REVIEW

CURRENT
OPINION Autism spectrum disorder: outcomes in adulthood
Patricia Howlin a,b and Iliana Magiati c

Purpose of review
Until recently, there has been little systematic study of adult life among individuals with autism spectrum
disorder (ASD) but recognition of the high psychological and social costs of ASD has led to an increase in
adult-focused research over the past decade. The aim of this review is to summarize recent empirical
findings on outcomes for adults with ASD.
Recent findings
Most research on adult outcomes in ASD indicates very limited social integration, poor job prospects and
high rates of mental health problems. However, studies vary widely in their methodology, choice of
measures and selection of participants. Thus, estimates of how many adults have significant social and
mental health problems are often conflicting. There is little consistent information on the individual, familial
or wider social factors that may facilitate more positive social and psychological outcomes. There is a
particular dearth of research on older individuals with ASD.
Summary
The very variable findings reported in this review reflect the problems of conducting research into lifetime
outcomes for individuals with a condition as heterogeneous as ASD. Much more systematic research is
needed to delineate different patterns of development in adulthood and to determine the factors influencing
these trajectories.
Keywords
adulthood, aging, autism, autism spectrum disorder, developmental trajectories, outcome

INTRODUCTION Articles were selected from a literature search

The estimated prevalence of autism spectrum (conducted in October 2016) of PsycINfo, Medline
disorder (ASD) in adults is high (11/1000 [1 ]),
& and Google Scholar. The search was limited to
and there are increasing concerns about the poor peer reviewed articles published in English from 1
long-term outcome for so many individuals with January 2015 to 30 September 2016. (See references
this condition. Health economists [2 ] also high-
& for details of search strategy.) Articles were included
light the high financial costs, predicting that annual in the review if: the focus was on broader social/
medical and nonmedical costs of ASD in the United lifetime outcomes in ASD (i.e. individuals with
States will be $268 billion for 2015 and $461 billion autism, Asperger syndrome/disorder and autism
&
for 2025 [2 ]. Much of this expenditure is for adults, spectrum disorder); samples were of adequate size
largely because of the costs of medical care, residen- (n >20); average cohort age was 18þ (any IQ level).
tial or supported living accommodation and pro- The search identified 1525 articles relating to adults
ductivity loss, both by caregivers and by individuals with ASD; of these, 43 met inclusion criteria for the
themselves. present review. Additional references outside the

AIMS
a
Department of Psychology, Institute of Psychiatry, Psychology and
The aim of the present article is to review data from
Neuroscience, King’s College, London, UK, bFaculty of Health Sciences,
recent studies on adults with ASD with respect to: University of Sydney, Sydney, New South Wales, Australia and
c
Department of Psychology, National University of Singapore, Singapore
(1) Social outcomes Correspondence to Patricia Howlin, PhD, MSc, BA, Department of
(2) Trajectories of change over time Psychology, Institute of Psychiatry, Psychology and Neuroscience, King’s
(3) Factors related to outcome College, London SE58AF, UK. E-mail: patricia.howlin@kcl.ac.uk
(4) Mental health Curr Opin Psychiatry 2017, 30:69–76
(5) Mortality and aging DOI:10.1097/YCO.0000000000000308

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Copyright © 2017 Wolters Kluwer Health, Inc. All rights reserved.

Neurodevelopmental disorders
KEY POINTS
 Research on outcomes in adult life for individuals with
ASD is growing, but findings remain inconsistent and
often conflicting.
 There is contradictory evidence on how many
individuals with ASD achieve good outcomes as adults,
and lack of agreement on how this should be measured
or how prognosis might be improved.
 In particular, data on psychiatric comorbidities in
adulthood vary widely, and it remains uncertain how
many individuals do experience serious mental
health problems.
 Nevertheless, despite lack of agreement between
studies, overall outcomes for adults with ASD in terms
of jobs, relationships, independent living and mental
health are considerably poorer than for same
age peers.
 Knowledge about factors that are associated with
good, or poor, social and psychological outcomes
remains very limited, with few studies considering
family, school or wider social influences.
specified date range are included in order to place
current research in context.
SOCIAL OUTCOMES IN ADULTHOOD
Assessments based on ‘normative’ measures
of social functioning
Previous systematic reviews, focusing on ‘norma-
tive’ measures of social outcomes in ASD (i.e. objec-
tive measures of employment, independence, social
participation and relationships) [3] have concluded
that, even among cohorts of average intelligence,
most individuals remain highly dependent on
others for their care, social contacts are limited
and employment rates are extremely low. Moreover,
adults with ASD are more economically, education-
ally and socially disadvantaged than adults with
other developmental or intellectual disabilities [4].
&&
A recent systematic review [5 ] (12 studies pub-
lished from 1967 to 2013; n ¼ 828) indicates little
change in these conclusions. Outcomes were rated
as in previous reviews [3] (i.e. ‘very good’ ¼ high
independence and social functioning; ‘good’ ¼
some level of employment, some friends, largely
independent; ‘fair’ ¼ requires some support in daily
living; ‘poor’ ¼ requires substantial support/residen-
tial care; and ‘very poor’ ¼ long-stay secure care).
