because they do not read the mental states
underlying other person’s emotional expressions or infer
that the other person is expecting to be comforted. By
contrast, when they hear or are explicitly told that another
person is suffering, they become upset, which reflects
intact affective empathy, and they are motivated to help (ie,
have intact sympathy).100 Despite these differences, autism
spectrum conditions and antisocial personality disorder
can co-occur in some individuals.101
Narcissistic personality disorder should be considered
as a differential diagnosis in adults with autism spectrum
conditions93,105 because of seemingly similar egocentricity.
For instance, people with autism spectrum conditions
might seem arrogant when insisting on correcting
another’s errors or lecturing on their own special
interests. The core features of the two constructs,
however, are separate. Narcissistic personality disorder is
characterised by reduced affective empathy and sympathy,
but not specifically cognitive empathy. Therefore, adults
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with autism spectrum conditions are often unaware of
the social effect of their behaviour, whereas adults with
narcissistic personality disorder tend simply to be
indifferent. Histrionic personality disorder is seldom
reported in individuals with autism spectrum conditions.
Characteristics defining obsessive-compulsive person-
ality disorder (also known as anankastic personality
disorder) overlap substantially with those for autism
spectrum conditions,33,94,106 such as preoccupation with
details and orderliness, perfectionism, insistence by the
individual of doing things in his or her own way, inflexibility
about morality, rigidity, and stubbornness. The resulting
confusion still needs to be resolved nosologically to better
define the boundary and commonality between the two
constructs. In the meantime, the interpretation of the high
co-occurrence remains equivocal, but it might be better to
consider first whether an individual has an underlying
autism spectrum condition before diagnosing obsessive-
compulsive personality disorder.106
Avoidant (anxious) personality disorder in adults with
autism spectrum conditions is not necessarily due to
overlapping criteria but is more likely to be due to the
consequences of living with autism spectrum conditions.
Repeated social difficulty can lead to social hyper-
sensitivity, and sensory-perceptual difficulties can
increase sensitivity to stressful environments. All these
features can lead to pronounced and persistent avoidant
behaviours in autism spectrum conditions.33
Finally, there is no overlapping criterion for dependent
personality disorder and autism spectrum conditions,
although reduced autonomy might be seen in specific
environments (eg, employment) for individuals with the
latter.33 Additionally, adults with autism spectrum
conditions might show delayed transition to emotional
independence or being able to live independently. This
delay is possibly due to a resistance to change and,
therefore, moving out of the parents’ home may be too
stressful to consider. Although infrequent, the two
diagnoses can co-occur if an adult with an autism
spectrum condition also shows persistent and excessive
submissiveness or clinginess to or has fixation that
focuses on a particular person.
Other disorders
Neurodevelopmental disorders tend to co-occur.107 In
adults with autism spectrum conditions, retrospective
identification also shows frequent co-occurrence of other
childhood neurodevelopmental difficulties.108 Identifi-
cation of other neurodevelopmental disorders, therefore,
is crucial for adults suspected of having autism spectrum
conditions.
Attention deficit hyperactivity disorder is seen in up to
40% of adults with autism spectrum conditions.31,32,109
Traits are interlinked in the general population
longitudinally110 and cross-sectionally.111 An important
point of differentiation is the nature of surface-level
inattentiveness. In autism spectrum conditions in-
1022
attentiveness is characterised by slowness or difficulty
in attention disengagement and switching, whereas in
attention deficit hyperactivity disorder the main
characteristic is difficulty in maintaining focused
attention.109 Taking into account developmental history
can also assist in differentiation.82 Furthermore, difficulty
with language,112 motor development (eg, dyspraxia,
dysgraphia, and incoordination),113 and tic disorders29 are
all prevalent in autism spectrum conditions and should
be assessed. Severe early social deprivation can result in
quasi-autistic patterns114 and, therefore, history of
deprivation, maltreatment, or extended treatment in an
institution or hospital, as well as attachment formation,
should also be screened and assessed.
A characteristic feature of neurodevelopmental
disorders is the frequent presence of subthreshold
symptoms, in accordance with their being on a spectrum.
Broader autism phenotype refers to subthreshold social-
communication and behavioural features and unusual
personality traits that are milder manifestations of
autism spectrum condition characteristics and are
frequently seen in relatives of affected individuals.115
Although broader autism phenotype does not constitute
a formal clinical diagnosis, clinical needs might be
similar to those for autism spectrum conditions (eg,
owing to high rates of psychiatric comorbidity).115
Consideration of subthreshold symptoms can confuse
differential diagnosis if categorical diagnostic systems
are used. We suggest, therefore, that making a
categorical, dichotomised differentiation between
autism spectrum conditions and broader autism
phenotype is not necessarily helpful for individuals at
the “borders” between the two. Rather, dimensional
perspectives can be adopted. To make a categorical
clinical diagnosis of autism spectrum conditions (eg,
according to DSM-5 criteria for autism spectrum
disorder), judgment should take into account the degree
of distress and functional impairment (taking into
account person–environment fit) and need for clinical
intervention. With a dimensional view, the presence of
non-clinical but strong autistic traits or broader autism
phenotype is acknowledged, which might help key
people in the family, educational, and employment
contexts to better understand these individuals. In turn,
this understanding could help to individualise non-
clinical support systems (eg, counselling, education, or
personal coaching) and facilitate self-awareness.
DSM-5 includes a new diagnosis named social
(pragmatic) communication disorder. Reanalysis of
epidemiological data with this new distinction in mind
suggests that some children previously diagnosed as
having autism spectrum conditions would now be
classified as having social (pragmatic) communication
disorder.116 The frequency of such classification shift in
adults has not been investigated. Although DSM-5
differentiates between autism spectrum disorder and
social (pragmatic) communication disorder for diagnosis
www.thelancet.com/psychiatry Vol 2 November 2015

in practice, whether they differ qualitatively is questionable.
Furthermore, the creation of a separate category for social
(pragmatic) communication disorder but emphasising
that autism spectrum disorder is on a spectrum is
paradoxical.117 Thus, although in clear cases individuals are
assigned to one or other DSM-5 category, forced
differentiation between the two in borderline cases could
be arbitrary and increase confusion. Acknowledgment of
the continuous nature between the two diagnoses and
adoption of dimensional views are better to form a basis
for individualised planning of support.
Eating disorders, though phenotypically distinct, have
been linked to the autism phenotype, particularly in girls
and women.118,119 In some patients eating disorders might
obscure underlying autism spectrum conditions,
reflected, for example, by extreme rigidity in eating,
being fussy eaters or not wanting to mix food, or
obsessive interest (eg, in counting calories, body shape,
or weight).118,119 Equally, people with anorexia nervosa
might show self-centredness and reduced cognitive
empathy that resemble those in autism spectrum
conditions.120,121 Individuals with eating disorders and
those with autism spectrum conditions sometimes also
share common underlying cognitive phenotypes, such as
heightened attention to detail.122
Increased frequency of autism spectrum conditions123
and strong autistic traits124 have been reported in youths
and adults125 with gender dysphoria, especially in female-
to-male transgender individuals.126 Increased frequency
of gender dysphoria has also been noted in women with
autism spectrum conditions.127 The exact nature of the
relation between gender dysphoria and autism spectrum
conditions needs to be clarified. In practice, increased co-
occurrence suggests the need for targeted assessment.
Although data show no significant increase in
substance misuse in adults with autism spectrum
conditions,35 clinical assessment of whether substances
are used to make social interaction easier, self-medication
to relieve stress and anxiety, or whether drugs have
become an obsessive focus is important. Whether an
individual with an autism spectrum condition is being
exploited should also be explored.
Finally, synaesthesia, or a mixing of the senses, is not a
psychiatric disorder but has increased frequency in
people with autism spectrum conditions.128 This increase
is possibly due to shared mechanisms of neural
connectivity or reflecting increased attention on sensory
functioning.
Support and intervention
Receiving first-time diagnosis of autism spectrum
conditions in adulthood is important clinically (eg, to
help access services), psychologically, and socially.24,129,130
The diagnosis can be a relief because it provides a
framework through which to explain longstanding
interpersonal, social, and sensory-perceptual difficulties
and make sense of feelings of difference or being on the
www.thelancet.com/psychiatry Vol 2 November 2015
Review
margins.130,131 Additionally, diagnosis can help with self-
acceptance, which can be empowering,24,38,129 and might
also facilitate identity formation, which helps individuals
to embrace their strengths and difficulties as parts of the
self38 rather than being attributed to a disease that needs
to be cured or eradicated.
After a diagnosis is made, individuals might wish to be
directed towards support services. Receiving a diagnosis
could also prompt the individual to make friends with
others on the spectrum and make them feel included in a
community (in person or in online forums, such as Wrong For more on the online forum
Planet). Such changes can reduce social isolation.129,130 Wrong Planet see
http://wrongplanet.net
Along with sufficient information dissemination and
education to increase public awareness and under-
standing of autism spectrum conditions and to reduce
negative stereotypes and inadequate expectations,
making a diagnosis can also positively affect family,
friends, service providers, and employers. Adjustments
may be made to improve interactions, assist the
individual, and form realistic expectations (eg, adjusting
communication to be clear and direct and avoiding
ambiguity and metaphoric language). In the workplace
or educational settings, potentially helpful changes are
allowing students with autism spectrum conditions to
learn through private study rather than public lectures,
improved tolerance of the need for predictability (eg,
sitting in the same chair and position on every occasion),
acknowledgment and respect of repetitive behaviour as a
possible coping mechanism, and awareness of how the
sensory environment might exacerbate specific symp-
toms.24,38,132 Family members might feel relief and
absolution of guilt over whether their way of interacting
with the individual earlier in his or her life could have
prevented atypical behaviour.38 Negative effects of
diagnosis in adults and family members, such as
concerns about the risk of stigma36 or a sense of
hopelessness, should be carefully handled through
counselling. Career choices might also be affected. For
example, the Israeli Defence Force positively employs
people with autism spectrum conditions because
excellent pattern recognition skills can aid in detection of
threats from aerial photographs.133
Various psychosocial intervention models for adults
with autism spectrum conditions have been proposed,
such as social skill training and applied behaviour
analysis approaches. Systematic reviews have shown a
shortage of rigorous empirical evidence supporting
particular models, although reported effects are
generally positive.134–136 Vocational support (eg, training
in interview skills137 and supported employment138) has
practical implications but requires more empirical
evidence to establish actual benefits.139 Stress reduction
(eg, through mindfulness-based therapy) and anxiety
management (eg, through cognitive behavioural
therapy)140–142 are receiving increasing attention, as it has
been acknowledged that effective ways to support adults
with autism spectrum conditions are not necessarily
1023
 Review
those aimed at “improving” social capabilities, but rather
those that reduce stress and anxiety related to social or
sensory overload. A priority is to adapt widely available
psychological therapies to make them more suitable for
people with autism spectrum conditions. For instance,
in the formulation for cognitive behavioural therapy
maladaptive schema need to be understood in the light
of core cognitive features of autism spectrum conditions,
and habilitation (ie, building skills that were not learned
previously) is an important clinical goal to help the
building of new social and coping skills (perhaps via
atypical routes).143 The special interests of adults with
autism spectrum conditions might be possible to use to
develop new skills or to neutralise depressive symptoms
and to reactivate individuals.