Forty-eight per cent of participants were rated as
having a ‘poor’/‘very poor’ outcome, and only 20%
were deemed to have a ‘good’ or ‘very good’
70 www.co-psychiatry.com
Copyright © 2017 Wolters Kluwer Health, Inc. All rights reserved.
outcome. However, the authors also highlight the
wide variability in findings. Thus, the mean esti-
mated percentage of individuals with a ‘good out-
come’ was 20% but with 95% confidence intervals
(CIs) varying from 14 to 27% across studies;
similarly, the 95% CIs for ‘poor outcome’ ranged
from 37 to 59%.
This variability is evident in subsequent studies.
&
Within a French cohort [6 ] of adults of mixed IQ
and autism severity (n ¼ 76; age 18–54 years), two
thirds had a ‘poor’ or ‘very poor’ outcome and even
among those rated as having a ‘good outcome’,
none was living independently. A US-based, online
&
survey [7 ] completed by parents/carers of 143 indi-
viduals with ASD (mean age 25 years) revealed that
only 22% were in work, 7% lived independently,
whereas 87% were on benefits.
Cohorts involving more cognitively and
verbally able adults generally report more positive
results, although, again figures vary. Among 50
adults with Asperger syndrome (mean childhood
IQ 100þ; mean current age 30 years) living in Swe-
&
den [8 ], 40% were in full time education or inde-
pendent work, 62% were living independently, 48%
had two or more friends and 52% either currently or
in the past had a partner (14% of these were married/
cohabiting). In a German cohort of 50 adults with
&
Asperger syndrome [9 ] (mean age 36 years), 46%
were currently employed, and 28% had a partner;
however, 50% depended on their families or state
benefits for support and 28% were still living with
&
their parents. The US survey [7 ] also collected data
from 255 adults with ASD (mean age 38 years) who
were able to report on their own status. They
recorded relatively high levels of education (42%
batchelors degree or higher), employment (47%)
and independent living/living with a spouse or
partner (67%). Employment figures in this study
are considerably higher than reported for another
&
US cohort [10 ] of individuals with ASD of average
IQ (n ¼ 73, mean age 24 years), among whom only
one quarter was consistently employed. Neverthe-
&
less, even within the former sample [7 ], over half
were unemployed and many (36%) were dependent
on federal or state benefits.
Subjective assessments of social outcomes
and quality of life
The wide variability in outcomes across studies has
led to concerns that standard concepts of what
constitutes a ‘good’ social outcome may not always
be relevant for people with ASD. For example,
higher social achievements for some individuals
may come at the cost of higher stress and poorer
&&
mental health [11 ]. It has been suggested [11 ]
&&
Volume 30  Number 2  March 2017

that when subjective factors such as satisfaction
with life, good physical and mental health, adequate
living conditions, supportive and fulfilling social
and family relationships are taken into account,
adult outcomes may be more positive than usually
reported. Thus, within a US cohort studied over
several decades [12 ] (n ¼ 60; mean age 32 years),
&&
many participants experienced relatively good sub-
jective Quality of Life (QoL) and their mean scores
on the World Health Organization Quality of Life
measure [13] were comparable with those of the
general population. In the Swedish cohort of indi-
&
viduals with Asperger syndrome [8 ], scores on a
subjective quality of life measure [14] were also
within the average normative range (albeit at the
lower end of that range). Nevertheless, despite these
more positive findings, a recent meta-analysis of
&&
studies of QoL across the lifespan [15 ] concluded
that individuals with ASD, including those of higher
intellectual and verbal ability, have a poorer QoL
than their non-ASD peers.
TRAJECTORIES OF CHANGE OVER TIME
Research on trajectories of development in ASD
generally indicates improvements over time
& & & &&
[8 ,16 ,17 ,18 ] but, again, there is considerable
variability. An 8–10 year follow-up [16 ,17 ] in
& &
the United States of over 300 individuals (mean
age at follow-up 22 years; 70% with IQ < 70) found
that one-third (35%) showed improvements in non-
verbal communication, 58% in verbal communi-
cation, 40% in social interaction and 61% in
repetitive/stereotyped behaviors and interests. Mal-
adaptive behaviors improved in 42%. Only 12%
showed a worsening in total autism symptoms
and 11% in maladaptive behaviors.
Another longitudinal study in the United States
&&
[18 ] examined progress in 85 individuals first seen
as children. In early adulthood (mean age 19 years),
most (77, 91%) continued to meet ASD criteria; of
these, 53 had an IQ below 70 and 24 had an IQ of at
least 70. Eight individuals (all IQ>70) who no longer
met criteria were described as having a ‘Very Positive
Outcome’ (VPO). Trajectories of change (IQ, com-
munication, social functioning and repetitive
behaviors) among the VPO group were significantly
more positive than for participants with IQ below
70. There were also some significant differences
between the VPO group and participants of average
IQ who still met diagnostic criteria. The authors
suggest that further research focusing on different
patterns of developmental trajectories may be
important for identifying different genetic causes
as well as having implications for more individually
tailored interventions.
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Adult outcomes in ASD Howlin and Magiati
Is there ‘recovery’ from autism spectrum
disorder?
The identification of individuals with ‘Very Positive
&&
Outcomes’ [18 ] raises the question of whether
there can be ‘recovery’ from ASD. The Swedish
& &
follow-up [8 ,19 ] also identified a small group of
adults (11 out of 50) who no longer met diagnostic
criteria for ASD. All had an IQ in the average range,
had friends and were living independently, and all
but one was employed. Nevertheless, although
eight, either currently or in the past, had a partner
or were married, romantic relationships were lower
than in the general population; three also had some
current psychiatric comorbidity. An earlier study
[20] described 34 children (mean age 12 years; mean
IQ 111) who, although initially meeting ASD
criteria, were currently functioning ‘within normal
limits’. Recent, more detailed data analyses, how-
ever, [21–23] indicate persisting subtle difficulties in
social understanding, pragmatic communication,
attention, self-control and emotional maturity
and in psychiatric morbidity. As yet, there are no
data on this cohort in adulthood and it is uncertain
whether these remaining differences will abate or
become more evident with age.
FACTORS RELATED TO SOCIAL
OUTCOMES IN ADULTHOOD
Intellectual and verbal functioning
Intellectual and verbal functioning in childhood are
among the strongest prognostic indicators in ASD
[3]. Few individuals with a childhood IQ below 70,
or who fail to develop functional speech, live inde-
pendently as adults and job prospects and social
integation are particularly poor. In addition, they
show less improvement in cognitive or social skills,
and greater increases in ritualistic behaviors over
time than individuals with an average IQ in child-
& & &&
hood [16 ,17 ,18 ]. Nonverbal mental age at 2 years
is also predictive of independence in daily living
&
skills at age 21 [24 ]. Unsurprisingly, too, persisting
communication and intellectual impairments in
adulthood (especially if associated with epilepsy)
are associated with low levels of social attainments
&
and independence [6 ]. Nevertheless, even among
individuals with a childhood IQ at least 70, out-
comes can vary widely. Some show very few autism
symptoms or cognitive difficulties as young adults,
whereas others continue to experience significant
&&
problems [18 ]. The relationship between IQ and
outcome in higher functioning samples also
depends on the variables studied. Thus, among
& &
the Swedish Asperger syndrome cohort [8 ,19 ],
current IQ correlated highly with academic success,
www.co-psychiatry.com 71
Neurodevelopmental disorders
but not with independent living, friendships or
marital status.
Autism symptom severity
Another established predictor of adult outcome is
& &
autism severity [3]. In the Swedish study [8 ,19 ],
higher levels of autism symptomatology, both in
childhood and adulthood, were associated with
reduced independence, lower rates of employment
and more limited social relationships. Similarly,
&
within the French cohort [6 ], no adults with a
childhood diagnosis of ‘severe autism’ were judged
to have a ‘good’ outcome; in contrast, 40% of those
with ‘moderate autism’ and all those with a child-
hood diagnosis of Asperger syndrome were rated as
having a ‘good’ outcome.
Gender
The role of gender remains uncertain as most studies
&
involve so few women [25 ]. There are some sugges-
tions that women with ASD have poorer social out-
&
comes, especially with respect to employment [10 ]
&&
and quality of life [11 ] than men. However, other
& &&
studies [16 ,26 ] report no significant impact of
gender on autism symptoms, behavior problems
or social outcomes.
Family/environmental factors
In the community sample followed up over 8–10
& &
years in the United States [16 ,17 ], higher levels of
inclusion in social and academic activities in school
were associated with more positive outcomes, over
and above individual characteristics such as age, IQ
and sex. Greater maternal praise/positivity in child-
hood also predicted higher levels of nonverbal com-
munication and social reciprocity in adulthood;
increases in maternal praise over time were associ-
ated with decreases in externalizing behaviors. In
addition, quality of mother–child relationship was
significantly associated with fewer maladaptive
behaviors at follow-up; improvements in mother–
child relationships were related to a decline in
behavioral and social problems. Other research
&& &&
[11 ,12 ] has also highlighted the positive impact
of maternal warmth on adult quality of life, along
with factors such as physical health, greater inde-
pendence in daily living skills and better executive
function.
More recently, the specific impact of stress has
received attention. Among 25 Swedish adults (mean
&
age 34 years) [27 ], greater perceived stress was
associated with more severe autism symptoms and
& &
poorer coping in adulthood. A US study [28 ,29 ] has
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Copyright © 2017 Wolters Kluwer Health, Inc. All rights reserved.
also explored the effects of stress in two groups of
adults with ASD (n ¼ 38, 40; mean ages 23–24 years;
rates of employment 37–47%; and living independ-
ently 17–21%). These adults experienced signifi-
cantly more stressful life events and stress than
community controls, and levels of global stress sig-
nificantly predicted overall social functioning and
social disability. In a long-term follow-up in the
&&
United States [12 ], current levels of perceived
stress, together with frequency of bullying in child-
hood, were the two factors consistently linked
with poorer adult self-reported quality of life. In
turn, good quality of life was positively correlated
with better-developed daily living skills and good
physical health.