Treatment of comorbid disorders is a pivotal clinical
issue in which psychotherapeutic interventions and
pharmacotherapy both play important parts. Medications
with potential benefits include stimulants and
atomoxetine to treat symptoms of attention deficit
hyperactivity disorder,144 antidepressants to treat anxiety,
depression, and obsessive-compulsive disorder, mood
stabilisers to treat bipolar disorder,92 and atypical
antipsychotics to treat irritability and impulsivity (eg,
aripiprazole and risperidone).145 Generic treatments used
for comorbidities as they occur in the general population
might be insufficient in the context of autism spectrum
conditions. For example, if the depression is secondary to
social isolation or poor social support owing to autism
spectrum conditions, the management strategy should
include improving these social factors.
Support for adults with autism spectrum conditions
should target the individual but also physical and social
environments to create understanding and acceptance
and improve person–environment fit. This extended
approach will involve multiple agencies in the
community, and is best driven by governmental policy
See Online for appendix (appendix).22
Conclusions and future directions
With improved awareness that autism spectrum conditions
in adulthood might have been missed owing to previous
diagnostic restrictions, increasing numbers of adults are
now receiving appropriate and timely diagnoses. Support
after diagnosis, however, remains insufficient in many
areas.22,36 Unlike acute disorders for which support might
be short-term, pathways to support adults with autism
Search strategy and selection criteria
We identified references by searching PubMed, PsycINFO, and
Google Scholar for articles published from January, 2000, to
May, 2015. We used the search terms “autism”, “autism
spectrum disorder”, “pervasive developmental disorder”,
“Asperger syndrome”, and “adult”. We identified relevant earlier
articles by searching the reference lists of retrieved papers.
1024
spectrum conditions might need to be lifelong, or at least
accessible at times of crisis. Additionally adequate resources
should provide support to prevent crises. An example of
good practice is providing a personal mentor for each adult
with autism spectrum conditions to help them navigate
social environments, similar to people who are visually
impaired needing guide dogs or other aids and long-term
assistance to help them navigate physical environments.
Mental health professionals working with adults need to
consider neurodevelopmental disorders, including autism
spectrum conditions, as possible basic biological syndromes
that affect current mental health issues.38 Research into
improving the understanding of individuals diagnosed in
adulthood as having autism spectrum conditions is urgently
needed, and should focus on lifespan development and
ageing7 and evidence-based support strategies.36,134,135,138,145
Creating supportive, accepting, and autism-friendly social
and physical environments where individual differences are
respected and valued requires coordinated efforts across
disciplines, agencies, and communities, with support from
governmental policies.
Contributors
Both authors did the literature search and integration and wrote the paper.
Declaration of interests
We declare no competing interests.
Acknowledgments
M-CL is supported by the William Binks Autism Neuroscience
Fellowship and Wolfson College, Cambridge, UK, and the O’Brien
Scholars Program within the Child and Youth Mental Health
Collaborative at the Centre for Addiction and Mental Health and the
Hospital for Sick Children, Toronto, ON, Canada. SB-C is supported by
the Wellcome Trust, UK Medical Research Council, the Autism
Research Trust, and the National Institute for Health Research
Collaboration for Leadership in Applied Health Research and Care
East of England at Cambridgeshire and Peterborough NHS
Foundation Trust. Both authors are members of the European Autism
Interventions—A Multicentre Study for Developing New Medications
(EU-AIMS) consortium. EU-AIMS receives support from the
Innovative Medicines Initiative Joint Undertaking under grant
agreement number 115300, resources of which are composed of
financial contribution from the European Union’s Seventh Framework
Programme (FP7/2007–2013), EFPIA companies, and Autism Speaks.
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