Mental health
Data on rates of psychiatric disorders in ASD are
&
highly variable. In a UK longitudinal study [30 ] of
58 adults originally diagnosed as children (mean IQ
69; mean age 44 years), 28% had at some time
experienced mild-to-moderate mental health prob-
lems, and 28% had severe or very severe difficulties.
&
A retrospective case review [31 ] of 474 adults
attending an ASD diagnostic clinic in the UK found
that around half (57%) had a comorbid psychiatric
disorder. A similar figure (54%) was reported in a
large US database study [32 ] (n ¼ 1507 adults with
&&
ASD). In the Swedish cohort with Asperger syn-
&
drome [19 ], 54% had a current diagnosis but almost
all (94%) met lifetime criteria for a comorbid psy-
chiatric/neurodevelopmental disorder. In a Dutch
cohort [33 ] including older adults (n ¼ 172, age
&&
19–79 years, IQ > 80), 79% met criteria for a psy-
chiatric disorder at least once in their lives. Among
participants with Asperger syndrome in the German
&
cohort [8 ], 70% had at one or more psychiatric
&
comorbidities. In the online US survey [7 ], 86%
of the self-report group and 73% of the proxy-report
group had at least one mental/behavioral comor-
bidity.
The majority of diagnoses/symptoms identified
in these studies relate to anxiety and/or depression,
but again there are many inconsistencies. Estimates
of depressive disorders range from 20 to 58% and
anxiety disorders from 22 to 39%; other commonly
reported difficulties include Attention Deficit Hyper-
activity Disorder (ADHD) (10–28%); tic disorders
(1–50%); Obsessive Compulsive Disorder (OCD)
(8–28%) and somatoform and eating disorders
&
(6–17%). Two studies [34,35 ] report high rates of
social anxiety (50–52%). Estimates of psychotic
disorders tend to be relatively low (usually around
2–4%), but again there is wide variability, with a
&
recent review recording figures from 0 to 35% [36 ].
Volume 30  Number 2  March 2017

Conflicting data on rates of mental health prob-
lems in ASD are due to many factors, including
differences in sampling, the range of conditions
selected for study and the diagnostic procedures
and measures used. Although, overall, the data
indicate that psychiatric morbidity is higher in
&&
ASD that in the general population [32 ], until
there is greater methodological consistency across
studies, it remains impossible accurately to estimate
the true risk.
Estimates of substance abuse disorders are also
contradictory. A Swedish epidemiological study
[37 ] (n ¼ 26 986 individuals with ASD and 96 557
&
controls) reported a substantially increased risk of
drug [odds ratio (OR) 8.5] and alcohol abuse/
dependence (OR 4.0); risks of substance-related
crime (OR 1.4), or deaths linked to abuse were also
&
high (OR 3.0). A German study [8 ] recorded sim-
ilarly high rates of drug abuse (12%) or alcohol-
related problems (18%). In contrast, in the US data-
&&
base [32 ], alcohol abuse/dependency was ident-
ified in 3% and drug abuse/dependency in 4%.
&
Combined rates of these problems in the UK [31 ]
&
and Swedish [19 ] samples were also low (2 and 4%,
respectively). This inconsistency is highlighted in a
recent systematic review of substance abuse in ASD
[38 ] (n ¼ 18 studies; 11 epidemiological). Although
&&
estimates were generally low, figures ranged from
0.7 to 36%, making it impossible to establish a
reliable prevalence figure. The only consistent find-
ing noted in the review was the lack of knowledge
among professionals on how to treat this group of
patients, and the dearth of intervention research.
Variables associated with adult mental
health
Although there has been little systematic explora-
tion of factors related to mental health in adults
with ASD, there is some evidence of an association
between poor mental health and poorer social func-
& &
tioning [30 ], lower life satisfaction [39 ] and higher
& & & &&
levels of autism symptoms [7 ,19 ,30 ,33 ,40].
The relation between mental health and gender
is inconsistent, probably because of the small
numbers of women in most studies. Most research
suggests that, compared with men, women are at
greater risk of anxiety and mood disorders
&& &&
[32 ,33 ] and of conditions such as dementia,
&&
schizophrenia and bipolar disorder [32 ]; men tend
&&
to have higher rates of OCD and ADHD [32 ].
& &
However, two studies [30 ,31 ] identified no signifi-
cant sex differences in overall rates or types of
mental health problems and in the German cohort
&
[8 ], whereas there were no differences in rates of
major depression, men had more anxiety symptoms
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Adult outcomes in ASD Howlin and Magiati
(53 vs. 12%) and more mood disorders than women
(32 vs. 6%).
Data on substance abuse are, yet again, contra-
&
dictory. In the German cohort [8 ], more women
than men had drug abuse problems (19 vs. 9%) but
fewer had alcohol abuse/dependence (12 vs. 20%).
&&
In contrast, in the US sample [32 ], drug/alcohol
problems were more frequent in men (drugs 5 vs.
3%; alcohol 4 vs. 2%).
Findings on the relationship between mental
health and age are equally confusing. The German
&
study [8 ] found that young adults (<40 years)
showed less psychopathology than those over 40.
&
In the US longitudinal study [39 ], women were
more likely to show greater increases in anxiety
and depressive symptoms over time, whereas ado-
lescent males had more depressive symptoms that
were maintained into young adulthood. In contrast,
&&
a study including a much wider age range [33 ]
(n ¼ 344, age 19–79 years) concluded that psycho-
pathology declined with age, with fewer adults in
the older age group (55–79 years) meeting criteria
for any psychiatric diagnosis and particularly social
phobia. Discrepancies here are likely because of the
very small number of older adults in the two
former samples.
Findings concerning the relationship with other
variables that are frequently associated with mental
health in the general population (i.e. cognitive
functioning, social economic status and living situ-
ations, as well as life events and family factors)
remain inconclusive and inconsistent.
MORTALITY AND SUICIDE IN ADULTHOOD
Many major chronic medical conditions occur sig-
nificantly more frequently in adults with ASD than
&&
in the general population [32 ], and mortality risks
are also higher. In a Danish epidemiological study
[41 ] (total n ¼ 1,912 904; n ASD ¼ 20 492), mortality
&
rates for young adults with ASD were double those in
the general population, and similar to the risk for
individuals with neurological or mental/behavioral
disorders. Comparable rates were identified in
Sweden [42] (27 122 individuals with ASD;
2,672 185 matched general population controls).
Mortality was over twice as high in the ASD group
(OR 2.56) and mean age of death was much lower
[controls 70.2 years; ASD 53.9 years (39.5 years in
those with Intellectual Disability (ID); 58.4 years in
those without ID)]. The most frequent causes of
death were nervous, circulatory, respiratory or diges-
tive disorders and congenital malformations.
Overall, death rates in men and women were
similar, but women were more likely to die from
endocrine disease, congenital malformations or
www.co-psychiatry.com 73
Neurodevelopmental disorders
suicide, and men from diseases of the nervous and
circulatory systems. The most common cause of
death in individuals with ID and ASD was epilepsy.
This study [40] also found that death by suicide
was significantly elevated among cognitively able
individuals with ASD (OR 9.4). However, there is
little consistent information on suicidal behaviors
or ideation, or how frequently these result in serious
or fatal suicide attempts, and reported rates of
suicide in ASD vary widely (from <10 to >50%)
&
[41 ]. For example, suicide attempts occurred in
&&
only 2% of the US database cohort [32 ]. In the
Swedish Asperger study [19 ] (n ¼ 50), 13 individuals
&
(26%) exhibited ongoing suicidal behavior, but only
one was considered to be at high risk. This conflicts
with an earlier study [42] in which 66% of 367
individuals with a diagnosis of Asperger syndrome
reported suicidal ideation; 35% reported plans or
attempts at suicide. Recent studies in this area
&&
[43 ,44] note the importance of more research into
the factors associated with suicide, especially in
more able individuals, and the need for more
reliable ways of identifying at-risk adults with ASD.
AGING
Although there has been very little investigation of
the impact of aging in ASD, current research
& &&
[45 ,46 ] suggests that many cognitive skills (proc-
essing speed, attention, verbal memory, cognitive
flexibility and planning, and theory of mind) show
similar patterns of decline as in typical aging. Con-
versely, individuals with ASD may be less prone to
decline in visual and working memory than elderly
&&
in the general population [46 ]. Quality of life in
ASD also seems to be less affected by age than in the
general population, but to date studies on aging in
ASD are small scale, mainly cross-sectional and con-
tain few participants aged over 60. More extensive
research in this area is crucially needed.
CONCLUSION
It is evident from this review that individuals with
ASD continue to face many challenges throughout
adulthood. Current social and health services for
& &&
adults [47,48 ,49 ,50–52] are often inadequate,
resulting in high levels of stress for both individuals
& need to improve healthcare and public services.
themselves and their families [53 ]. To date, how-
ever, methodological issues particularly related to
wide heterogeneity in the cohorts studied and
variability in the measures used, have resulted in
inconsistent and sometimes contradictory research
findings. We still do not know with any certainly
what proportion of individuals manage to attain
adequate levels of social integration as adults or
74 www.co-psychiatry.com
Copyright © 2017 Wolters Kluwer Health, Inc. All rights reserved.
how many experience a good psychological and
physical quality of life. More importantly, we are
a long way from identifying the individual, family or
environmental factors that enhance resilience and
ensure social and psychological well being in adult-
hood. High-quality adult outcome research must be
a priority if we are to meet the needs of current and
future generations of adults with ASD.
Acknowledgements
None.
Financial support and sponsorship
None.
Conflicts of interest
There are no conflicts of interest.
REFERENCES AND RECOMMENDED
READING
Papers of particular interest, published within the annual period of review, have
been highlighted as:
& of special interest
&& of outstanding interest
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Volume 30  Number 2  March 2017

10. Taylor JL, Henninger NA, Mailick MR. Longitudinal patterns of employment
& and postsecondary education for adults with autism and average-range IQ.
Autism 2015; 19:785–793.
This article focuses on the poor employment prospects of young adults with ASD.
Outcomes for women were found to be even less positive than for men.
11. Bishop-Fitzpatrick L, Hong J, Smith LE, et al. Characterizing objective quality
&& of life and normative outcomes in adults with autism spectrum disorder: an
exploratory latent class analysis. J Autism Dev Disord 2016; 46:2707–
2719.
The authors draw attention to the need for broader measures of outcome in ASD,
rather than focusing on ‘normative’ measures such as rates of employment/
independent living and so on. More positive outcomes are associated with better
daily living skills, better executive function and more maternal warmth.
12. Hong J, Bishop-Fitzpatrick L, Smith LE, et al. Factors associated with sub-
&& jective quality of life of adults with autism spectrum disorder: self-report versus
maternal reports. J Autism Dev Disord 2016; 46:1368–1378.
This article compared self-rated and parent-rated quality of life among adults with
autism. The agreement between self-report and proxy report was good. Factors
related to better quality of life included independence in daily activities and physical
health. Higher levels of perceived stress and bullying were associated with poorer
quality of life.
13. Skevington SM, Lotfy M, O’Connell KA. The World Health Organization’s
WHOQOL-BREF quality of life assessment: psychometric properties and
results of the international field trial. A report from the WHOQOL group. Qual
Life Res 2004; 13:299–310.
14. Pallant JF, Lae L. Sense of coherence, well being, coping and personality
factors: further evaluation of the sense of coherence scale. Pers Individ Dif
2002; 33:39–48.
15. van Heijst BF, Geurts HM. Quality of life in autism across the lifespan: a meta-
&& analysis. Autism 2015; 19:158–167.
Meta-analysis of 10 studies (2004–2012; n ¼ 486 people with autism and 17 776
controls). Data indicated that, across the lifespan, people with autism experience a
much lower quality of life compared with people without autism. However, age did
not have an effect on quality of life.
16. Woodman AC, Smith LE, Greenberg JS, Mailick MR. Change in autism
& symptoms and maladaptive behaviors in adolescence and adulthood: the
role of positive family processes. J Autism Dev Disord 2015; 45:111–126.
The authors report improvements in autism symptoms and maladaptive behaviors
over 8.5 years in a large, community-based sample of adolescents and adults.
17. Woodman AC, Smith LE, Greenberg JS, Mailick MR. Contextual factors
& predict patterns of change in functioning over 10 years among adolescents
and adults with autism spectrum disorders. J Autism Dev Disord 2016;
46:176–189.
Exploration of factors associated with positive trajectories over time identified the
importance of educational inclusion and maternal praise/warmth.
18. Lord C, Bishop S, Anderson D. Developmental trajectories as autism phe-
&& notypes. Am J Med Genet Part C: Semin Med Genet 2015; 169:198–208.
This article examined trajectories of development in 85 individuals with autism
followed into young adulthood. Three distinct groups were identified: adults with
intellectual disability and persistent ASD; adults with IQs in the average range who
continued to show ASD impairments and a small group (n ¼ 8) with IQs in the
average range who were judged to be functioning at age appropriate levels at age
19 years, despite a previous childhood diagnosis of ASD. The findings have
potentially important implications for understanding subtypes of autism and
developing more individually tailored interventions.
19. Gillberg IC, Helles A, Billstedt E, Gillberg C. Boys with Asperger syndrome
& grow up: psychiatric and neurodevelopmental disorders 20 years after initial
diagnosis. J Autism Dev Disord 2016; 46:74–82.
The authors report very high rates (94%) of psychiatric comorbidities in 50 adult
males diagnosed with Asperger syndrome. These rates are considerably higher
than in several other adult outcome studies.
20. Fein D, Barton M, Eigsti IM, et al. Optimal outcome in individuals with a history
of autism. J Child Psychol Psychiatry 2013; 54:195–205.
21. Orinstein A, Tyson KE, Suh J, et al. Psychiatric symptoms in youth with a
history of autism and optimal outcome. J Autism Dev Disord 2015; 45:3703–
3714.
22. Orinstein AJ, Suh J, Porter K, et al. Social function and communication in
optimal outcome children and adolescents with an autism history on struc-
tured test measures. J Autism Dev Disord 2015; 45:2443–2463.
23. Suh J, Orinstein A, Barton M, et al. Ratings of broader autism phenotype and
personality traits in optimal outcomes from autism spectrum disorder. J Autism
Dev Disord 2016; 46:3505–3518.
24. Bal VH, Kim SH, Cheong D, Lord C. Daily living skills in individuals with autism
& spectrum disorder from 2 to 21 years of age. Autism 2015; 19:774–784.
Authors found that nonverbal mental age, receptive language and social-commu-
nication impairment in early childhood predicted levels of daily living skills in young
adults with ASD. They suggest that daily living skills should be a focus of treatment
particularly for adolescents transitioning to adulthood.
25. Halladay AK, Bishop S, Constantino JN, et al. Sex and gender differences in
& autism spectrum disorder: summarizing evidence gaps and identifying emer-
ging areas of priority. Mol Autism 2015; 6:1.
Discussion article highlighting how little is known about the role of sex and gender
in ASD.
0951-7367 Copyright ß 2017 Wolters Kluwer Health, Inc. All rights reserved.
Copyright © 2017 Wolters Kluwer Health, Inc. All rights reserved.
Adult outcomes in ASD Howlin and Magiati
26. Kirby AV, Baranek GT, Fox L. Longitudinal predictors of outcomes for adults
&& with autism spectrum disorder systematic review. OTJR: Occup Particip
Health 2016; 36:55–64.
Systematic review of research on predictors of outcome in ASD. Most studies
were found to be of poor quality methodologically. The impact of most factors was
inconsistent, but individual variables (IQ and so on) appear to be most important.
27. Hirvikoski T, Blomqvist M. High self-perceived stress and poor coping in
& intellectually able adults with autism spectrum disorder. Autism 2015;
19:752–757.
Adults with ASD found to have significantly higher subjective stress and
poorer ability to cope with stress compared with typical adults. Higher levels
of autistic traits were associated with higher levels of stress and poorer coping
ability.
28. Bishop-Fitzpatrick L, Mazefsky CA, Minshew NJ, Eack SM. The relationship
& between stress and social functioning in adults with autism spectrum disorder
and without intellectual disability. Autism Res 2015; 8:164–173.
See note to 29
29. Bishop-Fitzpatrick L, Minshew NJ, Mazefsky CA, Eack SM. Perception of life
& as stressful, not biological response to stress, is associated with greater
social disability in adults with autism spectrum disorder. J Autism Dev Disord
2016; DOI: 10.1007/s10803-016-2910-6.
This and reference [28] report on high levels of stress in adults with ASD and their
greater exposure to stressful events. In turn, these are significantly associated with
social disability. The authors highlight the need for more interventions targeting
stress management.
30. Moss P, Howlin P, Savage S, et al. Self and informant reports of mental health
& difficulties among adults with autism findings from a long-term follow-up study.
Autism 2015; 19:832–841.
Self and informant reports of psychiatric comorbidities in adults with ASD in their
mid-40s indicate that around half have some mental health problems. However,
over 40% had experienced no psychiatric problems in adulthood.
31. Russell AJ, Murphy CM, Wilson E, et al. The mental health of individuals
& referred for assessment of autism spectrum disorder in adulthood: a clinic
report. Autism 2016; 20:623–627.
Clinical case note study of 474 adults with ASD. Just over half (57%) had a
history of psychiatric problems. As in the previous study [30], this rate is higher
than in the general population, but considerably less than reported in some other
studies.
32. Croen LA, Zerbo O, Qian Y, et al. The health status of adults on the autism
&& spectrum. Autism 2015; 19:814–823.
Very informative article on physical and mental health problems in a large cohort of
adults with ASD identified via an insurance database. Although such sampling is
prone to a number of biases, the large size of the sample and the detailed
information included provide valuable insight into the frequency and range of
problems experienced by individuals with ASD.
33. Lever AG, Geurts HM. Psychiatric co-occurring symptoms and disorders in
&& young, middle-aged, and older adults with autism spectrum disorder. J Autism
Dev Dis 2016; 46:1916–1930.
In this study of 344 adults with ASD aged 19–79 years, 79% had a history of
psychiatric disorder (mainly depression and anxiety). However, older adults were
less likely to experience mental health problems than younger individuals. The
discrepancies in reported rates of psychiatric difficulties across studies (e.g. 19,
30, 31, 32 and 37), and disagreements concerning the association with age,
highlight the need for more systematic research in this area.
34. Maddox BB, White SW. Comorbid social anxiety disorder in adults with
autism spectrum disorder. J Autism Dev Disord 2015; 45:3949–3960.
35. Spain D, Happé F, Johnston P, et al. Social anxiety in adult males with autism
& spectrum disorders. Res Autism Spect Disord 2016; 32:13–23.
As in reference [33], the authors report high rates of social anxiety (52%) in
adults with ASD. The article concludes that more research is needed to ascertain
the prevalence social anxiety in ASD and to identify triggers and maintaining
factors.
36. Chisholm K, Lin A, Abu-Akel A, Wood SJ. The association between autism
& and schizophrenia spectrum disorders: a review of eight alternate models of
co-occurrence. Neurosci Biobehav Rev 2015; 55:173–183.
Very useful review of studies on the association between autism and schizophre-
nia. The article highlights the large discrepancies between many studies in this
area and explores possible reasons for these inconsistencies.
37. Butwicka A, Långström N, Larsson H, et al. Increased risk for substance
& use-related problems in autism spectrum disorders: a population-based
cohort study. J Autism Dev Disord 2016; 1–0. doi:10.1007/s10803-016-
2914-2.
These authors identify very high rates of substance abuse in ASD and in their
siblings and parents. They conclude that ASD is a risk factor for substance abuse-
related problems. However, other studies (e.g. [36]) have not identified this as a
significant problem in ASD; reasons for these conflicting findings remain unclear.
38. Arnevik EA, Helverschou SB. Autism spectrum disorder and co-occurring
&& substance use disorder: a systematic review. Substance Abuse: Res Treat
2016; 10:69–75.
A systematic review (18 articles) of substance abuse in ASD. The authors
conclude that overall comorbidity rates appear to be low, but lack of agreement
across studies makes difficult to establish a general prevalence rate. The authors
highlight the lack of high-quality research in this area.
www.co-psychiatry.com 75
Neurodevelopmental disorders
39. Gotham K, Brunwasser SM, Lord C. Depressive and anxiety symptom
& trajectories from school age through young adulthood in samples with autism
spectrum disorder and developmental delay. J Am Acad Child Adolesc
Psychiatry 2015; 54:369–376.
Study of trajectories of psychiatric disorders in 109 individuals with ASD. Rates of
affective and anxiety disorders were high, but men and women showed different
patterns of change over time.
40. Garcı́a-Villamisar D, Rojahn J. Comorbid psychopathology and stress mediate
the relationship between autistic traits and repetitive behaviours in adults with
autism. J Intell Disabil Res 2015; 59:116–124.
41. Schendel DE, Overgaard M, Christensen J, et al. Association of psychiatric
& and neurologic comorbidity with mortality among persons with autism
spectrum disorder in a Danish population. JAMA Pediatr 2016;
170:243–250.
Large epidemiological study identified high risks of early mortality in individuals
with ASD. The presence of comorbid mental/behavioral or neurologic conditions
significantly increased the risk of early death (2.6-fold to 7.6-fold) compared with
individuals without ASD.
42. Cassidy S, Bradley P, Robinson J, et al. Suicidal ideation and suicide
plans or attempts in adults with Asperger’s syndrome attending a specialist
diagnostic clinic: a clinical cohort study. Lancet Psychiatry 2014; 1:142–
147.
43. Hirvikoski T, Mittendorfer-Rutz E, Boman M, et al. Premature
&& mortality in autism spectrum disorder. Br J Psychiatry 2016; 208:232–
238.
Important epidemiological study highlighting greatly increased risks of premature
mortality in ASD. The study also identifies factors that appear to be associated with
a greater risk of early death. The presence of a range of different comorbid medical/
neurological conditions was associated with a higher risk of death, especially
among women with intellectual disability. Individuals of average intellectual ability
had a high risk of suicide. The authors stress the need for more research into
factors related to early death in ASD.
44. Salvatore T, Brown J, Hastings B, et al. Suicide risk in adults with
autism spectrum disorder: an exploratory discussion. J Special Popul
2016; 1:1–11.
45. Lever AG, Werkle-Bergner M, Brandmaier AM, et al. Atypical working memory
& decline across the adult lifespan in autism spectrum disorder? J Abnormal
Psychol 2015; 124:1014.
See note to [46].
76 www.co-psychiatry.com
Copyright © 2017 Wolters Kluwer Health, Inc. All rights reserved.
46. Lever AG, Geurts HM. Age-related differences in cognition across the adult
&& lifespan in autism spectrum disorder. Autism Res 2016; 9:666–676.
These authors [44], [45] are among the very few who have explored cognitive and
psychological changes in ASD in later adulthood. They have identified certain
areas of cognitive difficulty (e.g. in Theory of Mind) that seem to become less
apparent in old age in ASD; other skills (e.g. visual memory) show less decline with
age than in the general population. The authors conclude that age-related cognitive
difficulties in ASD are mainly parallel to those found in typical aging, although
deterioration in some areas may actually be reduced. They suggest that ASD could
partially protect against an age-related decrease in cognitive functioning.
47. Havlicek J, Bilaver L, Beldon M. Barriers and facilitators of the transition to
adulthood for foster youth with autism spectrum disorder: perspectives of
service providers in Illinois. Child Youth Serv Rev 2016; 60:119–128.
48. Turcotte P, Mathew M, Shea LL, et al. Service needs across the lifespan for
& individuals with autism. J Autism Dev Disord 2016; 46:2480–2489.
US study indicating that adults with ASD were in greater need of services but had less
access to a range of different services than individuals in the general population.
49. Murphy CM, Wilson CE, Robertson DM, et al. Autism spectrum disorder in
&& adults: diagnosis, management, and health services development. Neurop-
sychiatric Dis Treat 2016; 12:1669.
This article highlights the lack of health services research for adults with ASD. The
authors focus on the need for more rigorous pharmacological and pharmacological
trials, and the importance of taking into account the views of individuals with ASD
themselves.
50. Vohra R, Madhavan S, Sambamoorthi U. Comorbidity prevalence, healthcare
utilization, and expenditures of Medicaid enrolled adults with autism spectrum
disorders. Autism 2016; pii: 1362361316665222. [Epub ahead of print]
51. Vohra R, Madhavan S, Sambamoorthi U. Emergency department use among
adults with autism spectrum disorders (ASD). J Autism Dev Disord 2016;
46:1441–1454; 50.
52. Raymaker DM, McDonald KE, Ashkenazy E, et al. Barriers to healthcare:
instrument development and comparison between autistic adults and adults
with and without other disabilities. Autism 2016; pii: 1362361316661261.
[Epub ahead of print]
53. McKenzie K, Ouellette-Kuntz H, Blinkhorn A, Démoré A. Out of school and into
& distress: families of young adults with intellectual and developmental dis-
abilities in transition. J Appl Res Intell Disabil 2016; doi: 10.1111/jar.12264.
[Epub ahead of print]
This study describes the high levels of stress experienced by many families during
their sons’/daughters’ transition from school.
Volume 30  Number 2  March 2017